if it is migraine induced the alcohol (like caffeine) can temporarily suppress or change symptoms and brain function. but i usually ‘feel it’ MAV-wise 2 days after drinking (not next day like a hangover)
Apologies for the duplicate post the same as my other thread…
Well I must thank you Turnitaround after I finally got to see a whole variety of experts at your suggestion of the Royal National London ENT Hospital today where I spent a good two and a half hours having a variety of tests and consultations, a very well oiled place indeed.
The Consultant says it’s not Menieres (good news) and doesn’t agree with the last consultants belief that it could be MAV. There is no definite diagnosis but she had a suspicion it could be something to do with Toxoplasmosis. Not sure if I mentioned it before but my optician a few years ago spotted this scar at the back of my eye which by all accounts was millimetres away from making me blind in that eye. I personally had no idea about Toxoplasmosis (I never have had cats) but he suggested that possibly I could have picked up the infection as a child which could be true considering I didn’t lose my hearing unto I was two.
So the consultant today said that there could be scarring within my ears as well. Obviously my first vertigo episodes were back when I was 21 and I am now 49 with vertigo attacks at 21, 38 and then two years ago this latest saga started so I asked that question as to why the long gaps and apparently Toxoplasmosis can lie dormant and then come to the fore. She isn’t 100% sure but is going to ask my GP for some blood tests to look for something else, although she didn’t tell me what!! She also thinks I may possibly have Secondary Hydrops although unsure as to how. Whilst my vertigo is a lot better it’s the motion intolerance I suffer with and the tests clearly showed that my eye movement is slightly behind my brain when moving my head so it’s that delay that gives the intolerance. The balance mechanism is fairly bad on both sides but fortunately not totally defunct so there is something to work with.
The bad news is that in my case drugs won’t help. The good news (I hope) is that the consultant thinks some vestibular rehabilitation may well improve things so I am being booked in to see a physiotherapist for a couple of sessions in London to start with and then hopefully they can transfer me to somewhere more local and I also will have a follow up with the consultant. Unfortunately the waiting list is around 6 months so all this is unfortunately still going to affect my search for work and sadly no pill is going to solve things overnight but I didn’t really think that anyway. Fortunately my hearing (or what’s left of it) seems stable so hopefully it won’t be progressive but I should be prepared for future attacks every few years like I have had up until now, but maybe the blood tests might show something up that can be treated with medication.
So no miracle cures but at least I can rule things out and now at least have a sympathetic consultant who seems determined to get to the bottom of it, so thanks again Turnitaround for pointing me in the right direction.
Is it 6 month wait for the vestibular rehab? I had some private vrt sessions (in Kent) which were £35 per session. Not free, but not massively expensive. Better than waiting 6 months though?
Thank you, that’s not bad actually. I’ll wait and see how long the wait is when the appointment comes through and might look at private if it’s too long. What do they do, is it standing on one leg with your eyes closed or something?!!!?!
VRT is a bit of a money pit if you go privately. It would be easy if you can get a complete set of all the exercises and then just work on them yourself at your own pace.
Adding to what James said youtube has a lot of VRT videos.
Good long walks looking at your phone is excellent VRT. You are not using you vision to balance.
But don’t fall into the canal!
Haha. Knew looking at phone when walking was useful for something. Yes it makes sense! Although the brain also needs to pick up correlation between the senses so some time spent NOT looking at your phone is important too.
Thanks guys, I’ll look into VRT videos, but looking at my phone whilst walking, do I “have” to become one of those people, I thought my balance had improved by having to avoid those people as they all crowd the pavement whilst not looking where they are going!!! Evolution will make he human race will end up with small thumbs, crooked necks and dodgy eyes
Hi all just an update. I have attached a letter from my consultant on this post and if anyone has any experience of medical jargon I would appreciate it if a brief explanation can be given in Layman’s Terms because even my GP doesn’t seem to have the foggiest idea of what is being said!!!
