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Diagnosis of Migraine & Headache Types

Hemiplegic Migraine

  • By Kerry

    hmmm. i have to add a reply to read so, i will say hello, my name is kerry. diagnosed with HM six months ago. prior to that was diagnosed with simply complex migraine w/aura or basilar migraine. i’m currently taking verapamil which helps a great deal, 400mg B2, and 600-800mg of magnesium citrate solution. my attacks are much quieter now but still come about 9 days out of 10. i’m always seeking new information.

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  • By Kerry

    wow. its not that i didn’t see any posts. it’s that they’re aren’t any. ya, i know, my illness is the rarest of rare. always fun. i guess its time to go elsewhere for assistance. 🙁

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  • By Amrita Bhowmick, MPH Keymaster

    Hi Kerry, Thanks for sharing your story. It looks like you were the first one to post in this particular forum, but you may hear from others (including our moderators)…..sometimes it takes an initial post to get the discussion going!

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  • By Amrita Bhowmick, MPH Keymaster

    Kerry – I also found a few posts in the “Migraine Stories” forum which mention hemiplegic migraine. You can comment on the posts, or message the authors directly through Migraine.com messaging (click on their name to view their profile & send a message). Here are the stories:

    https://migraine.com/migraine-stories/rarer-migraine-types/
    https://migraine.com/migraine-stories/when-you-have-migraine-perseverance-will-pay-off/
    https://migraine.com/migraine-stories/from-a-car-accident-to-daily-migraines-my-life-changed/

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  • By Ellen Schnakenberg

    Hi Kerry,

    The forum is still very new, but we’re sure glad you’re here!

    Do you mind me asking… how long did you have to stumble along until you finally got the diagnosis of Hemiplegic Migraine?

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  • By Teri Robert

    Kerry,

    There’s more evidence for verapamil than other medications for prevention of hemiplegic Migraine, but there are many other preventives that could be added to your regimen to try to reduce the frequency of your Migraines. There are, in fact, over 100 medications and supplements in use. For more information on prevention and a link to a listing of possible preventive medications, please see https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.

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  • By Cynthia

    I HATE Topamax, with a fierce passion. I went to one neurologist and he put me on it on a high dose since my migraines were so severe (can’t walk or talk during a migraine attack). On this medicine I couldn’t think, soda tasted horrible and I just felt like a really stupid zombie. My legs and feet were always tingling, but in a painful way. But the worst was how it affected my thinking. So many times I’d be mid sentence and I just couldn’t say the next word. I knew it, but the journey from my brain to my mouth just wasn’t working. Finally I got him to put me on a low dose, but it was still hell. It helped with my migraines, but I’d rather deal with my migraines than that. Finally one day at work I had to go home because I was hallucinating. Went to a different neurologist and he put me on Depakote. He said they call Topamax “Dopeamax” because of what it does to people. I was on Depakote for a while. No horrible side effects. Only one I had was heartburn, that’s it. Worked really well too. Then I started getting better, thought my migraines were just going away, so I stopped taking it. (Having no insurance for half a year can make taking it pricey.) That was on Easter I stopped taking it. Now, my brain is extra sensitive to EVERYTHING. I had totally forgotten how horrible my head was before doctors started shooting me up with meds. So hopefully soon once my insurance kicks in, I can go get back on Depakote again.
    But everyone reacts differently to medicines, so whatever works for you. I just would never touch Topamax again, even if you paid me.

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  • By Kerry

    sorry i haven’t been around lately. sometimes one just gets migraine education overload. 🙂 In response to Ellen: My migraines didn’t turn truly hemiplegic until 11-09-2010. I was diagnosed w/basilar migraines from 6-1999 until last november. I wasn’t diagnosed with HM until mid-december 2010 after six weeks of every day attacks and becoming nearly suicidal. I have a long history of being treated by physicians as if I were “faking it” or had some sort of psychological disorder. There was a time when I became convinced that maybe something WAS wrong with my psychologically and went on the meds for such (Paxil and Zoloft). Needless to say, these drugs did nothing but add side effects and do nothing to remedy my problem. But, when I started seeing the visual aura I began being taken more seriously. And, as if by a miracle, migraine drugs resolved ALL of my problems. Misdiagnosis is a terrible and dangerous thing. Just as frightening as giving someone with clinical depression Imetrex.

    I still have daily attacks of HM but they are quieter and quieter. I generally get slammed around the time of ovulation and, of course, as my cycle begins. Verapamil has helped a great deal. I also take B2 and Magnesium every day which also help a great deal.

    I have become more “well” by educating myself than I have by visiting a physician. Physicians, in my humble opinion, are not good for much outside of prescribing drugs and making sure you haven’t had a stroke. Other than that, you’re on your own. I would recommend that anyone suffering from this intensity of migraine read Oliver Sach’s book “Migraines”. He is very well respected in the medical community and his book is a godsend.

    Lastly, I went to see a doctor in Memphis, TN, at The Southern College of Optometry. They did what’s called a colorimeter test. I have a multitude of visual problems that cause me to be disoriented, create pattern glare, distorted patterns, shaking and vibrating of certain patterns and other equally disabling things. I was prescribed a precision tinted pair of lenses (I haven’t received them yet). I have high hopes that these will not only assist with my visual problems but will help to eliminate visual triggers. I’ll let you know how that goes but I would recommend that anyone good migraines & rose colored lenses. There is much published scientific study.

    Also, the reason why migrainours of all types feel “ultra sensitive” to everything is because you ARE. Migraines cause neuronal hyperexcitability, that is, your nerves fire uncontrollably even OUTSIDE of a migraine. For me, this has been clinically verified by both auditory and visual evoked potentials tests (you can google that too.) So, no, you’re not crazy.

    Best of luck to everyone here. Loves and Hugs to you all. I will try to check back in after I get my glasses and let people know how that worked out.

    Best,
    Kerry

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  • By Kerry

    sorry i haven’t been around lately. sometimes one just gets migraine education overload. 🙂 In response to Ellen: My migraines didn’t turn truly hemiplegic until 11-09-2010. I was diagnosed w/basilar migraines from 6-1999 until last november. I wasn’t diagnosed with HM until mid-december 2010 after six weeks of every day attacks and becoming nearly suicidal. I have a long history of being treated by physicians as if I were “faking it” or had some sort of psychological disorder. There was a time when I became convinced that maybe something WAS wrong with my psychologically and went on the meds for such (Paxil and Zoloft). Needless to say, these drugs did nothing but add side effects and do nothing to remedy my problem. But, when I started seeing the visual aura I began being taken more seriously. And, as if by a miracle, migraine drugs resolved ALL of my problems. Misdiagnosis is a terrible and dangerous thing. Just as frightening as giving someone with clinical depression Imetrex.

    I still have daily attacks of HM but they are quieter and quieter. I generally get slammed around the time of ovulation and, of course, as my cycle begins. Verapamil has helped a great deal. I also take B2 and Magnesium every day which also help a great deal.

    I have become more “well” by educating myself than I have by visiting a physician. Physicians, in my humble opinion, are not good for much outside of prescribing drugs and making sure you haven’t had a stroke. Other than that, you’re on your own. I would recommend that anyone suffering from this intensity of migraine read Oliver Sach’s book “Migraines”. He is very well respected in the medical community and his book is a godsend.

    Lastly, I went to see a doctor in Memphis, TN, at The Southern College of Optometry. They did what’s called a colorimeter test. I have a multitude of visual problems that cause me to be disoriented, create pattern glare, distorted patterns, shaking and vibrating of certain patterns and other equally disabling things. I was prescribed a precision tinted pair of lenses (I haven’t received them yet). I have high hopes that these will not only assist with my visual problems but will help to eliminate visual triggers. I’ll let you know how that goes but I would recommend that anyone good migraines & rose colored lenses. There is much published scientific study.

    Also, the reason why migrainours of all types feel “ultra sensitive” to everything is because you ARE. Migraines cause neuronal hyperexcitability, that is, your nerves fire uncontrollably even OUTSIDE of a migraine. For me, this has been clinically verified by both auditory and visual evoked potentials tests (you can google that too.) So, no, you’re not crazy.

    Best of luck to everyone here. Loves and Hugs to you all. I will try to check back in after I get my glasses and let people know how that worked out.

    Best,
    Kerry

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  • By Anonymous

    We at Hemiplegic Migraine Foundation (HMF) are exploring if a nonprofit and website dedicated to serving the needs of those affected by Hemiplegic Migraine (HM) worldwide is needed. We are conducting a survey on ”How and where you get answers to HM questions.”

    If you, your loved one(s), friend(s), or coworkers have HM, please go to this link http://hemiplegicmigraine.org/index.php/my-hm/surveys to complete the survey. You can also find the link under ”My HM & Community” > Surveys.

    It applies to everyone who is affected by HM, i.e. the patient, caregiver, parent, friend, family member, coworker, etc.

    Wishing you a HM and pain-free day,
    Tonya

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  • By auntym

    Hi-I am new to this forum and new at blogging-so I ask,please be patient with me.
    For 2 yrs now I have had severe headaches and when they first started I thought I was having a stroke.
    Went to ER where I was diagnosed with complicated migraines. Now I am 2 yrs into feeling like I am worthless and more confused by the professionals treating me.
    Yesterday the neurologist told be I have Hemiplegic Migrains–what ever that is!
    All I know is I am ashamed and feel stupid and that on most days I am confused, have speech difficulties and my entire left side feels weak. I even asked my Neurologist if I had mental illness.

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    • By LannPres

      Don’t blame yourself! Also, when I’m in a lot of pain, I can feel half-witted. This might sound a little off the deep end, but I recently discovered that rebuking the spirit of fear not only helped with the anxiety, it also took some of the pain. I had noticed that sometimes at night I would have this feeling of falling accompanied by this black bottomless picture. LOL I fell down my grandma’s stair at about 2, and being the place where she had kept coal, it was really dark. It didn’t help that I regularly fell off the bed until I was 3 or 4, and that I, as an adult, fall if I get weak (my blood-sugar used to be perpetually low; now I don’t what the problem is.). Things like this can trigger a migraine for me, as well as lifting things that bother an old injury of mine. Please don’t consider yourself crazy when your Dr seems to believe that you’re alright!

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  • By Ellen Schnakenberg

    Auntym,

    You are not alone in your struggle. I hope realizing that there are a great many patients who get these symptoms is helpful to your self esteem. These are things over which we have no control. We can eliminate triggers, take preventive meds and change our lives, and still attacks may come. We are embarrassed and feel like less of a person, but that simply isn’t the case. Sometimes it just takes another Migraineur to understand and put a virtual arm around your shoulders…

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  • By auntym

    I’m back, that migraine lasted for 10 days and I am now having problems with may job as my boss believes I am “pretending” migraines so I dont have to work, or if these are real I should be on disability! I think since I am that good at pretending I may pretend to win the lottery!! When did I stop being a productive person? Now can anyone explain to me please what I look for in a physician to help me learn to cope with these and not just tell me they don’t care what I think? This due to me stating I refuse to go to the ER each time I have a migraine — my experience with the ER has been so bad, yes I recieve pain relievers but no information and no clear communication –so I feel more confused –even had one ER doctor state he thought I may be having some form of weird allergic reaction–to what? I have other medical conditions which I understand prevents me from using alot of the “normal”Migraine medications. I have tried nortriptyline and depakote niether worked for me. I am now taking a calcium channel blocker just stated 1 week ago. I have read about keeping a journal –my doctor has not mentioned this. I am willing to learn and try anything within reason to make these things go away. I really don’t have anyone to talk to about this and what information I have found is not that good. Thanks Auntym

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  • By Teri Robert

    {{{{{{Anytym}}}}}}
    I am SO sorry you’re going through this. Let me start by saying that you have us to talk to about this, so you’re not alone. I know that’s not as good as having someone right there with you, but we’re here for you. OK?

    So, finding a doctor is key, but you already know that. You need a doctor who truly understands Migraine disease and how to treat it. What many of us learned the hard way is that neurologists aren’t necessarily Migraine specialists, and Migraine specialists aren’t necessarily neurologists. BUT, there are doctors who treat only Migraine and other headache disorders, regularly participate in continuing medical education so they keep learning, and are truly dedicated to helping their patients. There aren’t enough of these specialists, so sometimes we have to travel a bit to get to them, but it’s SO worth it. I’ve been in that situation myself.

    Please take a look at this article about doctors – https://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/
    At the end of the article, there’s a link to a listing of patient recommended specialists. Take a look at that too to look for a good Migraine specialist.

    Keep your chin up, Auntym. I promise you that you’re not alone.

    Sending you a gentle hug,
    Teri

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  • By Anonymous

    Auntym,

    It’s VERY important that you make sure that you were properly diagnosed with hemiplegic migraine because it limits some great medicines. I have only seen one in my relatively short career and those that thought they had it or diagnosed previously turned out to be “regular” migraine with aura (complex migraine is not true diagnosis according to ICHD).

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  • By marinabelle

    hey everyone,

    i’m sort of new to the online forum scene but i thought i would give it a try anyway. im 22, and I have had migraines for years but the symptoms i’ve had this past week were totally new—ER docs thought it was a stroke or TIA because of the left sided weakness/loss of movement, speech and vision problems, loss of consiousness, etc. they did MRIs and CT scans and everything came back clean so they just sent me home. then i went to a neurologist and just today was diagnosed with “complicated migraines”…i asked the neurologist what that name even meant and he said that another techinical term for it was “hemiplegic migraine”…again, something i have never heard of. put me on topiramate…i was told it is an anticonvulsant med….although i dont know why im on that when i get migraines, not seizures… and i guess that is my question…why that drug and not a migraine specific one, like imitrex, which i had taken before when i needed it an was primarily, if not only, a migraine med.

    i dont know how many people are on this particular forum page, as i was told this form of migraine is quite rare, but it would be nice to hear from some more of you about how your journey started.

    thanks for listening 🙂

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  • By Ellen Schnakenberg

    Marinabelle – I am so sorry you have had an experience like this. No type of Migraine diagnosis is easy to hear, and when a doctor adds the word *rare* it can become even moreso.

