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Eyes don’t keep up with my brain

Tried wraparound sunglasses, the ones with sides, not face hugging goggles (thats last resort). It could well be objects passing through your peripheral vision causing some of the problem. You really need peripheral vision for balance particularly when MAV unstable. This is another symptom that will pass. I used to get it alot but not now. Helen

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Late response bit would like to add my 2 cents. I have had substantial issues with VOR (see below). This gives me the feeling you describe. It makes it even a bit painful to scan back and forth for instance looking for something on grocery shelves or driving.

(From https://www.britannica.com)

Vestibulo-ocular reflex (VOR), eye movement that functions to stabilize gaze by countering movement of the head. In VOR the semicircular canals of the inner ear measure rotation of the head and provide a signal for the oculomotor nuclei of the brainstem, which innervate the eye muscles. The muscles counter-rotate the eyes in such a way that a rightward head rotation causes an equal leftward rotation of both eyes, with the result that gaze direction stays stationary.

VOR works in conjunction with the optokinetic reflex (OKR), which is a feedback mechanism that ensures that the eye moves in the same direction and at almost the same speed as an image. Together, VOR and OKR keep the image stationary on the retina, with VOR compensating for fast movements and OKR for slower ones.

My docs tested this with a vHIT (video head impulse test) which showed severe weakness on the left side. Unfortunately I don’t think doctors appreciate how much this affects your life. It won’t kill you so I just don’t think there is much focus on fixing issues causing it. My opinion is that drugs may help you tolerate this bit i am skeptical they can fix it. I am probably in the minority on this forum but I feel the vertigo related issues from a physical problem with your vestibular system causes the migraine symptoms as your brain tries to deal with bad signals from one side. And the VOR seems an autonomous function that your brain is not normally involved in causing it to struggle

Anyway that’s my opinion for what it’s worth

I’ll add that I am much better at this point 2.5 years from my last attack bit still have balance issues and VOR issues. I tried lots of drugs but found no relief from vertigo related symptoms like VOR issues or from migraine related symptoms (although many on this forum have had relief from migraine symptoms it seems)

What I feel has helped is lower salt diet, and triampterene/hctz (diuretic) to help avoid attacks. I drink lots of water and exercise without pushing too hard. I also carry valium with me at all times and take this if I feel an attack coming on.

Good luck

Dave

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Thanks so much for the reply Dave , I would actually massively agree with this . Oddly enough since I was young and not many issues with mav I had something with my VOR think in my notes is says something about saccades but I saw a functional neuro who said my VOR on my left side was very weak.

However my issue is before this relapse I had that issue and I was functioning absolutely fine and no mav or symptoms . So I am unsure how much it’s playing s part now . I am very sure it doesn’t help.

I have seen many eye doctors each saying my vision is fine . However I also get this surreal feeling like I’m in a dream and my eyes can’t focus this seems more a migraine symptoms however I am yet to find a drug or dose that’s relieved it but I have seen many here who have so I guess I will keep trying .

2.5 years is a long time would you say your back to 80% these days , did none of the medication you tried help at all? Thank you for the help regardless I’m glad to hear your improved :slight_smile:

A

Yes to holding onto employment by threads! Since not many people suffer from this, hardly anyone knows what it’s like, so you try to put on a brave face whilst living in the fear that your symptoms will overwhelm you. That in itself fuels great anxiety which in turn exacerbates the symptoms.

I think that surreal symptom described above is part of dissociation or derealisation, whereupon the brain shuts off a bit of stimuli when it’s feeling overwhelmed.

Second that…holding onto employment by threads!!!
Jo x

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I was made redundant.

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I worked full time using 4 buses a d y…now im doing 4hrs a day and now use taxis and i still struggle…its hard
Jo x

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Yes this is what was explained to me question is when does it go away when the migraine is controlled ? I also think the head pressure and vision play a big part on this feeling

There’s excellent explanation on thewaltoncentre.nhs.uk website, under Patients Info Leaflets - “
‘M’ - nothing to do with James Bond and Judy Dench, no ‘M’ for Migraine. ‘Migraine: a comprehensive guide’. Which seems very reasonable to me. ‘Focal Brain Dysfunction’ they call it and it’s listed as such alongside aura’. So it’s ‘just’ another irritating symptom of the migraine. If that’s the case it will go away once the preventatives control the migraine. @Amylouise, when that might be is a bit like asking ‘how long is a bit of string’ I guess. I wouldn’t imagine there was any particular order in which symptoms disappear, though consensus may be the ‘imbalance’ and ‘tinnitus’ do seem most persistent. Helen

Can’t seem to see that link alas Helen. Intrigued.

