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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 elena1234

      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 elena1234

    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 JaceyBoy

      Ok, I’m back. With Good News! I am currently taking Topamax (Topiramate). It is known as a mild anti-epilipetic drug, used in low dosages to treat Migraines.

      My basic understanding of the issue here is as follows:

      Persistent Aura, or Persistent Visual Snow as I’m sure what most people on here are describing, is caused by the electric signal sent to the brain being too strong, it was also described to me by as a neurologist as like a camera with it’s ISO turned up too high causing the image to appear brighter. For me, it looks like air molecules floating around objects, it’s worse in low light or looking at a plain background.
      In any case, it’s definitely annoying to have to live with and often has many associated symptoms such as Migraines, Tiredness, Irritability, Sound Sensitivity etc. For me, I even had/have red swollen, burning skin on the face! New research suggests these are all types of ‘Aura’ but known as ‘Sensory Aura’. Some people describe numbness down their arms before the onset of a Migraine.

      Anyway, on to the important part, how to treat this. The only way that I have found from copious amounts of research is through the use of Anti-Epileptic Migraine Drugs Such as Topiramate or Sandomigran among others.

      Topiramate, seems to be the first go to drug and has the most positive results. I have trialed this myself and my reports is as follows.

      I started taking this just 2 weeks ago and notice vast improvements in many areas, mainly in thinking and concentration and my eye colour, but also noticed reduced swelling, redness and burning of my facial skin (i have had this for 10 years since taking roaccutane <— horrible thing).

      I am writing this today as today was the first day that I noticed an improvement in the Visual Aura Symptoms, reading text messages in my phone seemed alot easier, and my peripheral vision just seemed better. I am interested to see what happens in the coming days.

      Also my migraines which are everyday are much less severe now.

      I am on 25mg but am told I should be increasing to 50mg after 2 weeks, but if I feel good on 25mg I might just stay here.

      Ok, so side effects. Definitely most people will experience side effects, just reading the forums you can see alot of people can’t endure this drug. If you find the side effects are too much for you, I would simply recommend reducing the dosage to a level you can handle, especially if you do notice improvements as well as side effects. Keep in mind that your body will need time to get used to this drug. Things like Dry Mouth, Stomach ache, Gas, Diharrea, Headache etc. They should pass as your body gets used to the drug.

      I experienced these and they were very annoying and difficult for a week but seem to have gone now, I continued with my treatment as I noticed improvements in other areas.

      Conclusion.
      If you are experiencing Persistent Visual Aura and Migraines, or Just persistent Aura, this is your best bet to fix it.

      Also, a great Vitamin to try, TRUST ME!. Co Q10, super safe, no side effects, don’t be afraid to increase the dose above the bottles instructions. This will improve the Aura as well, also improves your skin and mental sharpness. Give it a go for a week, if no change, you can stop. But it worked for me and my sister who has similar symptoms to me.

      I’m happy to answer any questions you guys have, sorry if I misspelled anything, this was rushed! I’m on my way out, I am finally feeling energized enough to actually go out after work 🙂 I really put this down to this drug.

      Interested to hear your questions.

      Bear in mind, I had to instruct my neurologist to give me this drug, I feel like they don’t really understand this condition that well as it is so rare. When searching for a neurologist, not only do you need to find a “migraine specialist”, even then this is rare for them.

      Good Luck!!

      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 elena1234

    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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  • By JaceyBoy

    Ok, I’m back. With Good News! I am currently taking Topamax (Topiramate). It is known as a mild anti-epilipetic drug, used in low dosages to treat Migraines.

    My basic understanding of the issue here is as follows:

    Persistent Aura, or Persistent Visual Snow as I’m sure what most people on here are describing, is caused by the electric signal sent to the brain being too strong, it was also described to me by as a neurologist as like a camera with it’s ISO turned up too high causing the image to appear brighter. For me, it looks like air molecules floating around objects, it’s worse in low light or looking at a plain background.
    In any case, it’s definitely annoying to have to live with and often has many associated symptoms such as Migraines, Tiredness, Irritability, Sound Sensitivity etc. For me, I even had/have red swollen, burning skin on the face! New research suggests these are all types of ‘Aura’ but known as ‘Sensory Aura’. Some people describe numbness down their arms before the onset of a Migraine.

    Anyway, on to the important part, how to treat this. The only way that I have found from copious amounts of research is through the use of Anti-Epileptic Migraine Drugs Such as Topiramate or Sandomigran among others.

    Topiramate, seems to be the first go to drug and has the most positive results. I have trialed this myself and my reports is as follows.

