Daily episodes of blurry vision and pain around eyes

[Artemisia]

This has been going on daily for 2-3 weeks now. Usually in the afternoon, my vision suddenly goes blurry. I'm also having headache and pain and pressure around the eyes. (But the headaches are more recent; the blurry vision first started without any pain or pressure.)

I have no doctor or health insurance. No energy to go to the doctor. I feel sick even thinking of going to see one. But if it continues I will try... Not even sure who to see. A GP? That will just "establish care." Continuing to be in the """care""" of a doctor sounds hellish to me, to be frank. An optometrist? I'm in the US.

But if this is just normal for worsening ME, will a doctor help?

My ME symptoms have sharply gotten worse at the same time as the vision issues. Grateful for any help or advice.

 

[Rufous McKinney]

My vision has been a blurry watery mess, for many years now.

I recently experienced waking up on a Friday, and realizing I was seeing double. That lasted all day, but went away the next day and hasn't returned.

Its probably neurological, possibly neurological toxins, which is what was suggested to me when I sought help, and received none, from two different eye doctors.

Or it also like Sjorgrens and dry eyes and autoimmune.

I'll wait for somebody to show up with tangible suggestions, because I've not been able to get any help what so ever.

 

[Artemisia]

and received none, from two different eye doctors.

optomestrist or opthamalagists? Are you in the US?

I guess if they can measure eye pressure and rule out glaucoma and swollen optic nerve, that would help?

This is so scary! As if constant PEM wasn't debilitating and frightening enough.

 

[BrightCandle]

I have this too, I can't keep both eyes focussed on something and I often have blurry vision. Panda eyes combined with red edging of the eyelids. I don't no solutions really, some of the Optrex eye sprays relieve a bit of the strain for a while but I have tried a bunch of other things that haven't worked in terms of eye drops.

 

[Jyoti]

Usually in the afternoon, my vision suddenly goes blurry. I'm also having headache and pain and pressure around the eyes.

Obviously this could have multiple causes. I was surprised to see your post, just now, after hours of reading about idiopathic intercranial hypertension (). It might be worth checking that out as a possible cause. It certainly does cause headaches and eye pressure/pain.

Cort just did a post on a podcast with Kaufman and Ruhoy on it: https://www.healthrising.org/blog/2...anial-hypertension-chronic-fatigue-unraveled/

And in this guest-written column in Health Rising there is a little self-test you can do as well, and it roughly separates the symptoms of IIH and a CSF leak, both of which may have some commonalities.

I know this may not help or be relevant, but ....perhaps? And then, of course, there is insurance and doctors visits, and believe me, you have all my sympathy there. I think you might get a sense from an ophthalmologist, and since the presenting symptom is visual, that could be a place to start.

 

[Artemisia]

Obviously this could have multiple causes. I was surprised to see your post, just now, after hours of reading about idiopathic intercranial hypertension (). It might be worth checking that out as a possible cause. It certainly does cause headaches and eye pressure/pain.

Cort just did a post on a podcast with Kaufman and Ruhoy on it: https://www.healthrising.org/blog/2...anial-hypertension-chronic-fatigue-unraveled/

And in this guest-written column in Health Rising there is a little self-test you can do as well, and it roughly separates the symptoms of IIH and a CSF leak, both of which may have some commonalities.

I know this may not help or be relevant, but ....perhaps? And then, of course, there is insurance and doctors visits, and believe me, you have all my sympathy there. I think you might get a sense from an ophthalmologist, and since the presenting symptom is visual, that could be a place to start.

Thanks very much. Do you think it's important to see an opthamologist as opposed to an optometrist?

 

[Jyoti]

Do you think it's important to see an opthamologist as opposed to an optometrist?

Hell if I know @Artemesia. I mean, you are starting from headache and blurry vision. It is possible an optometrist could unearth the reasons for them, but my gut would say that with ME..... someone without a medical degree would not have the knowledge. Then again, those WITH medical degrees are largely clueless.

If you look at info on IIH and it doesn't resonate in any way, the symptoms do not match and all you have are the headache and vision issues, you might try an optometrist. I expect they would be cheaper and less officious. And if the issue is a simple one, it could be a way to address it. As always, the landscape is pretty spongey.

