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Eyes don’t keep up with my brain


#41

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.


#42

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.


#43

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


#44

I was made redundant.


#45

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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#46

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


#47

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


#48

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


#49

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.


#50

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


#51

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


#52

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


#53

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


#54

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


#55

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.


#56

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


#57

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


#58

Do you do VRT for eyes?


#59

I do some therapy exercises but have not had any big improvements from them.

I found this description of VOR exercises.

These are similar to the ones I have done.

Maybe these can help you.

Best Regards
Dave


#60

My PT assigned another exercise in addition to gaze stabilization. She noticed that when I stoped my eyes after tracking an object that my eyes continued to move around trying to focus.
They were really sloppy. So the exercise to correct it goes like this:

Put your thumbs up in front of you at arms length and about 1 foot apart or so (adjust as needed for comfort). turn your head and focus your eyes on your right thumb. Move your eyes to focus on the left while keeping your head positioned toward the right thumb. Then move your head toward the left thumb while continuing to focus on the left thumb. When your head reaches the left thumb, stop for a second, then start the same process towards your right thumb. So move your eyes toward your right thumb while keeping your head positioned at your left… Perform for about 1minute per day.

It really helped correct my sloppy eyes jumping around all the time. Those jumpy eyes were causing so much anxiety for me. Couldn’t really do much on a computer, kept jumping around. Of course, be careful if it makes you too dizzy. This one can be especially difficult for people who are really motion sensitive with visual vertigo.