@Onandon03 i was doing some visual exercises before prism and then after, but since i went on holidays i stopped all. I will re start tomorrow all my routine and start the diet. Even maybe the prisms, but i am still unsure the eyes are causing the dizziness, si what is the point of wearing them.
You hit the nail on the head Helen…one to one VRT sessions may prove to be useful as the therapist can asess you with each visit. But i was given home excercises to do and no follow up appointment so how can they tell whether you are doing well or finding it too difficult
Was it the NHS gave you the exercises or aren’t you in UK? Initially I had same. Two exercises, told to do them so many times daily for, think, 2 months. Then to stop if they weren’t doing any good and NOT go back because there was nothing else therapist could do to help me. That’s just nonsense retrospectively. I paid, megabucks, privately for 6 months. Saw therapist one hour session one a month and each time given the ‘next’ exercises to add in. Told to phone her office any problems but she only ever return my querying calls once or twice on average even though I phoned maybe 10 times in total. I had one to one but all she kept saying was ‘power on, keep going, expect all sorts of strange things to happen, it will eventually push through’ and ‘I can get you better but it will take 6 months of hard work’ - for me, she meant, doing an hour a day everyday irrespective of how ill. Before the 6 months were up I collapsed completely unable to stand and spent weeks in bed. In fairness she was working to a diagnosis of as ENT said ‘you must have had labrynthitis at some time and forgot’, not MAV which came later.
You are right. You need a structured supervised programme to get anywhere with MAV. Plus perhaps lot of luck. Maybe time can achieve much the same less painfully.
From my exp VRT in UK Is still in its infancy. Still in nappies. London has some state of the art facilities but the only person I know who went there got equally sick doing the latest Virtual Reality Version, every week under close supervision.
Why? To straighten out the problem without prisms?
Question: were you better away on hols (without specs, exercises etc) allowing for the travelling etc.
Wouldn’t it be better to reintroduce things one by one? To try to establish what’s causing what?
Yes Helem i had sessions on the NHS i live in the Uk…total waste of time…they made me ill
Re my situation as you may have noted from my letters above mine isn’t MAV but what I can only term as a knackered vestibular system although no rhyme or reason for it. Whilst not spinning currently if I move my head up and down or side to side (worse) everything moves like my brain is trying to catch up with my eyes. At its best one side is better than the other and that I can cope with. However the last few days both sides have been as bad as each other and my head seems like one of those nodding dogs in the back of a car!! The funny thing is if I spin myself round I won’t fall over but one way is far calmer than the other.
Early VRT just didn’t work. I was asked to put a cross on a wall and concentrate on that and move my head from side to side and up and down for a minute three times a day, but move my head whilst that cross was in focus. I was then told to make the background more “busy” and build things up. The problem is that cross has “never” been in focus it just moves so I can never see an improvement. I also was asked to stand on a wobble board or similar for a minute with my eyes closed. I couldn’t even do that when my balance was ok!!!
I thought last week maybe the air pressure may have made things worse as it’s been very humid but I doubt that’s the cause. VRT is a possibility but it didn’t set me back when I was doing them three months ago so why now? That’s the frustrating thing with this there just isn’t any rhyme or reason, no obvious triggers and it’s very frustrating when you go to bed find and wake up wobbly.
Wondering if they can just remove my balance organs and be done with it!!!
No sorry hadn’t read yr complete story. Sounds pretty rough. Sympathies. You really do need to get some answers. I’m no medic just a long term MAV sufferer. IMHO you need either answers and/or some sort of management to give you a better quality of life. My take on this would be.
In yr original post you say you are deaf. My brother is deaf. Don’t know anything about it but understand it can affect your balance. Is there a chance any of the deaf charities could give you any guidance, might be worth a look.
You said you’d tried meds like amitriptyline without success. Were these a migraine preventative? Worth trying another one. Research preventatives. There are lots for yr GP to choose from depending on yr medical history. They can take months to work but right med at right strength of drug will stop dizziness if migraine is causing that dizziness. That will surely improve quality of life.
With regard to early VRT not ‘working’ I’ve had experience of this because I wear specialised specs so similar would apply. To work target must be in sharp focus throughout with/without specs if worn. If you haven’t got it in constant focus either you may need specs or you have a defective VOR - Vestibular Ocular Reflex which indicates balance problems.
For balance you need;- eyes, ears and proprioception (feet, skin, various joints throughout the body etc). These three send info to the brain for processing to maintain your balance. You need two out of the three fully functioning to stand. You have damage to your ear. They take your feet off the firm earth and then take your eyes out of the equation. It would be amazing if anybody could stand with that little info getting to the brain.
The rhyme or reason for you reacting to this current VRT attempt. MAV is very unpredictable. It changes constantly. MAV is wound up periodically by triggers and these tend to be culmulative over days. Your MAV’s a bit more sensitive than usual. Off you go.