 

[Bluebluesky]

Molybdenum (sodium molybdate) might be worth a try. You have to take it separately. It switches off blurry vision for me in 10 minutes. From my quick read of that very interesting article and some of my other molybdenum deficiency symptoms it could seem that my molybdenum deficiency somehow interferes with intracranial tension.

I see you tried out b12 oils. I may be that your reaction to b12 used up your molybdenum supply. B12 deficiency in itself can also give blurry vision, btw.

It's a far shot, but it might be worth a try.

 

[Mary]

Phosphorous deficiency (hypophosphatemia) can cause double vision. It's happened to me and the double vision went away when I took phosphorous. I started needing extra phosphorous when I started taking B1 due to refeeding syndrome (see https://my.clevelandclinic.org/health/diseases/23228-refeeding-syndrome )

Low phosphorous causes muscle weakness among many other things, and the first muscles to go weak are the small ones such as in the eyes and the throat. It can cause difficulty swallowing. I take a phosphorous supplement several times a week but sometimes I overlook it and one of my first symptoms is my pills start getting stuck in my throat.

And this 1998 study is pretty interesting I think: Phosphate diabetes in patients with chronic fatigue syndrome - roughly 10% of 87 ME/CFS patients were found to have phosphate diabetes:

Most of the symptoms presented by patients with phosphate diabetes such as myalgia, fatigue and mild depression, are also common in patients with chronic fatigue syndrome, but this differential diagnosis has not been considered.

 

[Artemisia]

Molybdenum (sodium molybdate) might be worth a try. You have to take it separately. It switches off blurry vision for me in 10 minutes. From my quick read of that very interesting article and some of my other molybdenum deficiency symptoms it could seem that my molybdenum deficiency somehow interferes with intracranial tension.

I see you tried out b12 oils. I may be that your reaction to b12 used up your molybdenum supply. B12 deficiency in itself can also give blurry vision, btw.

It's a far shot, but it might be worth a try.

I'm following Dr Greg Russell Jones protocol, so I'm taking 200 micrograms of his molybdenum oil. I took it for several weeks before adding the b12. Just this morning I was actually wondering if some of his oils are contributing to this blurry vision. But you bring up a good point that maybe I need more molybdenum. I'm doing an organic acids test this week so hopefully that will give some clues.

 

[Artemisia]

I wonder if it could be the selenium. My health in general has been doing worse and I don't know if it's because of this protocol with iodine, selenium, molybdenum, and B12 and B2 I have been on for a few months. But Dr Greg Russell Jones insists that this protocol is necessary to activate vitamin B12 in the body. And there are several success stories with people improving from me/cfs in the Facebook group who follow his protocol. People who I actually recognize from 10 years ago in health seeking Facebook groups when I was more active there. So I know they're real people. It's really bizarre seeing the same people trying to get well year after year. Are we in purgatory? Hell? But anyway, some of these people have finally gotten better with this protocol.

He also insists that sodium selenite is the only selenium form that should be supplemented. Some random person on Reddit has this to say in contradiction. Who knows who is right. I'm kind of tired of supplementing anything. It just always seems to push other nutrients too high or too low and cause new problems.

Jeez, don't take any selenites. That's for the cattle, sadly. Inorganic seleniun compounds, especially selenates and selenites are extremely toxic, on par with arsenic toxicity. The only appropriate supplement is selenomethionine.

--random reddit person

Of course, I had weird reactions to Now brand selenomethionine.

I was very hesitant to try the iodine since I had a horrible reaction to 1 mg of iodine 10 years ago. It actually pushed me from mild to moderate ME. But the dose I'm on now is very low, 150 micrograms, and it's topical so who knows how much is actually absorbed.

 

[Artemisia]

I have noticed several times over the years that my hope is shifting from maybe the supplement will help me, to maybe if I quit this supplement it will help me. It's almost like we have to start taking stuff that will make us worse and then the only hope we have to cling to is that by going off it we will have a little bit of relief. What a crazy existence.

 

[Bluebluesky]

I'm following Dr Greg Russell Jones protocol, so I'm taking 200 micrograms of his molybdenum oil.

