Topamax - Visual Auras

Medication 💊 Anticonvulsants
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Hello everyone,

For almost three years I have been living with symptoms that seem to mimic a vestibular dysfunction. After three rounds of testing within the first few months, I was diagnosed with VN, a large, significant loss in my right ear. Along with the typical vestibular symptoms (skewed vestibulo-ocular reflex, trouble with eye and head movements, trouble tracking and turning head, balance and coordination problems, cognitive problems, brain fog, surreal feeling), I had a few “migraine type” symptoms like some sensitivity to lights and negative afterimages, so my Neurootologist put me on Nortriptyline for any possible migraine activity. I stayed on this for about 9 months, going from 25mg to 100mg. I also stuck to a migraine diet for 6 months. None of this really helped with the light sensitivity or afterimages, and plus I was now on a full regiment of Vestibular Rehab Therapy which was helping me feel better. I tapered off the Nort, but that is when my visual got worse.

For the last year and a half I have been living with floaters, blue field entoptic phenomenon (sparkles in the sky and on flat, bright surfaces), extreme light sensitivity, objects seem too bright and the negative afterimages. These symptoms are all 24/7 and never go away. On top of that I still have the cognitive problems and just don’t feel right. After reading more and more about Visual Snow, which thankfully I do not have (yet…) it seems like all these symptoms are a part of that diagnosis. One common thought for what causes VS is Persistent Migraine Aura. Because of this I started back on meds again (I stayed away for a year after feeling like the Nort kick started all these vision problems) and have been on Celexa for almost 7 full months now. I am up to 30 mg a day. It has really helped with my anxiety over all, but has done nothing for my visuals. I recently say a new Neurologist (my 3rd) and he said that I do not have a migraine problem. Since my problems are 24/7 and never get better or worse, he wasn’t sure what the problem was. He told me some vitamins to try but that was about it. He knew that I was really struggling and believed me that these visuals were real, so he referred me for a second opinion.

The 2nd opinion Neuro was the opposite. Although he didn’t flat out say he has dealt with patients like me, he did think I had some type of migraine activity going on. I explained that yes, over the last 2 years or so I have had about 5 scintilating scotomas, but other than that, I have no other classic migraine symptoms. I don’t have any episodes. Nothing in particular gives me aura or migraines, what I have is permanent. He agreed, but still said that the 24/7 activity could be caused by migraine activity. I believe him (hell, I have nothing else to believe at this point). The thing is, he wanted to start me on Topamax. I told him I had reservations because I tried Topamax two years ago when I was still undiagnosed with the VN (possible migraines) and it made me feel horrible.

I have now been on 12.5 mg of Topamax for 7 days, along with my usual 30 mg of Celexa. I remember the first few weeks of Celexa I had side effects like increased anxiety and restlessness, but that went away and the drug has only helped since. I now worry about the Topamax. So far I can’t tell if I have side effects, or if I am just my usual self. I do feel a bit dumber and slow since I started, but I have felt slow for almost three years now. I also fear that this drug will make my visual worse (I am guilty of reading other peoples horror stories about worsening visual symptoms when on Topamax).

Now I want to ask… If Topamax does give me side effects at the start, will they be worth it? If anything can give me a break from these visuals, it is worth it! Also, has anyone had, or heard of anyone with these symptoms who improved with Topamax or other drugs? I am not talking about the scotomas, I have read lots of people getting rid of them with Topa, but those are the least of my worries since they are so rare. For me I want to stop seeing floaters all the time. I want to look outside and not be blinded by bright sun light and objects. I want to wake up and not see after images all over my bedroom from the blinds. I want to look at the sky and see sparkles everywhere! Most of all, I want to enjoy life without sunglasses. I found a post on here titled “Visual Auras” from 2008 I think. A girl named Julie mentioned most of these symptoms and I think hers went away with drugs. Otherwise, it has been hard to find people with the constant aura like me as most seem to get the aura about 20 minutes before a debilitating migraine which I never get.

Sorry to ramble, but trying this drug was a difficult choice for me. I hope any negatives are worth any positives that might come from it. I try everything I can to live a healthy, migraine free lifestyle, but so far nothing has helped. I am still looking for a silver bullet. I could also use some encouragement from anyone who knows what I am talking about. For anyone who hasn’t experienced these visuals (like anyone who hasn’t experienced a personal problem that we all have) you have no idea how debilitating they can be.

Thanks for your time.

1 Like
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Hi Awalkerphoenix

I too suffer from 24/7 visual snow. I am not even sure if it is called visual snow or permanent migraine aura because its hard to describe. Basically when I look at the sky I see bright dots moving all over my visual field. I see after images both negative and colour. My head feels heavy all the time and my balance is off. Rocking on a boat sensation increases as the day progresses. When I blink or look in a different direct, my vision flickers a couple of times before settling down. In my whole visual field I see billions of mini dots or shadows (hard to describe) that move and covers my vision. Hence when I look at patterns it seems like they are shuddering/shimmering. Maybe these dots or shadows are called floaters I am not sure. Just like you, my after images are worse in the morning like I can see after images of my blinds, ceiling fans etc. I understand how debilitating the visual crap is and the migraine diet didn’t do anything for me. So now I eat what I like to make myself happy. The Cymbalta has helped me control my anxiety. I also plan on starting Topamax soon to see if that helps. Please stay in touch and let me know how the Topamax is going for you.

