Does anyone else have visual distortions?

[Hitension]

Hey guys,

I have been looking throughout the forums to see if anyone else has mentioned problems with visual distortions and whilst I am sure somebody must have (perhaps?) I can't find anything about it.

Aside from the fatigue (immediate or delayed) the biggest problem I have is with my vision. Ever since I first became ill I have had problems trying to look at things without my vision distorting. It is not a problem of focusing, everything is in focus but if i try and concentrate on an object my vision jerks in time with my pulse. It is as if swelling in my head is pushing against my eyes making it impossible to concentrate on single objects. When it is bearable, objects which i focus on only shift if i am looking out of the corner of my eyes. When it is bad, it is really bad and I literally can't look at anything because everything is moving.

The problem always gets worse if i do anything to speed up my heart rate. If my pulse is going faster then the objects i try to focus on jerk more quickly. As a result, even when I was feeling well enough to trying to do some sort of semi-exerting activity, as soon as i start, my vision starts jerking in time with my heart rate and this distorting effect gets worse and worse the longer I continue to do any activity until i have to stop. Has anyone else had a problem like this? if so, has anyone ever worked out how to stop it? I have found that the more run down I feel the worse it is, but resting for weeks/months never completely removes the problem. It always starts up again once I try being more active again.

I'm probably not doing a very good job of explaining this but it is such a weird symptom I find it hard to put into words, even after 14 years. Does anyone know what could possibly be the cause of this issue?

Thanks

 

[xchocoholic]

Maybe it's ocular ataxia? From 1990-2006, when I walked objects would appear to jump or float. Cfs onset was Jan 1990.

This symptom mostly went away when my ataxia, heavy legs and weak arms did. That was one year after going on the elomination diet, 2005, but esp gluten. I had gluten ataxia and the symptoms that vanished at the same time were part of it.

Theglutenfile has info on this but it's on the web now too.

After my ataxia vanished, sept 2006, I still had this from time to time and noticed it after I'd eaten too much sugar or fruit. I'm not doing this anymore. Kow.

Tc ... x

 

[MeSci]

Maybe nystagmus? Seems quite common in ME. I think I get it sometimes, among various other visual abnormalities that come and go.

 

[Iquitos]

I do have visual distortions but not like yours. Mine are what Dr. Jamie Deckoff-Jones calls painless migraines. I get what looks like a small circle of broken glass, circling and reflecting light, that then increases in size, expanding outward until it is beyond my peripheral vision. It takes about 20 minutes to expand and disappear and I usually have a slight headache while it's happening. I also don't like to try to do anything while it's happening as it's very disorienting.

For your situation, I would sugget you see an opthalmologist, if you haven't already. And do you have high blood pressure, by any chance?

 

[Tristen]

I don't have the same visual disturbance as you....mine does not jerk with pulse, rather it's more a blurring of vision much like a huge floater, but does not move from focus. The severity fluctuates in sinc with other me/cfs symptoms. At my worst, like in a crash, vision can be so bad that I can't safely drive. I do not have eye problems....been to optometrist X 2 over this and they always say my eyes are fine. I just figure it's part of the me/cfs neuro symptoms.......like the tinnitus and brain blur which also fluctuate in sinc.

I completely bombed the Shoemaker visual test. I'm yet to do that treatment......probably pick it up again this summer (was sidetracked with other priorities) Be interesting to see if that's at the core of these remaining symptoms.

 

[Hitension]

Thank you everyone for the suggestions. It's crazy to think that there are so many ways in which you can have problems with your vision, and all so debilitating. I'm going to see KDM in early April so probably won't have time to book an appointment with an ophthalmologist before then giving the waiting times in my part of Germany. I will certainly be bringing this issue up with KDM though and if he can't help then I will be making an appointment with an ophthalmologist here. I had various eye tests done when I lived in England but they never showed anything out of the ordinary. It was all so frustrating as this vision issue stops me from doing so much.

With regards to blood pressure, yes I was diagnosed with slightly high blood pressure a few years ago, but these were attributed to some anti-anxiety tablets which I was taking at the time. I long since stopped takin these tablets but the problem still persists. Is high blood pressure a common symptom of people with CFS/ME? Maybe I should get it checked again. I imagine KDM will do that when I see him next month. Thanks again for your responses.

 

[MeSci]

With regards to blood pressure, yes I was diagnosed with slightly high blood pressure a few years ago, but these were attributed to some anti-anxiety tablets which I was taking at the time. I long since stopped takin these tablets but the problem still persists. Is high blood pressure a common symptom of people with CFS/ME?

It doesn't seem to be common. Most people report hypotension, but I too am one of those misfits who is hyper!