    I have to tell you though, that the term Complicated Migraine is antiquated and not even in the ICHD II diagnostic criteria. What this tells me is that you did not likely see someone who has had any specialized training in headache medicine. My response to that is always to, if possible, get thee to a board certified headache specialist who is going to be the best doctor to diagnose and treat your condition. To me, diagnosing hemiplegic Migraine is especially important because it limits medications that might be helpful to you.

    I suggest that you go to the topiramate/Topamax forum here https://migraine.com/groups/users/forum/topic/topamax/ and familiarize yourself with the information you find from patients there as that will answer a huge number of questions you might not actually have even realized you had!

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  • By alig0118

    Hi there. I’ve had hemiplegic migraine since I was 13, my first migraine was a HM, and my parents and doctor literally thought I was having a stroke. I’m 34 know and have had many different iterations of hemiplegic migraine. The numbness usually occurred on my left side and this summer it jumped to my right, affecting the right side of my face, tongue, throat and I had muscle weakness in my right arm. Needless to say, off to the ER we went.
    I understand HM are rare, and no one in my family has HM or chronic migraine either. I had a good handle on the migraines until June of this year, then they took over. I am so thankful that I found migraine.com with all of it’s information, forums, and tools.
    I’m in the midst of battling a two and a half week migraine with a neurologist who won’t return my calls. I am working finding a new neurologist, one that specializes in migraines and treatment.

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  • By Ellen Schnakenberg

    alig00118 – I hope you can find a headache specialist. When we start delving into areas that are less common, specialists become really important people to have on our side. I’m glad you wrote, and even more happy that you have found information here you can use!

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  • By alig0118

    Ugh. That about sums up my week, ugh. Migraine since early Tuesday morning. Neuro is treating the symptoms and not the source. The hemiplegia is only affecting my right side, mostly in my hand, face, mouth, and throat. It’s made for some interesting throwing incidents when I use my right hand and I’m right handed. At least I can laugh when it happens.
    I wish doctors would realized that because I can stand on my own volition, speak clearly (for the most part), and am not confined to my bed that I have real migraines.
    I’ve found a specialist and am working with my primary care doctor to set up a new patient appointment. My current neurologist is great, but I need someone who specializes in migraine, like my first neurologist (she moved to another hospital over an hour away).
    Here’s to hoping my HM improves and that it goes away.

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  • By Ellen Schnakenberg

    alig0118 – Here is a list of headache specialist listings. https://migraine.com/blog/looking-for-a-migraine-specialist/ There you will find the names and information for the 300 or so board certified headache specialists. Hopefully you can find one near you, however I would encourage you to do some driving if necessary. A specialist can help you get a handle on the situation and once you’ve got better management in place, you can get a closer physician to work with the HA specialist, and together they can be your treatment team, hopefully minimizing your long distance trips to perhaps once yearly.

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  • By JaynlM

    I have just been diagnosed with familial Hemiplegic migraines after many years of being considered as suffering from migraines with aura. This follows a ramping up in my migraines from 2 or 3 a month to daily in the last couple of months. It was only on my visit to a neurologist this week that going thru the symptoms and occurances within my family that I was diagnosed with this or even knew of it’s existance as a subset of migraine. I’m due have an MRI in the next couple of weeks and also to start on Topamax. I’m a bit worried that many of the potential side effects of topamax mimic my migraine symptoms and I’m not sure how I’ll cope with these if they become more severe. I am going to give it a go tho since previous medications have led to a big weight gain and had little or no effect on my migraines. Beta blockers halved my heart rate and BP to such an extent I couldnt lift myself out of bed. They also gave me really bad Raynaud’s syndrome. But forearmed with the information given here I’m going to negotiate a slower titration if at all possible and increase my B2 and magnesium. Any other suggestions welcome

    Jayne

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    • By torilou

      Hi Everyone,

      I’m new to this forum and happy to find a discussion about hemiplegic migraine. Though it looks like there hasn’t been much discussion lately. I was diagnosed about 2 years ago after having a very bad migraine with aura stop me in my tracks in a Costco. Kind of thought I was having a stroke at the time. Turns out it was a hemi migraine. And also turns out my dad and uncle get them as well. Interestingly enough, my dad had surgery on his carotid artery (it was occluded) and hasn’t had a hemi since.

      Anyway, I also have fibromyalgia and IBS and multiple chemical sensitivity. Anyone else have other issues or conditions going on?

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  • By Nancy Harris Bonk Moderator

    Hi Jayne,

    I’m sorry to hear about your recent diagnosis, and just answered your post in the Topamax folder. All for a slower titration – slower the better for some people. Hemiplegic migraine https://migraine.com/migraine-types/hemiplegic-migraine/ is a rare form of migraine disease. One of the standard medications used to treat HM is the calcium channel blocker verapamil, but I don’t know how that will work with your heart rate and BP – something to discuss with your doctor at any rate. Depakote and diamox are also used to treat HM.

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  • By Lisa

    I was diagnosed with hm almost 7 years ago, a few days after the birth of my child. My symptoms subsided considerably after I stopped breast feeding but still arose from time to time over the years. Stress and hormones seem to be huge triggers for me. I have avoided medications thus far but lately I have more days with symptoms than without. I went back to my Neuro who prescribed Verapamil and I will begin this soon. Today I had a really bad episode which is why I joined this group. I get so terribly anxious after/during having symptoms, which is usually just left sided weakness and strange feelings throughout my head. My questions are: do most of you have anxiety with your symptoms? How long does it take for Verapamil to work? What is the longest your symptoms have lasted-is it normal to ave symptoms for days at a time? Thank you!

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  • By Ellen Schnakenberg

    LAB4 – The first concern I always have when I hear patients mention anxiety, because it isn’t very often that doctors look for causes of that anxiety. Often those causes can be Migraine triggers themselves, and very treatable ones at that!

    For example: many patients with thyroid dysfunction end up with anxiety and Migraine problems with increased frequency and severity. Fixing the thyroid often lowers frequency and severity to a manageable level if it is caught in time.

    Anxiety is also often comorbid with Migraine. Again, too often I see it called comorbid when it eventually turns out to be the result of another diagnosis altogether, however it is definitely experienced by many patients. The thing is, the anticipation of another attack can be anxiety producing all by itself! Then the pain hits, causing an increase in stress hormones and anxiety. Then when we worry about friends, family and work, that increases all the more. It’s quite a nasty cascade. So to answer your question – yes, a lot of patients experience what you’re experiencing. Just be sure to check that your doctor is looking for causes for the symptom and not just chalking it up to Migraine.

    Verapamil and other preventives usually take about 2-3 months at an effective dose to get optimal results. That said, patients often get much quicker results than that. The key is a lot of patience and hanging in there for the time needed to get better.

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  • By Dori Fritzinger

    I am 54 yo. I have been diagnosised with FMH2 – It has taked 5 years and alot of being treated for a ton of other things – I am adopted and have no family history at all – I have had migraines since I was 9 yo, but never remember not having headaches – the biggest clue came in the fact that my daughter and now also grand-daughter have serious migraines. So after many nureologists later – my new Dr ran some extensive blood work including genetic testing that confirmed his diagnosis. When I am hit with a flare-up I have vomitting, siezures, severe migraines, numbness to paralysis on my left side – including speech and high risk of choking. The siezures range from mild to grand-mal. I am also a type 1 diabetic so the vomitting, and unablility to swallow becomes a big problem fast – I am now on Asprin 325, Keppra, Lamictal, and VimPat – I have been siezure free for 8 weeks now – I still suffer with the occasional severe migraine but compared to where I was – I am able to deal with this with pain controling meds. I have found strong storm fronts, heat, florecent lights, blood sugar changes, hormone fluctuations, bright light, and fatigue are triggers. I have also changed many lifestyle things such as: I do not go outside or to stores with florecent lights without sun glasses, I now follow a strict schedule to get up the same time, meds at the same times, and go to bed same times, meals are also kept on a strict routine of time in 6 small meals to help keep my blood sugar as even as possible, and do not use antihystimens. I now wear a medical alert system 24/7 to be able to get help if I sould fall or have a siezure when no one is here with me. It is hard and I do not know of anyone who has this condition. We are farmers and I have found I can not help do many of the things I did without even thinking.

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  • By Nancy Harris Bonk Moderator

    Hi Dori,

    Familial Hemiplegic Migraine is a rare form of migraine disease, here is information on it, but it sounds like you are a well educated proactive patient – good for you! https://migraine.com/migraine-types/hemiplegic-migraine/.

    I’m so happy to hear you have been able to identify some of your migraine triggers and are able to avoid most of them. For some of us, migraine disease means making lifestyle changes that may be permanent.

    We have others here who have FHM, and you may want to check out our Facebook page for support too. https://www.facebook.com/MigraineDotCom.

    Let me know if there is anything I can help you with

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  • By ShaggyKilgore

    This might take a while because my right hand hasn’t come back to me all the way yet. I am in the process of (finally) getting the medical care I need for my complex migraines. After years of having these monsters, including a handful pre- and post-puberty partial paralytic migraines in my childhood that were poo-pooed as me being a drama queen, they have become so debilitating and so evident that I cannot pretend the lie that I tell everyone all the time: I’m okay. I was led to believe that everyone gets headaches sometimes and that I should just tough it up and stop making so much out of them. So, I’ve learned to put on a VERY convincing smile, particularly when I’m in the greatest amount of pain. It is really hard to be taken seriously when you are smiling while telling a doctor that it feels like a donkey is trying to kick its way out of your head … until they check your blood pressure while it is going on, request an MRI, and find a huge mass in the uppermost sinus cavity that was asserting extreme pressure. So, yeah, they took me serious enough to have it removed, and that helped with that head pain. I found out in the process that I’m allergic to most migraine medications like Zomig and extremely allergic to morphine-derivative pain medications. Oh lucky me! So I was lucky enough to get rid at that physical mass that was causing me so much pain, but, sadly, all the other migraines have continued and progressed in frequency and duration. But because of our financial situation, I decided not to take those subsequent headaches very seriously even though I was supposed to have bi-annual MRIs (which we just couldn’t afford to get without insurance). In the meantime, I’ve had stroke-like episodes over the past years that have prompted my husband to rush me to urgent care. They, of course, take my vitals (usually my blood pressure is either abnormally high or low during the incidents) and have some imaging done to make sure it isn’t a stroke, and then they send me home because they don’t find anything. This does wonders towards not being taken seriously by your family: to have them go through all the hassle and expense to get help only to be sent home without any help or answers. Well, I’ve also been diagnosed with fibromyalgia and have been receiving care for that, but the only medications I can take right now are gabapentin for the neuropathy pain and large doses of ibuprofen to manage the other pains. I have become house-bound in a darkened house and unable to go outside without wearing sunglasses. Heat just kills me, as does barometric pressure changes, hormonal fluctuations, flickering images, and strong smells (particularly onions). Anyway, I developed a kind of routine around my migraines and my fibromyalgia. When I had to get stuff done, I knew that it was going to trigger extreme fatigue and I’d likely get a horrible migraine. So, I’d plan for up to a 3 hour nap after doing something, and that worked for quite a few years. But, starting last November, this strategy didn’t work anymore. After becoming extremely fatigued from grocery shopping, I took a nap. But, when I woke up, I couldn’t move! I couldn’t even open my eyes at first! My oldest boy (an ornery teenager) tried to wake me, and he thought it was funny and unusual that I was “sleeping so deeply” that he could move my arms around and make my hand slap my face. I am so thankful that he decided against the Sharpie pen that he was considering. He kept moving me around trying to rouse me, and I couldn’t do anything about it. I felt so helpless! Then he put all my hair into my face as a prank, and I was finally able to open my eyes and try to let him know I needed help, but he couldn’t see my eyes and took my eventual weak mumbles as me simply talking in my sleep. I slowly came to, and my son apologized for his behavior. I went to urgent care (especially since I couldn’t speak normally), and they, yet again, sent me home because they didn’t find any evidence of a stroke. I didn’t know what in the world was going on, but I figured that MAYbe it was a one-time happening. But, the headaches just kept coming and staying longer. Days without head pain are so rare that I find myself overcompensating with my kids on those rare good days where I can do things like read, sing and play. That is the kind of mother I want to be and try so hard to achieve, but my medical issues interfere tremendously. My family misses that mommy most of the time. And my relationship with my husband has become quite strained due to my health. He tries to be patient and understanding, but he still expects me to take care of everything related to home and family, and he cannot understand how a headache or fibromyalgia pain could be so bad that I have to stay in bed. He gets aches and pains from working, afterall, and he gets headaches sometimes too. How could they possibly stop me from doing anything? It feels like he too thinks I’m a drama queen and making too much of minor pain. I just wish he could sit in my body for an hour when I’m having an episode, just one hour, and see if he ever doubts me again. But, really, I wouldn’t wish this on anyone. Anyway, after two more paralytic events and after having my right side become paralyzed for over two hours after the rest of the body had come to, we realized that we couldn’t pretend that I was okay anymore. I went to my internal medicine doctor, and he diagnosed me with “complex migraines.” I asked him what that meant, and he said that he strongly suspects that I have hemiplegic migraines, but he needs to send me to a neurologist to confirm his suspicion. I’ve gone through some blood work and an MRI, and I will start to know some of the results next week. So, the official diagnosis is still pending, but from all I’ve read about these headaches, it is a fit. So, I’m afraid of what this diagnosis will mean for me and my family. I have so few pleasures right now and feel trapped by my pain and such, and questions like “will they take my drivers license away?” and “what if it happens when I’m alone with my autistic preschooler?” are driving me crazy and keeping me up crying most nights. Also things like “what if there is an emergency and I’m having an episode?” leaving me feeling so inadequate and helpless that I cannot think of anything positive about myself or my life. So tonight after a “minor” paralytic migraine (affected my right side but didn’t leave me in a coma-like state), I decided to reach out to other sufferers and see how you manage this monster. I mean, it is hard when your pre-schooler is running around like crazy and begging you for something to eat, and you have to tell them that they have to wait a while because Mommy cannot move yet. How do you all get through it? What kind of advice can you share? Thank you 🙂

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  • By Dori Fritzinger

    I feel the pain and frustration you are going through – it took the medical community 5 years to pinpoint what my migraines were – now I am on meds to prevent the : episodes , spells, and a group of names that only made it sound like a slight problem.

