2Fight

I am not sure your current status but this kind of medication, you have to step up slowly as well as step down slowly if you are going to ween off.  I have been on Gapapentin for my visual vertigo and nystagmus for 5 years.  Recently, I tried to ween off very slowly from 1200mg per day to nothing.  Unfortunately,  @  600mg when I started to get imbalancing problems and dizzyness.  When I attempted to increase to 1600 (the full prescription), I had night blindness.

 I have to step up to 1200mg again for optimum affect which I am stepping up slowing again.

Thanks for the info. I start next week and I am holding onto hope that I can walk again without this walker and drive again. I am sick and tired of the nausea and dizziness which is exhausting to experience. I went shopping and to lunch out at a nice mall and as fun as it was the day was filled with the strange experiences only vestibular stuff brings to life. When I looked through racks of clothing I got so dizzy and sick I had to close my eyes. OK so that just cured my shopaholic ways? nope. I just kept on and finally found what I wanted.  Open spaces at the mall freak me out. My home away from home, the mall, is now an echoing visually overwhelming place. So I just would go into a smaller store and regroup. I hope exposure will help.

The trip to an office depot was the most curious because the shelving in there is a pattern and it set off my head spinning something fierce. I was so ill I had to close my eyes and get pushed outside.  I am amazed that different environments outside of my home are putting me in situations of feeling and experiencing different things I don't get at home. I never noticed the pattern thing until then. I have a problem looking at things taller than myself too which I don't get at home much. 

The most bothersome thing is riding in cars. I used to love it and then it was impossible. Now I can ride in the front seat again but I don't do well on hills, overpasses, and winding roads. Bumpy roads or speed bumps makes my head float and it is physically painful from head to toe in a weird sensation I can't even describe. I love to travel and driving is more than a necessity for me, it was always such a pleasure to drive or be driven. It is getting better though so I am hopeful that time will be on my side.

With all the trouble I have to admit that the experience is amazing of course not in a good way but I am wondering at the fact I took it all for granted before and now it is some strange thing constantly. Not many people around me have heard of vestibular and I never heard of it. So it is hard to explain what happens to me. I think people think I make it up! I describe it by saying I wake up in the morning and then I am on a roller coaster and I don't mean it metaphorically either. I feel that sick sensation many times during the day that i am rushing down a big hill or spinning around fast. How do I explain that being pushed down a hallway in a medical office makes me feel sick?

Hi SassyBetsy,

My name is 2Fight.  I am ruptured Aneurysm and subarachnoid hemorrhage survivor (Vertebral/PICA).  When it ruptured, the bleed  was close to the brain stem and effected my vestibularcochlear nuclei and I was diagnosed as Central Vestibulopathy.  I am surprised how many similar symptoms that we have.  a) walking in a supermarket aisle will make me nauseous and give me a vertigo attack, open space like a Shopping Mall atrium will make me dizzy, looking a static object with a pattern will give me vertigo.  My ruptured happened on 04/24/14 very close to your stroke.  After 8 physicians, the final one gave me the diagnosis as vascular event in the vestibular nuclei in the brain stem.  With double prism glasses and Neurotin (1200mg), it is somewhat manageable from 80 attacks to about 1 or 2 a day.  The Neuro-PT did help but mainly imbalance and some vision/balance coordination.  How are you doing?  Have you been able to manage your dizziness.  I still have a host of other weird  vision issues not related to double vision, and fluctuating blood pressure.  Will be great to compare notes .  Best Regards,  2Fight