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.