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Persistent Migraine Aura without infraction

  • By ajax_andy

    About 5 years ago I had a huge migraine and it left my vision screwed up after. I was diagnosed by one doctor with Persistent Migraine without infraction, no real help offered other than beta blockers which I refused. I also spend many trips to the hospital for checks on my eyes which were fine, then referred to a neurologist who didn’t have a clue, just said hopefully I’ll get better in time. For the next 3 years I had to use a dyslexia overlay sheet on my pc screen as couldn’t read black text on white backgrounds and had bad sensitivity to light.

    Anyway cut a long story short I was ok for 2 years and recently started having migraines again, unfortunately one has now left me with all the same symptoms. I’m now self employed and have a 7 month old boy… life is really hard at the moment. I have to work but at the same time it’s completely knocking me for 6 and my condition is debilitating. Having read up on things I’m convinced the original doctor’s diagnosis of Persistent Migraine Aura without infraction is right and have been to see another doctor about it recently with a list of medications I’ve read in case studies that may help… she couldn’t give me them, offered me beta blockers instead (which I refused) and said she’d refer me to a neurologist.

    I feel like I’m just going round in circles again… whilst I wait to be referred I’m trying to run my business, drive all over the place and be a husband and father but I’m just spaced out, can’t concentrate, tired, struggling to us a PC for any length of time and I’m no fun to be around.

    Does anyone have any experience with this type of migraine and any advice on what I can take to ‘come around’ a bit and to fix my persistent eye issues? Or even some advice on how to approach the doctors so I actually get some relief?

    Sorry for the rant… sort of at the end of my tether here 🙁

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  • By Nancy Harris Bonk Moderator

    Hi ajax_andy,

    I’m sorry you are having such a difficult time right now. Migraine can be debilitating and exhausting and make life rather hard. Let’s see what information I can provide you that may help.

    It may be time to see a doctor who is an expert in treating migraine and headache disorders- a migraine/headache disorder specialist. These doctors are different from neurologists in that they are board certified in headache medicine which is different than being certified in neurology. The thing is neurologists may be fine doctors and say they are ‘headache specialists’ but that may not be the case. Neurologists have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine and headache disorder experts are just that, experts in one area – ours – migraine and headache and know which medications are best to treat which type of migraine and/or headache disorder. Let me share information with you on how these doctors are special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    This study discusses persistent aura without infarction and it’s treatments which include cyproheptadine, DHE 45, Lasix, Lamictal nimodipine; http://www.jmedicalcasereports.com/content/8/1/61

    To help prepare for an upcoming doctors appointment, you may find this information helpful in our
    Getting Help section; https://migraine.com/getting-help/.

    Good luck and let us know you how make out,
    Nancy

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    • By Timothy

      Hey Andy Tim here I know exactly how you feel, I just got diagnosed a few months ago I’ve been through hell the last two years my two 2 dogs died and my nephew died only 18 a week after my dog died. I’ve got a torn laburnum in my left shoulder and a damaged nerve in my neck. So far Nero has tried botox I just did nerve blocks Thurs Tues I go for iv infusions. You should look into it

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  • By ajax_andy

    Thanks Nancy, sorry for the delay in responding but i’ve been away. I’ll have a look at the info and maybe print it off for when I have my appointment. I’ll also ask to be referred to someone who is an expert in headache disorders 🙂

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  • By dogmom4

    Thank you for these posts! My 12-year old daughter has had a spinning “blob” in her vision for 4 months, now. She had suffered 6 migraines in the span of a year and a half. This blob came after her being on Amitriptyline for 5 months. She has had an MRI, fMRI, many, many blood tests. Neuro optho, neuro and next an MD, PHD headache specialist on Feb. 10. This condition just breaks my heart. The information you provided makes me feel she is not alone. Many, many thanks!

