Does anyone actually recover from this? I’ve read many of your posts and it seems that there are many different meds. I’ve tried many but not with much guidance from doctors who don’t have much to offer.
Any one have SCDS surgery? Did it help the MAV?
Sally
Sally,
I was on an 18 month 24/7 dizzy spell when I finally got diagnosed. I was at the point that I was begginning to debate with myself wether or not I should apply for disability. Within a couple of weeks of the first med I tried, I had drastic improvement. It took me three meds before I found one that I could tolerate the side effects, each one helped my balance, and other symptoms. Now I am pretty much 90% to a 100% on an average day. I still have days that kick my *** and put me on the couch for the rest of the day, but I can live with that considering the rest of my days are pretty good now.
Brian
I’m sorry if it is posted somewhere, Brian, but what three meds did you try with some success? And how much. The doc I was working with seems to use only sustained release types of meds and you cut them up into small doses.
Thank you,
Sally
Sally. Im sorry, what is SCDS?
Kim
Never mind, I just went back and read your intro. I’m sorry. 
Kim
— Begin quote from “Sally”
I’m sorry if it is posted somewhere, Brian, but what three meds did you try with some success? And how much. The doc I was working with seems to use only sustained release types of meds and you cut them up into small doses.
Thank you,
Sally
— End quote
Topomax: had to quit do to temper issues
Nuerontin: had to quit do to feeling doped up at all times and unable to wake up
Depakote: still taking - for me most of the side effects were digestive in nature, but I have learned how to deal with those.
Hi Sally,
I’m feeling better after 9 months of pure hell. So there is hope. I never thought I would make it this far. Not in a million years. As far as “recovery” goes, I like to think of it in terms of “control”, just like any other chronic medical condition, and this condition CAN be controlled. Some people have it very minor, some people have it very bad. I had it VERY bad, and only recently have gained control with the help of time and topamax. Dr. Hain told me, “nobody has ever had a migraine that lasted forever”. He was right. The condition is lessening for me and when I DO have set-backs, they are nowhere near where they were when I crashed back in December. I hope that gives a bit of hope.
Boslee
There’s always hope.
I’m not completely symptom free, but I just keep getting better and better. I do pretty much as I please…which I definitely could not do a few years ago.
Every day, there’s absolutely no doubt that I’ll get up in the morning, run 2-3 miles, come home and do 200-300 crunches, get my daughter off to school, and head to the office for another day at work. I could do almost none of the above a few years ago. Pretty easy to get my daughter off to school then (LOL), but I could not do the others.
Hang in there.
I was free of the acute symptoms most of the Summer. But, I have had a return of some dizzy spells this fall. Mostly mild episodes without any spinning. This is a big improvement from where I was a year ago, but still a long ways from where I want to be.
Yes, I had SCDS surgery about 18 months ago. CTs indicated bilaterally dehiscent semi-circular canals. We assumed we’d found the source of the dizziness. Surgeon was a bit reluctant to operate because I did not have the classic SCDS symptoms of tullio (vertigo produced by noise) or pressure induced vertigo. My vemps tests were also normal. Anyway, at my insistance they went ahead and did the repair of the left side (all my tinnitus, fullness, etc. was on the left). Within 30 days after the operation I was back to base line (ie experiencing the same syptoms that I was prior to surgery). I saw Dr Minor at John’s Hopkins (he’s the guru on SCDS) at this point and after reviewing my records he concluded that, in my case, the dehiscent semi-circular canals were “incidental finding” and not related to the symptoms I’m experiencing.
Why do you ask about SCDS? Have you had a CT scan that show’s dehiscences? If you haven’t had the CT I’d certainly get it done. The new imaging techniques that they use at John’s Hopkins will be able to show definitively if your superior semi-circular canals are dehiscent or not. Even if they are I’d be very hesitant to go forward with surgery unless your symptoms are also a good fit for SCDS. It’s certainly possible to have dehiscent semi-circular canals without having SCDS. In fact it appears that about 1 person in 200 will have a dehiscent semi-circular canal. Since the incidence of symptomatic SCDS is much lower than this (maybe one in 20,000), the odds of you having SCDS are not good unless you have both typical symptoms and a positive CT.
