Help! Sporadic Hemiplegic Migraines

My name is K and I have suffered from self-diagnosed sporadic hemiplegic migraines since I was 14 years old (I am now 25).

Now let me start by explaining the self-diagnoses………I have had these migraines for over 11 years and I have yet to meet a neurologist or doctor or anybody that could put their finger on what my condition was. Which I don’t blame the doctors since it is not a very widely researched migraine and very few people experience them. However, as I began to research my symptoms on the internet there was a small body of bloggers and research about sporadic hemiplegic migraines and everything I read screamed what I experience. So since I do not have an actual diagnosis from a real doctor (yet! I will be presenting my most recent findings to my doctor in a couple weeks) I am welcome to hearing what people might think I have and if anyone has ever experienced what I am about to describe.

When I was 14 years old, in grade nine, at a basketball practice I started to notice a weird pain in my head (to this point I had never a sniff of a headache) and that I couldn’t quite see right out of my right eye. I continued to practice because I thought I had just stared at the gym lights for too long and had that weird after effect you get when you look at the sun or bright light. I began to feel nauseous and quickly told my coach I had to go I wasn’t feeling well. When I went to call my mom I couldn’t get one normal word out, everything was garbled and I could barely remember what I was even trying to say let alone say the actual words. I was rushed to the hospital because my parents thought I was having a stroke. I couldn’t read or write or really understand any spoken word. The pain in my head was like nothing I had ever experienced. It was a 10/10 on my pain scale and I was experiencing some paralysis and tingling feeling in my upper body. My CT and all my tests came back normal and I was released from the hospital and told I had just had a really bad migraine. Which thus far all my symptoms were pretty typical of a bad migraine. I would go months sometimes years without having a single episode. However, every time I had one it would start the same way, aura, headache, aphasia (loss of speech, confused speech) light and sound sensitivity and the pain would be unbearable. Sometimes the episodes wouldn’t be bad at all and others would be debilitating. What made them worse was the migraine hangover that would last for about a month. The month following, I would have a dull ache in my head, depression, visual and speech disturbances, lack of motivation, light and sound sensitivity and difficulty concentrating.

Up until August of 2015 I went about three years without having a significant episode as described above. Then one sunny afternoon in august I was reading a book and all of a sudden could no longer understand what I was reading and had a large aura (I get big blurry patches that eventually blind my entire right eye). I hadn’t had one in so long that I immediately knew I should get to emergency as fast as I could. Now this episode was much different than others. By the time we got to the hospital I was mostly incoherent could not talk or understand what anyone was saying to me, light and sound sensitivity like I had never experienced and the pain in my head was much different than any pain I had ever felt. Once I was admitted and lying in a bed I began to experience extreme paralysis of my upper body, face and tongue. I could not move and lost complete strength in my left side. My face began to droop and I lost my ability to move my mouth properly. Furthermore, I lost consciousness for about 30 minutes. I thought I passed out from the pain (which could still be the case) but I was reading that going into a coma from these types of migraines is not out of the questions………(please if you have ever experienced this your comments would be greatly appreciated!!). The doctors pumped all sorts of drugs through me (not sure what all I was given as I was fairly dazed still when they released me and my cousin who took me in was not paying attention). This was the worst experience with these migraines that I had, had. For about 6 weeks after this migraine I stumbled over words, had weird nervy sensations in my hands and arms, had a constant dull ache all over my head and felt super unmotivated and depressed. Exercise was hard for me as I would fatigue at a rapid rate (I am a high level track and field athlete that trains 4-7 times a week). I eventually got back to feeling somewhat normal but to this day still have trouble with light and loud noise.

Exactly one month ago today I had another migraine episode with all the symptoms listed above minus that loss of consciousness and much shorter in duration. That being said a new symptom presented itself where I felt like my hands were swelling to the point where they would burst. Following this migraine, I experienced severe night terrors and began sleep walking (I had never experienced any sleep problems up until this point in my entire life). As of today I am still struggling with night terrors and have trouble going and staying asleep (and like I said I have always been a good sleeper). I am also still struggling with light and sound sensitivity, feeling unmotivated, easily fatigued and super emotional.

I have been admitted to a program called CHAMP (chronic headache and migraine program….i think) and have to wait 1.5 years to see the specialist. I have seen my neurologist several times and he is at a loss of what to do or how to manage them other than going to emergency to get immediate care. I have been prescribed sumatriptan, which I have yet to take. I have never really been prescribed medication because they are so infrequent and severe that doctors would rather I just come into the hospital.

That is mostly my story…….
If anyone has any insight that would be amazing!!!!

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Comments

View Comments (14)
  • Donna Shad
    3 years ago

    Hi, first off please let me tell you there is help out there. You will need to find a neurologist that understand migraines and one that will take the time to do the tests that you need. I have hemiplegic migraines and I have gone through the doctors not believing me about them. I have a wonderful neurologist who does what I need and makes sure I have the care I need. There are wonderful support groups out there including this one. Finding all the support you can get is a great way to not feel so alone. I was amazed in learning that I wasn’t alone. This is a rare form of a migraine and feeling that you are not alone is amazing. You can get further information from NIH.gov. You can also look up doctors on their site for those that do specialize in HM’s. If there is not one in your area you can also search for doctors that specialize in Migraines. Most of the Mayo clinics have a neurology departments that specialize in migraines along with large university hospitals such as Duke and John Hopkins. Those are a great place to also start if they are in your area. I would suggest you start in the large university hospitals in your area if NIH doesn’t have one in your area. I hope that this has been of some help. Take care and have a wonderful week. I hope you get the help you need.