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    • By pamukkedi

      Dogmom4, Ugh, SO sorry to hear about your daughter. My son Is 11 and in week 8 of a terrible migraine. He has battled migraines for three years with several bouts of status migrainosus. A few weeks ago he developed spots in one eye’s vision and a jagged slash in their other eye’s vision. It has gotten worse to the point that most of his field of vision is too foggy/fuzzy/missing in the one eye and the slash is bigger in the other. It has been weeks. Preventative meds (depakote) obviously failed, as have all rescue/abortive meds. Just got Botox shots tonight and we all feel such relief at the hope that it might help him. Man, he has really suffered, and yet he keeps looking on the bright side of every day, and is so Brave about the treatments and pain. He’s inspiring to me – thank goodness because the worry and care I feel for him is exhausting.

      I hope you have a good experience with your headache doc. Best wishes to you and your daughter!

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  • By Bravesfan

    dogmom4, It breaks my heart to hear about your 12 year old suffering like that. It’s one thing for us adults to have to endure migraine misery, but kids….that is a different story altogether to me. Well at least she has a wonderful, caring Mom that is doing everything within her power to help. Bless you. I will be praying that one of these Doctors will be able to help. Please let us know how she is doing.

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  • By teen.with.persistent.aura

    ajax_andy,
    I’m suffering from the same thing you are, except no doctor has diagnosed me and my parents can’t afford a specialist. I don’t know how to solve your problem but I know some things that can help.
    For the concentration in general: Caffeine. Yes, it seems like it would do the opposite, but it really gives your mind the kick it needs to stay in gear.
    For your eyes in general: Artificial tears or any other sort of eye lubricant. They will slightly lessen the aura and help with other related eye problems.
    For the PC reading issue you mentioned: Use a dyslexia overlay. A physical one will help with reading in general, but you can get an app for your computer and Android.
    Hope this helps. Regards,
    Aaron

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  • By gordonh

    Hi Andy,

    I’m experiencing the same thing and have been treated with magnesium therapy, with no impact so far. However, another doc thinks it is not a migraine, but instead chronic dry eye. Have you asked your ophthalmologist about this? I’m using Refresh Celluvisc lubricant eye drops 4-6x daily plus taking Omega 3. I will report on the results. It’s been a couple of years since your original post. How are you doing?

    Gordon

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  • By pipedream

    From the sounds of these testimonies my wife is experiencing these same issues. She started out with a bad migraine in early January with a headache but the visual components never went away. She sees heavy amounts of glare, a lot of floaters distorted images, horrible depth perception especially in her peripheral field of vision. She has been to two opthomologists and have an MRI at the Er and they have found no physical reason for them. She has an appointment to see a headache neuro specialist in April but it just seems hopeless to her after scouring the internet for treatments. None of the doctors she has seen has offered her any advise other than “take some Aleave or Excedrin if you feel it coming on”
    Does anyone have an idea of what the success rate is of minimizing this disorder or at least treating some of the uncomfortable side effects like nausea. My poor wife is loosing hope fast and I want to support her any way I can. Thanks for you help.

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    • By elenafilippone

      Hey everyone!! I have been experiencing the same symptoms… I am 20 years old. About a month I woke up and immediately recognized that I was getting a migraine with aura. Like usual (I get a bad one like maybe every 2 years), I took a sumatriptan to subside the migraine. I woke up the next day and my vision had not been restored.. 🙁 I see extremely distorted. I cannot read (I lose my place because my eyes cannot focus for some reason). Reflections seem to bounce off everything and patterns seem to move. Even solid colored walls seem patchy with light. I had to drop my semester this summer because I couldn’t take my exams or study because reading is impossible. I am panicking. I have already been to a retina specialist, a neuro optomologist, and optometrist, and a neurologist. All the eye related doctors have said that my eyes look perfect (there is no retina problems or optic nerve problems, etc). No tumors or irregularities in my MRI. The neurologists said he believed it was a persistent ocular migraine and put me on Tropkendi. It made me feel like a zombie (slurred speech, tired all the time, weak muscles, couldnt think straight), plus I didnt see any improvements in my vision so I got of of it. I start school back up in august (im a pre med student so being able to see/read/study is soooooo important). Im at a loss.. Did anyone with these symptoms see improvement? Does this ever go away? I am getting discouraged. Is persistent migraine aura permanent? Please reply!!