The good news is that I finally nailed down a job as a TA at an SEN School which is great because it so far doesn’t effect my vertigo too much. The bad news is that this week I have gone down with a really awful cold (the perils of working in a school) and after a better few months with the vertigo the motion intolerance I have has been really bad to the end of this week and I thought a full blown attack was on its way which I have emailed my consultant about because I find it more than coincidental that my “dizziness” has got worse with severe congestion around the eyes, nose and possibly ears!!
I hope this info will prove a lightbulb moment for her because looking at the letter it doesn’t seem that she has any diagnosis which in turn isn’t too positive for any treatment. The bloods she requested have come back negative for toxoplasmosis but other results were would you believe “lost in transit” so I have to have another blood test next week.
I think my days as driving for a living are way gone though because I this winter have really noticed that I just can’t derive at night anymore. The bumps in the road and headlights coming the other way just are too much with the motion intolerance and whilst daylight and twilight are fine I just won’t go out of town at night.
It’s frustrating because I think I might be stuck with this motion thing unless the vestibular rehab works which I have in a couple of months. I along with pretty much everyone on here just wishes popping a pill would do the trick!!!
Just an update after seeing an old ENT specialist at my local hospital on an 18 month follow up. He agreed with the consultant from London that indeed I have Bilateral Vestibular Hypo function as per the letter above, and he confirmed that Oscillopsia is present. So no MAV or Meniere’s.
No drugs will work but he said that vestibular rehab should help and as time goes on my symptoms will improve (until the next relapse I guess!!). No reason as to why this happens or what the cause is but he wouldn’t be surprised if it occurred when I lost my hearing as a two year old. Bit of a bugger really as maybe I could have been a professional footballer after all if my balance hadn’t been knackered as a two year old!!! Although maybe I should be grateful that I managed to play so many sports in my younger days at all, and at least I manage to get on the golf course now although not in this weather!!
Still the odd spin from time to time that hits out of the blue but 95% better than even a year ago so the motion intolerance (oscillopsia) is really the only thing that is an issue but can’t complain considering many of you on here are still suffering badly.
So just a thank you for all your help and support especially to those who commented on this thread, it is much appreciated.
So glad you are improving Chris!!
Thanks, a lot due to you with your suggestion of the Royal London ENT I think… So many thanks.
@NewbieChris Glad to hear you found a diagnosis, sorry there’s no medicine treatment for it though. I hope the VRT works for you. I would hate to be stuck with the motion intolerance part, it’s one of the worst and most bothersome symptoms for me.
And thanks so much for your reply back in November, I didn’t realize you replied and didn’t see it until now. Interesting about the prism glasses. My ophthalmologist says my vision is fine and I wouldn’t need prism glasses. He believed the treatment I heard about was a scam type thing, but I’m honestly not sure. But, I don’t see me being able to get used to glasses at the moment so I’m not pursuing it for the time being. And I can no longer handle the 1 hr and 15 minute drive to the nearest center that uses the prisms to help with dizziness and tons of MAV symptoms.
Try ginger. Ginger has been my #1 for a few years now. I’m a Licensed Massage Therapist and bikini competitor. I keep the ginger powder with me at all times! Or, you can make a ginger tea using fresh root ginger. Works wonders!
I might try the ginger as once again bam it’s come back again! Been pretty good for a few months and could cope with the motion intolerance but noticed a couple of wonky days last weekend then wallop woke up Thursday and I was very wobbly. Settled by evening but woke up again Friday and again my head felt light and spinny. Yesterday I woke up and was fine all day but today I am back to being lightheaded and spinny. Never known it to kick in over night and where usually these episodes diminish over minutes these are lasting hours if not all day and only settling for a couple of hours.
Not sure why although it could be that I had gone back to my VRT exercises. They weren’t working at all so gave up on them but had recently started them again so not sure if they have now made things worse. Just can’t believe it after a few decent months. Starting to lose hope that I’ll be rid of this devil ever again.