  • kfste91 author
    3 years ago

    I really appreciate this thank you so much 🙂

  • DonnaFA moderator
    3 years ago

    Thanks for reaching out and sharing your support, Donna! That’s what makes this community so wonderful.
    I’d just like to add that we have an article about Looking For A Migraine Specialist? that has some useful resources.

    Thanks again for being part of our community! -All Best, Donna (Migraine.com team)

  • DonnaFA moderator
    3 years ago

    Hi kfste91! We’re so glad that you’re here and that you’ve reached out to this awesome group of people. You’re not alone, and there is a lot of wisdom here to share in regards to the very frightening symptoms you’ve described.

    All of these articles speak to the stroke-like symptoms you’ve endured, and all of them have some wonderful conversation that accompanies them: Migraine symptoms: Transient Aphasia; Recognizing My Own Aphasia; Migraine with Brainstem Aura.

    It’s awesome that you were accepted into a program, but with the wait, it isn’t much help in the short run especially as your neurologist is stumped. jlar has some great advice. This article may help you find a doctor who can help you find some relief sooner, Seeing a Board Certified Headache Specialist.

    Thanks for sharing your story, and for being part of this community. Please keep us updated on how you’re getting along. We’re always here to listen. -All Best, Donna (Migraine.com team)

  • jlar
    3 years ago

    You need to find a migraine specialist. They absolutely should know what hemiplegia is.

    Do not take Triptans (sumatriptans). They can cause a stroke. You can get emergency meds that help. Ketorolac is a shot that you can take for an emergency intervention.

    You should have blood work done and make sure your vitamin d and b12 are in the healthy range. Magnesium is a key supplement to take – but not stearate. Also b2 and a b complex can help.

    I did not like topamax at all. It can make the disphasia much worse.

    You can take antidepressants to help. This is a standard treatment. You can take different anti-inflammatories and nsaids – but limit it to three days in a row. You can get rebound headaches.

    Keep track of food triggers or activity triggers. Smells can trigger as well.

    If you are having continued weakness, get to a doctor that understands.

    I’m sorry yours are so severe I hope this helps.

  • kfste91 author
    3 years ago

    I am trying magnesium as a preventative option. Thank you so much for your reply!

  • DonnaFA moderator
    3 years ago

    Hi kfste91! We have lots of articles around using magnesium that you may be interested in: Magnesium; Magnesium Supplementation for Migraine Patients; Migraine treatment series: oral and topical magnesium and Expert Answer: Magnesium for Migraine.

    Please keep us updated! Thanks for being part of the community. -All Best, Donna (Migraine.com team)

  • Cydney06
    3 years ago

    Hi K. I’m really sorry you have been going through this. I believe that you have hemiplegic migraine; if your neuro can’t diagnose it, find a different doctor. I have gone through something similar, and a neurologist diagnosed me with hemiplegic migraine. He suggested I get the genetic test for it but I never did. I had all the same symptoms as you except for the paralysis and losing consciousness. I would have weakness in one arm for a couple weeks after an episode. I have difficulty with word finding, speaking, and memory all the time, but during an aura it is much more pronounced of course. I had this type of migraine for a few years until I found out my main trigger which is aspartame. Since I cut out aspartame I no longer have this severe form of hemiplegic migraine. I still have chronic migraines but I rarely get the aura. I really hope that you find out more about your condition and get the help that you desperately need. I know how scary it is.

  • kfste91 author
    3 years ago

    Hello! Thank you for your response. I am trying to figure out what my triggers are and it is so hard to figure it out 🙁

    Thank you for your insight!

  • DonnaFA moderator
    3 years ago

    Hi kfste91. You may want to check out Migraine Management Essential 3: Trigger ID & Management. There are tons of information surrounding triggers, too many to list, but you can browse the “Migraine Trigger ID” search results for other useful information.

    Thanks for being active in our community! – All Best, Donna (Migraine.com team)

  • suepashley1
    3 years ago

    I have had migraines since I was 5 (and probably younger) …the first time I couldn’t speak really distressed me …..I has always had the aura, the tingling in my fingers, arms, lips , the strange sounds around me of everyone’s voices (I hate that…it always made me nauseous as a child!)… The came immense pain which brought on the sickness over and over again until my stomachs was empty and then there was more!!!
    In my childhood years my migraines came around exam times, house moves, times of extreme excitement, but in puberty there became more a link with my cycle and then came an additional promblem of the aphasia (loss of speech)….I still hate to be seen with this condition!
    The godsend was the birth of the Triptans…!!!Sumatriptan was good, however with me it took my migraine away but I soon got another. Naramig was much better for me. My migraines have officially been diagnosed as hemiplegic migraines!
    When I came to America I connected with a Neurologist as my migraines were 2-3 times per week sometimes plus I was getting ‘normal temple headaches’ too … He prescribed preventative medication:- Topiramate 100mg 1 – 2 x per day and Alprazolam 0.25mg 1 – 2 x per day (which I only take half). This medication had reduced my migraines to 1 every 3 months and with the Naramig I can be migraine free within an hour!!!

  • kfste91 author
    3 years ago

    I will look into Naramig for sure! Thank you for your response!

  • DonnaFA moderator
    3 years ago

    Hi Kfste91. You can read a little about Naramig in Migraine Management Essential 5: Abortive Treatment. Hope you find it helpful!

    Thanks for being here! -all Best, Donna (Migraine.com team)

  • kfste91 author
    3 years ago

    Thank you for your insight!

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