I have a Meniere’s mav mix. and it’s in both ears. so i can’t have any type of surgery. I just try to flow with the symptoms. I have usually a string of good days togerher. and I make the most of those days. on my bad dizzy days i have valium i take and just ride it out. i always try to stay possitive and tell myself tomorrow will be a good day or it will pass soon. sometimes it does get the better of me and I get depressed. my family does a great job of bringing me out of it. hang in there… 
Sally,
A little over a year ago i was bedridden. As soon as I started treatment I started improving. Each preventative I added did something more for me. Last week I actually drove for a total of 2 1/2 hours, with a 2 hour wait at a vet hospital and I did fine (with the help of some up-front ibuprofen and a small dose of Valium.) A year ago I never thought I would see the day.
The key for me has been finding a good doctor/diagnostician/prescriber, finding my food triggers, making life style changes along with considering alternative treatments that we have been talking about abundantly on the forum lately.
There have been some extremely interesting threads posted in the last few months, such as the Migraine Program - i think it’s entitled “Migraine Program - need input” and is posted by Scotsman.
There have been quite a few threads where women are talking about having their hormones tested.
There has been a discussion regarding using a mouthguard for people who brux - this adds irritation to the trigeminal nerve.
If you can, read through some of the threads, see if you can find anything that might be helpful to you.
I personally have started using a GoLite lamp to get my circadian rhythm back in order. It has enabled me to get off Ambien and sleep all night undisturbed for the first time in 7 years, which has helped my MAV tremendously.
I followed the migraine diet strictly (Dr. Buccholz book “Heal your Headache”) and then stated adding things back. My God can i tell the difference the next day when something triggers me. I wouldn’t have a chance of feeling well without doing the diet.
MSDXD said it best so i’ll steal his quote, i’m sure he won’t mind, there is always hope! And I can’t believe I’m saying that because a little over a year ago, i was hopeless and depressed, on a rapid downhill slide. I Googled nightly trying to figure out what the heck, cause doctors looked at me like I was a freak. Then i found this forum and I knew. Now all i had to do was find a doctor, and that part was actually easy.
Read the forum. You will learn so much. I swear when I first joined I read it from beginning to end. The stories were so interesting and heart-breaking as well as filled with knowlege.
Adam and Scott have put together a great library of articles on the main page. As well, the posters are incredibly knowlegable and experienced with both the illness and the treatment of this horrendous condition.
Good luck and be well Sally,
Julie
RE topic heading - “Anyone feeling better”
I’m feeling better today, thank you for asking . Dr. Escandon decided to cut my Effexor back down to 75 mg. Little does he know that I’m going to do 75 mg for a couple weeks, then cut the tabs in half & cut down more - with the plan to go off it entirely before I start the Topamax. Anyway, I’m more awake; more clear-headed now. I’ve even been able to work up a half-dozen articles for my organization’s newsletter.
We’ll see how I am while taking absolutely nothing.
Great news Joy! I’m glad to hear it. (we always know our bodies best, don’t we - they prescribe by cookbooks)
Julie
Yes, Chaz, I do have a dehiscence that shows on a number of CT scans. My VEMP is abnormal but a different than usual abnormal and I do have symptoms that correspond to noise and rhythmic sounds. But I do have a history of migraine probably dating back to when I was 10 years old. The migraines are always on the same side as the dehiscence. Now I live with constant head pain and vertigo. The doctors have not offered to do the surgery but are a team that trained with and are in contact with Dr. Minor.
Sometimes Tegretol eases the pain which would indicate some type of nerve damage which could be what the VEMP is showing.
I am trying to put more records together to talk to both Dr. Hain and Dr. Minor. It’s a slow process when you feel the way we do.
Thank you for the answer, Chaz.
Sally