Hi Sarahat,
I’ve been there many times too. Try to find something you love and do it. I horseback ride now that i have my symptoms under control with gabapenin and it’s really important to me. I want to do some good in this world even though I got sick, and that’s something I remind myself too. Try to live for someone or something else.
We’re not in excruciating pain most of the time (although I know how bad the symptoms can be) -and that’s what I tell myself. I know that this is a very hard problem but if you get really desperate try to avoid all artificial lights during the day - that was my backup plan (like moving to some place in the woods with candles!) but right now Im doing ok with the artificial lights because i’m on gabapentin at 200mg 3x a day and taking magnesium glycinate 2x a day at 400mg and also B2 and 400mg.
All of that together makes me not dizzy and I can function almost as well as before MAV hit. Have you tried gabapentin?? It is the only drug I could tolerate and that actually gave me back a sense of stillness-but only at this low dose. It may be having some side effects perhaps somehow, but I dont know what they are and I’m okay with taking this drug to live my life…whatever the sx they are ones I can tolerate.
I feel pretty much like myself on this drug - if not a little bit more open to people and less anxious. The main thing is to remember that mav is so bad but it also is a gift in a way because it makes you realize how trivial a lot of things are. Since getting mav, I’ve learned to value the times I feel OK much more than I ever did before I was sick. Even when sick, I think I’ve learned how tough I can be to push through it and I feel stronger for it. We’re very strong people to have survived these symptoms and we can do it.
Medicine really helps too along with the supplements. Try to eliminate caffeine and other high tyramine foods that increase the symptoms…nuts are a big trigger for me. Anyway, it’s also great you have a partner. This hit me so young… I guess I look at this like it’s kind of like someone who is blind or deaf- you learn how to adapt and move on with your life.
Our problem is invisible but that’s the way it is. Remember there are lots of other people who have mav and we all have to support one another. I think it’s nerve damage from a virus. Perhaps one day doctors will understand it better.
I do have a glass of wine or beer at night since that helps me chill. Try the gabapentin at least if you haven’t already… xx
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