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Have you been told this is migraine too? Luckily I do not have the full blown snow. I am fine when indoors, but if I look at a bright wall or white sheet of paper, I see the phosphenes or sprites shoot everywhere. If you read about Blue Field Entoptic Phenomenon or Scheerer’s Phenomenon online, they say this is a normal phenomenon that anyone “can” see, but that is if they look for it. For me, I just easily see it withing seconds of looking at the sky or bright objects. This is not floaters. My floaters came first. Sometimes the floaters look like little cells or amoebas, but usually they look like little clumps of fuzz. These are also supposed to be normal, but for me they just popped up over night. On top of that, the opthamologist and neuroopthamologist cannot see any floaters, but in “real” cases, they can easily see them. This makes me think that somehow I have become hypersensitive or hyperaware of things in my visual field, hence the Blue Field and sensitivity to light.

After researching this stuff for 18 months, it seems like Persistent Migraine is the only answer to this. I have found a few people on forums who have supposedly found relief from these things with drugs. Their are two other theories behind it besides migraine. One is anxiety, which I am trying to control with Celexa and not worrying about the visual stuff. The other comes along with anxiety, which is hyperawareness and fixation on these problems, the theory being once you see these things it is hard to unsee the them. I didn’t notice the sparkles in the sky until I started freaking out and fixating on the floaters. I didn’t notice the floaters until I came off of the Nort, which means the weening off the Nort either caused the migraines to increase, or increased my anxiety so much that I couldn’t ignore all my eye problems.

I too have the balance problems and heavy head feeling, but I had those two symptoms for a full year before any of the visual stuff happened, which led me to believe those two symptoms were caused by the vestibular damage which I no doubt have. Supposedly there is no relation between vestibular damage and neurological eye issues, but then again, with severe damage so close to my CNS, anything could be possible. At this point I think meds are the only thing that could possibly help me, by hopefully calming whatever activity is going on in my head. It’s sad to think that I thought life was bad when I thought I just had a vestibular problem. Now I find myself wishing that was all I had as this visual stuff is way worse than anything I felt that first year.

The good news is I haven’t gotten any worse this past year, but I just can’t seem to ignore it. If you want to find others out there like us, do a Google search for “yuku visual snow”. You will find a forum of people who have all the same symptoms as us. The good news is that a few people have been “cured” with medicine. The bad news is, their are many others who have found no relief whatsoever. One thing is certain though, everyone on there does have issues with anxiety which no doubt plays a huge role in all of this. Once again, that lady Julie on here seemed to have found relief and described many of these same symptoms. Unlike many people on this forum though, I feel like our symptoms are different and not as clear cut. Hopefully some others can chime in with similar experiences. I have a long ways to go on the Topamax, but I plan on sticking it out no matter how bad the side effects get, because anything is better than my current state.

Good luck!

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I find it odd that some posts on here regarding Topamax have garnered as much as 27 replies, yet we get nothing here. Looks like we are on our own nabeel…

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Sorry, I would post something but I have no experience with symptoms like the ones you are describing.

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Hi awalkerphoenix

I agree, anxiety and hyperawareness can make the symptoms a lot worse. I suffer from all the visual symptoms 24/7 you mention. The strategy I am using to cope with this which is working to some degree is to keep myself extremely busy throughout the day to ignore the symptoms. This is not a cure, what choice do we have? I used to be hyperaware and anxious all the time. The cymbalta has helped me cope with the anxiety and work/family/exercise/things that I like to do is helping me from being hyperaware. The more you focus on the symptoms, the more it will screw with your head. I don’t have the time right now to type all my visual symptoms otherwise I would be spending the whole day here, but if you read the below 4 links it will give you an idea of what I go through every day. As much as I hate this shit, I am trying to train my mind to get used to it. The only thing that worries me for now is that I wish this does not get any worst. Jamieh is right, most people on mvertigo are not facing these symptoms which you and I are going through. However, the strategy to “try” and counteract the visual symptoms would be the same as working on the MAV i.e. trial and error of different medications. If it works, then great, if it doesn’t work, well we just have to live with it I guess. First choice of drugs I think would be to try anti epilectic drugs like topamax or epilim etc. Epilim didn’t work for me so I am going to be trying topamax next. But def. read the below links if you still haven’t found them during your 18month research. I still do suffer from anxiety and hyperawareness which will probably be there until a cure is found for this illness, but the most I can do for now is try and mask it for now and hope that a cure is found soon.

medpagetoday.com/MeetingCoverage/AAN/32416

internalmedicinenews.com/new … 9b255.html

headacheandmigrainenews.com/visu … reatments/

eyeonvision.org/visual-snow.html

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There is a facebook page entitled “Visual Snow” please join it, the more known cases out there of visual snow/PMA, the more neuroscience needs to address it. This is a cripply 24/7 disorder, and I don’t believe it’s completely associated with a migraine, as my daughter didn’t have a migraine when her onset came on her suddently 7 weeks ago, and we/she has no history of migrianes, which stands to reason why migraine medicine isn’t working to suppress the aura. Something electrical is going, and I pray they find a cause and a cure soon. In the meantime, we need to raise awareness so please join this facebook page, you will see we are writing to publications and media to help raise awareness.