I am no longer dizzy. Just have some balance issues (not falling over or anything, just certain VRT exercises are challenging). Things like head turns and quick movements still throw me off, which i why I have been sticking with the VRT. I know that stuff is related to the Vestibular Damage.
I have not used the Klon or Valium in almost a year. I swore off all drugs when the problems started.
Regarding Topamax, it just really made me feel slower and dumber at the time, so I didn’t want to stick with it. Maybe I didn’t give it enough.
So now I have three suggestions here: Topamax, Nori or Celexa. To me, I’d like to use whatever has the least amount of side effects. I would also like to use what has the best success rate. It seems that Celexa is Baloh’s choice. But I know the Nori has been around a long time, which means it could have more side effects, but also shouldn’t be as dangerous since it is still around.
As far as an unknown trigger, I don’t know what to think. I did the diet while on Nori for 6 months. It really didn’t help with anything, except maybe anxiety. I also did not have the sensitivity to sun, just some to fluorescent lights (I know this bothers migraineurs, but also bother people with VN and most other vestibular problems). When I did the diet back then I stayed off of anything and everything that was a possible trigger. I didn’t drink alcohol for almost a year, which is why I started back up again (just vodka or beer) and didn’t notice much of a difference. It didn’t seem to help at all, but then again, I have never had “episodes”. That’s why I wonder if I don’t have a food trigger. Does everyone have to have one if they have migraines? It can’t just be the vestibular damage and stress/anxiety?
Now I just still have to vent for a minute, even though I know I will get shit frort. I am very anxious about getting back on an AD again. You guys have done a very good job of convincing me about migraines, and I am pretty much sold. I know the only thing that creates the scintillating scotoma is migraine. I also realize that I need something to help calm my nerves and anxiety over what has become of my life. BUT, I also know that for the last year I have read about people having residual visual problems after using AD’s. I have personally talked to people who had them for months and years after and things improved. I have made it a year now with no drugs, and don’t want to mess it up by starting on them again. So now I read two conflicting stories from people. Yes, I do not know what those other’s diagnoses were, but if someone just went on an AD for anxiety, came off of it, and then had floaters and light sensitivity, would that mean they all the sudden had migraines? Or just that the drugs messed with their chemistry? Just as you guys have read about and studied migraines to an extent, I have looked into this a lot over the last year. The other factor is that these symptoms I now live with were not there in any form at all whatsoever before or during my time on Nori, only once I came off, so I don’t really know if it was helping. Wouldn’t the floaters and other stuff have kicked in right when the VN hit? During the first three months or so before I started the Nori? The problems I had with light before I started the Nori are normal for people with Vestibular Dysfunction. There is lots of literature on it.
It would be one thing if I had no other problems that could point to my vestibular problem, but I do. Everything I have read about migraines and dizziness, is that migraine is deduced based on deduction of other factors. I knew what was causing my dizzy spells, it was the VN. That’s why after a few months the dizziness went away. That’s why I got better with VRT. I never got sick when doing the VRT. It has only helped me.
The other thing is, I keep on reading posts on here and what other people have told me. It seems like most people have episodes. They feel ok, and then when I migraine comes they feel worse. They eat a trigger food, and then get worse. Everything is absolutely constant for me. Are you saying I have constant photophobia? That these floaters are just being constantly seen? I have had no remission or anything. I read posts on here and other forums dealing with migraines and it seems like everyone has episodes, which is why it has been so hard for me, and my PT who deals with Dizzies, to come to the migraines conclusion.
One thing I have noticed the last two years, is when someone with a specific disorder has it, they tend to think that everyone else they talk to have it also. That’s the funny thing with vestibular problems, they all can mimic each other. That’s why when I hear of someone complaining, I right away think of VN or vestibular dysfunction, but maybe they have Lyme, or MAV, or something else altogether. So many things can cause brain fog, including vestibular damage.
Please don’t take what I have just said the wrong way. I am just trying to work through all of my thoughts. I know you guys know a lot more about this than me, but I just hope you are open minded and not just looking at migraines because that is what you suffer from. I am not picking a fight or being a jerk trying to start a fight, I am just trying to talk this out so it makes sense. I am scared to do anything that will make things worse. The reason I didn’t totally believe in Baloh when I saw him was because that was his area of expertise, so I wasn’t sure if he was looking at other possibilities. I have had just as many other professionals, including Neuro eye doctors tell me I don’t have migraines because my problems are constant. You guys are right about the anxiety though. You are right about the scintillating scotoma. I just really cannot get over the fact that all of this started when I got off the Nori, so I apologize I cannot wrap my head around it. If I had never started the Nori, I can’t believe the floaters and Scheerer’s Phenomenon would have ever started. The problems with lights were much more bearable before I started any of the drugs, but got much worse when I got off. What makes everything harder is finding a doctor that understands this stuff…
I really, sincerely appreciate everything you guys have been telling me. I am not blowing it off, I am just really on the fence. I just want to get better, but more scared of getting worse. I just want to stop crying all the time from feeling so bad and hopeless.
Scott, I am going to send you some documents to your email shortly.
Thanks again everyone.
Get back on Nori or try Celexa to get that anxiety under control. Good luck!