I have been recently diagnosed with MAV and am on Verapamil. Three years ago I had the same dizzy symptoms and it went away with no migraine treatment. Came back about a year ago, again with no treatment, and is back AGAIN. I have been titrating up on the Verapamil and have not seen any significant improvements. My question is, is it normal for this MAV stuff to go away and come back? Is it sporadic? I know mine is, but does that sound like MAV? Has anyone else had a similar case that goes away and comes back? I am so frustrated with feeling like I have just gotten off a merry go round my entire life! Also, does anyone feel worse when their head is in a certain position or when you are lying flat on your back?
Any responses are great appreciated, thank you!
I had temporary “episodes” of vertigo for 6-7 years before my symptoms came on full-time 24/7/365 around 16 months ago. I was diagnosed with BPPV with my first or second episode. I didn’t go back to the doctor for it again until a little over a year ago. I was given a migraine diagnosis after a few months of testing. The earlier episodes would last from a few days to a month and then go away. I would have between 1 and 3 a year. There are others here with similar experiences. Give the Verapamil time to work. It can take a few months. If you haven’t seen any improvement after 3 months, than it may not be the med for you. I haven’t identified a position that makes me feel worse, but lying on my back with my head supported makes me feel better.
It sounds like you could very well be in the right place. Did you have testing done before your diagnosis?
Yes, migraine can definitely come and go. In the early days of this before I had a dizzy component, I would be hit with migraine episodes that would go on for months. I remember one lasting 8 months and then it just stopped and no more neck pain or head pain for months again – once for years. And then it would start again. But after I was hit with vestibular neuritis in 2003, it became a constant 24/7 problem. The impact of VN must have thrust me into a hardcore migraine state. In my present state I don’t believe it will ever just spontaneously go into remission again without using a drug.
And yes, depending on how symptomatic I am, I will get positional vertigo. Lying on my right side is the worst of all … however, if I am feeling relatively well, I can lie on my right side with little effect. Other times it can trigger instant anxiety and heart palpitations.
Good luck on the Verapamil. Give it a couple of months to work.
Best … Scott 8)
I suffered from vertigo, maybe only a handful of times before this MAV crash started. My vertigo spells were only seconds long. Long enough to scare the crap out of me though. I always thought it meant I needed to eat something when that would happen. Last May, I had 2 vertigo spells, worse than previous ones. Then on June 16th, I woke up and it hasn’t really left totally. I had a span of a week or so last month when I felt about 85-90%. I also had a few good days in November. So mine has never left for long periods of time. Previous to May of 2008, I only suffered from cluster migraines in the spring. I even had a few years where I didn’t suffer from them at all. The dizziness in my case only started about 9 months ago. Previous to that, I felt normal on a daily basis. Even when I’d have headaches, I wouldn’t be dizzy. I am also taking the Verapamil. It is weird, today I felt pretty good. This is probably the best I have felt in a few weeks. Still though, I am not as good as I’d like to be. Dr. Hain made it sound as if one can go years without having this happen again. The answer I want to hear is, “This is never going to come back, and you will feel normal again.” A few posts I read yesterday from several people gave me hope. I am starting to believe that eventually we will feel normal again. It is so frustrating. I get angry at myself a lot. I think if I can keep up with a healthier diet, exercise, proper sleep, less stress , and the Verapamil, things should start improving on a more steady basis. I swear to this day that the enormous amount of stress I was under for a few years brought this on. I think it built up and built up until I “crashed” in a way. That may sound silly, but I believe it to be true. Take care - Nance
I am not sure what you mean by coming and going. I still have what I call dizzy spells about once a week to once a month depending on time of year and stress levels.They only last about a half day or so, but leave me couch bound most of the day. When I get these, it is just like before I got a proper diagnoses and the correct treatment plan. The floor turns into a giant waterbed, the room tilts, nothing seems to sit still, and I start falling… A LOT.
Positional problems? The only place that I can lay flat on my back is on soft surfaces like the couch or bed. I have problems tilting my head to either side to long, looking up, and occasionally changing positions in bed. The sensation is one that I would not call vertigo as there is no spinning involved, but instead, I feel like I am falling through the floor backwards, or to the side, depending on which position I am in when I trigger it. This is a very intense sensation that does include extreme naseua with the falling sensation. I absolutley must get myself out of the position that is causing it right away or lose my last meal. :mrgreen:
That is how I feel, it is more of a “falling” feeling. I am most comfortable too, laying on my back with my head supported. The feeling I hate is when it seems as if the floor drops suddenly. I can look to the right and left while laying down, no problem. But, for instance if I am grocery shopping and I look up at a shelf, whoosh, dizzy sensation without actual spinning. Yesterday I actually fell going up stairs. I still have an unbalanced feeling at times. Even when I am sitting, I like to have my head supported.
What I mean by coming and going is that for about three months in a row I get the 24/7 dizziness, then it goes away for a year or so, then comes back again as 24/7 dizziness. I am currently in a two month span of the 24/7 dizziness, just got off a merry go round feeling. I am not spinning thankfully but do feel an overall feeling of being dizzy. Any thoughts?
It sounds like your dizzy patterns follow my cluster migraine patterns. From what I have read, that is how this mav can work. I guess there are periods of remission. In my case I am hoping for more of a permanent remission, if there is such a thing. I know all of us want that. My thing is…why now? How can we just develop this and not get rid of it? When my cluster migraines would go away, I’d feel 100% again. But…with this dizziness, I can never get to 100%. It just doesn’t make sense. I always fall back to blaming it on hormonal changes. Oh, by the way, I read earlier that you said you have it worse when sitting, me too.