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Ongoing vertigo issues by a newbie


#61

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)


#62

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.


#63

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?
Good luck.


#64

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?!!!?!


#65

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.


#66

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.


#67

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.


#68

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 :grin:


#69

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!!! :laughing:

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!!!

001.pdf (942.9 KB)
002.pdf (953.4 KB)


#70

Hi all,

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.


#71

So glad you are improving Chris!!


#72

Thanks, a lot due to you with your suggestion of the Royal London ENT I think… So many thanks.


#73

@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.