Hi1
I´ve been dealing with MAV for over 2 years. I won´t go over the whole story because it´s a long one -suffice it to say that i am pretty sure, from having multitudes of tests, that I don´t have any other disorder i.e. vestribular or otherwise that may have contributed to it. It just came on, ent away a couple of times, and came back to stay.
I have never had vertigo. My main symptom is brainfog. I also see the area around a moving car/driver as blurry and can´t focus on the surrounding area). I´m fine when I get up in the morning, that´s about it. I have learned over time the importance of staying active (without doing anything hardcore) and positive.
I gear myself up to working as I used to (my business has suffered terribly because of this condition), things start feeling better, and then, coule be 3, 4 times a year I will do something that makes it/ me worse again. Then it´s usually weeks (or longer) to get back to “normal”.
A big trigger for me is change of weather/air pressure change). But strangely, once the weather becomes stable again, so do my symptoms. What sets me back weeks or longer are other types of triggers. The last one was working on the computer for 6 hours straight while I had a coffee for the first time in 5 days. (I decided to stop it abruptly for a few days and take decaf instead, despite the fact that I had stopped in the past and not noticed a difference + I also read posts from people here who had stopped for months without noticing a difference; so the main thing seems to be, at least for me, to not abruptly CHANGE one´s level of consumpion); I even experienced periods of improvement while drinking coffee regularly). The main trigger before that one was when I went back to the gym and started working out again-have to accept I can´t do that anymore.
Anyway, I am scared of taking meds and have resisted so far, due mostly to the fact that I read so many cases on this forum of people getting worse from the drugs. I realize that we are all hypersensitive to any changes within the body. It´s a TERRIBLE FEELING when, after months of very slight improvement, you have a day where you know you have set yourself back and you´re going to pay for it with more intense, more frequent brainfog for the next few weeks (and not more hopefully)
Given that my symptoms aren´t as serious as some, I am thinking that meds may not be worth the risk in my case.
I was thinking of trying flunarizine, but was put off by the 12 day half-life, and horror stories. The only med I tried was tinazadine over a year ago (the doc at the time surmised it could have sthing to do with blood flow, it is anti-hypertensive, but it also acts as a very mild calcium channel blocker) and did not have any bad effects from this medication. I probably even improved slightly the first time I tried it, though I was so happy to be “doing something” for myself that I think this change of attitude for the better had alot, maybe all to do with the improvement.
If there are people out there who have improved, even slightly over time, with no meds, i.e. less frequent brainfog, or appearing in less frequent situations) it would be great to know!! It would be a nice source of inspiration. I eat healthy (no cheese just for the heck of it, and just about all natural), but I am pretty sure anyway that I don´t have a particular food which is a trigger.
I remain too scared at this point to try meds…though the frustrating thing is, if i just had a bit of a higher threshold to triggers, I would be just about “normal”…probably there is a drug out there for me but I don´t have the balls to try it. I just couldn´t handle the possibility of getting worse than I am…even if in the long run it would help.
I just wanted to say that although some people on this forum are over-sensitive to medication, and some have had bad side effects, MOST people do not get side effects at all, and plenty of people on this forum have had good results from medication. For example, millions of people take beta-blockers for a variety of reasons (migraine, heart-related stuff) all around the world, without any side effects. Please don’t be put off by the experiences of people on here, as the majority of people don’t have bad reactions, and a lot get huge benefits from them. And also remember that you get quite a skewed view of things on a forum like this, as most people who hang around on it longer term are the people who have not made good recoveries, have problems with medication etc. That doesn’t mean there aren’t lots of people with MAV who are managing their condition very well with no/minimal side effects from tablets.
Having said that, I also felt the same as you, and it took me a lot of courage to start taking my medication, but I have to say they have transformed my life
Out of curiosity, what meds do you take? I heard tyhe calcium channel blockers, followed by beta-blockers woulbe be the least prone to sidfe-effects.
My doc believed flunarizine would help alot more than verapamil since it acts more centrally whereas verapamil is more peripheral.
Rhino,
Just saying that the meds have given me my life back, and the only real side effect I have is constipation…which is a bummer, but others don’t have this issue…I went from a dizzy, depressed, headache every single day, couldn’t sleep at night…didn’t want to eat…stayed in bed most days crying and thinking I didn’t wat to live like this…to about 95% normal.
Which is about 90% more normal that I was before…lol…just kidding…
My fear is coming off them one day, but who knows…all I know is in this moment, I have my life back.
Whatever you do, I hope you get better!
