So I agree with everyone on the board who has a hard time believing sometimes that migraine is causing all of this (even though my neuro explained how that could be and it made sense at the time). This past weekend, I went off the wagon with the diet, big time. I have eaten aged cheese, brownies, wine, sausage (have had NO nitrites in 4 months), plus ran out of magnesium. Plus, I have PMS and the weather is very weird (70 one day, snowing the next). I think the final feather was the cup of regular coffee I had yesterday by accident. The rocking feeling started, then off balance, and I knew I was in trouble. Bam, a few hours later in bed with a migraine headache, throbbing. I had tried to exercise to get rid of it at first, but I think I just made it worse. Today I feel like I was beaten with a baseball bat, lol, but rocking is better and just really tired.
So the moral of the story is, Yes, Amy, you have MAV.
I think that the doctors nail it on the head when they say that just one food or incident won’t affect you, but a combination of foods, plus lifestyle will obviously hit you hard. And that no medicine is going to make up for bad choices. Lesson learned.
I, too, have such difficulty believing that migraines can make one this sick. I know it’s true, but so difficult to believe at times. Just wondering are you on medicine now? you mentioned that you were feeling better prior to this exacerbation. what helped you?
I am currently on 20 mg of nortriptyline which I believe has been beneficial. I also usually stick to the diet, and take a B complex, magnesium and vitamin D. I am confident that in a few days time I will go back to normal. Are you currently on anything?
I am c urrently on 30mg nortriptyline. during the past few days, I have noticed some very slight improvements. I have been for the most part bedridden for a long time, so my improvements are minor, but I think I am beginning to see something. I will likely keep on raising the dose. My doc said that I am still on a very low dose, and expects improvements between 50-70. so great that you’re seeing improvements so early. glad to hear that!! what were you like when you were at your worst?
At my worst I was in bed. Horrible nausea, frequent “mini-spins,” horrible rocking, louder tinnitus than I have now, brain fog, plugged ears and the general feeling of unwell that comes with MAV. Thankfully, even though it seemed forever, this did not last more than a few weeks. As soon as I got information on MAV I started the diet, etc, and began to feel better. I began having MAV symptoms at 21. I am now 32 and have just started to figure this out. For ten years I thought I was the only one in the world with these problems. My symptoms usually are in the annoying but not disabling range. Most days, I am 90-95% and for that I am thankful. Yesterday however, I was in bed, sick, headachy and dizzy.
thank goodness those sxs didn’t last for years. that is how I feel daily for years. I am just getting out of bed a bit now. I should mention, though, that I recently had a baby and was untreated while pregnant, and things went from bad to worse. I am 33 and got ill at 30, interesting how this strikes so many young women. I wish you all the best.
Hey,
Lisa - I was just wondering how long you have been bedridden? Did you gradually get worse and worse? Reading a lot of ppls posts it worries me that I will get to a point one day where I won’t be able to get out of bed. Is MAV a progressive disease where it continues to get worse overtime?
Thanks,
Briana
I have this since June 07. from the beginning I suffered from horrible disequilbrium (rocking when walking). however, I did work the first year, because I have a job in which I am sedentary and I had few sxs when sitting. things got progressively worse for me, but really reached a peak this year when I was pregnant. I now suffer from horrible sxs when sedentary as well. I believe for me my sxs progressed slowly, but the pregnancy was definitely a major trigger. without that I do not believe I would have progressed as badly as I did.
I am so glad you feel a tiny bit better on the 30. I moved up to 40 just over a month ago and am feeling really almost completely ok. I realize now that the good I felt on 30 was not that great when I went up to 40. I think I have found my level. You are much sicker than I was , but I know you like to be in the loop re how much of what is working for people. I hope you think it is worth keeping going with the meds , I hope you find your level very soon.
Wishing you all the very best ,
Penny
I wish everyone here the best. This is such a difficult illness. I do not think that this is a progressive disease, on the contrary, I think that for most people your brain adjusts and it burns itself out at some point. The first time I went through this I had symptoms that waxed and waned for two years. The next 8 or 9 years I always felt a little off but almost never thought about it unless I was flying or doing something that required balance. I am hoping that these new symptoms burn out in 2 years as well, although less would be nice.
A couple of things, you mentioned that flying made your symptoms worse? I just got back from a trip a couple of days ago and am suffering from horrid symptoms. I’m really struggling and I’m trying to work out what has triggered my symptoms to worsen. And now i’m just wondering if it was the flight?
Also, does excercising really help with MAV symptoms? Since I’ve had this I haven’t really done any excercising simply coz it’s hard enough for me to even walk let alone excercise but it it will be beneficial than i will give it a go.
I can tell you that yes, flying definitely can exasperate the MAV symptoms. I’m not even thinking about flying again…will probably stick with driving or the train from now on (obviously not visiting Europe or Asia anytime soon :). I’ve read too many horror stories - and yours is just another.
As for exercising, since I have mild MAV, I am able to walk and bike OK. I’ve read that it is important to exercise no matter how you feel however, even if it’s just a walk around the block. There are some that claim exercise has helped reduce their migraines. Much like eating right, getting any exercise is helpful to your body…even if it makes your head feel like crap.
Well, I don’t like flying because I am very motion sensitive, but that is part of MAV. I do fly about 3 or 4 times a year. Take off is the worst for me, I am always convinced I am going to throw up! I have to be feeling pretty good to fly. I work out every day…biking, weights, running. I believe it is crucial to my health and symptoms. I try to go even when I am not feeling well.