Hello all-

My Neurologist thinks that I am having atypical migraines. I have all the vestibular problems-balance issues, light sensitivity, some sound sensivity, motion sickness especially when driving-but rarely do I get headaches. The world looks like I am looking at it through one of those wiggly fun house mirrors-everything looks distorted. I also have a hard time in stores like Target- there are days where I can go in there and just feel slightly off balance and other days where I feel like I am going to pass-out.

I have had MRI's, CAT scan, major balance in vestibular testing, carotid artery ultrasound to rule out TIA or stroke. everything comes back normal-no blocked arteries, no Menieres, no vertigo etc.

I am seeing an ENT and a Neurologist. The biggest problem for me are the panic attacks which I have never had before until all this started. I will be feeling fine one minute and then start having one of these attacks just out of the blue. I can tell in my bones that it is a symptom of what is going on and not the primary problem, but since all my tests come back normal the Dr's are starting to lean toward possible anxiety/panic disorder.

The neurologist tried a medrol dose pack to try and break the migraine cycle, but it didn't work. Neurontin left me feeling very out of it. I do not remember anything about the night I took it and I have small kids so I can not go that route.

Please help-have any of you experienced anything like this? If so what helped?

Frango

Dear Frango,
Awful isn't it? I have had all you describe for over 2 years and have yt t find anything to stop it and I have tried everything. I too have had all of the vestib. testing etc, all to come back negative. I have been placed on multiple preventative meds but unfortunately am very sensitive to anything and couldn't stay on any of them. I do take xanax for when the off balance/ whacked out feeling is at its worse and it helps but I think if you haven't been tried on any preventative you should ask your doctor about one. Some of them are beta blockers, anti seizure meds and there are many others it just takes time to figiure out which one might be right for you. At least know there is a chance to get help and that you are not alone in your mysery. ITs hard to believe this can go on constantly but the way my neuro describes it is that it can and does in some people for years. YOu have to try to break the cycle, look at what you might be eating, bright lights and glares are triggers, its just a matter of finding out what is setting your off, sometimes its just a cheical imbalance in the brain hence the meds, oh one other type I forgot to mention is anti depressants, as they alter the brain chemistry. Hope this helps a little. Good luck!

Thanks for your reply:

I had heard that antidepressants have helped with this. My neurologist wrote me an Rx for Lexapro since he said it had a milder side effect profile, but I have been reluctant to try it. I don't want to start messing with my brain chemicals, although it seems my body is doing that for me. He also mentioned Topamax but I know that has some nasty side effects also. I don't tolerate stuff very well. Has anything youv'e tried helped?

Frango

Unfortunatlely no, but dont let that discourage you. I tried zoloft, paxil, effexor, lexapro(this was the most tolerable), inderal, topamax(BAAAAAD), so all I really take is the xanax, they do use it in conjunction with the other meds but most of the time they try klonopin in a combo with the other stuff. I wear sunglasses most of the time as natural and artificial lights really set me off, I cant read much anymore because the constant eye motion makes me sick, so my life has pretty much changed dramatically with this. Hey, what have you go to lose? Wouldn't it be wonderful to have relief? Alot of people have our condition are do just fine with the meds I just have a very low tolerance so I am not a good candidate for most things, maybe you could just try the smalllest dosage possible, I would opt for the lexapro over the topamax though. The side effects of that drug are nasty.

Hi again hdnightrain or anyone else who has the answer. What exactly are the bad side effects of Topamax. I have heard about the weight loss which you think would keep people somewhat motivated to stay on it, so what are the bad ones? Also to hdnighttrain-since you have not had much luck with treatment for migraines you might want to check out the symtpoms of lyme disease. That is one of the things that I am looking into for myself since some of my symptoms are not explained by migraine.

Frango

Hi again hdnightrain or anyone else who has the answer. What exactly are the bad side effects of Topamax. I have heard about the weight loss which you think would keep people somewhat motivated to stay on it, so what are the bad ones? Also to hdnighttrain-since you have not had much luck with treatment for migraines you might want to check out the symtpoms of lyme disease. That is one of the things that I am looking into for myself since some of my symptoms are not explained by migraine.

Frango
You can read about Topamax at the following link: http://healthboards.webmd.com/search/search_results/?query=topamax+side+effects&Submit1=Search

Strongly suggest that you do your own online research if you decide to take this medicine and have a long chit chat with your prescribing physician about it's side effects. It is NOT for everybody.

I have similar headache problems, since my headaches began I have panic attacks and anxiety all of the time now. It began by worrying it was a tumor and then everytime I got a bad one I worried an aneurysm had ruptured. I have never had a panic attack before the headaches. My headache lasted seven months. It did eventually break after stopping pain meds cold turkey and using tofranil pm 150mg's and xanax. The xanax helps the most with a bad one with some aleve. I can avoid a headache during the day if I take xanax on my way to work. Recently I was in a car accident and suffered whiplash that has started the headache cycle again. It has been a month now with no relief, upped my imipramine from 50 to 100 mg and nothing. The xanax helps the most. Worrying about starting the day with a headache makes things worse. I don't know how I would function without the xanax. Makes me wonder if it is all stress induced. I have had xanax prescribed on and off for six years. WHen my headache is gone I don't touch it. Never had withdrawal or addiction problems. The funny part is (well not so funny) is sometimes my neurologist will say I won't give you xanax anymore after all this time and then an associate may prescribe it. Then the last time I saw him after the accident he prescibed it again! At this point I would procure it illegaly if I had to just to get some relief! The Dr. says this isn't for headache treatment go see a pyschiatrist but gives it to me again. I should remind him this is what helps and how do you prescribe it for that long and then just stop. I don't know how I can handle these again.