Don’t tempt them. They’d probably want to do it. (Joke I know).
they gave me the vision exercises since day one of vrt, because that would improve the dizzines, also the standing in a cushion / foam with eyes open and then closed and I have to say i am pretty good at it, i have increased the difficulty myself. After the eye diagnoses they made me do the exercises with the specs, although eye doctor told me to hold on vision therapy.
I had very good moments throughout the day during holidays, and others very crappy but i would say overall ok. Ah one thing, i ventures and drank beer and white wine and I felt great after, I guess is the same effect as taking benzo (which i have not tried).
I will start the diet right now and will see the vr therapist on wednesday, i think is my last session for now, there is not much to do I guess… I also have a follow up with the eye doctor on Friday but not sure if I should go or not… My eye diagnosis confuses me.
I’d go see the eye doctor if I were you. Why not.
Why? What’s confusing about it pls. If you cannot believe a diagnosis and it’s not meaningful to you it’s of little use to you at all I’ve discovered myself.
ok will do and ask all my questions and see what happens…
Interesting that… I don’t drink much these days but at one of my worst points I remember going out with friends and drinking a fair bit and the dizziness if anything was better when I was walking home!!! Maybe I should ask the doctor to prescribe me brandy!!
I think alcohol has a temporary, comforting, affect but it will potentially set you back. I almost always get worse tinnitus immediately after or the morning after which is telling. The level of tinnitus is always a good indicator imho of how healthy things are. It is also not a healthy habit. It’s a poison after all.
You are probably right. My tinnitus has been pretty stable during this last set back. I usually get a rumbling when a bad turn is imminent but nothing bar the permanent hissing in my right ear. The other interesting difference is that when things turn bad the spinning when looking over my left shoulder is immense with right shoulder calm and the middle somewhere between the two. This week both looking right and looking left have been ok, it’s the middle which is the problem. So once again no rhyme or reason. Feel a bit calmer today but didn’t do any VRT for the last two days.
haha i know, we were on holidays and I enjoyed the conversations much better with the alcohol. But I guess yes, in the long run, not a good habit for our condition.
just remembered why i dont want to go see the eye doctor… because it is expensive!! i have spent so much money even when I have insurance, it is ridiculous. I was thinking while
doing the groceries for the migraine diet that this condition is for rich people!!
I see. So it’s your purse that aches, not your eyes at the moment. That figures. Migraine diet going to prove expensive is it. Presumably it’s only short term until you establish permanent triggers. Hope so for sake of yr bank balance. Migraine diet - well any diet long-term can be injurious to general health. Most food restrictions are. With migraine diet if it proves long-term watch for lack of calcium as dairy’s off and cheese is strong calcium source. My migraine specialist neuro wanted me to have a balanced healthy diet that’s all. Cheaper, too I guess.
Don’t know yr health finance system but I’ve been reading up on VH. The most detailed list of possible symptoms covered 2 A4 sheets and must have included every symptom known to ever have existed with any vestibular problem ever. I should think nearly everybody on earth could have reached the conclusion they had VH having read that list. I’m very cynical. Elsewhere I read 2/3 the population has VH! If that were the case, there could be an awful lot of very wealthy eye doctors about. Dr Hain is quoted as saying 1% of the population has MAV. Perhaps you need a second opinion on your eyes from a reliable source. Here I’d want to see an eye specialist consultant at a hospital but must say again I have no way of understanding yr health care system. It’s probably very different from mine here.
Agreed. Only recently noticed this myself. If my balance is pretty good the tinnitus is not discernible. It ramps up almost instantly if I realky challenge my balance ie go outside walking whilst feeling rough for example.
Try fresh ginger root. Or, in powder form. I use powder in my water. Goes away within minutes!!!
This is once again very different compared to other stages in this saga. Woke up this morning a tad wobbly. Around 11 o clock at work something just clicked and I was fine, as well as I have been for some time, very steady. Then around 5 I was in a very hot room during a meeting, walked out of the room and was wobbly with bad motion intolerance again and am still that way at 11.30 in the evening. So it seems a few hours ok then a few hours bad and then a few hours ok again followed by bad. No trigger or anything just extreme frustration. No idea what is going on bar my body and balance organs seemingly battling out World War 3 and I have no idea who is going to win!!!
Well this is really strange. Went to try and play golf mid week but felt like I would just miss the ball and fall over. First few holes were really dodgy but after a while bizarrely I started to actually feel ok. By the end of the game and when I returned home I actually felt great, steadiest I had felt for years and my motion intolerance was incredibly steady. Went to bed full of hope and woke up all over the place and have been that way since. Anyone at all got any idea on what is going on here? How can a game of golf help and yet falling asleep make you worse?!