So glad I found this site!!! Your support has meant so much to me. I can be just one of many instead of the sick one!
I have had what I called “dizzy headaches” for as long as I can remember. These dizzy, nausea, car sick, bed spins, walking into traffic, photo and phono sesitivity attacks came and went through out my life. I first saw a neurologist at the age of nineteen. He slapped my butt and said “it’s just stress, try jogging”.
These attacks could last a week and I was flat on my back.
As I have read so often at this forum… No body believed me!!! I thought I might be going crazy.
Well, October 10 , 2011, my life changed. I woke up with such a severe attack I thought I was having a stroke! This feeling has been with me to a greater or lesser degree ever since.
I have had mri’s, ct scans, cerc, buckets of gravol. I have seen family doctors, audiologists, BBPV testing (gross!) neurologists, ent/neurologists. I travelled to the United States to get a VNG test. I was miss diagnosed with BBPV and spent a fortune on treatments that didn’t work. I have been humiliated in public during attacks, this has been so hard on my kids and harder on my husband. I can hardly socialize for fear of loud sounds, people talking too much, wearing loud patterned clothing, maintaining eye contact(I find this hard to do!) Does anyone else understand this?
I got to see a new, young neurologist in the spring of 2015 . She diagnosed me. Migraine associated vertigo. (Say what???) . I could have jumped for joy! She prescribed 100mg of Topomax to be taken at bed time. Within 3 days I was passing out. So, I went off and I was back to square one. THEN… I found this web site. You all told your stories, bad and good. Sometimes I cried my eyes out for all of us and sometimes I felt hope. Enough hope to give Topomax a try again, but, this time I’m dong it my way. I started at 3 grains and in the course of 4 months I have very slowly in creased to 8 grains per day. Yes, that is grains, by weight, not grams. Slow and easy wins the race. I tried going up to 10 grains last week but it was way too much!!! Back down to 8 again. Oh, and I haven’t felt this good for years! Not anywhere near normal but, oh, so much better!!!
So… Keep on trying everyone! I send all of you my most heart felt gratitude. All my support. All of my awe for your honesty and service.://www.mvertigo.org/t/post-your-story/67):
I’m glad Topomax worked for you. I may get back on that again.
Thanks for your reply!
It is now late Jan 2017.
I forgot I had posted that post to be honest. I jumped the gun at the time BUT…
I did keep with the Topomax! Slowly. I nearly gave up so many times. I had support from this website to continue. I realized, only about a Month ago when I reached 75 mg at night before bed that IT WAS WORKING! I still cant believe it! I almost don’t want to write this for fear of jinxing my good fortune!
I hope you continue to try! It is a thankless, unforgiving, process. I wish you all the best of luck.
2 posts were split to a new topic: I’m hiking, playing sports, doing most everything I want to do again
I was fascinated to read this post. It appears the poster titrated way too quickly, passed out and gave up the Topamax only to return to it later and increase, oh so very - had it not been successful - one might have said ridiculously slowly, three grains to eight grains over four months. And seven months later, in May 2017 she was feeling much better on ten grains. How’s that for patience and perseverance. Incredible. Helen