a couple of days ago I watched a pretty decent German TV feature about vertigo. They had patients with positioning vertigo, morbus meuniere and MAV. From that I’m even more convinced that MAV is what I have.
Well, besides high dosage magnesium they recommended functional training, for example spinng around yourself in an office chair with arms stretched out up front and watching your raised thumbs. Or juggling a ball over your head from left to right and back watching the ball or balancing on one foot, etc.
They said it would help the brain to learn to compensate. Does anybody have experience with that?
I dont have the experience with the type of exercise you’ve mentioned above however I would say that personally for me any vestibular exercises can exacerbate my dizziness - even today for instance I was driving around a particularly winding road which nearly set me off.
I have heard people talk about their own experiences with VRT and have myself done some in the past but nothing has really helped me but Amitriptyline and Botox…
Generally speaking, everyday life is excellent VRT in my opinion. I wouldn’t reccommend doing anything like that when your thresholds are low however… could start a war that you can’t win.
May I ask if you’re under a Neurologist? Perhaps it would be wise if you haven’t already to see a professional for a solid diagnosis?
Thanks a lot for your reply. Yes, I was diagnosed by a neurologist who is a vertigo specialist. He prescribed me flunarizine, but I had terrible side effects with that. As my case is not that terrible compared to others, we agreed to go without medication. Travel sickness gum and magnesium helps me best.
It’s been 11 years now and I got used to it eventually. Biggest problem remaining for me is car driving beyond 40mph.
I agree that it is pointless to do anything that will set me off, but gradually doing some exercises might be helpful, who knows
Yep, or you could try balancing on a gym ball looking left n right, or maybe a bit of bouncing on a trampoline, Any of those would knock my balance out completely and put me flat on my back in bed for a week anytime if that’s the aim. Escalators, lifts, vibrating floors, dodgem cars at fairgrounds all worth avoiding with unstable MAV if you ask me.
Certainly be pointless for me. All these actions affect dynamic balance. Not everybody is the same. There do appear to be different versions of MAV. We each need to understand our own. I’d like to see some of these theorists cope with MAV practicalities though. I really would. There are exercises and there are exercises. Helen
@sfnative: I agree that this shouldn’t be a DOI thing. Could you tell me maybe a little bit more about what you did? That would be great!!!
Otherwise, I guess we all have slightly different symptoms. What I’m suffering most from are:
big crowds: just too much visual and auditive stimulation
walking down long, narrow aisles, e.g. in a super market
car driving beyond a certain speed. The road (including lines painted, trees on the side, etc.) rushing by left and right send me spinning.
My N. suggested that my left and right vestibular system might be not equally good (or bad for that matter) so with this road(or similiar) rushing by left and right might be “processed” asymmetrically causing confusion.
Best advice. Exercises need to be tailored to individuals specific needs. Doing ‘someone’ else’s might well prove far more damaging than taking someone else’s prescribed medicines.
Your symptoms sound like Visual Vertigo to me. Typical common symptoms which occur when MAV has the upper hand and is unstable. VRT is not generally recommended for unstable MAV. In fact few specialist recommend it for MAV period. It tends to be in much more general use in the US where VRT expertise first originated and still seems way ahead of Europe.
From what I’ve read (I’m not medical just another MAV ‘victim’) the brain would soon compensate for constant stable asymmetry to remove the confusion. Trouble is with MAV it’s unstable and constantly changes so there’s no stable baseline to which to return. Hence the use of preventatives. Helen
I have similar problems as you, Frank. Supermarkets and shopping malls are particularly difficult, the more crowded, brightly lit and noisy, the worse I feel. I can actually feel my brain slowing down – my movements, my speech, my thinking, all slow down in loud, visually busy spaces. Frustrating. That said, my symptoms are much less intense now and I believe vestibular therapy was partially responsible for the improvement.
I worked with a very skilled therapist in my neurotologist’s practice. We worked on-site and I did exercises at home twice a day. I can’t tell you specific exercises but the two objectives were to minimize my extreme sensitivity to movement and to improve my balance. It was slow-going but I saw gradual improvement. Of course, I was taking meds at the same time so it’s not possible to separate meds v.s. therapy. A couple of years ago I also started vision therapy. It seemed to help but the improvement wasn’t as significant as what I experienced with vestibular therapy.
Therapy might not work for everyone but it helped me. You might want to look into it. This miserable condition is a true trial-and-error situation. We’re all rooting for you.
