Success Stories

This is probably premature to some extent, but a week of five straight days in a row is a success for me. It’s been nearly 9 years of chronic vertigo but never any really bad headaches. Definitely worsened at peaks in the menstrual cycle and I had two years vertigo free and drug free for no apparent reason… as I get older the triggers are getting clearer. Recently my GP has been considering the vestibular migraine dx. Previously it was a menieres dx. We tried amitriptyline 10 mg for two months but it was too sedating. Although I did feel probably a 50% improvement on some days, it wasn’t worth the sedation. We had previously tried topamax but only 14 days in I stopped due to side effects of anxiety and feeling strange and de personalised and these started pretty much in day one and there was no improvement in symptoms.

So I was re reading the posts here from Scott on the tips and answers from the top doctors. I decided to cut out caffeine in the hope that if it helped I could then use it medicinally … in much the same way as people who get headaches may need to cut out aspirin to stop rebound migraines. Now, I’ve done this before and its had no impact, on my vertigo, and I’ve also done the menieres diet for months, but, ive never cut out tea as well as coffee.

Interesting outcome… I spent three or four days cutting down from four caffeine drinks per day to none. Day one and two , no difference, day three, woke up with violent vertigo of the worse kind I’ve had in years. Lasted four hours. I took nothing . But it resolved to 90% clear which is very unusual after such a bad attack. And I’ve been 95%straight for the past five days now. It’s been two years since I’ve felt this straight and its not just the five days in a row its the quality of the straightness, the clarity of my vision, the ability to walk in a straight line etc.

Also restarted the topamax five days ago at 25 mg and I have no side effects at all. This is very surprising to me.

One of the docs used the swimming pool metaphor and that’s why I’m sharing this premature success story… Previously the water was lapping around my neck so stopping caffeine made no useful difference perhaps… maybe cutting out tea as well is what really tipped the balance. And I wonder also if the side effects are lessened because the water level is lower. But really, sometimes the pool is a bit of a mystery…
The message for me is to keep trying the same things even if they didn’t work in the past. Don’t despair. Have a break, don’t beat yourself up and try again. Something might be different…
Even though I’ve had this remarkable turn around in such a short time I am going to stick with topa if I can for a while because I like the idea that in the metaphor of the pool, it makes me taller :slight_smile:
I hope this is helpful info for someone.

Jan 2 update: three weeks straight now! Sticking with the diet, but couldn’t tolerate the topamax. Happy New year everyone.

Jan 27 update: I got to four weeks and have now had twelve days back on the wobbles…disappointing after four successful weeks.