Kelley
You say you really don’t want to try meds. I have gone that route and have been exercising on a regular basis and I can tell you that the exercise made me worse at first and now after nearly 2 months I’ve noticed that the brain fog and anxiety from this condition is starting to go away. The brain fog is about 85-90% gone and I’d say the anxiety is about 95% gone. Still have the rocking and swaying to the right, but it’s less intense and more managable now. But the first 4 weeks of cardio were terrible. In fact it worsened my symptoms by a longshot. But I just kept on doing it cause I know how good it is for you. I’ve tried the exercise route before and only made it about 2-3 weeks. Now I’ve made a commitment to it and I make sure I do it 5 days a week no matter what, and I am now starting to get the benefits from it.
I know of a few people here who went that route and are about done with MAV because of cardio. Although they both said that it takes months to really get there. One person is on 6 months and is at 98% better and the other person is 100% now after about 10 months. I really believe in the exercise. If you have time, I’d try again. You already have the diet going. I’d say that I’m about 70-75% there myself. That’s coming from fluctuating between about 30%-65% throughout the past year. 30% being as bad as not even able to drive. During weeks 2-4 of cardio, I was at about 35-45%. Now I’m at 70-75%. Although I have a long way to go I know. Sleep and hydration are extremely important when you go this route too.
Also, caffeine can keep you in a chronic state. If you can quit that altogether, I’d recommend it for a little while.
I have previously gradually gone into remission with chronic periods of MAV (ie no meds, no interventions) however the chronic periods were becoming longer and more severe and the periods of remission were becoming shorter. Meds gave me my life back (in my case Dothep/Prothiaden and Valium). They can be difficult at the start (I had hallucinations and very vicious nightmares) but the effects do settle. There were also side effects (weight gain and loss of libido) but frankly, that was a price worth paying.
Quite a significant number of people do very well without meds, ie with lifestyle modifications alone (the migraine diet, regular sleep schedule, moderate exercise etc).
Ultimately it comes down to what you can tolerate (both MAV and meds) and only you can decide that, but it would certainly be worth giving the lifestyle modifications a red hot go first.
Hi!
In answer to the post about exercise, I was jogging every day at one point but stopped doing it. More than anything because i was in amsterdam for a few months and so was biking every day quite a bit (probably a much better form of cardio for an MAVer since the head is stationary hence less of a shock to the vestibular system). I tried going back to work out a year ago and had a crisis after going too hard -so anaerobic, apart from doing a few pushups a day, i don´t really recommend. It places a bigger stress on your body than cardio and does not help regulate blood flow as well as cardio does. I also did yoga for a while which didnt seem to have any adverse effects on me. I remember the first couple of times i went for even a short jog i got worse right away, and i was scared to go jogging again for almost a year afterwards. But then i started doing it veeery gradually increasing the minutes each day. And it was fine. It was also good for my mood; i had exercised alot when i was younger and was feeling depressed from not being able to do anything.
So my lesson has been that exercise is good so long as it is built up gradually…if someone reads this post and does a half hour jog after not having done any exercise for months…it could set one back.
I question, though, wether cardio actually helps more than just walking alot every day which is something i always do.
Also when you are going thru a period where u have had a bit of a relapse and /or your threshold is low, i take it real, real easy on exercise for a couple of weeks or longer (as im doing now). But i think after reading your post i will start doing light jogs again maybe 3 times a week (since i can´t bike, now, especially)
Thanks for your story about cardio bgetting you back to 85-90% that is truly inspiring. I will be staying on decaf this time and doing eaaaasy cardio.
p.s. u r sure u have MAV and not also a vestibular condition, as this could help explain how the exercise helped you so much?
I was diagnosed at University of Michigan with MAV in November. They did numerous tests on me and my inner ears and hearing is fine. It was hard for me to believe at first cause I don’t get the huge headaches. If I get any headache, it’s always mild and one sided. But I hardly ever get a headache. I did get some bad headaches when I quit drinking caffeine. Those only lasted a few days though and I knew it was caffeine withdrawl. Anyone would get headaches from that.
I saw my neurologist in January at U of M. And he sat down with me for about and hour or longer and I explained my symptoms to him which are: brain fogginess, rocking and swaying, motion sensativity and some anxiety mixed in with it all. No history of migraine bad headaches. He told me straight forward that he’d like me to just eat healthier ( stay away from known migraine food triggers ), get 8 hours of sleep in per night and do about 30 minutes of some cardio at least 3-5 days a week. He said give that a try for 2 months and I’ll see if I’m improving at all. He made it clear that I would probably still be dizzy after only 2 months as this does take a lot of time and work to go away. But he also said that I’ll know if I need to see him again by after 2 months of his plan. At the end of our discussion, he said that he doubted very much that he’d be seeing me again if I stick to the program. He said it would be pretty unlikely that I wouldn’t be on my way to being better all the way. I asked him how long will it take to be completely gone. He said, “I don’t know, could be 2 months or it could be many months, but it’s not gonna stick around. Don’t worry as long as you stick to the program you’ll get rid of it”. That was music to my ears. I was excited hearing him say that.
