Vision problems , most likely neurological

[frozenborderline]

Date March 20th 2022



Visual problems. Even with glasses. Double vision, nystagmus , trouble focusing totally, blurry vision.


Getting headache slightly when I focus hard.


I didn't really notice this when I was only scrolling on my phone and not focusing on anything for long but I think I've had this for awhile. It may have gotten better after 4he first surgery with cci being fixed, or under traction, but it's been back for awhile I think.


Can we address it with a neurologist or neurosurgeon? It's really bothersome. The only thing helping my mood recently has been watching movies that are great, like tarkovsky, or other movies.

And I am having trouble even doing that. Or reading. Either something wrong with my eyes or brain


I am thinking brain.


Its exhausting having to deal with all these new symptoms arising at once.


This is one of the most important though, I totally need to deal with it somehow. Maybe see an optometrist to rule out eye problems. Maybe Dr ruhoy or Dr nash could help.


Maybe I need a brain mri but had weird symptoms when I did an mri last time with metal in, can we ask around to see if that's safe


Oh and I also still have low back tightness and burning.


--walker


Been having this, like I said.


Desire to see more clearly. I watch things, including Solaris, but I don't see the full framed shots the way they were meant to be seen. W my nystagmus and blurred vision it takes some of the sculptural detail out and turns things into choppier dream montages , which sounds cool but I'd like to see them as originally meant.


Headache, sort of pressure type. Hope I no have stroke. Ugh ugh ugh


This is while outside in good air btw so I'm ruling out it being bc of bad air.

I also have low back pain/tightness


Need to get help from doctor with this asap. Even if it's neurological are there ways to ameliorate if not fix root cause. Maybe bigger screens to watch or read things

Different glasses

One eyed .

Scrolling on screens less


When did this start


Is it positional. Did traction alleviate it in past ? I believe yes. But can't do traction now… so …

Could saline alleviate it , or other things helping q blood flow to brain

Could it be from weakened eye muscles



Post this question in fb groups like me/cfs brain and spine

Could it be from weakened eye muscles somehow or habit? Of looking at small screens

It's important to me bc of sound sensitivity making me already lose one art form to experience. Music. So I cant lose cinema and the other visual arts that would be terrible. Why do I have to be tortured so.? I've read the book of Job but not found a satisfying answer

 

[frozenborderline]

@Hip @Learner1 @jeff_w @pattismith @JenB @ChloeC

 

[GlassCannonLife]

Sounds terrible man, hope you can fix it.

I have been having slowly progressively worse vision since I became severe and now a few weeks bedbound seems like it has worsened a tiny bit again..?

Just problems focusing for me, left eye can't even seem to always focus up close (started with just distance loss). Right eye also started having problems focusing in a distance over the past year or so, I'd have to constantly look out the window when not doing other things to try and keep training it.

Not sure if it's ME or CCI related or too much screen time in my case but I only noticed it at all the same year I started getting mild ME.. So probably is related..

 

[frozenborderline]

Do you think it could be the eye muscles ? If all of our muscles weaken... maybe the eye muscles weaken as much. That could explain a lot of this. In that case maybe gentle eye exercises or pacing the eyes could help?

 

[GlassCannonLife]

Do you think it could be the eye muscles ? If all of our muscles weaken... maybe the eye muscles weaken as much. That could explain a lot of this. In that case maybe gentle eye exercises or pacing the eyes could help?

Maybe something with the lens..? Or CMV in our eyes? Lol hope not

 

[frozenborderline]

Maybe something with the lens..? Or CMV in our eyes? Lol hope not

I doubt cmv is true for me, or a lens issue. Which leaves muscles or lots of neuro stuff I guess.

 

[hapl808]

Happens when I'm in a PEM crash (or go beyond my energy envelope at all), dissipates a bit if and when I climb out of it.

 

[Learner1]

@frozenborderline @GlassCannonLife It might be wise to start troubleshooting vision problems by seeing an eye doctor. At the very least, they might be familiar with things that might cause vision problems, whether or not they originate in the eye.

This is a list of problems that cause changes in eyesight. It is not comprehensive, but there are a few decent ideas here:

"What Causes Sudden Blurry Vision?" https://www.healthline.com/health/eye-health/sudden-blurred-vision#other-causes

I had a similar problem in the last year, with reading on paper or a computer screen or while driving became more difficult because of blurry vision. I went for a "regular" eye exam, and the doctor was concerned about my blurry vision and sent me for an evaluation by an eye surgeon. He diagnosed me with epithelial basement syndrome, which is caused by wrinkles in the underside of the cornea, as well as cataracts, even though I'm on the young end for them. Eye drops and ointment in the eyes at night helped a bit, but I will have two eye surgeries in the short term to scrape stuff off corneas, and then cataract surgery at some point.

The cataracts can be caused by oxidative stress, a problem known to exist in most ME/CFS patients, and the other problem is just bad luck, it's not uncommon, up to 20% of adults have it at some point.

