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  • Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

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    Old 08-02-2008, 01:10 AM   #1
    Tesss
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    Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi there
    I used to be a regular poster on this board, some of the long timers might remember me. I had VN in October 2004 (sudden onset with acute vertigo and very sick afterwards for a long time, lots of decomp). Since then I have had 2 lots of VRT, several rounds of tests, visits to various ENTs and a Neurologist and I ended up at Charing Cross this week to see a Neuro-otologist. Diagnosis of visual vertigo, however that's triggering MAV, which is triggering more dizziness etc. Treatment is propanolol, when the migraines are under control I'll start VRT to help with the visual vertigo. Neuro-oto rekcons prognosis is good, however it'll take 6-9 months to see improvement, and he was frank and said that it may not go completely.

    I was looking through old posts for info on visual vertigo (I'm sure there were old posts talking about it) and saw that Dizzy_Dave had the same diagnosis - wondered how he has got on, or if anyone else has the same?
    Best Wishes
    Tesss

     
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    Old 08-02-2008, 03:19 AM   #2
    dollydd
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi Tesss
    like you I had sudden onset acute vertigo, violent vomiting for hours etc., and several bad decomp episodes. Lots of time wasting with ENT but finally got to the the neuro-otologists at the National Neurology Hospital in Queens Square in Dec 07 and got vn diagnosis. At my 6 month check in June they did a posturography test which showed my balance now within normal range but visual scores well below normal and they called this visual vertigo. They say the visual element is often the last to recover, you get to a certain stage then hit a plateau and then it can drag on for years. They have also mentioned that it may not be possible to talk about complete recovery but they say they can get me 99% ok 99% of the time. (Iwould say I am now 100% 99% of the time) At no time has anyone suggested I have associated MAV and I am being treated purely as a slow compensator because of the visual issues, no medications. Although I had been doing basic vrt since March 07 they put me in for a session with the vestibular therapist and she has given me customized exercises for gaze stabilization, much more difficult than I had been doing previously and I have improved a lot in the 6 weeks I have been doing them. I am seeing her again in October then my consultant will see me again in Dec.

    I notice you say you did 2 lots of VRT. This implies you stopped after a while. The advice I am getting from my docs is not to stop and I have been doing some vrt now for 15 months. I got a lot of improvement right away, then it seemed to level out but I am convinced that there is slow, gradual improvement so I shall keep going. My doc says that the vestibular injury means that I will always be a bit fragile in the balance department so keeping the system as fit for purpose as possible is the best way of staying stable.
    Makes sense to me.

     
    Old 08-02-2008, 12:49 PM   #3
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi Dolly
    Thanks for the reply - I found it incredibly useful. I've never heard that information before about the visual vertigo being the last to go and often hanging around for a long time. I'm also pleased to hear about the recovery estimates they gave you and that you are actually feeling really well -gives me a lot of hope.

    Interesting about the vrt and it's good to hear it became more difficult - I have found it very easy and that has confused the last person I did vrt with - my balance is very good, she said there was no use me continuing the exercises because they weren't benefitting me really. It does make sense what you say about continuing the vrt however if it is doing some good - and when I get something tailored to me I will continue them.

    What changes are you noticing - I find it difficult to drive, exercising on a treadmill etc - any improvement in these sorts of things?

    Best wishes
    Tesss

     
    Old 08-03-2008, 04:31 AM   #4
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi Tesss
    for me driving, which I do a lot of, has never given me a problem, but getting out of the car after a long drive was, it could take me a while before I could walk in a straight line. Same after getting off a train. That is all resolved now and so is the feeling of walking on a rocking boat. I am now fine in the dark and also I can walk directly into the sun - for the first 18 months or so I couldn't do that at all, if I found myself having to walk with the sun directly in my eyes I had to stop, turn around and find another way. As soon as I couldn't see I couldn't balance. Then slowly I noticed that was getting less of a problem and I reasoned that my vestibular system was functioning better so I was less dependent on my eyes. Now I am fine, even running straight into the sun, is no problem. So for me the last really troublesome thing has been this eye issue. My tests in Dec showed right eye dominance and left eye catch up and I just had the weird feeling most of the time that my eyes were off doing different things. But this has really improved since starting this latest round of vrt, I can really notice the difference on the computer, I can do a whole day now without a problem, before I could only do short burst then I would have to stop for a rest.