I notice the word focal… Which is used in conjunction often with epilepsy. I’ve thought for a long time they’re related and the term Migralepsy has sometimes been bandied around. Focal also related to cortical spreading depression. The great Dr Surenthiran mentioned the brain stem going into spasm and this spasm spreading to parts in its near vicinity. This explains a lot, especially depersonalisation which is largely controlled by the limbic system and amygdala. Those two components lie at the top of the brain stem, hence untoward and inexplicable anxiety: but also occipital lobe is involved and the vestibular apparatus.

Thewaltoncentre.nhs.uk, second little tab from left. ‘Patient’, then about halfways down first column on left (grey) ‘patient info leaflets’ , then select Migraine under “M”, and in you should go, keep trying, it’s worth it!

Certainly sounds logical to me although I should think MAV is enough to justify totally understable anxiety any day in its own right as I’m sure you’d agree!
Helen

Thanks Helen il definatley have a look :slight_smile: actually funny you say that I was speaking with my partner about the episodes I had when I was a kid . Even tho episodic I ALWAYS had the imbalance inbetween for months on end and I remember having visual snow . All of this went away when I was symptom free so I hold hope that it will once again. I have read some scary stories online about people being stuck with distorted vision permantley which I hope won’t be the case
A

Here’s a link that worked for me:
https://www.thewaltoncentre.nhs.uk/

Patients >> Patient Information Leaflets (left-hand column) >> “Migraine—A Comprehensive Guide”

And then here’s the direct link to the leaflet that’s posted on the site:
https://www.thewaltoncentre.nhs.uk/uploadedfiles/leaflets/Migraine%20-%20A%20Comprehensive%20Guide.pdf

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that site is a bit messed up if you can’t deep link to the page!

Well, it is the NHS after all. Would you have expected anything less!

Actually what amazes me is somebody put an awful lot of work into those patient info leaflets. If the Migraine is one is anything to go by, it’s good, an explanation of alot of things for newbies. One wonders if/whether it’s ever shared with other health areas. Would seem sensible. Why reinvent the wheel. I was extremely pleased to see a similar leaflet, on Anxiety I think it was, down here in the South West when it had actually originated in Northumberland. After all it is the National Health Service supposedly. Helen

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Helen, yes I saw it eventually and it’s very good. Reassuring too because there can be a tendency to worry that there’s more to it than migraine; but this booklet calms the nerves.

Yes indeed. I thought so too. Dr Nicholas Silver is involved with the Walton Centre and he’s eminent in the field so guess he probably had involvement in Its production. It’s good for plp to have something reassuring to read about migraine. Guess some of the content is hypnosis but it seems pretty logical to me and if it stops plp worrying the pyschological impact of that will help them enormously. Helen

Hard to put a percentage if normal. I guess it’s all relative and over time it’s hard to remember how good you felt before. The biggest things for me are minimal migraine symptoms lately and improvement in imbalance and VOR type issues. I had some really good days and even some full weeks of good days, but these were not quite comparable to how I was before. They were also the result of lots of effort to feel better focusing always on doing the right things (sleeping well, minimizing stress, exercise in moderation, lots of water, eating well).

I would love get back to working again and more strenuous exercise/sport but not sure I could do that without relapse.

My biggest fear is another attack and I still have episodes of feeling an attack coming on but have been able to avoid so far. I believe my balance system has gotten worse after each attack and these have occurred at a time when I thought I was doing better and maybe pushed too hard. The last one put me in the hospital for 3 days and months of getting back to driving and walking without a cane. And 2.5 years later I’m doing better but still walk as if a bit drunk and still a little painful to drive or look for stuff on grocery shelves (scanning back and forth). Sold my A8 and driving the minivan because I lost enjoyment in driving.

But life is good and I am trying to make the best of what I have.

Thanks,
Dave

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