    I started taking this just 2 weeks ago and notice vast improvements in many areas, mainly in thinking and concentration and my eye colour, but also noticed reduced swelling, redness and burning of my facial skin (i have had this for 10 years since taking roaccutane <— horrible thing).

    I am writing this today as today was the first day that I noticed an improvement in the Visual Aura Symptoms, reading text messages in my phone seemed alot easier, and my peripheral vision just seemed better. I am interested to see what happens in the coming days.

    Also my migraines which are everyday are much less severe now.

    I am on 25mg but am told I should be increasing to 50mg after 2 weeks, but if I feel good on 25mg I might just stay here.

    Ok, so side effects. Definitely most people will experience side effects, just reading the forums you can see alot of people can’t endure this drug. If you find the side effects are too much for you, I would simply recommend reducing the dosage to a level you can handle, especially if you do notice improvements as well as side effects. Keep in mind that your body will need time to get used to this drug. Things like Dry Mouth, Stomach ache, Gas, Diharrea, Headache etc. They should pass as your body gets used to the drug.

    I experienced these and they were very annoying and difficult for a week but seem to have gone now, I continued with my treatment as I noticed improvements in other areas.

    Conclusion.
    If you are experiencing Persistent Visual Aura and Migraines, or Just persistent Aura, this is your best bet to fix it.

    Also, a great Vitamin to try, TRUST ME!. Co Q10, super safe, no side effects, don’t be afraid to increase the dose above the bottles instructions. This will improve the Aura as well, also improves your skin and mental sharpness. Give it a go for a week, if no change, you can stop. But it worked for me and my sister who has similar symptoms to me.

    I’m happy to answer any questions you guys have, sorry if I misspelled anything, this was rushed! I’m on my way out, I am finally feeling energized enough to actually go out after work 🙂 I really put this down to this drug.

    Interested to hear your questions.

    Bear in mind, I had to instruct my neurologist to give me this drug, I feel like they don’t really understand this condition that well as it is so rare. When searching for a neurologist, not only do you need to find a “migraine specialist”, even then this is rare for them.

    Good Luck!!

    Jason

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  • By sysad

    JaceyBoy glad you are getting relief with Topimax. It worked for me and really cut down on the auras. Unfortunately one of the side effects is kidney stones and I got them in bulk. I am off topimax now and the auras are back. Not sure what the next step is, doing my third botox treatment this week. Good luck.

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    • By JaceyBoy

      Hi Sysad, thanks for the reply and for reminding us about the risk of kidney stones using this drug.

      Could i ask what your dosage was?

      I guess its important to be aware of all these side effects so we can make steps to reduce the risk, for example, for kidney stones risk, increasing water intake during the day would reduce the risk, not consuming alcohol, or finding vitamin supplements. If the benefits of the drug are there, the side effects should be endured, unless of course like in your case they were too severe.

      All i could recommend is a lower dosage and see if that is more acceptable for your body.

      Good luck Sysad.

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    • By JaceyBoy

      Also Sysad, I should add, you could try other anti-epileptic drugs, these may not give you the same side effects but still improve your aura symptoms.

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  • By elena1234

    Hey guys!

    Soo as far as improvements.. I have yet to see any. Like I stated before iv been to countless doctors including neurologists and neuro-optomalogists. My neurologist did initially put me on 25 mg of topirimate (topimax). I really couldn’t handle it.. It made me feel weak and tired and unmotivated. My family told me I was a different person on it. I felt like all I wanted to do was lay down by myself. I had no energy to talk, or exercise, or leave my room. I don’t know why it had such a terrible effect on me. Im fairly small (im 20 years old, 5’6, and 127 lbs) so perhaps my body does not fair well to drugs. I feel as I am just ultra-sensitive to medication based on my history. The neurologist than put me on Nortriptilyne (sorry for the misspelling). This is a drug that is known as a TCA. Basically this drug was used as an antidepressant back before better antidepressants with fewer side effects came out on the market. The theory behind giving me this is that this particular antidepressant crosses the blood-brain barrier and stunts the normal neurons from firing at a normal rate, hence possibly reducing the visual aura and lessening the frequency of headaches and migraines. I have been taking 10mg for a month now. Out of the lengthy list of side effects I have only experienced extreme tiredness. Which has been effecting my mood and my motivation and my life altogether. The worst part is that I have not seen any improvement in my aura so I feel I will discontinue this drug.