This neurologist is a well respected one in the state of Michigan, he also told me that he studied with Dr. balou and he know Hain too. So I’m sure he knows what he’s talking about. He’s probably seen hundreds of people like me walk through his door. I went to the ER at U of M in October and I wasn’t able to see him until January. That’s how booked he is. That there says a lot I think.
I did tell him that I was on Nortryptaline from October till December, but got off it cause It wasn’t working for me. I asked him if he thinks I should try another drug. He said he would rather me not get caught up in trialing meds all over the board until I make an honest attempt through diet and cardio. He also said I should see someone if I needed to about how to cope with dizziness. But he made a point to stress that the exercise is what’s gonna get me there and I need to do it. Exercise (cardio) can get those brain chemicals rolling the way they need to be, plus the blood circulation will be a lot better and my sleep will be better.
I have a VRT therapist too who told me that Jogging is also a very good VRT treatment if you can do it. The up and down motions constantly challenge the inner ears and put them to work thus making them stronger. Although it is believed that excessive aerobic and jogging exercise can stress the inner ears out and damage them a little bit. But you’d have to be doing a lot of jogging for that to happen. Like marathon stuff, or hours of aerobics per day. A half hour or 1 hour can only help them get better, even after an inner ear injury, so there’s no worries there. Not for me anyway.
So far after 6 weeks, he is right. I see improvement and I’m looking forward to the day I can go in a success story.
The question you have about cardio being better than walking. My neurologist did say that walking was good too, but to get the brain chemicals to act in the most positive manner you have to jog. But you should start your jog with 5 minutes of walking and then another 5 minutes of faster walking, then the jogging for 30 minutes. If you are out of shape, then I’d recomend jogging only 7-10 minutes at first, or you could end up paying hard for it. I learned the hard way, but I’m better now thank God.
Hi, I have also noticed that after I do 30 minutes of weights I feel ALOT worse than when I run or do the elliptical! Do you guys think that doing any kind of muscle sculpting exercise is just too stressful for the body?
Out of curiosity, what meds do you take? I heard tyhe calcium channel blockers, followed by beta-blockers woulbe be the least prone to sidfe-effects.
My doc believed flunarizine would help alot more than verapamil since it acts more centrally whereas verapamil is more peripheral.
regards
J
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Hi, I take propranolol (beta blocker) and pizotifen (not sure where you live, but this isn’t available in some countries, eg the USA). I find both together work much better than either by itself. I’ve had very minimal side effects (just a bit of weight gain, a common side effect of the pizotifen), and they have really given me my life back.
I also go jogging two or three times a week. And I’ve just started on formal VRT, but it’s early days yet.
Weight training causes more blood flow to the muscles your working out. Same goes with the jogging cause your legs are at work, but jogging also increases brain blood flow too. Maybe you should try weight training first, then jog some in the same session and see how it goes.
Weight training gave me a crisis and it took many months (sometimes i wonder if i ever did get back) to get back to baseline. I can only speak for my case, but what i´ve learned is that MAV hates new stresses (physical or psychological), but if you keep doing something, the MAV will get used to it. If you have a setback riding in acar but keep doing it, it probably won´t hurt you at some point. If you are USED to drinking a bit of coffee every day, it shouldn´t hurt (many people have noticed no difference after cutting coffee for months, but, yes, i´ve cut it out anyway -i´m talking about the constant dizzy people like me, not the vertignous group). But, having said that, weight training is an enormous stress on the body. As much as i loved weight training as a kid, I wouldn´t chance it again as an MAVer. It´s one of those things where it´s just too much of a stress for an MAVer. The blood is in effect leaving the brain and going to the muscles, and MAV is related to sharp blood flow changes. With jogging, the blood does go to the muscles as well, but over time blood flow to the brain is improved. I don´t think this is the answer preciely to improving one´s condition because if it were any anti-hypertensive or calclium channel blocker would “cure” all MAVers (they can improve blood flow more powerfully than exercise). probably something else about exercise is helping. The better blood flow can´t hurt though and it could help. I started jogging on my second attempt, months later, at 5 minutes (!) and increasing by 2 minutes each time. I´m fine now. (again, biking is probably a better option, i get less dizzy when i do it even if i do a good half hour on the bike)
I´ve been in situations where my MAV went away (in the beginning) or improved where i was not jogging, but simply started walking alot more and just being more active and positive. But, hey, if you BELIEVE jogging will help, or you just feel good about yourself doing it, then i would do it.
When i traveled to a new place which i was excited about going to, and where I became more busy with things i enjoyed doing, I also got better rather quickly. That tells you how powerful a factor stress plays in this whole thing! I think that a positive outlook (don´t stop meeting people, or doing things you like(!) is the ONE most important thing. Remember, other people CANNOT TELL when you have brainfog…and if you hang in there a few minutes or longer, and enjoy the experience you are having, it WILL dissipate!