    I have had to give up my drivers license, can’t be left alone with my now one year old grandson because what if I have a “thing” Sometimes I can not be left with just me.

    The seizures can last one rounds or twenty or more – paralysis hits my let side usually and can last couple of hours or days – I end up in ICU and the bills just keep coming (we do no have insurance either)
    I have (FHM)2 This last time left me with problems in my left and foot not working correct

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  • By ShaggyKilgore

    Oh no! Yeah. Sounds like my worst fears actually Dori. I’m so sorry you are living with this monster too 🙁 The needing supervision with the baby would break my heart the absolute most, though I’ve been there with my youngest too. I find myself relying really heavily on my oldest son and my husband, which makes me feel less confident when I express myself to either of them, and I dread the rabbit hole of symptoms and losses of freedoms that I have been experiencing. Right now a charity at the local hospital has taken me under their wing to pay for my medical appointments with their doctors and most of my lab work and prescriptions from the hospital pharmacy. But my previous medical bills, and our lack of ability to pay for them, have left us stuck living where we are right now because we simply cannot afford to move and cannot pass a credit check thanks in part to these. And, you know, people treat you like it is somehow your fault that your brain is wired differently and that you are somehow less than everyone else because you suffer from poor health and have low income. I haven’t been able to work since 2009, and got denied any Social Security benefits because there wasn’t enough of a paper trail for things because we couldn’t afford the medical care we need. The rejection letter basically said that a person of my age, with my work history and education should be able to find some job I can do. Sadly, I spend 90% or more of my time laying down in bed and cannot sit for more than around a half an hour at a time unless it is in a recliner. No one can work under those circumstances!

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  • By Nancy Harris Bonk Moderator

    Hi Shaggy,

    I’m so glad you’ve found us and feel comfortable sharing your story with us. There is a lot of information I’d like to share with you, so hang in there with me, OK?

    Above all else, it may be time to see a migraine specialist rather (or in addition to a neurologist). A migraine specialist is THE EXPERT who treats migraine and headache disorders all day, every day. They are different from neurologists because they are board certified in headache medicine. An more to the point, it is difficult for neurologists to be migraine specialists because they treat so many different conditions such as MS, epilepsy, stroke and Parkinson’s. When you are up to it take a look at this information; https://migraine.com/blog/how-are-migraine-specialists-different/. Then when you are ready to find a specialist, here is that information too; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    One thing I did notice was you mentioned you are taking “large doses of ibuprofen” which is concerning. Here’s the deal; If we take certain migraine medications and/or pain relievers, whether they are over-the-counter or by prescription, more than two to three days a week we run the risk of getting medication overuse headache or moh. When we have moh our migraines are more difficult to treat and we can end up in an endless cycle of daily pain. It’s a tough situation because we just want the pain to go away. But the very drugs that may help, can do more damage than good. Here is information on moh;https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/. Another problem with taking large doses of ibuprofen is that it can really be trouble for your stomach.

    With hemiplegic migraine (HM), a rare form of migraine disease, it’s best to be treated by an expert as I mentioned above. Here is our information on HM; https://migraine.com/migraine-types/hemiplegic-migraine/ and https://migraine.com/blog/migraine-symptoms-hemiplegia/. As far as ‘complex’ migraine goes, that isn’t a recognized diagnosis but more used as a descriptive term. I can share information with you in this link; https://migraine.com/blog/complex-complicated-migraine/.

    It’s very difficult raising children with migraine disease. When we have special needs children it takes migraine to another level. Once you have an accurate diagnosis, you may feel better about things in general. I know it helps many people who have been struggling when they can finally put a name on their problem.

    I’m going to stop now so I don’t overload you too much! Let me know what you think.

    Nancy

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  • By Nancy Harris Bonk Moderator

    Hi Dori,

    Thank you so much for sharing your thoughts with us. It’s nice to hear members helping each other out.

    As I said to Shaggy, it may be time to see s migraine specialist rather than a neurologist. I know how tough it is to be without insurance, is it possible to save up for a specialist appointment? The difference between a migraine specialist and a neurologist are striking – let me share that information with you; https://migraine.com/blog/how-are-migraine-specialists-different/. If you want to find one, here is that information too; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Have you seen our information on hemiplegic migraine? I’ll share the links with you but if you have, please ignore them! https://migraine.com/migraine-types/hemiplegic-migraine/ and https://migraine.com/blog/migraine-symptoms-hemiplegia/.

    Keep us posted on how you are doing.

    Nancy

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  • By tattoolover

    Recently diagnosed with hemplegic migraines. I’ve had migraines my whole life, so needless to say, I broke down in tears when the neurologist told me the reason for my 2 month long trip to hell was because of migraine….I figured he was giving me some BS line because he had no idea what was wrong with me. 2 hospitals, numerous MRIs, CT scans, gallons of blood work, bone scans, nerve tests, muscle conduction tests, EKGs….etc…and no one could figure out (or make the connection) why a seemingly healthy 44 year old woman with no medical history (other than migraines) would be paralyzed. 2 weeks on IV pain meds, and a month in a wheel chair…but on paper (according to every test and scan known to man) I was in perfect health. I’m now trying to find an anti-migraine medication I can tolerate. First one I’ve tried is a definite no….hopefully I find one soon. This trial and error is almost as bad as the ailment 🙁

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  • By Nancy Harris Bonk Moderator

    Hi tattoolover,

    I’m so sorry to hear about your recent diagnosis. Hemiplegic migraine (https://migraine.com/blog/understanding-hemiplegic-migraine/) is a rare form of migraine disease best treated by an expert, the migraine specialist. Let me explain – neurologists my be fine doctors but have a difficult time being experts in any one area because they treat so many different conditions such as epilepsy, MS, stroke, Parkinson’s and others. Migraine specialists are doctors who are board certified in headache medicine and treat people with migraine and headache disorders all day, every day. Let me share some information with you on how these doctors are different; https://migraine.com/blog/how-are-migraine-specialists-different/. When you are ready to look for one you can find that information in this link; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Verapamil is often used for hemiplegic migraine with success. It’s important to note that when we start a new medication it can take up to three months as our body adjusts to the new medication before we see a reduction in our migraine frequency and severity. And during this time potential side effects may lessen. Here is a link about stopping a medication trial too soon; https://migraine.com/blog/the-danger-of-abruptly-stopping-migraine-preventives/.

    I hope this information helps, let me know OK?
    Nancy

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  • By Dori Fritzinger

    It a challenge to live with Hemiplegic migraines. I took us 5 years to get a correct diagnosis. I say us because my family was put through hell. Yours sound like mine with all the nasty side effects. My new doctor is a God sent. We are learning more each day, and educating others, especially those who think I just get headaches.

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  • By Nancy Harris Bonk Moderator

    Hi Dori,

    I’m sorry to hear it took so long to get an accurate diagnosis. I don’t know if you’ll be comforted by the fact that many of us don’t get correctly diagnosed for years – I guess we could say people with migraine are in an elite club!

    We have information on HM I’d like to share with you; https://migraine.com/migraine-types/hemiplegic-migraine/ and https://migraine.com/blog/understanding-hemiplegic-migraine/. I hope you find this helpful.

    Nancy

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  • By Rhonda H.

    I got my official diagnosis 2 years ago. We suspected for years I had the familial type, so I wasn’t very surprised when I got my first full on attack. Haven’t had much luck treating it unfortunately. I can’t figure out any trigger patterns. And I get side effects with many medications. For now I’ve voluntarily stopped driving because they hit me quite suddenly. Hoping the new migraine clinic in my area will offer some options.

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  • By Kelvan

    Find a doc that does Botox injections, I found one after all other options were almost gone. Works we’ll for migraines (hemoragic).

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  • By Kelvan

    He is a migraine specialist and has a following to his practice. I have been on the shots for about 2yrs now. Doc won’t let you just get shots, you have to do pt and other things as well to help.

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  • By Nancy Harris Bonk Moderator

    Hi saifai,

    Hemiplegic migraine is a rare form of migraine disease that can be tricky to treat; https://migraine.com/migraine-types/hemiplegic-migraine/. Are you by any chance seeing a headache disorder specialist? These doctors are board certified in headache medicine and treat people with migraine and headache disorders all day, every day. May I share a bit of information on this topic; https://migraine.com/blog/how-are-migraine-specialists-different/. If you’d like to look for one here is that information; https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Nancy

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  • By Ms. Wobby

    I’m not sure if I’m posting correctly: Recently diagnosed with complicated migraine w/ aura. Curious – can anyone explain the difference between :sensory loss (caused by say a panic attack ) and true motor weakness.

    I’ve had several times I couldn’t use right hand for over a 1/2 hr and noticed weakness in left leg – BUT also several times during attack both arms are very weak for hours after, can’t even lift my purse.

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  • By Ellen Schnakenberg

    Wobby-Time,

    Only a doctor is going to be able to really diagnose what you’re experiencing. When patients come to us with unusual Migraine symptoms, or problems that are complicated or difficult, we always suggest they see a Migraine specialist. These are doctors that have specialized training and experience in treating the over 300 different headache disorders including Migraine.

    I can tell that your current doctor is most likely not a specialist because he has given you a diagnosis that doesn’t actually exist – complicated Migraine with aura. It is descriptive, but it can also be a clue that your doctor may not be current on the most important information he/she needs to have to help you.

    Here are a couple links that might be helpful to you in finding a more qualified doctor to help you, and why it might be important for you:

    How are Migraine Specialists Different? https://migraine.com/blog/how-are-migraine-specialists-different/

    Where to find a Migraine Specialist https://migraine.com/blog/looking-for-a-migraine-specialist/

    ~Ellen

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  • By Sarah

    Hi, everyone. I’ve never met anyone else with hemiplegic migraine, so by way of introduction, here’s an about me.
    I was diagnosed with hemiplegic migraines in, um… 1998. Sixteen years ago. I’d had migraines all my life, starting in the crib. But they became hemiplegic during my first pregnancy. They started happening every other day, like clockwork, terrifying me and several doctors. Now, my eldest is fifteen (Wow.) and I get about four or five hemiplegic migraines a year.
    I lost my job in 2012 due to “excessive absenteeism,” though the Texas Workforce Commission determined the firing was not justified because I had a letter from my doctor on file at work about my migraines. The unemployment has long since run out, and I haven’t found steady work since. (For a variety of reasons.)
    I’m married, with two sons, and live in central Texas. My husband is very supportive. He does drive me a little batty though: he says he gets migraines, too. I’ve known him since middle school, and trust me, he doesn’t. 😀 He does get very nasty stress headaches, but he equates ‘severe pain’ to ‘migraine.’ I’ve explained the neurological hell of symptoms that come with migraine, the differences between a headache and a migraine, and he really does seem to get it. Until the next headache. But that’s okay. I tease him gently, get him some Advil and juice, and leave him be.
    So, um, hello!

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  • By Ellen Schnakenberg

    holyphoton

    Thankfully, Migraine is a spectrum disorder and can be likened to autism. There are some for whom an attack is merely a bother that happens infrequently. For others, they are disabling and daily. Furthermore, Migraines are thought to be a progressive disease, so even when you’re not suffering horribly, it IS still important to treat yourself.

    I’m really glad your spouse isn’t on the bad end of Migraine, but honestly, unless he’s been diagnosed by a Migraine and headache specialist, it’s probably a mistake to assume that, because his pain isn’t severe, that it is not a Migraine attack… just as much of a mistake as he may be making by assuming that Migraine is another word for severe. There are over 300 different headache disorders and it takes a lot of extra education sometimes to be able to properly diagnose a patient, and specialists are now realizing that many they thought weren’t Migraineurs, actually are. Did you know there is actually no such diagnosis as “stress headache?” Most patients are actually really shocked!

    Keep up the great attitude. It can be so hard for someone who suffers badly to keep their sense of humor. For me, getting a bad attitude is actually part of my prodrome/attack, making things even worse! Thankfully my hubs recognizes these super a-typical reactions for me, as a sign that I need to get to treating right away 🙂 He too over-uses the term “Migraine”. lol.

    ~Ellen

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  • By Jeanette Cucura Keymaster

    From one of our community members:

    Hello. I am the carer for a gentleman who suffered a stroke four – and – a – half years ago.

    Since the day of his stroke he has suffered a permanent headache. Some days are worse than others. I can only describe the symptoms on the worst days as migraine – like, e.g intense pain, low mood, dizziness, tiredness,sleeplessness, and bad temper.

    He can’t take any pain relief as he is on Warfarin – he has been advised by the GP that any pain killers will affect his INR readings. A CT scan indicated that there was nothing amiss with his head other than his having had the stroke.