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  • By ashleymartin7

    Pipedream, I have been getting ocular migraines for the last 6 years. I typically get 1-4 migraines over the course of three weeks. This will happen once or twice a year. Well last week I had 5 ocular migraines in 7 days. Literally the worst week of my entire life. I went to the neurologist and he put me on Trokendi XR 25. I took it on the 6th day and did not get a migraine. I am on day 10 right now and haven’t had a migraine. So….there is hope. I guess I’ll have to be on medication for the rest of my life but I really don’t care.

    As far as the vision part goes, mine got messed up too last week. I see slashes and blurs. Remember the opening to Saved by the Bell? Looks a lot like that. Lol! Hopefully soomeoone can help me fix it one day.

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  • By kileyh88

    I have been experiencing the same thing since October 2015. I had a horrible migraine with an aura (visual disturbance) and since the migraine was resolved but the blurry distorted vision never went away. Like many of you I saw neuro’s, headache specialist, opthomolist ect. I trialed all the meds posted in medical journals: beta blockers, lamictal, topkendi, furosmyde you name it.

    I was miserable and struggling coping You kind of go through a grieving process and have to grieve what once was with your vision. Denial, anger, depression, bargaining and finally acceptance. Once you accept it you can live to your full potential again. I live a completely normal successful happy life. I often dont even remember I have the visual disturbance as your brain adjusts. For those feeling distraught I assure you wants you accept the impairment life gets a lot better and results in less suffering.

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  • By pipedream

    Thank you for that testimony. My wife just finished trying the lamictal. She developed an allergic reaction that started lookin like me Stevens-Johnson’s syndrome so they had to take her off. I did see there was a new medicine approved by the FDA this week for chronic migraines, mostly for prevention though. It looks like it is a type of protein blocker.

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  • By GardensatNight

    Pipedream, has your wife been to a NEURO-opthamologist? Forgive me if I’m suggesting something you’ve already tried. I have chronic intractable migraine with vision issues. I have been told many times after countless tests, “there is nothing wrong with your eyeballs”, but that doesn’t mean what my brain is doing to my ability to use said eyeballs is not wreaking havoc on my ability to function.

    Having been to multiple neuro-opthamologists myself (I’m somewhat of an extreme case), the best ones who have been able to help me solve some of the pieces of this, even if there is no “cure” have been neuro-opthamologists who are also headache specialists.

    Seeing a Board Certified Headache Specialist

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  • By elenafilippone

    Hey everyone!! I have been experiencing the same symptoms… I am 20 years old. About a month I woke up and immediately recognized that I was getting a migraine with aura. Like usual (I get a bad one like maybe every 2 years), I took a sumatriptan to subside the migraine. I woke up the next day and my vision had not been restored.. 🙁 I see extremely distorted. I cannot read (I lose my place because my eyes cannot focus for some reason). Reflections seem to bounce off everything and patterns seem to move. Even solid colored walls seem patchy with light. I had to drop my semester this summer because I couldn’t take my exams or study because reading is impossible. I am panicking. I have already been to a retina specialist, a neuro optomologist, and optometrist, and a neurologist. All the eye related doctors have said that my eyes look perfect (there is no retina problems or optic nerve problems, etc). No tumors or irregularities in my MRI. The neurologists said he believed it was a persistent ocular migraine and put me on Tropkendi. It made me feel like a zombie (slurred speech, tired all the time, weak muscles, couldnt think straight), plus I didnt see any improvements in my vision so I got of of it. I start school back up in august (im a pre med student so being able to see/read/study is soooooo important). Im at a loss.. Did anyone with these symptoms see improvement? Does this ever go away? I am getting discouraged. Is persistent migraine aura permanent? Please reply!!

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    • By JaceyBoy

      Hi Elena,

      I have very similar symptoms as you, and struggling to run my business as any form of paperwork is difficult. I’ll be trialing a drug called “Topimate” in a few days, I’ll let you know how I go.

