First of all I would like to say hello to everyone. My name is Eddie and I live in Florida. In April, I started noticing a strong visual problem that cannot be explained by doctors or diagnostic tests. I have had 2 MRIs, spinal tap, Evoked potentials of eyes, ears, and limbs, CT scan for semicircular canal dehisence, VENG, sleep study, and I have seen mutliple neuro opthalmologists. No one can figure out why I am seeing what I am seeing. I told the doctors that my vision was moving. Like if I read a line of text, the line below it would move in the opposite direction. I’ve always had tinnitus but when this started I was all of a sudden hyper sensitive to static and tube television noise. The ringing drove me nuts. Anyways, nothing has been found except for on the VENG the doctor said I did not have nystagmus but my eyes weren’t moving properly. They were somewhat jittery and that’s why he recommended an MRI. After months adn months of specialists and looking on forums, I finally read about Persistent Migraine Aura without Infraction and MAV. I have had visual snow for years (since 2003) and I always get sparkles here and there. The wobbly/moving vision is what almost pushed me off the deep end. I couldn’t deal with it and it’s still stressful. I get very dizzy, just writing this blog. Anyways, to show somewhat I am seeing, I showed my neurologist the link below:
He completely changed his mind and is thnking I had a small stroke impacting the visual cortex bilatterally. I would be confident in that, but the fact that there are other cases (I googled oscillopsia without Nystagmus and a paper by Dr. Jacome) revealed a similar problems were some were resolved with migraine meds. I’ve even seen peopel on here post with similar symptoms. It’s all really nuts. I do have cervical neck pain which shows signs of early degenerative disc disease and left ear pain as well. I only take xanax which does help the dizziness and slows down the movement, but that its. They were pushing Myasthenia meds, but Prednisone is pretty nasty and I wasn’t thrilled with taking Lexapro. To be 100% honest with you, the visual snow and vision problems started when I was in highschool when they were pushing anti-depressent meds such as Wellbutrin and Lexapro. There is absolutely 0 evidence supporting what he THINKS it is. It does get tricky because I have Myasthenia Gravis but everyone has ruled that out for this vision problem. I am at a lost honestly. I have found a few forums with people complaining of the same thing as me and they didn’t get help. I am going to treat the migraines (topamax) and see if this helps. I have had migraines and I have a strong family history of migraines. I just found out recently that my mom experiences visual snow and that she experienced Alice and Wonderland Syndrome like 6 times in her life but never told anyone because she couldn’t explain it. It was nice hearing that she has had odd migraine variants. ANyways, I go to Bascom and Palmer next week which is supposed to be the number 1 eye institute in the U.S. I think this is a brain problem but I don’t think it’s a stroke. I think something has taken place that has impacted the occipital poles and possibly the vestibular system as well. I guess I am writing this in hopes it helps someone else out or maybe someone can relate. Thank you for your time.
Migraine can present with a wide range of symptoms. It will never be identical for any two people. This sounds like a variant of migraine to me. Of course, I’m no doctor, but having studied migraine endlessly throughout the years I finally know two things for sure. One, is that not many doctors are familiar with the complexity of migraine and its various manifestations, and two, no two cases are alike and can vary tremendously, leaving the patient wondering if they have migraine at all. But given your moms experience and now yours and that migraine is very hereditary, migraine is pretty likely. One thing I hear from a lot of folks who take meds is to give them a chance. I don’t take any so I can’t speak personally for meds. Best of luck, I hope you find relief quickly.
I’m not saying it IS migraine for you, since I am not a doctor nor do I know your medical history, but I will say it CAN be migraine. I have the same visual disturbance from time to time during a migraine aura. I don’t have it all the time, like some do (my persistent aura looks very different), but I do experience it. I have had a battery of tests and it was confirmed in MY case to be migraine related. I’m not sure migraine could be ruled out based on that symptom alone, but I am not an expert so only take this as anecdote.
Thank you for your responses and I know that no one here is qualified or allowed to give me medical advice or a diagnoses. I am simply reaching out because I am close to a dead end. You would be amazed at how many tests I have done in the past 4 months. I will keep everyone posted on things.
Hi Eddie,
Yes I can relate to your post. I too get the constant visual movement without any relief! I’ve had it since December last year after suspected VN but as it turns out it was all migraine related. I to have had a multitude of tests with goggles and MRI etc to no avail. I have seen an eye doctor who said it’s not my eyes, which points me back to Migraine. I too have a strong family history of migraine and migraine variants. I too have had visual snow for years but with migraine it’s worse. I have had no answers with this stuff. I’m taking Pizotifen low dose. It’s helping a bit but it’s still here 24/7. Great to hear from you.
Brookie
Thank you for the information. I swear what I am going through points to this. I have a script for Topamax but I haven’t tried it yet. I am seeing a neuro Ent and the University of Miami tomorrow and a neuro-opthalmologist on Wednesday there. Just a question, do you still have this movement when you close one eye? Is it constant? I have noticed too that the balance and dizziness kicks my but in general but when I am driving, and I take sharp turns or go over a small hill, I get very dizzy. Elevators make me sick too. Now that I think about this, I noticed this feeling when I was in an airplane last year as well. It was a very uncomfortable feeling. My hearing is actually very good, but my vision and balance are driving me nuts. My vision seems to slightly distort and sweep. When I drive, when I look at the air bag information on the driver side blinders, the words seem to move faster and actually slant a little to the left. It’s so weird.
Hi Eddie,
I agree with some of the answers posted that it CAN be migraine related. I just wanted to throw it out there…if it was something like a stroke, or some weirdly eye related thing, what do you think could be done about it? My guess would be nothing. It would be something you would learn to live with, like a lot of people on here do. Whether it’s the wobbly floor, the ears ringing and singing, the visual stuff (what I experience) or whatever…at a certain point you have to look at what the treatment would be…for a lot of us, the treatment is the same. SO you can chase your tail getting that perfect answer (most of us don’t have it) or you can work on acceptance.