    I know this sounds really weird but I am beginning to wonder if he was mis – diagnosed as having had a stroke and is suffering from another condition – maybe hemiplegic migraine?

    Has anybody else had such an experience?

    Teena

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    • By Ellen Schnakenberg

      Teena,

      It’s very possible that he has been under-diagnosed or misdiagnosed, but you won’t know until you get him to a Migraine and headache specialist. Here is a list to help you find one closest to you: https://migraine.com/blog/looking-for-a-migraine-specialist/ There are over 300 different headache disorders, and you need someone to help him. That kind of pain to endure every day is unconscienable. JMHO. Pain relief isn’t what you want for Migraine anyway, it’s to abort the process. That’s a whole other medication class (or more). The idea is, there are many meds to help him, including some potentially that may help prevent the head pain. Please help your lovely gentleman get the help he needs, and thank you so much from a patient, for caring so much to inquire for him <3

      ~Ellen

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  • By Jennifer Click

    Hello,
    My name is Jennifer and I am so glad I found this site. I have suffered with migraines since I was 8 or 9. They began as what most would call normal migraines where you are light and noise sensitive, you lay down or vomit and are better. Over time they have become more complex and then finally in 2001 on New years day actually I thought I was having a stroke and went to the ER. I spent 7 days in the hospital unable to walk, talk or even think for them to tell me it was all in my head and that I was faking it because nothing showed on there nice little tests. For a little more background I have rapid cycle bi-polar, social anxiety disorder, panic attack and severe firbro myalgia. I finally found a nuro doctor who said oh yeah you have HM migraines and there is nothing you can take for them. I thought great now what do I do I can’t walk right anymore or think clearly. I have had no luck with any meds for anything else that is wrong with me so why should this be different. After suffering for most of 2011 my mom said I should try for disability so I did, it took 2 long years but I got it. I could not imagine how I would even begin to survive if I wasn’t on disability because I never know when I get up each day if I will be able to see or even dress myself. The hardest part for me is not being able to take anything. I stopped all drugs about 9 to 10 years ago because I was so drugged up that I looked at my child one day and asked them who the man in the kitchen was? He replied that is your husband and I said no way. So because of so called helpful medications I divorced my children’s father and married some man I had no idea who he was and was married to him for six years. So right then and there I promised myself never again will I allow myself to be put on drugs that will control me like that. The problem I have now is my head is in constant pain and I can’t function hardly at all. 2 years ago I found a work at home job I could do for 20 hours a week and I find that I can’t even do that. So help someone please I need advice or guidance disability doesn’t pay the bills and I can’t take the pain anymore. All these stories sound so much like mine in ways. I am intelligent, I am only lazy because I have no choice when these attacks come on. I am now on my third marriage that is a mess and we won’t go there but dang I just want to feel normal and be happy. Sorry this is more of a rant than a story I guess and that is how my brian works anymore I just type what is in it at the time sometime it makes sense and goes in the direction I wanted and others it don’t.

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  • By AmandaInCA

    Hi everyone – I just found the forum and wanted to say hello and thank you for sharing your stories. I have had three HMs now over the past couple years, and I’m definitely lucky I don’t get them more often, but they’re scary. I’m still kind of suffering from the tail end of one I had this weekend (tingling/numbness, bad circulation, small headache), and usually they’re gone within a night’s sleep for me.

    I actually saw a neurologist a couple years ago who didn’t even bring up the words hemiplegic or migraine — I think she thought it was some kind of “episode” and it’s crazy how many neurologists don’t seem to know about this stuff. I’m now going to make an appt with a headache specialist.

    Amanda

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  • By Chelly

    Hi

    I have recently been diagnosed with having hemiplegic migraine. I have never experienced migraine before so am a late starter at the age of 45. I collapsed at home in a semi conscious state, unable to speak, move my left side from face down to my foot. I was hospitalised as they had to do all necessary checks to make sure it wasn’t a stroke, or meningitis. I had the headache for 11 days before it slowly subsided, but it has left me with numbness in my left foot, which means I am at present having to have a carer and a wheelchair! no work and not really sure about what is going on.

    I had raised protein levels in my spinal fluid, and the neurologist made sure I had a battery of tests, MRI, EEG, Vascular scan etc, all of those were normal except for the raised protein in my spinal fluid.

    I am in the UK, and although I have been given a diagnosis of migraine with aura specifically hemiplegic migraine, the neurologist has been very vague about whether it is likely to happen again and has not given me a further appointment or any form of medication. I don’t know what to expect or whether I am supposed to be looking out for any symptoms. I was incredibly tired and had suffered a bout of shingles prior to this happening but now I feel in limbo, I do have an appointment with my GP in a couple of weeks, but to be honest I am feeling scared and concerned at the minute as life isn’t the same and I don’t know how things will proceed.

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  • By maisy8

    Hi
    Awful reading all these stories – my heart goes out to you all.
    I am yet to receive a diagnosis but am wondering whether it is hemiplegic migraine.
    Have had migraines since my teens – am now 60 – but have coped with these. Have also had severe stress headaches – have used Syndol for many years for these and have not mentioned taking this to GP as Syndol was an over-the-counter medicine.
    15 months ago, developed a severe left-sided migraine. Over the next few days had headache alternating with violent rumbling, rolling stomach, finding it had to breathe. When I then suddenly felt as though I had been hit hard across the chest, went to Accident and Emergency.
    Kept telling the doctors that I had other worrying symptoms – numbness in hands and fingers, strange sense of touch 9things felt odd; smell was distorted – couldn’t stand smell of even the most normal things, felt violently sick and couldn’t eat because of the smell; lost weight rapidly -around one stone in 5 days, dropped 2 dress sizes; dizziness and shaking,even lying in bed; disturbances in vision; mental confusion at times. Kept trying to ask what is that can cause such a frightening disruption of all five senses. No answers! Was checked out for chest pains, in hospital for 5 days. Had an angiogram, told I had slight blockage but only needed medication.
    Went to my GP for follow-up. She only discussed the heart medication – dismissed the other syptoms as ‘some kind of fit’, just saying it was up to me to decide when to drive etc. Was left feeling more terrified!

    OK for the next 15 months but still enormous stress in my life and had endless tension headaches, kept taking Syndol plus sleeping tablets – my only relief.
    Nearly 4 weeks ago, recurrence of symptoms- again had to go to Accident and Emergency as breath was coming out in violent gasps. This time symptoms were worse and included severe involuntary shaking and trembling – was told I was having a panic attack (I don’t think so). Sent home after heart tests, these were Ok. Heart Consultant told me that other symptoms might be brought on by migraine pain which can mimic signs of stroke/heat attack.
    Given a beta blocker and more angina meds.
    Once home, all the symptoms continued – I felt I was going crazy – reacting to any smell/total dizziness/unable to tolerate food/intermittent severe headache/ trembling and shaking, teeth chattering, sweating hot and cold, nausea and the rest.
    Have seen different GP who is trying to help. Has prescribed an anti-depressant in case stress/anxiety is the cause. Have not taken this as I feel I am already over-medicated. Need to tell my GP about my over-use of Syndol and sleeping tablets in case this has caused all these (have now stopped the Syndol as too scared to take any. Have not been able to work for all this time and I need to.
    Does this sound like hemiplegic migraine? Would appreciate any help. Has anyone else had that horrible distortion of all five senses – each one is affected one at a time, that goes, to be replaced by another. It’s as though something is attacking different senses one after the other.

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  • By Katie M. Golden Moderator

    Maisy8,
    It is possible that your symptoms could be caused by hemiplegic migraines, however I am not a doctor. It sounds like you really need to see a neurologist to help you with this. It’s important to have some other tests like an MRI to rule out any other potential causes.

    Assuming these tests come back normal (which is typically the case with Migraines), the neurologist can help you find some preventative medications other than what you are taking that might be helpful.

    You may also want to try the anti-depressant your GP gave you. Many anti-depressants are prescribed to Migraine patients as an off-label use. They also don’t cause rebound headaches. Here’s some info on hemiplegic migraines that you may find useful:

    https://migraine.com/blog/understanding-hemiplegic-migraine/
    https://migraine.com/migraine-types/hemiplegic-migraine/

    Best Wishes,
    -Katie
    Migraine.com Moderator

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  • By roarkmom

    Hi,

    I have never blogged before so this is all new to me but here’s my story and I am completely confused, anxious, nervous, and scared.

    I have had chronic migraines since I was a child, some of which mimic the worst sinus/ear infection you’ve ever had and 99.9% of the time my migraines are on the on the RIGHT side, (I don’t mean to shout, just emphasize) and I also have occipital nerve migraines, and cluster migraines.

    However, something changed in November and I started to have pain in the left side of my face and one doctor thought I had shingles but I never broke out. Excruciating pain…Literally, feeling like contractions through my left check, or lightning bolts out my chin, or pins and needles, eye pain, etc. I was given 10 days of gabapentin and I continued to suffer and the pain continued to get worse and not sure if pain starting referring down the left side. Focus, concentration, memory loss, fatigue all issues. Of course I didn’t realize the memory loss was an issue until my family pointed it out. 12/16 and 12/17 it got much worse with vertigo, vision changes, nausea, sweating.. Anyway, on 12/19 my neuro said that it was not shingles and scheduled me for tests 4 days later. Before that happened 2 days later, I was tired and limping, then I awoke out of my sleep at 1 am the following morning and I could not see well, could not talk well, think right, walk right, so weak, so my husband thought I was having a stroke and called 911. I could only make 1/2 a smile. After 3 days in the hospital, (leaving the hospital with a walker), one of my neuros diagnosed me trigeminal neuralgia in the hospital and added klonapin because I continue to jerk even with higher doses of requip for my restless leg, an internalist said they couldn’t find anything wrong, and my PCP said “so you had a migraine” according to the internalist and “I don’t know what’s wrong with you”. I continue to wake up some mornings as week as the 1 am episode. Pain and weakness continues down my left side (pins needles). However, some mornings aren’t as bad as others. I even have therapy for 2-3 days a week due to the weakness and I don’t see how TN is doing that. For over a year now I’ve been telling my dr, I have had random eye flashes, can’t find words that I know I know, slurring speech sometimes, fatigued and I feel stupid. My husband has a co-worker that found out about my hospitalization and suggested I look this up and it sounds very familiar but I am lost…

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  • By Eagle6205

    Hi There everyone,

    If you are reading this I would assume your either a moderator or suffering from Hemiplegic Migraine. A hard to digest diagnosis for some of us. As it would seem as though posts on this topic by people diagnosed with this condition is not a common occurrence.

    I would like to add that I will be telling a bit of a story here since this is a rare condition and that the ones who read this will most likely feel the same way ,seeking as much information as they can obtain on this as possible. Understanding helps to cope.
    So all though a few paragraphs long, maybe this will help someone who is suffering.

    One in Ten Thousand is the number Ive learned so far. I was diagnosed only 4 days ago 2/16/15
    Let me tell you,after going to Drs and specialists for them having no clue as to what was going on with me to finally be referred to a University to be told its a Severe form of Migraine made me think GREAT! Another dead end! However I told this Dr everything I had/have been experiencing since 3/15/14 with a detailed log of each onset of symptoms and ER Visits and he actually listened and took notes. I was shocked since all my other drs never read into or let me read from my logs which was the missing link to an educated Neurologist. He listened and after I had finished describing what had been occuring he asked very specific questions. I then intern showed him the same respect and listened to him with an open ear.

    He went into great detail about the process of migraine and how each symptom occurs from it. He was able to just guess the next sequence of symptom onset since he had seen it many times before. He told me how each one of my symptoms all occured and stayed in the same area of the brain allowing him to narrow it down using the descriptions I gave. I thought to myself as he told me about the locations of my symptoms in where they occured in the brain he was leaning towards a brain bleed or something serious of that nature. However he finished with the only thing that can cause all of your symptoms specifically as you detail them is… Migraine. I instantly thought in my head sigh…-_- However he went on to tell me that Migraine is not just a headache and that there is a more rare form called Famlial or just Hemiplegic Migraine. I am a hard person to move. Even after the fact and his details I began to think he just doesn’t know whats really going on so this the “Anxiety” of Diagnosis that Neurologists use when they don’t know whats wrong. Like when drs in the ER stamp Anxiety on your discharge paperwork when they cant figure it out.

    I was sent home with a packet called “Migraine, You probably have it” I read it and I wanted to throw it across the room because I felt as though I let them label me with a diagnosis of which there was no sure fire test for,other then a Functional MRI or Genetic DNA testing.
    I gave myself time to cool my jets and thought about what he was saying most of the night.
    It didn’t make sense but it did. So I got online did a ton of research and watched videos of people who have it and how their speech went and how emotional they became during the onset.
    When I viewed the videos it was then that it started to sink in that this was indeed all to familiar and that they were indeed experiencing what I went through. Seeing it from the other side is different since I experience it firsthand. I felt what my family was feeling.

    I had one of these stroke like attacks on March 15th 2014. Up until that point I was a healthy young man of 27 attending school to work on planes.I had no prior attacks or history with this illness. This attack came on after I had awoken one evening. I had some tingling in my legs and felt confused or disoriented something just didnt feel right. I couldnt put my finger on it. well within 10 minutes the tingling became intense as if my legs and majority of my left side was falling asleep. I thought it might just be my heart rate. I sat down and tried to chill out.

    The tingling became so intense it was as if I had a hive of bees on my legs and left side. “The Buzzing sensation of a bee hive” But with pins and needles feeling I then had extreme numbness on my whole left side with a large squeezing on my heart or chest. I thought instantly UH OH! then I yelled for my mom at the time and said I think its time to go to the ER. My legs were so tight and wound I could not stand my mom had to help me to the Car and I was wheeled into the ER. After several hours they had no idea what was going on I could barely raise my left leg in the bed. Nor could I stand and my legs, left arm and face, were all numb and tingling. After the Intensity of which subsided, I was in the Worst pain Ive ever felt in my life.

