Vision problems , most likely neurological

[hapl808]

The prism idea is interesting. I went to multiple optometrists and ophthalmologists because of minor vision issues, but that was never mentioned. Some of the symptoms are very similar to ME/CFS - difficulty with concentration, balance and coordination problems, neck and upper back pain, facial pain, blurred vision, difficulty with glares or reflections, etc.

 

[Wishful]

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

I don't know. I don't know what type of expert has even a slight chance of figuring out my DV. I expect 'it's just part of my ME', so it'll have to wait until someone figures ME out.

But there are also times it seems muscular bc fatigue worsens it and it seems related to strain.

Fatigue from overusing those eye muscles, or general fatigue? If the latter, it could be affecting general neural function.

but I wonder if some combo of meds that help with PEM, and resting eyes lile I'm pacing, could tide me over

Maybe, but for my ME, non-meds were more effective than prescription pharmaceuticals, so don't rule out herbs&spices or foods as things that might help.

I would really, really, really hate to be unable to enjoy reading, so I understand how you feel.

 

[frozenborderline]

Fatigue from overusing those eye muscles, or general fatigue? If the latter, it could be affecting general neural function.

Fatigue in the eye muscles. Like just imagining there may be a lower threshold of fatigability there or PEM... plus I may use screens more than someone who isn't sick , the combination may be bad. Weak but ogerstrained muscles. My friend with als who communicated only with his eyes and made art and was on his computer all the time watching things , and could only move hiseyes, I think got nasty eye strain and maybe double vision, he's dead now but I could ask his widow , once it's appropriate, if he had those symptoms... just bc I think it could provide an insight into mine... how u can have issues like that without necessarily structural problems with the eye. I want them to be fixable or I will give up on this illness give up on everushing

 

[frozenborderline]

Maybe, but for my ME, non-meds were more effective than prescription pharmaceuticals, so don't rule out herbs&spices or foods as things that might help.

Meds/herbs are rhe same thing , no? The line btwn herbal medicine and pharmaceuticals and even supplements is pretty thin. Magnesium can have a drug like effective , willow bark is basically the same drug effect as aspirin , and so on. Anyway I've tried lots of things in both category ... I haven't found many plant panaceas... besides opium that is. But the thing is sometimes herbal medicines are too messy and have too many constituents to be safe interacting with drugs I'm already on. Many of them inhibit liver enzymes that metabolize said drugs. But I'm not anti plant medicine. To me it's not separate from medicine... it's all just putting some kind of chemical in your body to alter it , whether it's in a plant or synthetic or extracted , no?

 

[frozenborderline]

I would really, really, really hate to be unable to enjoy reading, so I understand how you feel

Thanks for the empathy.

It is tough bc I already lost everything else basically. Bedridden and unable to do 99 percent of normal stuff that would make me happy, unable to listen to or play music when I was a musician before getting sick. But at least I could watch movies with low volume , read some , and look at art and my favorite Mangas. Even watching ten minutes of tskrovsky films would start to make me forget I have me/cfs bc its so spiritually enriching and sublime. But I am losing that now. And maybe , just maybe, there's some fix. But I hate having ng to have the burden of figuring out the etiology on my own ... I'm too goddamn sick to keep doing this and trying to patch one leak after another and another and another ... my body falling apart in too many ways, having to solve the problems individually rather than just fix the whole thing.

Also wonder if it could be sjogrens

Also I massaged my eye muscles /eyes hard yesterday to try and relieve strain but didn't help long term.

 

[frozenborderline]

I expect 'it's just part of my ME', so it'll have to wait until someone figures ME out.

Honestly I can deal with certain types of quality of life impairments but not this. I'm not a Saint. So as much as I admit it could be part of ME I'm hoping it's a problem that's at least partially independent so I can solve it for palliative purposes

 

[Zebra]

Hi, @frozenborderline

Maybe see a NEURO-opthamologist?

 

[GlassCannonLife]

@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...

Damn, thank you for sharing that. Sounds like I really need to investigate this properly.

Hopefully I won't be bedbound after this crash because I can imagine that being much more difficult to handle doctors appointments with.. Not sure if I'd have access to benzos etc like some of the guys on here.

 

[frozenborderline]

I think I've had some minor variant of this for awhile. *However I'm sure it got significantly worse recently* like in the past day or two literally . I may have had it on and off earlier, especially since late 2018when my worst neuro symptoms from cci appeared. But before then I'd had eye exams and was normal besides being a bit nearsighted.

If I can't fix this soon I will have to just give up on treating my illness.

I don't even know if it's safe to go to ophthalmologist until I get novovax and evusheld. I've been waiting for novavax approval in usa. It's approved almost everywhere BUT here. And I can only get other immune treatments for covid like evusheld after I've been vaccinated due to rationing. Ugh. But I need to fix this eye problem so bad I'd risk something to.

 

[GlassCannonLife]

I think I've had some minor variant of this for awhile. *However I'm sure it got significantly worse recently* like in the past day or two literally . I may have had it on and off earlier, especially since late 2018when my worst neuro symptoms from cci appeared. But before then I'd had eye exams and was normal besides being a bit nearsighted.

If I can't fix this soon I will have to just give up on treating my illness.