It all started when I had to take a high-dosage antibiotic for a week. A few days after I experienced my first vertigo attack in a mall. It was plain horror. 6 months later I also had an anxiety disorder. The vertigo caused big anxiety and then the anxiety made the vertigo worse. Have seen a million doctors, but without any avail. I guess we all have similiar storires. At one point I was panicking just entering my car. But eventually I forced myself to slowly drive in residential neighborhoods doing 15-20mph. And ever so slowly I at least got back to being able driving in town, but I can’t get to the freeway. I did the same with other behavior, some sort of exposition therapy. But at the end it was only the long time that taught me like “I didin’t die all those days before, why would I today” and that relaxed me and I eventually got used to the vertigo so on many days I don’t even notice it anymore.
I guess I will check with the local university hospital if they can offer some sort of therapy.
Only two? I got pretty much double that with a couple of minutes on a gym ball. In all seriousness I must admit such symptoms that have lingered on jar with me now. That vibrating floor in a mobile trailer medical testing clinic got me last week and crunching across a patch of vegetation, weeds on a bit of a mound out walking took my balance by surprise a while back. Since the more recent floor fiasco I’ve been digging and I think it’s some intermittent type of vestibular ataxia and I’m currently on the trail of a specialist physio who I’ve been told has some answers to that sort of dynamic balance - for I think that’s what it is - issue. I’ll report back either way. Helen
MAV is most certainly a balancing act in more ways than one. I think there comes a point where meds have pretty much done all they are going to do after you’ve been on them some time and then we ought yo be looking at other ways forwards. None too sure Functional Training or VRT is the way to go though. Might be too vigorous for some. It’s worth really reading around the subject that this point.
The human body is so fully integrated if we are able to somehow identify any maladaptions that are the result of long term and chronic MAV and correct them it’s all to the good. I think this most particularly applies to those who’ve suffered loss of balance with the resultant enforced bedrest. I knew I had extremely tight neck muscles and shoulders but it took a physio to release them. No amount of shoulder rolling was going to do it. All such maladaptions have a knock on affect on balance. Those tight muscles were discouraging me from moving my head even when I was OK and just not moving one’s head naturally can cause the VOR to work incorrectly (I’ve since read) which further adversely affects balance.
Three physio sessions down and despite quite adverse reactions (or maybe because of them!) and my dynamic balance has improved. I am standing more upright and when I do bend in any direction I now come back to the same upright position something I’d not been doing for a long time. Even though I still cannot comfortably turn my head much outdoors indoors it’s much better than it was. I had almost convinced myself the Propranolol was causing me Postural Dizziness of some sort which apparently it can but now it seems this was a result of incorrect messages from tight neck muscles. Releasing those muscles has also removed the rear head pressure which had been removed by Propranolol a year ago only to gradually creep back on. There seems to come a time to look at the physical effect the condition might have been having on the body and trying some way or another to correct it.
I’m sorry you’re facing this. We’re in the same boat brotha. Check into functional neurology. It is not covered by insurance and can be quite pricey, but desperation is a real side effect of MAV/VM. If you have good insurance, submit a superbill and they may reimburse for some or all. I have Kaiser unfortunately an they know a lot about basic illness. I’ve been seeing a functional neurologist for 8 months off and on and it has helped with the constant dizziness tremendously in addition to helping with the associated visual symptoms. I would highly recommend. Better than VRT any day. In fact I got WAY dizzier with VRT. I tried it for 3 weeks and threw in the towel.
@Dizzyaf I would like to hear more about what exercises or other things you did with your functional neurologist to help you with dizziness. I called one a few months ago, but you are right about the cost. I could not afford it, but I keep thinking about it as an option.
VRT helped me a lot. I went to therapy for 5 months. By the end of my sessions I was dizzy and felt dumb/incapacitated. There are so many exercises on YouTube that you can find. My therapist said make your symptoms go to a 5, but not above that. Towards the end of my treatment they made me use virtual reality goggles. I had to use a remote control to participate in it. It was very tough. I used the same technology the US navy uses to determine which sailors will get sea sick. It certainly helped my balance and cognitive ability, but still I am always in a dissociated state and I get brain fog sometimes.
And did they tell you how to hit the brakes to stop? That’s what I would need to know before I ever touch VRT again. My very very experienced and even more ‘very’s’ expensive therapist used to say with going into shops etc only do as much so you aren’t worse for more than ten minutes afterwards. Not getting at you at all Mike but such comments are ridiculous without the algorithm.
From memory if you plough through this site and find the articles on treatment written for physiotherapists etc it does come up with suggestions. Nothing too specific. Must be Knowledge is Money syndrome I suspect. I have vague memories of suggestions of people walking about whilst listening to music and such. Of course these functional symptoms are supposed to come from a non neurological cause which in theory eliminates migraineurs from consideration. Though there is mention of similar symptoms occurring with people recovering from various trauma. neurosymptoms.org/#