I also learned that some of the infections known to haunt ME/CFS patients can affect vision, like HHV6, for instance.

"Recurrent ocular surface inflammation associated with human herpesvirus 6 infection - PubMed" https://pubmed.ncbi.nlm.nih.gov/24296955/

Surgery on the spine has been linked to vision loss through optical nerve damage.

"Vision loss after spine surgery: review of the literature and recommendations in: Neurosurgical Focus Volume 23 Issue 5 (2007) Journals" https://thejns.org/focus/view/journals/neurosurg-focus/23/5/foc-07_11_15.xml?tab_body=fulltext

Nutrient deficiencies such as vitamins A and B12 can cause vision problems.

"8 Nutrients That Will Optimize Your Eye Health" https://www.healthline.com/nutrition/8-nutrients-for-eyes#TOC_TITLE_HDR_3

If none of the above seem to be an issue, seeing a neurologist might be helpful.

Best wishes in figuring this out...

 

[Crux]

It may be surprising that calcium deficiency can cause numerous neurological symptoms, but it does.

https://www.ncbi.nlm.nih.gov/books/NBK279022/
Ophthalmologic manifestations

• Subcapsular cataracts
• Papilledema

https://www.hilarispublisher.com/op...-heart-and-eye-function-2165-7831.1000130.pdf


"Abstract Introduction: Hypocalcemia is a potentially life-threatening biochemical disorder often misdiagnosed and mistreated. Case report: A case of a female patient with unilateral visual acuity drop, significant neurological and cardiologic problems caused by severe hypocalcemia is presented. Supplementation therapy led to withdrawal of neurological symptoms, improvement of the heart function and stabilization of the left eye visual acuity. Right eye visual acuity was excellent with occasional drops correlating to low serum calcium level. Discussion: Physicians should be aware of hypocalcemia because time between the onset of symptoms and diagnosis averages ten years and adequate treatment can prevent severe eye, heart and neurological complications. Hopefully, this case would be instructive for future medical practice, especially for recognition and treatment of the extremely rare case of unilateral hypocalcemia-induced optic neuritis. "

https://bmcophthalmol.biomedcentral.com/articles/10.1186/s12886-019-1224-9#:~:text=Symptoms of hypocalcemia can be,common ocular symptom of hypocalcemia.

"hypocalcemia can be due to increased neuromuscular excitation resulting in tetany, paresthesia or seizure. It can also be because of deposition of calcium in soft tissues producing reduced vision /cataract or calcification of basal ganglia. Cataract is the most common ocular symptom of hypocalcemia. "


In my own experience, I had most of the hypocalcemic symptoms, but normal blood serum calcium. Eye symptoms were blurry vision and ocular migraines.

It's taken over eight months to improve but not completely stop some of the symptoms with calcium supplementation. ( mild morning foot paresthesias, joints, some headaches ) My right eyelid still twitches, but that's not bad compared to the aggressive paresthesias ,cramps, and much more.

 

[maddietod]

I agree that a thorough eye exam by an ophthalmologist is an important first step. It's a quick way to find out if the problems are caused by your eyes themselves.

I stopped driving a few years ago because my processing got too slow. But I also needed cataract surgery. It always seems to be layers of things with this illness.

 

[Rufous McKinney]

Could it be from weakened eye muscles somehow or habit? Of looking at small screens

I have major eye troubles, consider it fully integrated with brain and other neurological issues. Maybe I'll just list possible factors at play..........

I would hope you can get help at a genuine Eye Doctor. To date, I have not been able to get ANY HELP, with fabulous insurance.

My last appointment was outrageously unacceptable and I will never return to THAT eye doctor. They have abused me, too. So did the prior one.

things going on with my eyes:

1) sjrogrens autoimmune likely here
2)severely blurred vision which is both: distortion from swelling and distortion from messed up tears and wetness
3)figure your using these muscles all day when awake.
4)my eyes vary from pouring liquid to goopy thick and vary tremendously day to day.
5) anything that uses the eye muscles, strains them really severely....peripheral vision is really affected.

I can't; really look at the cell phone if my husband is holding it....

Driving challenges the vision alot.

I get SEVERE PEM crashes from most visual activity , so a year of having art materials on the dining room table, I finally packed it up as I can't focus on the tip of the paintbrush, nor can my brain FOCUS on a plan of execution.

Plans/ organizational brain work, holding together a series of ideas or thoughts or plans- that is very impaired.

 

[Rufous McKinney]

In the last three days, I started a new N=1 experiment.

Its maybe helping my eyes.

Yes, I want it to help them.

I got: Copaiba oleoresin...(essential oil type thing) and I've been rubbing it into:

1) the TMJ area where lots of inflammation is concentrated....
2)on the bottoms of my feet where the brain/eye/sinus channels reside (under the toes mostly).

I'm detecting a positive shift. I"ll report back if this continues.

