I have been on bed rest, actually no stimulation at all since December 22, 2016 and I am weak all the time. My symptoms have seemed to improve, I still get light headed, blurry vision comes and goes and I am still losing my balance. I did the laundry for the first time last week in months and I was down for days after just so weak. If I ride to the store with my husband (I don’t go in) I am exhausted when we get home. Anyone else have this problem? I’m trying to do little things to get my strength back. It I don’t know if I am making it worse or not. I have been dealing with this since October 2016. I just want it to go away.
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Fatigue and feeling exhausted are hallmarks of VM for me. I try very hard to keep doing things and I walk (stumble around) with my dog every day because it makes me feel better to be out in the fresh air. I also make sure I get plenty of rest because if I do too much I feel terrible. It is very frustrating but it is the nature of the beast that is VM.
Beast is right! I am going crazy!! I am bored to death, all I do is sleep. I don’t know how people don’t go crazy with VM. My ENT said once that she hopes she never gets this, that was reassuring. Just tired of being tired.
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Have you been given any meds? I am on nortriptyline and it has made a difference in so much as I can do things instead of trying not to move. I still get very tired very easily but I can carry on doing things in the morning which is the best time of day for me. I am very tired after lunch but have to walk my dog at 3.30 and although I am weary the fresh air makes me feel better. After that I have to force myself to cook and shower etc. I have a seat in the shower which has made it easier as I get dizzy putting my arms up to wash my hair. I think we just have to find a way to keep going in the best way we can in the hope that we will one day be like others who have overcome the beast. There are some, their stories are under success stories I believe. Take heart we can deal with this!
Oh yes, I am on protriptyline, betahistine, valium, magnesium citrate, and losartan. I take 10 pills a day. I have horrible side effects from some of them, I am actually going to see a 2nd neurologist in 2 weeks for a 2nd opinion. I don’t get dizzy nearly like I was before. My main triggers are being under fluorescent lights (which is why I can’t work) and having my head in a downward position, therefore, I can’t scrapbook. My husband did make me an easel last week which is allowing me to at least do one page a day now. I get lightheaded if I try to do laundry, all of my issues are on my right side, neck pain, head pain and arm pain. I have no trouble showering or washing my hair. I stay in bed most days until 11:30am, then I go down to the couch, then I sleep again. I am severely depressed, which is not at all common for me. The protriptyline is supposed to help with that but so far has not. I thought about starting a support group, just not sure how to do that. This is horrible. I have days where I feel good, but then the other days are worse. I am going to go to the store before I go to my doctor appointment to see if I can tolerate the lights. The last time I did that my neurologist yelled at me. How else am I supposed to see if the meds are working? I need to get back to work, I’ve been out since November, I work for a wonderful company, but I want to get back to my life.
That sounds like an extraordinary cocktail of drugs, any way you can find out if you can cut back? Is it possible the combined side effects are making you worse? Just my 10 cents.
I had every one of the horrific VM symptoms but found huge relief with just one drug (amitriptyline) and at a fairly low dose. The remaining symptoms I simply accepted and let them fluctuate. Luckily the remaining symptoms have generally improved with time so far. It’s taken me 1.25 years to get to this point of very little dizziness.
Have you considered or attended psychotherapy? I found it very useful to help me manage my reaction to having this chronically.
Best of luck with finding the right path.
You’re not kidding! I was on 14 pills a day when I was taking the steroid too. I was taking Verapamil but I had to many side effects from that so she put me on the protryptoline and back on my Losartan. I am seeing a neurologist for this, does anyone else see a neurologist or just an ENT? I was in balance therapy twice a week and did that for 6 weeks but she made me stop immediately as she said it would make me worse. I was also scheduled for a VNG/ENG test which she made me cancel. Has anyone had that test done and what has it done or shown for you? I definitely have balance issues that seem to be worse since I stopped the Verapamil but I can’t take that bc of what it was doing to me. I feel like a gerbal spinning on a wheel…going nowhere.
I am getting great information from this site that I plan to take to my next appointment. Thank you everyone for replying and posting your issues too. Maybe one day we can find a cure!
If it’s any help, I’m hugely better than I was. I’m convinced this happened ‘anyway’ and was not as a result of the drugs. I’m not 100% yet but sooo much closer.
I will say that disturbance of the inner ear function appears to cause no end of mischief that gets you right where it hurts, deep into your psychology. Be patient with your poor brain and give yourself time to recover. It appears there is no quick fix to this thing: on listening to those who consider themselves mostly better it seems to take them at least one and half to two and a half years.
My philosophy was always to take enough drugs to cut down the worst of the symptoms whilst putting up with the rest and believing that the underlying issue would taper away with time. In addition I tried to avoid ‘avoidance’ and exposed myself to all environments even when very uncomfortable from artificial light and/or crowds as I recognised that avoidance behaviour created it’s own kind of stress and stress is a natural exacerbator. I’ve even kept up an exercise regime running three times a week most weeks. So far I believe I’m succeeding. I’m still on drugs but have had my first dizzy free week and artificial lights barely bother me at the moment. My tinnitus is much less bothersome and I’ve started to have a perfectly normal social life.
Good luck at your appointment with your neurologist. I would definitely discuss rationalising your med intake. Try to use the brute force of your will power to get through this and know that it is possible to get better even though it seems so desperate at the moment. The first step is calming yourself down and reducing the panic level.
You can do it!