    So now for the news. My stepfather is a cardiologist and was able to get me an appointment with a renowned neuro-ophthalmologist that specializes in migraines and rare occurrences like these. The neuro-opthamologist works at the University of South Florida in the research facility and has been seeing cases like these for 30+ years. I was lucky enough to see him as his wait list is over 6 months plus. So I will relay what he has told me in the hopes of helping anyone I can. His resident saw me first and asked me a long series of questions. I told her every last bit of detail (from the description of the aura, to the inability to focus my mind or my eyes, how dim lighting makes it worse, how its causing me extreme tiredness, how it is very difficult for me to read and study, etc, etc, etc). After almost an hour of intensive questions and one of the most thorough evaluations iv ever had she left the room. Than a while later the specialist came in with an article and finally confirmed that it was no doubt 100% PMA (persistent migraine aura). Which I already knew but it was nice to hear it from someone who was confident and sure with his diagnosis. He basically described this phenomenon as the following: So typically people who develop this are people who have a history of migraine WITH aura (also known as a CLASSIC migraine). What happens when someone gets a classic migraine is the optic nerve pinches causing a lack of blood flow (he said sort of like a mini stroke) and this is what causes the aura. THAN when this nerve un-pinches and opens back up, this causes an excruciating headache, known as the migraine portion of the ‘classic migraine’. In our cases, our nerves STAYED pinched –> causing our aura to remain for an indefinite amount of time. So basically, our nerves are still pinched to this day. He handed me an article explaining this ‘PMA’ written by one of the founders of this rare phenomenon and proceeded to tell me that he actually studied under this man (which made me feel sure that I was seeing the best of the best for this terrible ‘disease’). The crazy thing is many times during my research on this condition I came across that article but it required payment so I never went ahead and bought it. Luckily, he gave me a copy of it if any of you are interested I could email you. It basically explains everything you all probably already know but it also follows the case studies done that led to the solidity of this phenomenon.

    Anyways.. he than went on and told me that he had nothing else to give me, given that this is a ‘sickness’ that is unique to every person and he believes it resolves itself either on its own (months or years or sometimes never.). I told him about the topimax, and the tca iv taken, and he said it helps some people but it by no means reverses or resolves the PMA, just lessens the effects and he recommends I dont keep taking all these hard medicines but if I wanted to continue trying them, that I could by all means. I know he sounds harsh, but I believe that he was honest.. and honesty can hurt sometimes. I went ahead and asked him if he’s had cases of PMA that have actually resolved themselves and he eagerly said YES, many! A lot of times it resolves in months.. sometimes years.. but he’s definitely seen it. He also said he’s seen it never resolve as well. 🙁 Im going to try to stay positive and hope that I am one of the cases that resolves. He said that with time our brains and eyes will begin to adjust (to an extent) and it will become a bit easier to live life this way. But I will hope every day that it goes away..

    I go back to school August 27th ( I go to Florida State University), and I am terrified that I will not be able to study and focus the way I need to for my rigorous classes. But I guess ill only find out when I give it my best try. I think from here I will stop taking the TCA, and perhaps give the topimax another try (this time maybe only 10mg and see how that effects my body). I WILL take co-Q10 every day (THANK YOU for that suggestion; I have also read that it helps and im all for giving it a try!).

    Oh also! I forgot. I saw that one of you got this following a treatment of accutane. I actually got this WHILE I was 4 months into accutane, taking 60mg a day. I believe that accutane may be a contributing factor to this ‘PMA’. I know many people get this without ever having taken accutane, but I believe that for many people.. accutane may have caused or atleast had some sort of relationship with the onset of this sickness. Basically what im trying to say is I think for some people this would never have happened if it wasnt for the addition of roaccutane into our bloodstream. It is just a thought and the doctor I saw today did tell me that accutane did have some sort of weird relationship with classic migraines but it hasnt been followed up enough to have been listed on the side effects of accutane as ‘MAY cause PMA in patients with migraine history’ which would be really upsetting if it did have some sort of correlation because if that would have been listed as one of the side effects I would have NEVER taken accutane due to the fact that I have a very prominent and prevalent history of migraines. Anyways.. my father is a lawyer and is looking into this because if it did have some sort of relationship and it wasnt stated on the medication it would be considered a possible case. If anyone at all has taken accutane prior or during this and has not said I would love to hear about it!

    Anyways… I wish you all the BEST of luck and I will keep everyone updated if they are interested in my recovery. I find this quite therapeutic knowing im not the only person dealing with something like this. Have a great day/night!

    -Elena

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    • By JaceyBoy

      Hi All,

      Just an update on how things are going with my Topamax treatment for persistent Aura.
      Although I was seeing some positive signs of improvement in my aura, the aura seems to be back to as it was before taking Topamax. Which is a shame really as it was looking very promising. I have increased to 50mg now (was on 25mg for a month) to see if that will make any difference.

      I am yet to experience any major side effects from this drug.