    I was in bed 3 days unable to walk one week later I saw a Dr. They thought it was a stroke but my CT from the ER was negative. So they thought it was a TIA maybe. within 3 days I began stuttering every other word. This continued to progress until the next major attack at which point Surprisingly my stuttering dramatically lessened. I had to retrain my right hand how to write.

    I had to gradually learn to read things again. It wasn’t so much that I couldn’t read but that I had to reread every sentence twice. For some reason large paragraphs would intimidate me to the point that I would lose my place, only to start over not really comprehending what I read, since I was more focused on just reading it. A few weeks later I started having issues finding words and then came the replacing words in a sentence with words I never meant to say. I believe its called expressive Aphasic Speech Anomalies. This did not get better.

    FAST FORWARD 11 MONTHS 4 ER visits a hospital transfer and hospitalization as well as 20+ onsets LATER as of today. Here I am still having severe difficulty walking and pain of varying intensity in my legs that never stops ,only lessens. As well as with intermittent pain that comes and goes throughout my entire body. Primarily my arms and legs but also the left side of my face and my hands and fingers. Extremely intense at times. 5-8 scale mostly

    I have read alot of posts from sufferers of this condition and no one has mentioned severe pain in the legs and difficulty walking as well as muscle Weakness in the limbs and sudden loss of legs while standing or the Muscle spasms in the limbs and face,Or the Insomnia that comes with the severe pain.My Dr. explained to me that I have a severe form of Hemiplegic Migraine and that a cane would help me. We talked about many medication options but in the end and still uncertain I just opted to take Magnesium starting 400mg daily.

    Im trying to return to school now and even seeking employment. Im learning to just live with these attacks and make the most of life after sitting inside the house all the time and spending 90% of it in bed only leaving for appts or to eat with family. Im going to fight as hard as I can to move on. I picked up Guitar a months ago to deal with the pain since all my drs said they dont prescribe pain medicine as a general rule and I pop a 500mg tylenol and try to go to sleep when its just too much to bare. Yes this is a terrible illness but it could always be worse. There are some out there who dont even get the option to move on. I am thankful for each day and I take one day at a time going outside when the weather permits and looking up at the sky and feeling the sun on my face and just being happy Im still here.

    Ending here If you read this thank you and if you benefit from it then Ive accomplished something. The things I would say to any of you in limbo of being diagnosed or have been
    is keep a log even if one dr doesnt read it or use it. Keep it anyway. You learn more about your condition and the way you and your body handle things then you would think. Join sites and talk to others who have this condition or even other worse or lesser conditons. We all learn by talking to each other and our words can embrace some who may be struggling. Try to eat better too, this should be a given.You are what you eat and since some foods are triggers learn what your triggers are. Take up an instrument or hobby I never thought it would help as much as it did, and all that time I spent in pain I learned a life long skill.
    Never give up. If you get depressed talk to someone dont go into hiding about it. Part of this condition messes with your chemicals in your brain and can make you think very negatively and expressing yourself will help you feel better and change the chemical balance.
    Take the time to come to terms with things and dont rush yourself to get better try to be patient lord knows we all have to have some for these appointments 🙂

    Thats all folks.

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  • By Katie M. Golden Moderator

    Eagle6205,
    Thank you so much for sharing your story. You have an amazing attitude about your condition and have wisdom beyond your years on dealing with your chronic condition. This disease is going to be a part of you for a long time and having a positive approach to it will only help you to succeed and stay sane!

    I know that you just received your diagnosis of hemiplegic migraines and you’re trying to take it all in. And in the past year, I can’t imagine how many doctors you’ve been to trying to find a cure. I want to suggest a few things to you. If you’ve already been down these roads, that’s great.

    The doctor who diagnosed you seemed to be very proficient in Migraines. What kind of doctor is he? A neurologist, I assume? You may want to ask if he has the designation of a Migraine specialist. These neuros only see headache patients and are the best equipped to handle your condition. If he’s not or you’re not satisfied with the diagnosis or treatment plan, get a second opinion. It never hurts. Here’s info on Headache Specialists and how to find one if you are interested:
    https://migraine.com/blog/how-are-migraine-specialists-different/

    I am a little concerned that you experience muscle weakness even after you’ve recovered from a Migraine attack. That typically goes away after an attack, but I’m not a doctor. There may be physical therapy you can do that could improve your function.

    I’m also sure it’s overwhelming trying to decide what medicines are best for you. Magnesium is a great OTC that not only can help in preventing Migraines, but it also helps muscle pain and cramping. Taking other preventative medications could decrease the number of attacks you have. Hemiplegic Migraines are hard to treat with abortives like triptans or DHE as there could be contraindications with taking them, so make sure your doc knows everything you are on, including OTC meds. The link below can give you the basics of preventative and abortive medications as well as other more natural approaches that could help you.
    https://migraine.com/migraine-treatment/

    Feel free to ask more questions and please let us know how things progress!
    -Katie
    Migraine.com Moderator

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  • By Eagle6205

    Hi Katie,

    Thank you for the reply. I appreciate your thoughts on this, I looked into my Dr. Who was at the University he has evidently 7 years experience in Neurophysiology and he specializes in treating Epilepsy,Headache and Vertigo. I don’t recall if was a member of the American Headache society or a Migraine Specialist. However I do remember him telling me most people have to see 2 doctors, but by seeing him I would only have to go to one. The appointment was about 2 hours long and a lot was covered so some specifics on that I don’t recall.

    I had a read through my medical logs Ive kept and I began noticing a pattern with some of these attacks. A few started with first,a Deep sense of nausea followed by tingling in my left hand,then repeating myself on some short sentences,speech slurs,then I was unable to speak. I could only murmur letter sounds,my arms became extremely weak and I had to take deep breaths intermittently and could feel my heart rate come to a quick drop in bpm. Arm and leg on the right side went numb.

    My headache would then alternate from the front left to the back right on and off. My left eye always seems to feel squeezed shut. Then extremely bad nerve pain my right leg,right side of face tingles but left side Hurts. Pain came on and off in right leg,I could speak in small spurts but the ability to do so would leave me. My eyes seemed to lock in place at one point and I could not look up. I spaced out and just blankly stared though conscious and aware of what was going on. Maybe this was just a deep moment of thought with all this going on and the blank staring only happened once. The Entire episode lasted 2 hours.

    The deep Nausea followed by tingling in one of my hands or arms was a common precursor to these attacks though not every attack. In my logs I have 18 full on what I classify as attacks. And several other noted onsets of most the symptoms but with ability to speak some at least and no severe numbness like in the full on attacks. I also noted that there was one occurrence where I had all symptoms at about a 7 in severity which lasted “3 full days! The deep nausea feeling did not leave like it usually did for 3 days with severe leg,hand and face pain.” Ive noted also that 90% of these attacks had predominantly left side symptoms.

    I cant really say for sure about the amount of time of when it started but I had headaches that never seemed to end of varying severity. Staying between a 5-9 scale. without the numbness and tingling in any of limbs. Also the left side facial pain was a huge concern of all my symptoms for me. I remember saying that it felt like I had been punched in the face by Tyson himself or that my face felt like it was literally having the bones in it shattered slowly from pressure.

    Lastly I did note that on some occasions though few I would see a blotch of color in my vision that didn’t really stay but persisted on and off in some of these attacks. Most times it was blurred vision in my left eye however on some occasions both would blur like I had just exited the pool.

    I hope this information helps anyone who is looking for answers and I also mentioned this to show that all these fit right in the category on Hemiplegic Migraine symptoms that Ive read about. Further leading me to believe that my Dr may actually have been right. Its still settling in for me.

    I feel as though I should try to maybe post my full story of how I went from healthy to this
    In just hours somewhere for people to read on including my symptoms log for Medical research for health professionals since even my Dr. told me most his patients don’t even have a log and one as detailed as I kept is rare. Before I came to this forum I was being tested for Multiple Sclerosis. I had made an initial post in a neurology forum about a Pineal Cyst or possible Tumor being the cause of all my symptoms or MS I posted a long list of symptoms and some people said I should talk to a shrink including one neurologist I went to, who said None of my symptoms matched any neurological condition known to man.Then my Dr. tells me there is only one known condition that can cause all these symptoms in this order. Haha

    I feel as though I’m writing a book someday s with the amount of information posted in various forums and hand written in my log book. I am sitting at 30+ filled front to back pages with documented attacks as well as a hand full of illustrations to help my drs see the exact origins of my pain.

    As far as the leg weakness goes for me I just honestly dont know. To me at first glance I could have sworn I had a stroke even my drs kept asking if that had been ruled out, but all tests were/are normal. My Ms specialist is the right hand lady of the man who founded the MS Institute here in Oklahoma. I was originally going to see him however he was out of country. Shes been practicing medicine since the 60s and did everything in her power to solve the puzzle including an EMG on my left leg which baffles me that it came back normal she ran all kinds of blood work tests including a last ditch effort of an HIV test since HIV can cause neurological symptoms and muscle weakness. Which was negative.

    With ALS being ruled out by EMG and MS being almost completely a NO since all MRIs were clean and he doesnt seem to think its nessessary to push for a test for Muscular dystrophy
    his diagnosis is the only thing I have to go on. :/ And even it sounds like it doesnt explain everything namely my legs and NON STOP pain since the first attack. Like you said weakness should leave after the attack should it not? If these come in episodes shouldnt the pain subside between them? I kept telling him I didnt think it was for sure Migraine because they end at some point. He kinda dodged those questions.

    Anyways Ive said enough thank you reading.

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  • By Katie M. Golden Moderator

    Eagle6205,
    Thanks for sharing so much information, it will definitely help others who visit this forum. And I definitely encourage you to share your story on our site (not just in the forum). You can do that here: https://migraine.com/stories/

    It sounds like you have a really great doctor, so that’s good to hear. But you can always ask for a second opinion just to feel more comfortable with this diagnosis.

    A lot of your symptoms do have characteristics of Migraine. It’s scary to have these stroke-like symptoms and not have a more serious diagnosis. But the fact is that Migraine is a neurological disease. Like autism, people experience their attacks on a spectrum. Some patients only have attacks that last an hour and can be treated with OTC meds, while others have serious, debilitating issues associated with their attacks.

    The blurry vision you mentioned is most likely what we call an “aura.” Seeing spots, blurry vision or even partial blindness can occur before a Migraine attack. (https://migraine.com/migraine-types/migraine-with-aura/). Having difficulty speaking or forming sentences is also a characteristic of a severe Migraine, as well as paralysis on one side of the body. Most people don’t realize that Migraines can have such an immense impact on people.

    The consistent pain you are experiencing is felt by all chronic Migraineurs. Having chronic Migraines means that you have 15 or more headache days a month. Three years ago, my episodic Migraines became chronic and there is not a day that goes by that I don’t have some form of Migraine. You don’t necessarily have to experience all of the symptoms (loss of speech, aura, paralysis) every day in order for your Migraines to be chronic. Sometimes your body is constantly firing through the pain pathways and you can be in a state of status migrainosis (https://migraine.com/blog/what-is-status-migrainosus/).

    I also want to share with you two accounts of people having the same symptoms you do.
    https://migraine.com/blog/an-interview-with-migraine-advocate-serene-branson/
    https://migraine.com/blog/what-does-aphasia-feel-like/

    So you see Migraine can pose all the same symptoms you have. However, I am not a doctor! I encourage you to ask questions, seek another opinion and see other specialists if you don’t feel comfortable with your diagnosis. You have to be your own advocate, because no one else will do it for you.

    -Katie

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    • By Eagle6205

      Katie

      Ive been giving some thought to this and Ive got a serious question for you since you may be alot more experienced in this area and seem highly knowledgeable on the topic,having talked with the many sufferers of migraine over your time here as a moderator and you seem to know the ins and out of the Drs to see as well.

      My Question is this. What is the prognosis for most sufferers in the severe cases of Hemiplegic migraine when it comes to college and more specifically once they have finished college, entering the desired field of work with this condition? Also the same applies to an everyday job. I know some just throw their hands up in the air and say they have no other option but social security and some have no option since they have suffered a stroke,but what about those of us who are capable of working up until we have an attack but are limiting by mobility issues?

      Have you seen any success stories of people with this condition going on to finish and entering a successful career with this condition?

      Im very concerned about this and here is why. I was an attending school for Aviation Maintenance Technician when I had my first attack though it severely limited my ability to walk I could still walk and kept going even though I was only able to limp a few inches at a time just baby steps. However the attack I had at school which led to a board determination that a medical drop was necessary until I could “Get Better” led to me being basically unable to return. There are 3 portions one must take to finish school. Each is 6 months
      I finished my first went onto secondary training due to a derailment our of schools program and then got halfway through my second part only to be dropped. I need 9 months to finish. However there are guidelines to follow set by FAA in which the program must be completed in a set time frame.

      So my chances even if I could return, that I would still finish are slim at best. I also lost my funding to go back to this specific school now since the funds were frozen and can only be for so long as well as other extensions filed for my tuition have reached max.

      So I’m now beginning to wonder what will become of all this? I don’t know how schools will react to me enrolling with such a condition since they told me at my prior that I was a liability to the other students around me given that it was a shop setting. Even if on medication you can still have an attack which prompts immediate medical attention since it could be a stroke. If I enter a normal office type of work there is still the general consensus by most employers you are a liability. How often are people who have this condition hired? Do they have to tell the employer they have the condition? Mine would be hard to hide if I didn’t tell them, due to my walking. I feel as though I should inform an employer of my condition so that they will know in case I cant talk or speak or fall unconscious in say a backroom. If I went on to finish my program there are area of working in my field which would become highly dangerous to myself or others if I were to have an attack which left me unable to move.