I don't even know if it's safe to go to ophthalmologist until I get novovax and evusheld. I've been waiting for novavax approval in usa. It's approved almost everywhere BUT here. And I can only get other immune treatments for covid like evusheld after I've been vaccinated due to rationing. Ugh. But I need to fix this eye problem so bad I'd risk something to.

What's evushield? Why is novavax better for pwME?

Edit: I googled it! All good

 

[frozenborderline]

Evusheld is on Google. Novavax is better bc of using a technology that is not novel. Its been used for hep b and flu vaccines for years. Unlike mrna

 

[katabasis]

Fatigue in the eye muscles. Like just imagining there may be a lower threshold of fatigability there or PEM... plus I may use screens more than someone who isn't sick , the combination may be bad. Weak but ogerstrained muscles. My friend with als who communicated only with his eyes and made art and was on his computer all the time watching things , and could only move hiseyes, I think got nasty eye strain and maybe double vision, he's dead now but I could ask his widow , once it's appropriate, if he had those symptoms... just bc I think it could provide an insight into mine... how u can have issues like that without necessarily structural problems with the eye. I want them to be fixable or I will give up on this illness give up on everushing

You might want to specifically look into what is referred to as 'accommodative dysfunction' - disorders involving the focusing/accommodating power of the eye, which power is enacted by the ciliary muscles. I also have visual problems and at this point I'm almost certain that my issue is with accommodation, though it's been a lower priority for me to find a doctor who will delve into the topic since my eyesight isn't completely terrible and I have far more pressing issues to deal with.

There are tests for accommodative function but I don't think it's something that would normally be done at an opthalmologist if you went in and simply complained of blurry vision. It can also be tricky because unlike more common nearsightedness etc., an attack of accommodative spasm, say, might only occur some of the time, and to greater or lesser extent. Some days my vision is almost completely normal. Others, my left eye can't read anything farther than two feet from my face.

While double vision isn't due to accommodative dysfunction per se, if you can't see clearly you can end up with problems with convergence. In some cases where one eye is better than the other, this can cause amblyopia. Do you feel like you have a 'good eye' or is vision the same in both?

 

[Pyrrhus]

Possibly related discussions:

Double Vision
https://forums.phoenixrising.me/threads/double-vision.11372/

Pupil Hippus Anyone? (Pupils constricting/dilating)
https://forums.phoenixrising.me/threads/pupil-hippus-anyone-pupils-constricting-dilating.82520/

 

[valentinelynx]

I think you were looking into CCI at one point. I don't recall the outcome or why you can't do traction anymore. But, for the record, double vision and especially nystagmus, frequently occur with CCI and Chiari malformation, possibly also with tethered cord.

 

[Rufous McKinney]

into CCI at one point. I don't recall the outcome or why you can't do traction anymore.

he got a neck surgical procedure, I believe....last year.

 

[Centime Tara]

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

Sorry, I just saw your question. My doctor described the person he referred me to as a “convergence specialist.” Hope that helps.

 

[Nord Wolf]

Interesting thread.

My vision started failing about when my healthcare teams thinks the onset of my ME/CFS began. Consequently about a year after I was poisoned in 05. It got to the point where without contacts I can’t see clearly enough to make out anything further away from my eyes than 10 inches. My vision went from great to 78/72 in a handful of years. My eye doctors all say (every year) my eyes are “healthy” and not the issue with my vision.

Interestingly, along with my severe level of ME/CFS, high level of eosinophilic asthma, I’m being sent in this winter for POTS testing. Of all the tests my docs have given me I fit all diagnostic tags but one thing, gastric issues. They have been increasing strongly over the last two years.

The interesting part is that I tend to go blind in the shower, sometimes when standing up from a prone position, and when my energy drops drastically. It has been happening more and more over this past year to become a fairly regular occurrence. And yet the eye doc says the eyes look healthy. But those issues can be among the strong symptoms of one or more of the 3 types of POTS; Neuropathic, Hypovolemic/Blood Volume Regulation, and Hyperadrenergic.

 

[frozenborderline]

And yet the eye doc says the eyes look healthy. But those issues can be among the strong symptoms of one or more of the 3 types of POTS; Neuropathic, Hypovolemic/Blood Volume Regulation, and Hyperadrenergic

I don't understand how that would explain anything, or help fix it , bc I have POTS and low blood volume and neuropathy , all diagnosed , and yet no doctor suggested that those things explained my eye symptoms and light sensitivity. I've not heard of that as an explanation for eye issues

 

[Rufous McKinney]

I've not heard of that as an explanation for eye issues

I have an intense case of Sjorgrens (diagnosed by my dentist, who does not treat eyes); two eye doctors refused to provide me any actual medical care. Bringing my husband resulted in more nothing. Later he wondered why no real tests were performed. I wondered why he did not ask that question in the presence of the eye doctor.

Whatever is causing all the severe eye problems is also entirely associated with the brain. So its all the same thing. In my personal experience.

 

[frozenborderline]

Whatever is causing all the severe eye problems is also entirely associated with the brain. So its all the same thing. In my personal experience.

Well, given that I was diagnosed with some kind of vague post concussion like eye issue/light sensitivity by a neuro ophthalmologist, I know that the issue isn't just in the eye, and that it is connected to a neurological and possibly systemic issue. That said, it helps in trying to figure these things out to be as specific and parsimonious as possible, and I don't see how it's connected directly to POTS.

In my case I doubt I could treat pots and have the eye issues get better. I mean I could give saline and eye issue testing a go