I am new to this site and desperate for answers.
I have just been diagnosed with MAV together with ‘multi factional’ problems associated with my vestibular system.
This was triggered by severe stress and bullying a couple of years ago as I already had a compromised system and has taken this long for a diagnosis.
My main problems now are visual. I get a jerking feeling of my eye and jumping when tracking. I cannot bear bright light / flashing. So watching tele is a BIG problem as is using the computer for any length of time. Looking down is a problem as is moving my eyes around when washing up string pots etc.
I sometimes get an ache over my eye / eyebrow and the side of my nose with the very occasional full blown throbbing migraine.
I have had an MRI brain / ears, which was normal as were all blood tests.
I have now started the dreaded VRT. I feel fine when doing the exercises standing with eyes closed feet together / one foot in front of the other / on a cushion. Also turning my head from side to side / up and down and shaking ( last one I hate and have problems doing).
I feel fine when doing them it is later in the day I feel awful eyes all over the place and the next day, I do not seem to be getting better but feel worse.
Can these sort of exercises really trigger this? Should I continue?
I have spoken to my physio and she said it was unusual to feel worse later and not during the exercises. Is this your experience.
Any advice for me I am so fed up I cannot function properly cannot read / watch tele/ computer for long/ scared of going out / driving etc etc etc seems to be never ending. Will I ever feel me again?
Any advice would be appreciated.
How long have you been in VRT? My audiologist says that it will get worse at first because your body hasn’t developed a tolerance yet, and you’re aggravating your vestibular system.
I’m not an expert, but that’s what has been told to me. When I do my exercises (mine are different from yours), I do feel a little off from them, but the nausea and exacerbated symptoms happen all day.
Are you taking any preventative meds? It sounds as tho your visual problems are still quite bad. Before I was diagnosed I saw a neuro physiotherapist who gave me the VRT exercises to do - unfortunately they made me much worse. When I eventually saw my neurologist he advised no VRT until I was stable.
Personally I’m very dubious of the benefits of VRT for MAV.
My logic is that the migraine is causing the vestibular symptoms and trying to “compensate” for something that is fluctuating (i.e. the migraine) is pointless. I can only see that VRT would work if there is some physical (and constant) damage to the vestibular system that you could then learn to adapt to. If VRT did work for migraine then when the migraine symptoms stop you would need to re-compensate again back to your old normal condition.
I have found however that general aerobic and physical exercise is very beneficial, it seems to reduce the headache symptoms directly as well as helping with mood and reducing stress and anxiety.
Have you tried any migraine meds yet?
Thanks for your replies
I have no medication this is for two reasons 1. I have many severe reactions / intolerances to medication and have developed a severe phobia to any medication. 2. I am told my vestibular system need to re-compensate.
The VRT was ‘prescribed’ following an apt with a neuro -olologist.
Since my last post I have had peri orbital cellulitis following an eye infection where I was unable to do VRT I am now about to start again.
The visual vertigo / MAV is driving me nuts. I do not get a severe headache more pain / ache over my eyebrow, but they still tell me it is MAV.
Interestingly and alarmingly I went to dinner at a friends over the w/e and she made crepe suzette and used Grand Mariner in the liquid. I usually avoid alcohol but thought this would be OK but about 1/2 hour later I suffered severe dizziness just like I was drunk. Have any of you experienced this??
I am getting very depressed at the moment as I feel I am going backwards - will this ever end?
Bad luck about your reaction to the Grand Marnier! I would love a sip but daren’t! Dark chocolate gives me a similar swift reaction. I was very reluctant to trial any meds when I first got MAV as I have severe reaction to any oipoids, stemetil and a few other things like sulphur & garlic.
In the end after being bedridden for six months and after being on a strict migraine diet, etc I decided that I didn’t want to live like this for the rest of my life! I decided the only way was to try medication. I’m very med sensitive and have intolerances to foods/meds etc so am very watchful with what I eat and any side effects of medication. Any med I try I start off with very low doses and creep up slowly. Often I get the compounding chemist to make up a low dose if it can’t be provided on a normal script.
I’ve tried quite a few meds - some have helped, some haven’t. Some have had side effects which I haven’t been able to tolerate but along the way over the last four years I have gradually improved and am now able to lead a reasonable lifestyle, as long as I watch my diet, stress levels and keep regular sleep patterns.
From my perspective, looking back at the last four years, the things that have helped most have been educating myself about Vestibular Migraine/MAV, plus the support of the wonderful people on this forum, and a Neurologist who is an expert in diagnosing & treating MAV. This support gave me the courage to keep on with the med trials when I often felt like giving up and eventually ( even though I’m not 100% by any means) I feel I’ve come through a huge struggle.
Decisions about how to ‘move forward’’ are hard to make, especially when you aren’t feeling well and the brain is ‘foggy’. I hope you have a good Neurologist who is understanding and easy to talk to.