      I know thats alot for one person to answer but its a pretty serious question and Im sure others who have this will be wondering this as well rather newly diagnosed or existing.

      Thank you for your time if you can answer any of this I would greatly appreciate it.

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    • By Katie M. Golden Moderator

      @eagle6205,
      Sorry for the delay in responding. I’ve had a few rough Migraine days. Plus your question is very complicated. I can only tell you about my personal experience and maybe that will shed some light as to how you want to continue.

      I’ve always worked in an office setting. I always let my boss know (after being hired) that I get disabling Migraines. At that time, I would get 3-12 a year. I’d save a large portion of vacation days to use if I got more Migraines than usual. Most employers were sympathetic.

      When the Migraines turned Chronic, I had been with my company for 9 years and my boss was great about it. HR helped me learn about the Family Medical Leave Act (FMLA) which states that your employer cannot fire you for being out for an illness up to 12 weeks in a one year period. You may not get paid while you are off, but they are required to keep your job for you. Here’s some info on FMLA: https://migraine.com/blog/the-family-medical-leave-act-migraine-patients/

      I worked for 2 years after the Migraines turned chronic. It was extremely difficult. They let me cut back my hours and I got help to handle my work load. But it was overwhelming. Toward the end, I basically would email my team each morning when I got up to let them know if I was feeling well enough to come in that day or would try to work from home. Two years of that and I realized it wasn’t fair to anyone. So I went on short-term disability to try to get a handle on my health, then quickly realized I was not able to go back. I am now on long-term disability and was approved for Social Security Disability.

      Also when the Migraines turned chronic, I was in my second semester at Georgetown University in their Master’s program. I had to leave school and it broke my heart. I turned lemons into lemonade when I decided that I would try my hand at writing. Eventually I was hired with Migraine.com and am in control of my own schedule which helps in managing my illness. I am very grateful. For me, I’ve also accepted my new reality. I don’t have aspirations of going back to Georgetown, mostly because I don’t think that I’ll ever be able to work in my previous field.

      That’s my story, but it doesn’t mean that is going to be your story. You are in the very early stages of your illness. It’s ok to take a break, focus on you, see how all this shakes out before you need to make decisions about your future. My advice is to fight this with everything you have. I know you’ve been to a lot of specialists, but keep going until you are comfortable with your diagnosis. And then try anything and everything to help you manage it. Trust me, there is always something more you can throw at it that may stick. It will take a lot of trial and error, so you have to be patient. Don’t give up hope.

      On the flip side, be prepared to have a back-up plan. If your condition doesn’t improve in another year, maybe then you should start thinking of another field you can work in. You’ll know when it’s time to explore that path. I’m sure you have so many emotions and fears right now. Talk to your support system and continue to connect with other going through the same thing.

      I know this wasn’t a black and white answer, but I hope it helped some.

      -Katie

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    • By Eagle6205

      @katie

      I appreciate your response and attempt to answer some of the questions I had. You have remarkable courage in posting your own personal experience with this. Ive read several articles now on this and have listened to read many stories from those who suffer. It seems a common theme that the person affected has their life flipped upside down with the usual end result of not being to maintain their symptoms to hold their current position in their line of work.

      I will admit though I am doing my best to fight this and learn to live with it. I am afraid of what lies ahead given the severity of my symptoms,most the stories I have read of those who have the extreme attacks and suffer some sort of seemingly permanent damage actually end up having ischemic Stroke. Some are so unfortunate that they suffer not one but some several some even die due to them. So for me to say Im not scared would truly be lieing.

      Just yesterday I finally managed to get the “MagOX” brand Magnesium 400 Im not sure if thats what I was supposed to get or not but if it is Im going to give it a shot. With the pain my legs are in I think Im willing to try anything. It says on the box it helps with Nerve and muscle function. As I read more about this condition Im starting to gather questions for my Dr and they seem to be mounting rather quickly.

      Family friends as well other family are getting really pushy with me as to me doing something for income. When they see me they see the me that is in pain but baring it and trying to maintain so when I even have a little bit of a limp when standing Im almost frowned upon as if I’m fine now. But the fact is that when they arent around me to know just how bad it is . I have many times where I must lay down for hours,Or I fall like I did yesterday on the stairs. Or try to cover up speech flaws and adjust how I speak to avoid the slurring I encounter at various times. I try to hide it because people look at me like Im young Im supposed to be healthy and fine.

      I would rather keep trying to work so I can have a life of my own then be stuck on a fixed income. However I need to get this under control first and I need some time to do that.Since alot of people tend to look down on you if your young and on Disability. They wont even think about what could be wrong they see that you can walk, you can talk, you can work!

      Its sad how misunderstood a person is when they are sick with something people haven’t heard of. It would seem as most don’t even want to give the time of day to understand. I think the name of this illness really tones down how people react. The second they hear the word migraine they just brush you off like you are whimpering about a headache. When I told my brother his response was “Oh. Well if that’s all that it is really is just go get some Excedrin or Motrin and see if that cures it. If its just a headache or is classified as one that should solve the issue…” However hes been with me to the ER and he knows how severe it gets. I was baffled by this reply. However it seems the common theme so I don’t even like to tell anyone whats wrong because when your ill everyone’s a Dr and if you don’t listen to them its your fault.

      Another one is…I was saying my legs were hurting today and the person says to me why don’t you try walking maybe getting more exercise ,put on some ankle weights to help make your legs stronger. -.- Sigh Yes that will help build muscle and exercise is a good idea but there is a huge problem it hurts to walk and weakness is causing me to fall. These are great examples of how people downplay it. Im sure a few can relate.

      Thanks again katie.

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  • By ShaggyKilgore

    Hi everyone. It has been a really long time since I’ve written about my episodes. Luckily, I’ve found ways to manage them that seem to almost work for me. #1, recognize the precursors and warn family members of possible attack. For me, the “out of it” feeling, the ear ringing, the unusual reaction to smells, the sudden redness in my face and, most of all, the sudden feeling of extreme exhaustion are some of my tells. When I feel one coming on, I let a family member know, usually my husband or my oldest son, so that they can watch my youngest son, who has autism, just in case. #2, when I feel a possible attack coming on, get into an appropriate location where I will not be in danger. Since my attacks coincide with all voluntary functions, including swallowing, it is important that I have my head elevated and to the side to prevent saliva from pooling on the back of the throat and possibly choking me. Not a fun sensation; it is the closest thing I’ve felt to drowning actually. #3, when I know I’m going to put myself into a situation where I risk having an attack, plan for a few hours afterwards to recover, just in case. In my case, I get my attacks when I rest after physical exertion. And by physical exertion, I mean typical stuff that most people take for granted: an hour of housework, putting on a birthday party, a walk on the beach, and, most of all, a trip to the store. All of these things have been known to trigger an attack for me. I use a motorized shopping cart whenever it is available, as a result, and feel kind of guilty for doing so because my conditions are such hidden ones that I feel I’m being judged for not being sick enough to need one. But, I’ve gotta do what works for me. #4, be mindful of sudden changes in the weather. Since sudden barometric pressure changes have been a trigger for me, I try to plan my activities for days that do not coincide with them. Essentially, not adding triggers to each other whenever I can. #5, be mindful of my hormonal fluctuations. I still have my menses, and my monthly hormonal shifts are also triggers. I keep track of what my body is doing and, again, plan my physical levels and possible need for assistance accordingly. #6, try to get as much sleep and water as I can. That one goes without saying. That helps my whole body. #7, take large doses of magnesium and vitamin D. The magnesium in particular helps quite a bit with all of my migraines actually. My neurologist recommended it because of the research about migraine sufferers tending to not retain magnesium as much as a person who does not suffer from migraines. #8, be mindful of my blood work results. I have found that my body is having a really hard time retaining a host of essential things like vitamin B12 and vitamin D. Since I cannot get much vitamin B12 from my diet, even though I eat foods rich in them, I need monthly shots. It is uncomfortable, but worth it for me. It has been helping me from feeling fatigued as much. That is a two-edged sword though because when I feel less fatigued, I feel more able to do things. But when I do more things, I run the risk of having an attack. So on the days that I have my shots, I stay mindful of my physical level and resist over-exerting myself (unless I have my support system in place). #9, keep researching my symptoms and be my own advocate. This is a highly unusual form of migraine, so chances are that I am more knowledgeable of it than most of the doctors I meet. So I try to learn as much about them as much as I can and share the information with my support system so that they can clearly explain to medical personnel what is happening with me in the event that I’m sent to the hospital and cannot speak for myself. Also, I am wondering if what I have is just a hemiplegic migraine. Many of the symptoms fit, but its affecting my whole body instead of just one side at a time combined with it occurring when I rest after physical exertion (not to mention the malabsorbtion of vitamins/anemia) leads me to suspect a metabolic condition. I’ve been suspecting it could be another rare disorder called hypokalemic periodic paralysis (or hyperkalemic, depending on whether it affects the sodium or potassium channels in a person’s voluntary muscles). It would be really hard to get an official diagnosis for this though because it would involve essentially planning ahead and triggering an attack, and then them doing some tests on my muscles while having the attack so that they can determine if my body is releasing all of its potassium or sodium at once, or whether it is normal. That would be a REALLY hard thing to do. Seems like people only get a diagnosis for this when they are in the ER during a long attack, and when they are lucky enough to have a savvy doctor order it and such. The MDA is researching this form of periodic paralysis because it is a muscular dysfunction, so research into it is going on right now. Not on me, but may be a possibility if a doctor determines that it is more than a migraine (as if that is not nearly enough to be taken seriously). In the meantime, I am supposed to not drive because the DMV is treating it like epilepsy or something (even though I do not have sudden attacks when not at rest). I do have to drive sometimes though because I live far out in the country where public transportation and/or taxi service are unavailable. I feel guilty about this all the time, but I don’t know what else to do. I hope this is helpful for others. Maybe, together, we can find ways to manage our symptoms and find cures for us someday. I wish you all a good, symptom-free day.

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  • By Lisa Robin Benson Moderator

    Hi Shaggy,

    I just read your update now and am so glad to see you are doing better. Also, that’s interesting about the hypokalemic periodic paralysis–it’s always good to never give up looking for possible answers. Thank you for sharing your story!

    Be well,
    Lisa

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  • By Eagle6205

    Well Its been about 2 months since I last posted. This is going to be a short update to let people know how the Magnesium worked out for me. Since I started taking the Magox 400 on March 5th of this year. I noticed within just a few short days my pain went from an 8 to a 2 It never stops but… it seems SO MUCH MORE BEARABLE. I noticed this within just days. I have questioned myself as to the medicine doing this or it being just my mind having a placebo effect on me. However I missed the medicine 3 days. Forgetting to take it I noticed within 2 days My pain intensified. I started back on it and it went back down within about a week again. However…I did have 2 days where I did have a mild attack where I was in bed pretty much out of commission for the duration. After about two hours it let up but was fairly still present. I managed however to cope and carried on with nightly tasks as well chatting with friends online.

    My Weakness in my legs however I must sadly report never changed. I continue to fall at random times. This morning wasn’t fun I was in a lot of pain in most my body but I just shrugged it off while while sitting down for a few hours. I have to my good days and my bad days still just more good then bads lately CROSS MY HEART ON THAT lol. I still find great peace in my Guitar learning and it keeps my mind occupied I Quite enjoy it and I learn something new everyday which keeps me using my brain and keeps me sane.

    I’m happy to report as a birthday gift to me my family caught up my tag and insurance and I was able to feel a sense of Independence come back into my life after having to ask my family to take me to places when I needed to take care of affairs. But…I honestly am scared to drive far its been sort of a battle to get this part of my life back. And the pain in my legs is very intense while driving. I also have to make mention I bumped into a lady at a stop sign my first day back behind the wheel. My car idled into her as I looked down for that split second which made me really Get my Stuff together. No one was hurt no damage was done it was a tiny bump but it scared me.She was very sweet and insisted she was fine and she drove away. I was so freaked out I instantly got out and apologized over and over again telling her I had Insurance and I would take full responsibility if she was even a little unsure. But she refused my info and said it was no big deal she was fine. I came home shook it off and got back out that same day and drove to the city to go look at guitars with my Grandad. So it was a positive experience though not exactly the first thing you would want to happen you first day back driving after nearly a year and half.

    My next appointment is already here as of tomorrow I go back to the University and report in on the Magnesium and I believe Ill have to schedule yet another MRI for stupid brain tumor.
    but I think it will be Ok. I’m not confident in nor ready for meds like triptans since this is a life long condition, I fear the long term effects of them.

    Life is bearable at this point in time its 30% better then me laying in bed in extreme pain with no medicine for pain and no diagnosis wondering if If I would still be around to tell the tale. I find I still have quite a few hiccups when reading and writing and have to proofread a lot I also have occasion where I don’t understand words and some English is confusing as well a light slurring of words and sentences that Shake off by not talking as much. But I feel like I’m making progress and pending how this next appointment and MRI I will be seeking Work of some sort soon to pay for my daily needs at least and take the strain off family. I really want that A&P License and to go back to school to finish but I just cant shake the inability to stand for long periods and random leg collapses I get.

    So that covers the update. I’ll post again tomorrow and let you all know how the appointment goes and what he says.