    Apparently, according to my docs some people with vn just become overly dependent on vision for balance and it is hard to get the vestibular ocular reflex back in sync. We sound as though we are in a similar phase but you are being told there is mav involved and with me they are convinced it isn't. I wonder if Charing Cross do the same posturography test that I had at the National, because it was this that showed the visual problem. They put me in a cubicle with rounded walls with a painted landscape scene. They could make the walls move in and out and tilt them and the floor also moved. They ran a series of tests in different configurations and the one in which I had to stand still with the floor stable but with the walls moving in and out gave my worst scores. They said it showed my eyes weren't coping well with the movement but when the test was repeated but with the floor moving as well, I was within normal range, I reacted normally and adjusted for the moving floor. What was interesting was that each test was run 3 times with a short rest between each one, and on every test, even the below normal one, the second run had a better result than the first and the third was better than the second, so I got better with practice. I guess that is why vrt works.
    hope you get some progress

     
    Old 08-11-2008, 09:25 AM   #5
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    Smile Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi Tess, Dolly and all,

    Dolly, I read your replies with great interest, as you describe many of the symptoms and hardships that I have been dealing with for years.

    I seem to be "stuck" with the visual problems relating to my balance after so long.

    Can you please tell me about the onset of your symptoms, what (if you know) triggered them, and talk a little more about ALL the testing that led up to this diagnosis conclusion?

    Thank you and take care.

     
    Old 08-12-2008, 04:27 AM   #6
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi Wow
    I started in Jan 06 with sudden onset spinning vertigo. The first thing I noticed was I couldnít control my eyes, they were moving horizontally side to side and when I tried to get up from my desk I fell over as the room wizzed around, vomiting so violent I was taken to ER. Stabilised after about 5 hours and sent home. No diagnosis given but a nurse mentioned to me that maybe I had an ear infection. I was very tired for several days but just got on with things then it happened again two weeks later and again another four weeks later. By this time I was feeling very unwell, spending a lot of time in bed and at the same time I was diagnosed with acute sinusitis. I now think that this was all part of the virus that caused the attack and I read in one review paper that sinusitis is present in up to 50% of vn patients. The same paper also stated that recurrent attacks of vertigo can happen over a period of months and even years and up to 43% of vn patients suffer from this multiple attack variety, although it is more common in younger patients (that excludes me) or those who have suffered a more severe initial attack (that includes me). Repeat attacks tend to get shorter and less severe and that has been my experience and also apparently the multiple attack variety is less likely if the patient had a clear history of a preceding respiratory tract infection and as far as Iím concerned I was quite well at the time of the first attack, I didnít have a cold or anything.

    My gp then decided I should see a specialist and unfortunately, I think because of the sinusitis, I got into the ENT system. Big mistake as they were more interested in the sinus side of things and ignored the fact that I couldnít walk in a straight line and felt like I was on a rocking boat all the time. No tests were run and I just got prescribed a nasal spray! However, I take a lot of exercise and I was struggling to keep as active as I could so I think I was doing my own kind of vrt without knowing it and during 2006 I could tell I was slowly improving balance-wise and I started to feel somewhat better although the sinus thing was proving a real problem. In the autumn of 2006 I had a follow-up with the consultant who mentioned maybe I had had labs. Then out of the blue in Jan 07 I had a fourth spinning episode, again had to go to ER until the nausea passed. This attack really hammered my balance and I was back to square one.

    The same specialist now ordered an ECOG test, showed raised pressure in the right ear so he started to talk about Menieres, ignoring the fact that repeated hearing tests showed no loss of low tones and everybody telling what good hearing I have for my age. I now know that this doctor lumps all dizzy conditions under Menieres Ďsyndromeí and never does the other tests. He did however send me for vrt so after 15 months I did finally get to start the right treatment for vn and within 4 weeks I had really improved, particularly the rocking floor problem. But as the year went on I still wasnít happy with the way I felt, I just felt I was always on the edge of another attack, and I had started to have a very strong feeling that my eyes werenít working together and after having a near miss in November I asked my gp to refer me to a neuro-otologist. They ran all the tests, ENG, caloric, Hallpike, Romberg, Halmaygi and gave me a dx of left vestibular neuritis and peripheral vestibular tone asymmetry. Interestingly, they donít perform ECOGs as they said they give a lot of false positives. They told me to keep going with the vrt until they saw me again in June. It was at this follow-up that they ran the posturography test I described before that showed the low visual scores and the report diagnosed visual vertigo, which they said is a common leftover from vn, particularly if the patient has become very eye-dependent for balance or if the vestibular system has been severely damaged. So they sent me to their vestibular therapist for customized vrt and that is what I am doing now. I still do a lot of balance work and I think my balance is now 100% and the eyes are getting better.

    Things started to make even more sense last week when I had an eye test. I was discussing the visual stuff with my optician and she said perhaps my left-eye amblyopia was a contributing factor. Didnít even know I had it but now I have looked it up it all falls into place. So when I see my therapist again in 8 weeks maybe she will be able to make changes to the eye exercises to help. Strange because I am a great believer in listening to our bodies when things go wrong and when my eyes symptoms were at their worst I nearly went out and bought an eye patch Ė I just instinctively felt it would help and on the first web site I found on amblyopia, there it is, eye patch is one way to treat.