      Not sure where you are located, this drug is available here in Australia.

      Jason

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    • By JaceyBoy

      Hi Elena,

      I have very similar symptoms as you, and struggling to run my business as any form of paperwork is difficult. I’ll be trialing a drug called “Topiramate” (Topamax) in a few days, I’ll let you know how I go.

      Not sure where you are located, this drug is available here in Australia.

      Jason

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  • By pipedream

    I’m really sorry to hear that you are going through this. Unfortunately I don’t believe there is a clear cut answer for this. I believe some people have reduced symptoms after time, some people have reported it going away once they have gotten to the root of the issue. I believe that the majority of the people that have had all of their tests and specialists come back as “unremarkable” are left with unchanging condition. I can tell you that there will be good days and there will be horrible days with some in between. Try to celebrate the days that are good and not dwell on the days that are bad. If you aren’t getting counseling now please seek it before you are overwhelmed and try to set up a support system for yourself with friends and family that can help.

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  • By GardensatNight

    Elena, I’m really sorry this is happening to you. It so disheartening when tests associated with migraine come back normal over and over when your body knows something is very wrong. Has your neurologist suggested any other courses of treatment other than the Trokendi? There are many different options avvailable, and you may find one that is right for you.

    In the meantime, have you explored different options for adjusting to how your brain/vision is currently functioning? If you’re in the US, at 20 you should still qualify for accommodations under a 504. That could help you with oral administration of tests, taped lectures, etc. Your university may have an office of disability or something similar which might be able to help you with a student volunteer who could record any textbooks you couldn’t find on tape. You would also qualify for books on tape through the library of congress https://www.loc.gov/nls/

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  • By elenafilippone

    Pipedream, did your wife’s symptoms ever go away? I do have my famiily as my support system and while it helps it doesnt take away the fact that this might be permanent for the rest of my life and that is terrifying & garden, no the neurologist has not yet suggested any other medications because I have not yet had my follow up. Based on everything iv read most of the medications given for this effect the muscular system/nerves and all tend to have the same effects on the body as the tropkendi did on me which were soo unpleasant that is made it unbearable for me. Even so, I am very discouraged because I see all these testimonys about neurologists prescribing all these medications but usually the person experiencing these symptoms tends to stop writing on these forums after a while. I dont know if that means they lost hope and the symptoms never went away or if that means the symptoms went away and they no longer needed to search for answers. Even if I saw just one person that said ..”yeah the lamical or beta blockers.. etc actually took away the visual disturbances” I would be feeling a little better but I have yet to see ONE person say that. & garden, ugh Iv heard of all of those assistance resources for individuals with disabilities but even thinking about needing that feels discouraging. Iv been a straight A student throughout college and love reading. I want an answer or a solution to this.

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  • By GardensatNight

    Elena, I am SO SORRY this is happening to you. I will keep you in my thoughts and hope that this turns around. You’re right. We never know if we don’t hear the stories where things turn around, and probably a bigger proportion of people who have more severe symptoms tend to go online versus those who are barely affected.

    Do consider asking your doctor about other treatments and medications. My doctor likes to say “everything has side effects.” Some things of course have worse side effects than others. I am on several medications, none of which make my migraine disease and its visual components go away, but some of which make it more bearable. And while you mentioned the nerves and muscular system… this disease is not terribly well understood and sometimes you just have to try a bunch of stuff, do a bunch of testing, and uncover every rock in your quest for understanding what your body might respond to (which can change over time).

    On a last note, I love reading. I STILL love reading. I just read differently now. There is no shame in the fact that something went wrong with your body, whether it is temporary or something you may be dealing with for a little while. It is not your fault. It was not mine. It does not make you less of a “reader.” It does not make you less of a straight A student if you need accommodations to take your tests differently. NVDA (which is a screen reader–a program that helps those with visual impairments access computers) was designed by two blind men and offered to anyone who needs it for free. Pretty smart guys!

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