      Although this drug has not helped my permanent Aura, it has helped many other symptoms. My Chronic migraines have reduced in severity, sound and light sensitivity have improved. Also many other symptoms I have observed improvements in, see my previous posts.

      Increasing the dosage up to 50mg, already I have noticed a feeling of laziness or lack of motivation, almost a tiredness, I am procrastinating doing paperwork or visiting family and friends.

      I don’t think I will continue this drug much longer, I will move onto the next drug on my list for treating Permanent Aura-Visual Snow. Which is Lamotrigine.

      As usual, I will report any triumphs or tribulations.

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  • By jscmom

    Ajax_Andy,
    I read your post a long time ago on here when I was
    researching this for my teenage son who has this persistent migraine aura/visual snow and tinnitis. I am a medical
    professional and I have another son who is severely autistic.
    Since conventional medicine doesn’t do much for these kids
    besides medicate them with an anti psychotic I’ve become kind of a blend of a lot of different medical disciplines. I remember reading your post and came looking for you today. 🙂 I found an article about low GABA and high glutamate in the brain. This can cause everything from Parkinson’s to Autism to Epilepsy to PMDD to Anxiety to OCD to hypertension . I have all of this in my house or in very close relatives. I have a bunch of kids and I have every weird manifestation of this imbalance here. I now believe that these Persistent Migraine Aura symptoms of my one son fall into this also. GABA can get deficient from stress or a multitude of other things including a GAD (enzyme) genetic problem. I see down below now on this post someone is using a seizure med and it helps. This would make sense because both seizure meds
    and benzodiazepines bind the GABA receptors. GABA through
    an inverse relationship lowers Glutamate in the brain which is
    excitatory (GABA is inhibitory). It used to be that we couldn’t
    help GABA with a supplement because synthetic GABA doesn’t
    pass through the blood brain barrier. There is a new supplement out now that grows the GABA from probiotics. We’re having
    really great luck with this here in my house for all of those above maladies.
    This is what I’m using here. Pharma GABA is the ingredient that
    will pass thru the barrier. We use Natural Factors brand (It’s the
    cheapest about $18) Start with 1 before bed. The dose on
    the bottle is 2 caps 3 times a day. I’m at 2 caps before bed and
    if I add 1 in the afternoon I am REALLY tired. Be extra careful if you’re taking something else that can make you sleepy even if it’s
    over the counter like Benadryl. We are also taking 1 Nature’s Way Alive multi vitamin per day (food based vitamin) about $10-$15 and you can get male, female or senior formulation. Unfortunately this hasn’t got the correct Vitamin K that we need (K2) so we add Now brand Vitamin K2 100 mcg (this also has alfalfa in it if you look at the ingredients. Alfalfa is a superfood).
    We take 1 per day.
    Also, use a probiotic with different Lactobacillus strains in it.
    Not too high in potency to start so no one gets a yeast die off. That will make you feel miserable. If you have smelly feet or dandruff your yeast is high so be more careful with the probiotic
    (Maybe 5 million cells to start). Just a quick disclaimer to end and an explanation of how a little stress even can cause this.
    First make sure you check every ingredient if you have food allergies or anything of the kind. This is not intended as medical advice, so please ask your doctor is all this is OK 🙂 If you’re
    on an SSRI for depression or any other big wig med PLEASE
    check with your doctor. GABA can slow down the body’s output
    of some meds especially SSRI’s (you know that SSRI psychosis
    they should be telling you about). Make sure to tell them this is
    a NEW GABA supplement that CAN pass thru the blood brain barrier. If you have a particularly stubborn doctor 🙂 , google this
    PHARMA GABA and take the literature with you. OK, lastly,
    how can stress cause this low GABA high Glutamate in the brain.
    Stress causes you to release Cortisol which is the “stress hormone”. Your body under stress will take away from the
    GABA production what it needs to make the Cortisol instead,
    so your GABA will drop and this will let your Glutamate rise.
    My husband is literally having some psychotic episodes and I
    think it is super high Glutamate. Depending on your regular
    daily type GABA status, this can happen over a period of time
    or like a snap. There are a bunch of other things also that
    can affect your GABA level. One more thing. Synthetic GABA
    can cause your body to down regulate it’s own GABA production,
    but I am not sure that this natural GABA will do that. Currently
    researching this fact, but assuming even if you down regulate
    that will not happen until your body senses that your level has
    reached a normal value (this is just my opinion). OK check with
    your doctors!

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  • By JaceyBoy

    Hi All,

    There is a great Facebook page for this issue with around 10,000 members.

    Type in ‘Visual Snow’ and you’ll find a few pages.

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