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Hey guys, Things can get a lot better- I still have MAV but I suppress it with a lot of different types of supplements. I take 400mg-600mg magnesium glycinate. 400mg CoQ10 also helps me. Feverfew 360mg 2x a day standardized extract has also helped but makes me a little sleepy. Give B2 in doses prescribed for migraine a shot and see if that helps (400mg). St Johns Wort acts like nortripyline and can help too. I’m not ever really sure which thing is the most helpful but all of the above have helped me at various points. I am not on meds anymore, and doing just fine so far. The one thing about this illness is that it makes you put everything into perspective more than you would have. I’m glad about some of the life choices it’s emboldened me to make even while making some things more challenging especially the years that I hadn’t discovered these supplements that help with migraine brain states. xx
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Hey Olivia! Despite still having it are you still witnessing improvements day by day?
I don’t improve beyond the improvements I’ve seen but I’m 99% on my good days. 
I take magnesium every day which is incredibly helpful- B2 400mg is also helpful. Feverfew and St Johns wort are also good add ons. They do something to serotonin like nortriptyline does I think.
Feverfew makes me sleep like a log, SJW makes me kind of restless at night. CoQ10 is also helpful. When I get a handle on which one is the most helpful for the fluorescents ; I’ll let you guys know. B2 at the high dose seems to really cut my sensitivity to them. I read that magnesium B2 is safe in pregnancy so I’m hoping that’s true. … Females with this who want to have kids have that extra predicament on their hands!
How are you doing? Still feel really good on nort and seeing more improvement?
If it’s an encouragement to those on here, I got it in April 2013 and improved for two years without any meds at all with my nerves I guess healing from the initial MAV attack (really scary), but I wasn’t getting better completely (had horrible fluorescent light sensitivity and feeling of being kind of always at motion, with head pressure under lights) so I went on gabapentin for about three months, which helped calm me down and have my migraine state abate a bit, and now I’m just taking supplements.
I am teaching full time at a university so it does demonstrate you can recover almost completely and for those days that you don’t feel good, you just go with the flow. I think that many more people have this variant of migraine than we know.
The combo of supplements Dr Weil lists on his migraine website are really my saving grace http://www.drweil.com/health-wellness/body-mind-spirit/headache/migraine-headaches/
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I appreciate your positivity and will definitely be talking with him. I got the call today that he can see me tomorrow, not next week. That actually made my day. I have had a lot more lightheadedness issues today than i have in a while, not sure what thats all about. I’ll post tomorrow what he says.
Good luck tomorrow, Scrappinmom! We’re all in this together …and we’re the lucky ones who have found this community. I thought I was the only one with symptoms for a long time! Recovery is possible… it takes some experimenting though! xx
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I went to see a doctor today at UC who i thought was a neurologist. Turns out he is just a headache doctor. He did spend a lot of time with me and explained the medications I am on, but would not even discuss the vestibular issue. So, I think i left with more questions than answers. Surprisingly enough, his office was all flourescent lights and by the time I got back to see him I was very nauseous and unbalanced. When i woke up this morning I took a shower and just felt off. I came downstairs, went into the laundry room and got lightheaded, I was in the kitchen, turned around and became dizzy. I haven’t had dizziness in a while. So, when I woke up I was taking 10 pills a day…now I am taking 17.5 per day!! He added on CoQ-10 and B-2. He said that seeing John Oas at Ohio State Wexner Center is the best thing for me. I have an appointment with him on 2/20. Until then, I guess I will continue to be the neighborhood pharmacy. He also recommended that I see a psychologist for the stress and depression. Luckily, my company has a program where I can find find one to go to. Until then I guess I will continue as I have been. Feeling very sad to say the least.
Oh boy, poor you. Yes that’s starting to get a little crazy imho. Keep us posted on your next visit.
Yes you need to see an oto-neurologist
In my experience you need to see a lot of doctors before you get one to listen to you. Don’t give up hope! I have my bad days too but overall I’m feeling much better. Time helps as well…my sister has had this for a long time too, she swears by not eating gluten or dairy.
I was pretty lucky, the first specialist I saw was aware of the syndrome, however I did not go the meds route to begin with until I’d tried a period of ‘wait and see’, VRT and psychotherapy. It was only when I started to get three migraines a week I started meds (initially Propanolol: ineffective for me, then Amitriptyline: miracle drug).
I am very pleased with my care from a symptom management perspective, however I remain VERY sceptical about the underlying cause of the condition. I do not believe its migraine-lead, but that migraine is one of the symptoms. I am a special case in that my initial dizziness (which went away for months) appeared 15 minutes after pointing a lukewarm shower into my ear in an attempt to clear some wax. I was profoundly dizzy for 4.5 weeks then it completely disappeared. 5 months later I started to feel lightheaded. I believe what I have is secondary hydrops, but it seems the treatment is the same. This is suspicious.
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Sorry for your disappointment, Scrappinmom, - hope you soon find the help you need.
@Scrappinmom No one answered you about an ENG, so just wanted to say I had one a few years back when I was still functional and not nearly as bad as I am now. All their findings were normal, except there was one part of the 3rd test that I couldn’t finish because it got me too dizzy. I think after the worsened dizziness I’ve been through since then I could handle it now, but the ENT said it wasn’t a huge deal since everything else was normal. One thing I’ve learned from this is that my tolerance level of how much dizziness I can stand seems to be going up, as I guess I have no choice otherwise. I suppose an ENG is helpful to rule out some inner ear issues. I also got a rotary chair test (just as awful as it sounds) done which ruled out even more specific inner ear issues, well basically all inner ear issues that can be seen via tests.