 

[Centime Tara]

I had a very similar experience. I went to three optometrists, and still I had the problems. My smart GP thought it might be a convergence insufficiency, and suggested that I see a specialist, which I did. He was right—I had a convergence problem, which is when the eyes aren’t working together correctly, probably due to eye muscle weakness caused by ME/CFS. The prescription was correct, but needed to have a prism added. It worked! No more eyestrain, no more double vision. I was amazed that THREE optometrists knew nothing about it.

 

[Rufous McKinney]

which is when the eyes aren’t working together correctly, probably due to eye muscle weakness caused by ME/CFS.

I've got a similar issue with the teeth. Since everything experiences these swelling up cycles, my teeth don't align, its causing me major Jaw Trouble. Tongue swells, too, lips...likely Angiodema. Probably mast cell. Not solved here.

 

[frozenborderline]

I had a very similar experience. I went to three optometrists, and still I had the problems. My smart GP thought it might be a convergence insufficiency, and suggested that I see a specialist, which I did. He was right—I had a convergence problem, which is when the eyes aren’t working together correctly, probably due to eye muscle weakness caused by ME/CFS. The prescription was correct, but needed to have a prism added. It worked! No more eyestrain, no more double vision. I was amazed that THREE optometrists knew nothing about it.

Whoa this sounds very encouraging. Thank you so much

 

[Wishful]

My ME-related vision problem is double-vision. I'm pretty sure that it's not a muscle problem, since I seem to be able to move my eyes around normally. I think it's a problem involving the brain cells (neurons and glials) involved in the network that converges the eyes. It's worse for one eye than the other. It's not convergence insufficiency, since that's for short distance, and this occurs at long distance. I don't think prisms would help, since my eyes can converge, but then they drift apart, so the 'maintain convergence' function isn't working right. It's also proportional to proline intake.

It's only a minor annoyance, and I don't think any doctors know how to treat it, so I just put up with it.

 

[Centime Tara]

My ME-related vision problem is double-vision. I'm pretty sure that it's not a muscle problem, since I seem to be able to move my eyes around normally. I think it's a problem involving the brain cells (neurons and glials) involved in the network that converges the eyes. It's worse for one eye than the other. It's not convergence insufficiency, since that's for short distance, and this occurs at long distance. I don't think prisms would help, since my eyes can converge, but then they drift apart, so the 'maintain convergence' function isn't working right. It's also proportional to proline intake.

It's only a minor annoyance, and I don't think any doctors know how to treat it, so I just put up with it.

My double vision happened at both short and mid-range distance. I also thought I could move my eyes normally. For me, the addition of the prisms to my prescription did the trick.

 

[Wishful]

I don't have DV at short range. However, the sky has twice as many stars as usual, and when did the Earth get a second moon?

I didn't even notice the DV for I expect was quite a while. Then I drove in the dark for the first time in a year or two, and the center line started diverging a few car lengths ahead, and the signs were doubled. It was really disturbing, and a very stressful drive.

Oddly, the DV is least prevalent when I'm wearing my reading glasses (I'm very near-sighted). My driving glasses make it much worse, and no glasses is about the same as with driving glasses. I've tried bending the glasses a bit, which made no difference. It's weird.

 

[frozenborderline]

My double vision happened at both short and mid-range distance. I also thought I could move my eyes normally. For me, the addition of the prisms to my prescription did the trick.

So in case I do have this , what type of optometrist would I see and what testing would I need to see

 

[frozenborderline]

I don't have DV at short range. However, the sky has twice as many stars as usual, and when did the Earth get a second moon?

I didn't even notice the DV for I expect was quite a while. Then I drove in the dark for the first time in a year or two, and the center line started diverging a few car lengths ahead, and the signs were doubled. It was really disturbing, and a very stressful drive.

Oddly, the DV is least prevalent when I'm wearing my reading glasses (I'm very near-sighted). My driving glasses make it much worse, and no glasses is about the same as with driving glasses. I've tried bending the glasses a bit, which made no difference. It's weird.

It's the opposite for me, I have double vision at shorter ranges usually, or mid range but not qt long range. But I think I have nystagmus and at most ranges even with glasses I won't get a totally clear picture without straining. This sycks bc I have sound sensitivity so I already lost music, with the vision problems I'm sort of losing the one single area left to me of pressure--cinema and visual art/reading

Anyway, I thought it could be neurological bc it got worse when my cci symptoms first appeared. But there are also times it seems muscular bc fatigue worsens it and it seems related to strain. I wonder if it could be both neurological and muscular /pem related. Eg, the neurological problems affect focus, but in order to compensate , I try harder to focus which involves muscle strain and the muscles in my eyes are like every muscle in the body and have PEM/fativuability , lower threshold for going into anaerobic metabolism and producing lactic acid instead of doing healthy oxidative metabolism.

I doubt I'm right , this is probably too hard to troubleshoot but I wonder if some combo of meds that help with PEM, and resting eyes lile I'm pacing, could tide me over and help my vision until a doctor can help.

It's just unbearable, it might be the last thing for me that just makes me give up. Art and music were only things helping me get through this time... if I haveto lose those, how could anyone expect t me to hold on