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  • By Katie M. Golden Moderator

    Eagle6205,
    Thanks for the update. Let us know how your appointment went. Did you discuss the leg weakness?
    Your family’s generosity is amazing. You’re so lucky.
    It definitely seems like the magnesium does make a difference, I wonder if increasing the dose would help with your leg issues. It definitely helped with mine, but discuss with your doctor.
    Glad to hear things are positively progressing. Keep us updated!
    -Katie

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  • By Eagle6205

    The appointment went well. I had a good list of questions for my Dr. We discussed a number of topics from symptom frequency,my current medication,dosage as well as future options. Over a period of about two hours you can imagine the volume of information discussed.
    I brought my medical log with me and caught him up to date on my symptoms and the few attacks I did experience,how they occurred the order of symptoms and their severity.

    I was overall very satisfied with how things went, He answered every question I gave him in detail and even ended up covering many topics I had questions on,indirectly. These are some of the questions I asked and answers I was given to them.

    Q.)Given the time Ive been taking Magnesium,besides the pain and frequency of my symptoms decreasing,Do you recommend I increase the dosage of Magnesium or stay with the 400mg?

    A.)At this point if you are having less attacks then 3 a week you can continue the dosage or you can increase it if you feel ready to. I have patients who take it twice a day and it does seem to help them however if your satisfied with the Result you can proceed with the 400mg that is entirely up to you. If you choose to increase it later call me.

    Q.) Given my Improvement with the magnesium would you recommend I still experiment with triptans at some point?

    A.) Not at this point, If you don’t need to take a triptan to reduce these attacks or stop them and the magnesium is working then I dont see the need for it.

    (Ive told him I don’t like meds and want to take as few as possible.) He respects that and I Appreciate it. Given the fact that triptans have some nasty side effects and it takes a while to find one that works for me, I don’t see the point in taking it as well as its contraindications. Im fine with taking a natural supplement like magnesium, if it helps. Luckily enough for me I may one of the people who have a magnesium Channelopathy.

    My Biggest Concern Now. The Leg Weakness.
    Q.) Though Improvement in pain and symptoms, There has been no improvement in my leg weakness and Im still having random weakness to the point of falls and having to catch myself alot as well as use the walls and furniture to get down the hall and to the kitchen.
    Do you believe this is attributed to my condition?

    A.) At this point I would have to say yes I believe its part of your condition since the MRIs and other tests by your other drs are clear and this seems to be the only thing that is the answer, I believe it would have to be part of it somehow.

    He had me sit on the patient bed and did the normal Neuro tests again on reflexes and such. When he did the test after checking my left leg with a safety pin prick test and I told him that I had a very decreased sensation in my left leg and could not even feel the tip of the pin at the front, he asked me if I had the EMG Report from MS specialist. He thought he had it but wanted to look it over again as well as ” All my MRIs”. He wants to see every MRI Ive had thus far my CTs the reports that I have and he wants me to get them to him as soon as possible, he told me he may want to want another EMG.

    Im unsure as to why. I asked him “Is it because of my generalized weakness and pain in my legs? Or is ir for comparison? He said The generalized pain and weakness.
    So my next appt is in 6months but he wants the scan disks as soon as possible for review pending the review of all my images he may not perform another EMG.

    Though it was a bit concerning it was very comforting to know he was going to take his time to thoroughly examine the Scans once more. Even if he does find something terribly wrong I would much rather he find it then, me to continue on with this plaguing weakness. Though not cripple I have my good days where I can walk but it hurts immensely after about 5-10minutes and some days its hard to even get down the hallway they just dont want to move or I just collapse.

    I asked about my risk for stroke too I wanted to mention that here as well. He told me that although the risk is much higher for me and heart problems compound those risks. The actual chance of me having a stroke which would be a”Migrainous Infarction at the Frontal Lobe” is slim and did tell me that, should the situation arise where I find myself in the ER with severe symptoms of stroke he would recommend TPA even if they found out later I wasn’t having a stroke, since the Actual risk of an Internal Cerebral Hemorrhage is quite slimmer then Drs say it is. UNLESS you are on anticoagulants and in which case it would be much greater. He said he would rather give the TPA then for me to have a stroke without it.

    Lastly I made Mention also of forums posts I had read in which chronic migraine Sufferers had a note from their Dr. to give to ER Staff in the Event of a severe attack to save time tests and Dr. resources. He had never heard of this nor had a patient to ask about it…He thought it was a great Idea and wrote me one to carry on my person to give to ER staff.

    Ok well that’s a lot to cover and there and I didn’t include all questions but to any other sufferers it may give them an idea of what to ask their Dr. and or what a person experiences in the trials of this condition at appointments. I don’t mean to be so long winded on my posts and I appreciate your reading of them and hope I am helping others here.

    Thanks Sincerely.

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  • By CelticGoddess

    Hi all. I’m new here. I have had migraines since I was 10 or 11yrs old. Some worse than others. (As most migraineurs understand). On tues, while at work (I work nights, as a nurse) I felt like my head was going to explode (if anyone has seen the movie “Scanners” or “Videodrome”, the scenes where the head explodes, it was like that). By mid shift, one of my co-workers noticed that the right side of my face was drooping slightly and when I took off my glasses, my right eye wasn’t tracking. Being as I am a nurse, I of course went straight down to the ED. well, actually, no. I finished my shift, drove the 20 miles home and waited until my PCP’s office opened to get an appt. (She told me to go straight to the ED< do not pass go and do not collect $200 and do I know how stupid that was?)

    Long story short: I didn’t have a stroke. The headache I had had for 7 days (by that day) was more than likely the cause of all my problems (and oh, by the way, did you know you have a sinus infection?) My PCP is sending me to a neuro, the closest we have to a headache specialist in my area. As I have a history of hemiplegic migraine, she is going with that. My former neuro (I moved, he didn’t. Darn, he was a headache specialist) believes I had one when I was 16 based on my history and symptoms.

    Anyways: After having gone 29 years without this type of issue, I am not a happy camper. I had been on Topamx for about 10 years until they had to take me off of it due to kidney stones (Did you know that topamax is linked to kidney stones?) I had just started back on it (only up to 50mg) then this hits. I still have residual facial droop. At least I can snarl like Angus Young.
    A lot of people, even those who have migraine (most of the women in my family) don’t understand hemiplegic migraine. I had to explain to my manager that I couldn’t work tonight because a) I am still dizzy (whether from the sinus infection or the migraine, I don’t know) and b) I just got out of hospital last night. He wanted to know why I was admitted. Aye yi yi.

    thank for slogging through that. I don’t know if I make sense or not. It’s nice to know that I am not alone though.
    CG

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  • By Eagle6205

    You are definitely not alone. There are a good number of stories out there of people have suffered from migraine since they were young adolescents. Given how rare this condition is the stories that are out there give you a good idea of just how bad Hemiplegic Migraine is.

    You said your headache specialist believes you have hemiplegic Migraine Based on one of the attacks you had when you were 16? Have you not had more then one Hemiplegic Attack? The reason I ask is because often times many people cant get this diagnosis even with a history of attacks unless they are medically documented and you’ve had at least two attacks. Not saying that you dont but Ive read You have to meet a strict criteria and all other conditions have to be ruled out before they can diagnose it. Thats one reason we often end up seeing a slew of Drs before they get to the bottom of it.

    You said others in your family suffer from it as well so perhaps that also may have influenced the diagnosis, I cant imagine having a whole family of hemiplegic migraine suffers. I have the sporadic form and it has taken every asset my family has to keep me out of harms way and safely recovering. Do you only get the face drooping or do you have the full on shabang where you cant move limbs on one side too? Of course some cases are more severe then others.

    I like the Angus young reference you did there haha. My Dr was telling me there are some people who take Topamax and say they are never getting off it. But Ive heard alot of not so good things about it as matter of fact after my first appt my mom was telling me later that night shes glad I didn’t choose to take it because it was on the news saying it had links to Alzheimers or something like that. Though everything will kill ya these days. Obviously though the benefits outweigh the risks in prescribing it.

    Does your work know about your condition? I gather you haven’t told them about it. I asked my dr about who I we have to legally notify we have the condition he said No one. So thats good news for you, I wonder what they will say to you or how they will react if you explain your condition to them should you so decide. Ive already had my fair share of people thinking its just a bad headache that can be cured with excedrin and NSAIDs of the like from people who hear the word Migraine and instantly down play the severity of the illness.

    Anyhow you’ll find a lot of good information on this site as well as knowledgeable people who are sufferers and family of sufferers here,just not near as many hemiplegic sufferers given its 1 and 10,000 people diagnosed with it.

    Any how Welcome to you CelticGoddess.

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  • By CelticGoddess

    Eagle:
    Thank you for the reply. I need to clarify. I started seeing my former neuro after having a similar episode when I was 25. So, at 16, and again at 25. I am not 100% sure that I have been officially diagnosed. I just remember that my former neuro said it sounds like i have hemiplegic. However, this is something i have learned as a nurse, and I am guilty of it also: A patient hears what they want to hear a lot of times. I will tell my patient to do and they hear, don’t do b. Not the same thing. I will see the new neuro in a couple of weeks. (Like I said I moved, my former neuro didn’t, boo) I need to get some sort of diagnosis because I have to get FMLA, because if I miss any more work for this, I will get suspended. Fortunately, all I will need to say is I have migraine. I don’t plan on telling my manager any more than I have to

    The time before when I had this, I had full on weakness. This time, it was only my face and aphasia. Still enough to scare me half to death.

    In my situation, the topamax is worth the risks. It has decreased the number of migraines I have. If I can find something that works better with fewer risks/side effects, I’ll go for it.

    My nephew was diagnosed with FHM about 4 years ago. HIs mother has them (She is my SIL). I knew he has had migraines since he was a kid. I didn’t know about the severity until just recently. He would have graduated from college this may but due to the severity of his migraines, he will graduate in Dec.

    And as far as people downplaying the illness; I am used to that. I have co-workers complain about having a migraine all the time. They call it a migraine because it’s a bad headache. I just ignore them.

    I work with 3 people who have migraine (not just say they have migraine). My pastor also has them so at least I am in good company. I just want to know I am not alone on the off symptoms.

    CG

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  • By Eagle6205

    Well good luck with work CelticGoddess. However If you need to get a diagnosis in a set time you may been in a bit of trouble, It took me over a year to get diagnosed with my condition I saw many Drs. Several Neurologists,A NeuroSurgeon,A Neuro Opthalomologist(“Best in the State”) ,an MS Specialist who is just under the founder of the MS Institute in the state. Ive had an EEG,3 or 4 CTs,about 6 MRIs several Blood tests,A battery of Several other blood tests,an HIV test and Finally an EMG. And only after being referred to the University Via another Appt…on the grounds of my leg weakness by slim chance did I find the Dr I have. And my Diagnosis. I have had every test but a Lumbar Puncture and a Muscle Biopsy.
    And pending reviews of other tests of the past may need another EMG by this Dr.

    After stating that information you can see why I asked if you had been diagnosed with only the attack at 16. Also I wanted to point out that if you want a diagnosis in a small timeframe its not likely to happen. Even if you have had the symptoms in the past,You should make sure to rule out other conditions before going with Hemiplegic Migraine because MS can cause similar symptoms. Theres also the chance you may have more then one condition. All these tests take along time. the MRI alone takes weeks to schedule.

    Kinda Like my MS specialist told me.”You dont want to be diagnosed with anything.” I now know what she meant by that. She told me often times people end up with these conditions and the one they are with leaves them. Marriages fail, and families burdened. At the same time in my situation. I needed that diagnosis and she knew it but she was honest and told me she didn’t have a clue as to what it was,though she did come back with some guesses to help ease my mind I knew she was drawing straws to help me cope and buy some more time.

    I hope you find your answer however dont be surprised if your Neuro has never heard of this condition. Since 90% of the medical community doesn’t even know it exists. If you read through some of my posts you’ll see how easily some will brush you off as having a “Psychological Issue” Even my MS specialist said though she didn’t believe that some symptoms can actually be Psychologically manifested in some cases, I never disagreed as the mind is a very powerful thing however I knew what I was feeling was real and I’m sure the same applies to many here.

    The best advice I can think to give you is be patient. Dont try to rush anything. Even if you do get diagnosed “officially” Your already taking Triptans so the next course of action would be who knows what. Having only had 2-3 attacks in that long of a time frame I would say your doing much better then alot of us.

    Best wishes to you, Hope you have a great day. 🙂

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  • By Eagle6205

    So its been 5 months or so.

    I had my next appointment with my NeuroPhysiologist. Sadly I’m back in limbo of diagnosis again. I have the tumor yes and I have Sporadic Hemiplegic Migraine. The magnesium is my life saver. However…My legs are being ruled another condition and Im being sent to another man who might give me the answers I seek about my walking. He will take even longer to see then it took me to get seen at the University. Since all my tests dont show anything and its been awhile he ran another battery of blood tests and will let me know if he finds anything,till then I must wait to see this new Dr. He is sending me to see a Rheumatologist. But wants me to seek a PCP to help with the diagnosis.

    I have had great luck with the magnesium once a day before bed 400mg. There are some days where I can nearly walk again without a limp but the next day usually is followed by more limping. I well tell you typing is annoying at times. Seems like I have to constantly spell check or make sure I didnt type the same word twice. I also still keep saying things I dont mean to say in sentences. The Occasional feeling of shoulda had a V8 Numbskull feeling at my forhead and struggling to speak but it only last a few seconds and I muddle through.

    Barometric Pressure changes I must say I HATE…
    We had a storm of a cold front with very cold rain move in and the next day OMG the pain was hell. I was in bed and awoke barely able to get to the kitchen,I had a bad pain in my left quad burning, That old familiar face numbness and burning sensation at the back of my skull and top of my head as I made my way to the coffee pot. I was standing in the kitchen later that day and suddenly I yelled in agony had to stop the fall. I had a pain hit the side of my knee like a bats end was pushing in the side of my knee. I sat down for 2 hours off my feet. Stood up and within a minute I screamed and cursed a storm the same pain but 3x times worse I was done walking for the day as my leg gave out the muscle seized up and let out. I had my mom help me to my room and there I stayed in 8 scale of pain in my right leg the rest the night. The next day I had a burning pain in buttocks and lower back and a dull aching pain in right hip. As the day went on I got to feeling alot better.