    I now consider myself recovered but I do accept there may always be glitches to cope with, so I shall just keep plugging away with the vrt and keep as fit as possible. I realise I have been very lucky to find these amazing neuro-otologists in London - I think having confidence in your doc is vital with this condition and I believe 100% they have got the diagnosis right. And although I have been through patches of very high anxiety levels I have managed to get through them without medication so I am not struggling with that problem as well. All I have taken is Stemetil for a few days after an attack then stopped. I still have the original pack they gave me in Jan 06 so I guess it is now out of date.
    Hope that all makes sense
    dolly

     
    Old 08-15-2008, 08:10 AM   #7
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    What do you mean by "visual vertigo"? Thanks

    Rich

     
    Old 08-16-2008, 03:15 AM   #8
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Rich
    it means that any imbalance/dizziness is due to incorrect visual input to the brain, not vestibular malfunction. What I have particularly noticed is that as my balance improved and I now think it is rock solid, the lack of eye co-ordination became more apparent, it didn't bother me at all when I first got sick, I was so unsteady from the vestibular injury. The customized gaze exercises that I have been doing for the last 8 weeks have transformed me and I think I am now nearly 100% with the vision.

     
    Old 08-16-2008, 08:57 AM   #9
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    What were your symptoms of visual vertigo??

    My main symptom is that the world is constantly shifting and moving. It doesn't hold still. VERY annoying. It improves if I walk or drive, but immediately gets worse again if I stop or stand still. Other than that, I have lots of other visual sensations as well. Everything in the world appears to jump, shake, vibrate, shimmer, the world appears to "glow", it's slightly "pixelated", everything appears slightly "hazy" when I am still, and I have bad light sensitivity. I'm diagnosed with vestibular migraine, but all my problems are visual. I am worse in crowded situations and worse when I have to perform visual precision tasks that require concentration.

    Any resemblence to yours??

    Rich

     
    Old 08-17-2008, 08:01 AM   #10
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    No, I haven't had any of the problems you describe, the world looks quite stable. My main problem has been when I have moved my head position to look at something or just needed to move my eyes, e.g. scanning a shelf in the supermarket, I had the very strong feeling that my eyes were moving independently of each other, there was no syncronisation.

     
    Old 08-25-2008, 03:19 AM   #11
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    hello dolly just read with great interest your post ,i have been experiencing these dizzy episodes for the last six weeks or more they come on very quickly but not always when i move my head side to side quickly i can be on my pc at work or just sat watching tv or even looking from one particular thing to another i seem to have no control over my eye movement these episodes only last about 5mins from begining to end but i always feel extremely tired i visited the dr and he told me it was the fluid in my inner ear and prescribed stemitil ,i dont really like taking medication for anything maybe a paracetamol now and again for migraine which i only have maybe twice a month ,what are the eye exercises you do i wonder if they may help me .

     
    Old 08-25-2008, 06:20 AM   #12
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Jules--

    Hi! Just wanted to let you know that irf you have the migraine issue then that could be causing your dizziness as well. The main treatment for that is migraine diet/exercise/preventive meds. (See book: Heal Your Headache, recommened by many on this board.)

    Good luck!

    Violet

     
    Old 08-25-2008, 09:51 AM   #13
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    Hi Jules
    I think you need to see a specialist in dizzy issues, ask your dr to refer you to a neuro-otologist. There is some dispute about whether vrt exercises are appropriate for people who have a migraine issue so I don't think it a good idea for you to try exercises that may not be appropriate for you. Your involuntary eye movement sounds like nystagmus but get to the root cause first and then the treatment will appropriate. Stemetil shouldn't be taken long term, it is really only for the acute phase of vertigo & dizziness. It is a vestibular suppressant so can delay the process of compensation.
    good luck

     
    Old 08-31-2008, 02:38 AM   #14
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    just like to say thanks dolly and violet for your feedback,havent felt to bad this week no dizzy dos this week although have been looking after my hubby with bad asthma attack this week so maybe took my mind off it for a while ,hope you are both doing ok ,keep giving the advice its much appreciated nice to know there are people out there to talk to with simalar probs. thanks , jules x

     
    Old 08-31-2008, 03:39 PM   #15
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    Re: Dizzy_Dave or anyone diagnosed with Visual Vertigo + MAV?

    You say that you had the strong feeling that your eyes were moving "independently from each other" but what exactly does that entail? How would that look if we were experiencing that and how is that diagnosed? Is your VOR intact? Did your neuro do the quick head thrusts to see if your eyes lock position?? Mine are fine. But my visual symptoms are INSANE, and keep me in constant disability. I call MY symptoms visual vertigo as I have tunnel vision, the world constantly moves, shifts, glows, vibrates, shimmers, shakes, I have weird vibration feelings in my head, and I get headaches if I push myself too much. I have been living this way 8 months now and I can't do it anymore. Nothing is working. Had all the testing. diagnosed with migraine. The migraine drugs don't work

    Rich

     
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