Hi everyone! I wanted to see if anyone else has had to deal with this and if so what did you dio. Back in September 2018, I was walking and felt as if I were falling and had a massive vertigo episode where I was hospitalized for two days. I have since been diagnosed with MAV and am on Amyi. That has helped symptoms, but since that day I have been unable to move my head down, lay flat, bend and look under things without extreme dizziness. I am unable to tolerate the Epley maneuver to see if crystals in my ears may be the issue. Has anyone else had to deal with this and if so what did you do? Thank you in advance.
It’s a typical MAV symptom. Diagnostic of MAV in fact. Vertigo on self movement is a listed symptom for diagnosing MAV so I imagine most MAVers experience it. I have had it a million times and more myself. It is a sign the MAV attack is acute. All you can do is, temporarily, avoid whats causing it as much as possible whilst trying to establish what triggers are causing the attack or flare up and trying to sort them out. Amitriptyline is a vestibular suppressant so as it is not controlling the vertigo could be you are not yet on a sufficiently high dose. The vestibular system needs to calm down so check all suggested measures are firmly in place, ie lifestyle changes re food, sleep regime etc, to give it the best chance to settle.
I also experienced extreme sensitivity to head movement for a long time. It took many months but eventually it lessened to the point that it is now tolerable most days. I first started with drugs (topamirate), then vestibular therapy, then glasses with prisms, then vision therapy, plus lots of lifestyle changes along the way. Now I seldom experience extreme dizziness. For better or worse, I’ve adapted to chronic mild dizziness.
Currently I avoid moving my head – I don’t do it consciously but am aware that it’s become habitual. I avoid allowing my head to be lower than my chest – when possible I squat rather than bend from the waist. In yoga classes I use a wall or chair for most poses, no inversions at all. When I do have to pick up something that requires hands and knees, I hang on for dear life when I stand up, and immediately sit down for awhile to rest my brain. My head is always elevated when I’m on my back. When my symptoms were worse, I elevated both my head and chest.
Keep up with the meds and communicating your symptoms to your health care provider. And as Helen advises, make every other aspect of your life as healthy as you can. One foot in front of the other, my friend, and with luck things will improve. We’re pulling for you.
As I’ve written previously on this forum the very best bit of advice for MAV management that I was never given (I heard it years later from a friend who got it from her GP when she had had a severe bout of labyrinthitis) was to not stop moving your head.
I appreciate that whilst acute we MAVers do have to keep it still and sometimes even totally immobile, also that it’s very difficult to know when to start and how much to move it but the advice is sound and once it becomes habitual that in itself can affect balance in other ways fuller details of which have only cone to my notice relatively recently. It’s all linked to cervicocular reflex. The way nerve and eyes influence balance.
I agree, Helen, I’ve been given the same advice. The trouble is that when any movement is uncomfortable, most of us tend to unconsciously avoid it. Like so many others, I was undiagnosed and/or misdiagnosed for many years, which resulted in several unfortunate postural habits that have become my normal state of being. Intense work with vestibular therapists has had only modest success in changing that behavior. Bottom line . . . head movement makes me dizzy and nauseous. Restricting head motion is an unconscious coping mechanism that helps me get through my day. It’s not something I think about, it’s something I do. I suspect if I had had earlier medical intervention, some of my chronic symptoms could have been avoided. It’s too late now, I’m afraid.
Thank you for the feedback everyone. I Have tried vestibular therapy, and I get such a horrible headache when doing it that I have stopped. I’m beginning to think this will be a life long issue, although I certainly don’t want it to be.
I tried vestibular therapy when my symptoms were out of control but had to stop for awhile. Once the drugs kicked in and my brain started to calm down I was able to slowly go back to it. It’s not easy and it’s certainly not for everyone but it helped me.
Oh I wasn’t suggesting you took up VRT. Just to be aware once you aren’t so symptomatic that keeping your head still all the time can in itself cause more balance issues. So just try to move your head naturally.
Oh dear, yes I’m with you all the way. I have done the same, exactly the same for years but no, no, no, it’s never too late. Believe me it isn’t. Just this last few months I’ve really got around to sorting my own neck out with the aid of a little very gentle physio, massage and dome heat, and believe me the difference is proving quite amazing. I’d always known I was doing it and I certainly couldn’t have done much about it until I was part recovered but it’s certainly worth persuing. I won’t repeat it all here but if you read my PD entries for December 2019 on you’ll get the gist. Helen
Got it! Thanks for the advice.