    Today was my appt I informed him of this mess and he told me this time, he doesnt think my condition is doing this to my legs and something more must certainly be happening.
    I must admit…having had all these tests ran having seen so many specialist and then coming to the University to have an answer…all to find out I must again seek answers is very scary to me. You would think if anyone had it all pegged the University would have nailed it.
    I’m like great -.- Now Whats wrong?

    I dont see him again for a year this time as to allow to be seen by this new Dr. or pending blood test abnormalty. So heres hoping to the best,that I get it figured out. Im blessed in that Im alive,Im breathing,Im still walking,and Im not terminal. Many people would give anything to be in my shoes and not be in a worse off situation. So I am thankful I have my life still.

    Regardless of Diagnosis life goes on,make the best of it.

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  • By Eagle6205

    Well hello to everyone again.

    Its been nearly a year since my last post. To update anyone who was curious as to what happened I saw the Rheumatologist. The ran blood work at the appointment. He told me that he was diagnosing me with Psoriatic Arthritis and that pending blood work he would let me know more. I was uncertain of this diagnosis and felt like it was just to get my mind off things so he could focus on the real issue. Well I have been having more symptoms here and there or Psoriactic Arthritis, but I’m not convinced that is what I have.

    A few weeks went by and I got a call about my blood tests the nurse told me I tested positive on my ANA Panel but had no Rheumatoid factor and that the Dr wanted me to read up on Lupus.I had another appointment a while later and they wanted me to start prequenil to treat Lupus.

    I asked if they were sure and she said given the facts of your medical history matched with your symptoms yes, however we’re not diagnosing you just yet to follow your symptoms, but within a year I’m fairly certain we are going to be looking at Systemic Lupus as your Diagnosis. Whats odd is, Lupus is called the great Imitator and can cause a wild, WIDE range of symptoms and if it affects your kidneys can potentially be fatal though these days there is a greater prognosis. BUT its important to mention that I read Lupus can cause stroke symptoms and lupus causes attacks. Im not sure of all this but Ive accepted it
    as a possibility you should see the reaction of men when you tell them you might have lupus my brother said “But I thought mostly women get that” haha. Well men evidently do too.

    In the meantime Ive applied for disability and got turned down as I hear almost everyone does the first time. I continue to have severe pain in my legs and today sharp burning pains in my head on the top back right and far left middle side. I have tingling in my face above my eyebrow and right now in my cheek and jaw. Ive become somewhat accustomed to using my cane and though I hate having to use it if I go to anywhere that is farther than a quarter block of walking distance I’m gonna need it or I lose my balance and have severe pain in one leg or the other or both.

    I recorded a video the other day of my arm near the elbow having some violent muscle spams in which it looked like I was flexing my arm when Indeed I was completely relaxed. My mom witnessed this and thought it was strange too.
    I have continued my medical log to help my case and show my symptoms have been ongoing as well. I wish I could work but these conditions are seemingly consuming my body.
    I continue to have real trouble with typing the same stuff twice and I have to proof read often anything I post. Ive had two attacks since my last post in which I was talking to friends and could not speak struggling to talk then it became very slurred. It was pretty embarrassing. Last but not least I have been getting brain fog where when I wake up I am confused.

    I also have been having a hard time recalling what I did the day before it takes a few minutes before it comes to me. The weathers been very NON MIGRAINE FRIENDLY too and the past 4 days I had severe pain in my lower back and left hip, for two days I couldn’t even raise my foot off the ground without agony on the 4th day it let up. Today was good though till just before I got on here I began to feel similar pains.

    The last thing I want to mention is that I pulled my medical record from the first day all this started and I was very distraught, the ER PA. Not a Dr… Lied about my visit to the ER alot in the paperwork. He said I didn’t have weakness when I did, he then said later that I had weakness but that it went away when I focused on other things,which was a BIG LIE. They also lied and said my mom kept saying I just wanted to make sure he wasn’t going to die or anything… When she said that when I got there and that was it.

    They failed to mention I had to be wheel chaired in due to the inability to move my legs.
    He also noted high D-Dimer Levels but tried to explain it away as a false positive on the test. Well I poured over my tests and found out what each was and meant and I was very upset when I found that Cardio Embolic Stroke causes all the symptoms I had and is not usually detected on CT scan or an MRI. Since it comes from the heart pumping materials into the brain and then disappears later. It also in many patients caused high D-Dimer Levels.They also said I left with normal gait. ANOTHER LIE because when I left I was hobbling on one leg and they made me walk to the car in the rain, my mom had to drive to the door and help me into the car. They didn’t even offer me a wheelchair or to help me to the car. They wouldn’t even give me a Drs note, of which they told me they would when we called the next day, to tell them I couldn’t walk. She was hateful and said no Note.

    So I am now suspecting my very first attack was an actual stroke just as I had thought.
    My university argues with me that it wasn’t a stroke yet I tell him yes but your condition you diagnosed me with all symptoms leave. These have not in 3 years. He says yeah I wont argue that,there is that. But he says he doesn’t think so. Yet Sporadic Hemiplegic Migraine is known to cause stroke. So I am currently seeking a Dr to re evaluate me for stroke and by pouring over my ER records. I think I may end up finding out the truth soon.

    So that catches up everything in a nutshell over the time Ive not posted in some 10 or more months. Thank you for reading and I look forward to any replies or questions any of you may have. I probably shouldn’t share so many details but this is what its like being ill. Alot to speak of when talking about health over a years time.

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    • By DonnaFA Moderator

      Hi Eagle6205, I’m so sorry to hear that you have had such a time since you last posted. Some of the things you’ve experienced are frightening, and the resultant stress can be debilitating in itself. You may want to read Is It Time For a New Migraine Doctor, which includes links to help you find a headache specialist in your area.

      Please know that you’re not alone. We’re always here, or on our Facebook page if we can provide information or just listen. We’re glad you’re here. -All Best, Donna (Migraine.com team)

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  • By cyndredspirit

    Hi everyone,

    I’m hoping someone here can help point me in the direction of what questions and type of testing to request from a neurologist or doctor in the accurate diagnosis of either Hemiplegic Migraine or Temporary Periodic Paralysis. I have a 21 year old daughter who has been suffering from recurring temporary bouts of full body paralysis that disappear in 3 hours with no trace of headache or lasting effects. There is typically a light aura, sweats and general irritability that precedes them and she feels they might be triggered by changes in temperature. Once feeling starts returning, it comes back rapidly (within 10 minutes) and then she’s good to go. But during an episode she cannot move at all or feel her extremities. She says she feels hot before (and to me she feels feverish), and then really cold during.

    She saw a neurologist for the first time earlier this month after the last episode landed her in the hospital with breathing difficulties. After 5 minutes of questions, he is suggesting that it is hemiplegic migraines and wants her to take Topamax, which she is flatly refusing to take due to the undesirable side effects.

    She and I are unconvinced that these are actually episodes of HM. His diagnosis seems based on the normal MRI results, a history of regular migraines on my side of the family, the fact that she sees a halo or light aura beforehand, and that on occasion she has had slurred speech in the early stages (attributed to the fact that she cannot feel or move her face properly I would think). However, there is no one-sidedness happening during these episodes and absolutely no headache at all. In fact, she is up and around in 3 hours with no side effects at all – working out, eating, back to school, etc.

    We are desperate now to find a way to get a proper diagnosis – either as HM or something else, and then on a course of treatment that doesn’t involve a drug like Topamax which could very likely impact her ability to complete her University degree.

    She has already had her license pulled, and lost her job as a lifeguard as a result of this, and the episodes are occurring more frequently.

    Would love to hear from others on lessons learned in their diagnostic journey. What can we do to fast track this and also to find a health professional (in Ontario) who can help?

    Thanks for any feedback.

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  • By Eagle6205

    Im not a Dr. I want to get that out of the way. I have been posting here for some time about my journey with my limbo, diagnosis and further diagnosis of another illness. The Important thing to say first and foremost and I’m being bluntly honest here. There is no fast track when it comes to this type of illness. When you have something this severe that causes numerous symptoms you cannot jump through every test with in a month. Even if you had every test done to rule out other things in one month time, You still would not get to the bottom of it and heres why. If you daughter doesnt actually have Hemiplegic Migraine but possibly another illness it may not show in blood work for some time. You have to be followed and have blood work repeated every few months.

    I went 3 years going to Drs all the time before I got to my Rheumatologist which performed the exact same test my neurologist did for blood but this time actually picked up my positive ANA result. These diseases have times at which they are active and appear in the blood and other times where they lie Dormant. So please understand that for proper diagnosis you want to make sure you have patience and a good Dr./ Set of Drs. One Dr. is not adequate to find a disease in a short period of time. I hadn’t mentioned it yet here but I finally did get a positive solid diagnosis for Lupus on the 18th of last month I believe it was.

    So the questions you can ask aren’t as important as what you can do. The very fact you found a Dr. Who recognizes symptoms of Hemiplegic Migraine is a good thing. Remember Hemiplegic Migraine is a rare disease and affect 1 in 10,000 people. You need to rule out a few other illnesses before you can get a solid diagnosis. You should rule out siezures with an EEG.
    You should rule our Multiple Sclerosis via MRI and Medical followups. Repeat scans are necessary using MS protocol, Because sometimes the lesions for MS wont show on the brain just like in blood work. You also cant just MRI the brain you have to MRI the spine as well unless you find it on a brain MRI. Even if you do find a lesion and this happens often it can be actually just a lesion that shows up for another reason and is not MS. You need to rule out the Nervous system which your Neurologist will likely do. An EMG would help but I don’t think it was Necessary looking back now since it didn’t really help me get my diagnosis of Hemiplegic Migraine.. BUT!! It did rule out Amyotropic Lateral Sclerosis(ALS).

    The thing to remember about Hemiplegic migraine and Lupus is that no one person will have the exact same identical symptoms. Everyone is different. I have Hemiplegic Migraine and Lupus both. The things you say your daughter is going through I can tell you I can relate Ive been there however…The repeated periodic Paralysis and loss of sensation of the whole body I have never had. I have had 1 or 2 incidents of complete whole body paralysis but it comes on gradually and then goes away with in about 15 mins to an hour. Most of my attacks last from 15-mins to a few hours with the longest lasting 6 hours.

    You say she does not have headache with these attacks. And that makes perfect sense, because Hemiplegic migraine is not a headache attack. What it is and this was explained by my neurophysiologist at the University…Is the Migraine portion is short for Migration The way this illness works is it comes on in attacks much like a seizure, (precisely why you need to rule out seizures with an EEG) The hyperactivity of the brain in one area goes wild and migrates the signals across the brain usually affecting one side but can affect both as it does for me many times. You can get headache with it yes. And it causes Cortical Depression so you may see some serious mood changes with these attacks. The Breathing issue I have recently had a very bad bout of and my Dr explained the reason is because it affects the Cardunculous of the Brain. This messes with your heart rate and respiratory system.

    I would stick with that Neurologist but I would also seek a headache specialist and see if that neurologist will refer you to a rheumatologist. About the patience thing again…Many of these Drs take a long time to see. Its probably not easy in Canada and here it takes almost a year in some cases.

    AGAIN I AM NOT A DR. But I would ask your Dr. About the possibility of her taking Magnesium Oxide Or other natural supplements instead of Topomax. . Keep in mind however that if you choose this route it may not help at all, not because the medicine isn’t working but its that in only a small number of Hemiplegic Migraine Patients do they have a Magnesium Channelopathy if this is the case it will help but you have to take it everyday and you have to take it for a few months to see any results. Since it has to build up slowly. If you get Diarhea you have to stop taking it since its a sign your getting too much it can be dangerous but discuss this with your Dr. If you really believe it is Hemiplegic Migraine try not to take headache medicines like aspirins Ibuprofin and tylenol. Since this sounds like a severe case if indeed it is Hemiplegic migraine, in the options you might have Triptans which can be rendered ineffective in some cases by taking these meds regularly.
    BUT MAKE SURE ITS HM. FIRST. If your not sure don’t stop taking these meds for pain just cause I said you might later start a triptan, I choose to grit and bare it to avoid the meds that doesnt mean you should.
    Again make sure you get a good solid diagnosis before you make any decisions.

    Im speaking from all my experience on my own personal journey with this illness and others like it. Im not a Dr, Im just telling you the things I think might help and the tests that will rule out other illness. Unfortunately the only sure fire way to diagnose Hemiplegic Migraine is Genetic DNA testing which is very expensive or a Functional MRI which is not likely. Not even I have had one of those. Trust your Drs and try not to be battle with them too much they know more than us about these issues some are just more educated than others.
    This is not an easy illness to have or Diagnose. There’s no cure, but it is Treatable and beatable. The most important and last tip is KEEP LOGS LOG LOG LOG. If you don’t you have no proof. Take pictures get video and log every major attack. This could be so debilitating she may end up needing benefits so the more proof you have the better. Listen to her when she says she doesn’t feel well, note the symptoms and if you have a Blood pressure cuff use it. Typically and its odd the Blood pressure will be normal but the heart rate slows for me at least. Also if she feels feverish take her temp and jot it down. Note when the attack started and when it ended.

    Best of luck to you I hope this helps this has been my experience and I’m giving advice based on my own. I’m not a Dr.and this advise does not substitute seeing a Dr. Feel free to post back here others are just as friendly and helpful.

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