Dim Vision

[TorturedSoul]

I've had this symptom for the longest time. Probably since adolescence. I'll feel like the room is dimming. Almost like someone is dimming the lights very briefly. I remember in the past seeing the room

get darker almost as if the sun moved behind a cloud and effected light coming in. Anyone have this symptom? I wear glasses so I get yearly exams. I don't think I've done the glaucoma test though in a few years. 

[MomtoGiuliana]

Yes this happens to me sometimes.  It is weird.  I've never mentioned it to an eye dr.  I also get yearly exams and other than being nearsighted my eyes are healthy.  I also get a lot floaters and sometimes see bright spots of light too.  I have mentioned this to my eye dr and he sees no reason why I would get bright spots appearing in my vision.  Of course!  (I say of course bc that is a typical response from drs for most of my sporadic symptoms).

[Szekster]

I am an ophthalmologist and your problem sounds like vascular flow to the eye and ultimately the brain is constricted and that can cause transient obscurations of vision.  With EDS people get POHTs (postural orthostatic hypotension syndrome) which causes blood pressure issues and blood flow problems.  I have had it for years ... in particular the vision tunnels down and it usually happens upon standing or positional changes.  I am not a cardiologist but maybe a beta blocker, the long acting kind like Metoprolol, can help if it's due to a rapid heart rate, like it is with me, and if you slow down the "squeeze" of the heart and let it get a more complete pumping of blood it can improve your symptoms.  I hope it helps 

[RecipeForDisaster]

I get this when my BP is dropping, I change positions, or am about to pass out. It’ll go all the way to black if I don’t sit/lay back down.

[Szekster]

Oh yeah I’ve had some falls too so it can be a real problem we need a good cardiologist who knows about this disorder because they are all not familiar it’s been my experience anyway

[TorturedSoul]

Thank you everyone! I appreciate your input. It's amazing how many symptoms arise from autonomic dysfunction. I finally got an appointment in Boston at Brigham's hospital. Too bad it's a year away. Snails pace 

[Sarah Tee]

I agree that it sounds like the type of visual disturbance that comes from not getting enough blood supply to the brain or optic nerves. I think people experience a wide range of visual disturbances caused by slightly low blood supply.

For instance, I have the sensation of not being able to see very well when I'm symptomatic, but it's a sense of not seeing well with my brain rather than my eyes not working. Recently I had a very unusual (for me) remission during the day, and it was like I could suddenly see the world again properly. It was very disconcerting. It was like when you are tuning a newer car radio and it is off station and a bit fuzzy, then suddenly it snaps onto the right frequency. I suppose the medical term would be mild cognitive impairment.

Even though it's a year's wait, the docs at Brigham seem to put out a lot of good research and they seem to do some types of testing that are not offered elsewhere.

Dr Novak at Brigham seems to be the only person publishing on non-POTS orthostatic intolerance (although he covers POTS as well). I also noticed his name on a couple of recent studies looking at mast cell disorders, SFN and autonomic symptoms.

 

[TorturedSoul]

@Sarah Teeyes! I've looked at his research and his research on hyperventilation as a cause of POTS symptoms intrigued me. I also didn't want to a standard tilt table test. At Brigham they also monitor cerebral blood flow in all positions and that's one of my biggest issues. I chronically feel like the blood flow to my brain is disrupted )chronic lightheadedness, brain fog, etc) It feels so severe yet I never faint. 

[RecipeForDisaster]

21 minutes ago, TorturedSoul said:

@Sarah Teeyes! I've looked at his research and his research on hyperventilation as a cause of POTS symptoms intrigued me. I also didn't want to a standard tilt table test. At Brigham they also monitor cerebral blood flow in all positions and that's one of my biggest issues. I chronically feel like the blood flow to my brain is disrupted )chronic lightheadedness, brain fog, etc) It feels so severe yet I never faint. 

This test was very helpful for me. I think he is great if you have something unusual. 

[BaPon]

On 11/17/2022 at 7:17 AM, TorturedSoul said:

@Sarah Teeyes! I've looked at his research and his research on hyperventilation as a cause of POTS symptoms intrigued me. I also didn't want to a standard tilt table test. At Brigham they also monitor cerebral blood flow in all positions and that's one of my biggest issues. I chronically feel like the blood flow to my brain is disrupted )chronic lightheadedness, brain fog, etc) It feels so severe yet I never faint. 

I found this article helpful. I’m newly diagnosed so maybe old info for those more experienced. But can’t hurt to share. My cognitive testing is so impaired they are ruling out Frontal Temporal Lobe Dementia. But it appears to be related to the dysautonomia.
 

Cerebral Blood Flow and Cognitive Performance in Postural Tachycardia Syndrome: Insights from Sustained Cognitive Stress Test

Originally published5 Dec 2020https://doi.org/10.1161/JAHA.120.017861Journal of the American Heart Association. 2020;9:e017861