VRT made me ill…twice. i just cant cope with it. It made me bedridden once for days then worse for weeks after. But my neurologist still wants me to do it😠
Ginger is often great for indigestion and feeling of nausea caused by upset stomach but cant really imagine it’s going to do anything for MAV. What ever effect can ginger have on the workings of the brain or inner ear. The Duchess of Cambridge always suffers from an extreme form of morning sickness with each pregnancy; ginger did nothing for her. IMHO Chronic Neurological conditions need meds and correct management techniques. Not spices. Not decrying use of all such products. Know turmeric is successful in treating pain in arthritis and other inflammatory conditions.
Agree with @jojo65 every step of the way. VRT has most probably caused you to relapse. It has caused you to push a still unstable condition beyond its comfort zone. One VRT theory is the exercises should only make you a certain _n_percent more dizzy and should cease after a certain _n_amount of time, usually quoted at 10 to 30 minutes depending on reading source. If you push it further you do more harm than good. Once somebody gives me a definite formula on how to calculate these unknowns (and maybe if rivers start to run upstream) I might consider trying VRT again. Not before. I think the timing of the reintroduction of VRT is crucial for most people. It can be beneficial for sure but with MAVers the condition needs to be stable first otherwise it’s too much, too soon.
Neurologist did tell me need to keep fit and suggested walking outside daily. Guess provided you have been a regular, weights, swimming, cycling might be OK because you should be habituated. Best try tiny bit first, much like titrating the meds really, and see how it goes. Low and slow with MAV seems from my exp. to be the way to go. I know it takes more patience than most of us have. Tell me about it.
hi @Onandon03 i wonder if wearing prism/ vision fall in this category of mav need to under control? my vr therapist suggested i do vision therapy for the rockinng. so far none of the exercises she has given me have worked for it and i as i shared before i have no problems with balance…
As you know I’m no medic but I’d say the ‘rocking’ is dizziness which is a sign that you have a vestibular/balance problem. That doesn’t mean you fall over or lose the ability to stand, nor is it permanent. Could just be mixed messages from eyes, ears or whatever causing brain to get confused because it cant correctly interpret the info it receives. Perhaps you occasionally veer off to one side when walking out maybe?
Vision training is even more gruelling than VRT and could easily have same effect. It was the very first thing I tried long before I knew about MAV. Optician told me my eye condition was probably responsible for my dizziness and that vision training could put me right. I stuck it for maybe 3 weeks. It made the dizziness 10 times worse. I could never understand why an eye condition I was born with and which I hadn’t even known Had a name - thought it ‘just me’ - could suddenly start making me dizzy. Saw top eye surgeons etc, etc who all said that was most likely to the point of being virtually unknown. One even said my symptoms were much more ‘labyrinthine’ than anything else and sent me to ENT.
Retrospectively I find it hard to believe vision training could correct an inherent eye condition. Put eyes back to where they were pre a trauma, ie accident maybe if there wasn’t permanent damage caused by the trauma involved but change something one was born with. That’s more a miracle than training surely.
Vision is so closely hardwired to ears and balance attempting to alter it after years if habituation could certainly have great affect.
PS; do you do vision exercises with/without the specs on? Bearing in mind prisms distort out of their own axis.
Interesting even the much revered Dr S ‘condemned’ some VRT exercises given to one of his patients who had had the presence of mind to take them with her to show him. On this very forum. Makes me wonder how much the systems link up. How much neurologists study VRT. Guess it might work really well if conducted by a integrated/dedicated balance team maybe rather than stand alone.
I remember an enthusiastic, intelligent physiotherapist who very much impressed me with her skills and willingness to get involved. However when I asked her if I should continue doing Tai Chi even she replied ‘oh, yes Tai Chi is great for balance’ … slight pause … er… ‘What is it exactly? I’ve never seen any’.