But mine was mega-hyper, with systole over 200 and diastole about 100. I had only gone to the doc about a skin problem! I had no symptoms connected with it, and tried natural ways to reduce it, but gave in and have been taking an ACE inhibitor for years, which I tolerate well. I hadn't been on any anti-anxiety meds. The hypertension occasionally disappears, and I didn't need the meds for over a month some time back, then bp shot up again. It still varies a lot.

Back to eyes: some eye problems are due to tired or twitching muscles.

 

[Undisclosed]

I do have visual distortions but not like yours. Mine are what Dr. Jamie Deckoff-Jones calls painless migraines. I get what looks like a small circle of broken glass, circling and reflecting light, that then increases in size, expanding outward until it is beyond my peripheral vision. It takes about 20 minutes to expand and disappear and I usually have a slight headache while it's happening. I also don't like to try to do anything while it's happening as it's very disorienting.

For your situation, I would sugget you see an opthalmologist, if you haven't already. And do you have high blood pressure, by any chance?

This exactly what I get -- they are also referred to as ocular or silent migraines. I stop what I am doing when I have one and close my eyes. My trigger for those seem to be bright light from my laptop screen.

 

[Seven7]

I have heard is common in dysautonomia forums, When that happens ask somebody to check for your pupils, Mine expand (but I have heard others where it contracts), I go blind of one eye (not too often) and it was scary, then my pupil dilates. When that happens I try to calm the ANS.

 

[peggy-sue]

I've had my vision go wonky in time with my pulse too.
It is something which depends on how sick I am, and also seems to depend on what position I am in.

It tends to be first thing in the morning, when I have to get up to go to the loo.
It is when I am sitting on the throne, having a pee, and leaning forward,
I'm not really awake, so I'm tending towards gravity,
(nothing more than that, for those of you with unclean minds!))

That's when I notice the tiles of the lino are all jerking around in time with my pulse.

 

[MeSci]

There is another weird visual effect which several ME people report, including myself - the delightfully-named scintillating scotoma. The first time had this I was worried that I might be having a stroke, but did the three classic checks for stroke and I was fine. It was a shimmering effect mostly in my peripheral vision, but there was enough central-visual involvement to stop me from being able to read or see anything well enough to do much at all. I had it twice, first for 15 minutes and another time for 30 minutes. There was no obvious trigger - I was just sitting quietly reading or watching TV or using the computer, with no bright lights. I wasn't stressed or especially tired. Following a lot of searches I concluded that it was scintillating scotoma, after dismissing pain-free migraine aura, which was one of my first thoughts (I don't suffer from migraine).

There are a few threads on scotoma which you can easily find using the search box. Oscillopsia is another similar type of visual distortion.

 

[MeSci]

That's when I notice the tiles of the lino are all jerking around in time with my pulse.

That sort of thing happens with LSD...so I'm told...

 

[peggy-sue]

I've heard that too, MeSci.
But that's to do with the acetyl choline channels being held open for too long - so the initial stimulus repeats and echoes, but it happens within the brain at the perception level.

It isn't harmonised with the pulse... is it?

 

[MeSci]

I've heard that too, MeSci.
But that's to do with the acetyl choline channels being held open for too long - so the initial stimulus repeats and echoes, but it happens within the brain at the perception level.

It isn't harmonised with the pulse... is it?

Yes, I think so. Can't remember - long time ago...er...that I read about it.

OK, I confess - I took it (many times)!

 

[peggy-sue]

I only tried it once, in the '70s. Got scared then paranoid when I was told the tightening in the back of my neck was the strychinine it was cut with. I'd read a book about a bloke running around poisoning folk by putting strychinine in sugar bowls in cafes. (He needed to murder 7 innocents in order to conjure up God, to kill him.)
I had a bad time and didn't like it.

 

[MeSci]

I only tried it once, in the '70s. Got scared then paranoid when I was told the tightening in the back of my neck was the strychinine it was cut with. I'd read a book about a bloke running around poisoning folk by putting strychinine in sugar bowls in cafes. (He needed to murder 7 innocents in order to conjure up God, to kill him.)
I had a bad time and didn't like it.

Was the book fiction? I remember the neck tightening now. And the strychnine claims. Just did a search and this reliable site says that they are a myth.

Sorry to hear of your bad experience.

 

[peggy-sue]

I think the book was fiction... it was called "It Happened in Boston".

Aah. Another of those myths put about by the anti-drugs boozers and cigarette smokers, 'cos "drugs are bad".

However, I think we can rule out LSD in Hitension's query!

Can't we?

 

[Pinkheaven]

I get visual distortions sometimes when i'm really tired.The setences on my laptop screen start moving about.But i tihnk mine are related to the migraines i get.

 

[Hitension]

I can happily confirm that I have never tried LSD.

 

[Pinkheaven]

I have never tried LSD