I’m certainly not saying give up, but if you do reach a point where there isn’t a test left unturned, it may very well be a funky migraine related thing to deal with…that difficult to accept condition and circumstance that most of us have had to grasp…and then decide what you want to do about it…whether it’s Topamax or one of the migraine meds…or just trying to live with it.
Whatever route you choose…having people who get it is a tremendous help…so glad you found us!
Kelley
Thanks for the kick in the ass . You make sense I’m just getting pushed and pulled in different directions. My neuro is the one that said he wasn’t sure if he wanted to give me any meds, possibly because of his stroke idea. I am going to follow up with these specialists to see what they suggest, and even offer these as some ideas. It’s pretty messed up and it’s been a scary ride. So scary in fact that I took out an additional life insurance policy on myself in case something would happen. At 27 years old, I’m sure most of my friends don’t have 3 life insurance policies. Anyways, that may be a bit extreme, but when this hit me, it scared me. If I did have a stroke, it was because of these symptoms. I just want you guys to know I appreciate it, and through this journey, I was able to help my mom who couldn’t explain her migraines to her doctor and didn’t bother telling them of some really weird ones because of how out of the park they were. The brain is complex, and I think a combination of our diets, genetics, and environment all are contributing factors to migraines. Hopefully in our life time, docs will figure it out. Or maybe they won’t because cures aren’t profitable. Thanks again!
HI Eddie,
First of all, let me apologize for the “kick in the ass”…I certainly don’t know you well enough for that!! But I did want to suggest that you prepare yourself for maybe getting no definite answer as to the “WHY” of this or what “WHAT” of this. And a lot of times,
the answers all have the same means for therapy…drugs being a big one…
Since you already have migraine in the family, it’s totally possible that is your answer…and I believe stroke is much more common in migraineurs as well. It’s all confusing and a big fat bummer
In any case, always know I mean well, even if my posts come across more cold/factual than I’m intending…I’ve been through the wringer with doctors, and clinics and tests etc…and at the end of the day, it’s “what drug do you want to try?”
Hi Eddie,
Yes it’s constant and there with one eye shut makes no difference. I have a weather app on my phone and it has a grid separating the days. The grid moves from side to side and up and down, like it’s dancing around! It’s 24/7 regardless of whether I have head pain or not : (
Brookie
Brookie,
You’re not alone then, that’s exactly what I have. I just saw my third neuro-opthalmologist. He said it’s oscillopsia when I showed him the image but I have no evidence of nystagmus. Balance is a killer for me too, but I think the balance tests I am going to have done are going to be negative. I think I have MAV and Persistent Mirgaine w/o Infaraction, it’s the only thing. He decided to screen me for some other things including Vitamin E and Magnesium. I imagine these will come back fine. Does motion solve or improve your symptoms? It doesn’t for me and it doesn’t matter which way I turn my head, it’s always there. When did this start for you?
Hi,
Yes this is me too! The MAV and persistent migraine aura w/o infarction. As you said the head tilting does not seem to matter. Nothing makes it better as such. Movement in the car sometimes makes it less noticeable and sometimes it just makes me xar sick. I get nausea on and off too. This started for me in September 2012. What’s I suspect us Nystagmus started in October 2012 and the head pain started in January 2013 with the persistent migraine aura.
Brookie
i hsve PMA along with VM. Unfortunately PMA is treatment resistent or if u r lucky is the last symptom to go out of the whole lot. step 1 get your anxiety in control in control with exercise or meds. step 2 get your VM in control with diet or meds. Step 3 think about PMA and try more meds or learn to ignore it until a cure is found. good luck. dr schankin and dr goadsby and their research team will produce their research findings of our 24/7 VS in a migraine conference held in some part of Germany tomorrow. For more info plz join the visual snow group on facebook
Hi Eddie:
I was just reading your post and thought I would comment. Last year I had a severe ocular migraine and thought it was a stroke. I saw flashes of light and lost my vision for a while. My right side went numb and I thought I was having a stroke. It’s turns out it was an ocular migraine and migraines can manifest with similar symptoms as a stroke. I know someone who had an ocular/retina migraine that was diagnosed as having a stroke. It turned out, it was a migraine not a stroke. The way you describe your vision almost sounds like a form of an ocular migraine. I have all kinds of crazy vision problems from the ocular migraines. I suffer from both MAV and ocular migraines. I hope all works out for you.
Thank you Katie. The problem though is 24-7. I get flashes, zig zags, and see a blue dot here and there all the time. This distortion of movement is 24-7 as well as visual snow which is the normal floaters you see in a blue sky (little spermy moving things), except they are more prominent now and i see it all the time. I would think migraine too to be honest, but having one since April doesn’t add up to me.
I told my neurologist about persistent migraine without infarction and he doesn’t believe it. He thinks I had a tiny stroke somewhere that is being missed the MRI. I’m not buying it. He wants to do another MRA and MRI but I think if he really thought this was a stroke, a better test should be done than the MRA. Either way, I am actively seeking other opinions.
As Persistent Migraine Aura is extremely rare there is not diagnostic criteria provided by the International Headache Society. Hence most doctors either forget about it or have never studied or have never seen patients suffering from it. Those popular migraine specialists that may have seen past patients that suffers from it forget the actual name i.e. persisten migraine aura until we remind them. They just say it is related to migraine. But the good thing is they do know about it… I was first diagnosed wrongly too i.e. having low blood flow issues to my brain. Keep your search going and second or third opinions if u have too to be 100% satisfied