Oh, so you already take it! That's great. I take and need way more, though, like normally 500 micrograms three times day (orally). But even more at the moment because taking boron makes molybdenum tank (judging from my usual symptoms).

I'm doing an organic acids test this week so hopefully that will give some clues.

Well, that is just perfect then! Lucky you, it could be so exiting to have that test and get some answers. I hope it will give you some useful guidance then.

 

[Bluebluesky]

I'm kind of tired of supplementing anything. It just always seems to push other nutrients too high or too low and cause new problems.

Doesn't it do anything good at all? Like I keep on trucking with it because it surely does good good things - but then there is this refeeding hell to cope with, all sorts of triggered deficiencies. But after all it makes sense and I feel like I'm at the right track in the big picture and that I'll get there if I keep on trying.

I can understand that you are frustrated if you get no clues that you are on the right track.

 

[Artemisia]

Well, that is just perfect then! Lucky you, it could be so exiting to have that test and get some answers. I hope it will give you some useful guidance then

Is there a way to interpret the organic acids test on my own? If I just have to go on what the Russell Jones approach is, and if that approach does not work for me, then it might not be very helpful.

Doesn't it do anything good at all? Like I keep on trucking with it because it surely does good good things

Do you mean you keep trucking with the B12 protocol? No, I have not noticed any improvements since being on this protocol. Fatigue, PEM, sleep much worse. Gained 20 unwanted pounds. I'm not one to jump to conclusions about "the protocol did this!!" because often we just can't tell what's causing what. The protocol is not the only change I've made. But after this OAT I will def decrease and maybe stop the whole thing. The OAT, and seeing what Greg recommends, was my last ditch effort at this.

 

[Bluebluesky]

Is there a way to interpret the organic acids test on my own? If I just have to go on what the Russell Jones approach is, and if that approach does not work for me, then it might not be very helpful.

There should be a report like this: https://mosaicdx.com/wp-content/uploads/2023/08/MDX_Report_OAT_ENG.pdf

So you can have a look yourself for what is out of range or close to out of range. For vitamins and minerals it should be relatively straightforward. Then you can google the rest. Or ask for help in here maybe. Some of it might be too complex, but not all of it, I think.

Gained 20 unwanted pounds.

That might be the iodide. It makes me gain weight for sure 😬.

Do you mean you keep trucking with the B12 protocol?

Well more with a selv-experimental approch for vitamins and minerals, where I try them one by one to se if anything helps. And then if it helps I read about it and then I often stumble upon new things along the way.

It certainly sounds frustrating if you see no positive signs at all...

 

[Wayne]

My ME symptoms have sharply gotten worse at the same time as the vision issues. Grateful for any help or advice.

Hi @Artemisia -- Sorry to hear about your vision problems, and hope you can find some way to improve things for yourself. -- I was in a situation years ago where my eyes started giving out on me. I would describe it as them becoming "extremely tired" after being on the computer for only a few minutes.

I had done herbal eyewashes in the past, and decided to try something along those lines in the hope it would help. After doing some research, I discovered many people would use DMSO to improve various eye conditions, by putting some directly into their eyes.

That was a bit too much for me, but I decided to mix equal parts magnesium oil and DMSO, rub it on the palms of my hands, and then apply it to my closed eyelids. Within a couple of days, the tiredness in my eyes went away completely, and a longstanding issue of chronic eye twitching went away as well.

This experience was a catalyst for me to continue to do things I think are good for my eyes. I daily combine a lotion with some sodium ascorbate powder and some MSM crystals. MSM is very closely related to DMSO. I apply the lotion to my eyelids, along with a light layer of castor oil.

I think what I'm doing is supporting my eyes nutritionally, and also sterilizing them so no low-grade infection can take hold. I also just rub my eyes daily to keep a good amount of circulation going. -- Good luck finding something that helps!

 

[Zebra]

Do you think it's important to see an opthamologist as opposed to an optometrist?

Please see an opthalmologist, rather than an optometrist.

An opthalmologist can measure the pressure in your eyes and they can also examine your optic nerve.

If they come across something abnormal, they can bump you up to a neuro- opthalmologist, who is better equipped to diagnose interactions between brain and eyes.

Sorry this response is so terse! I'm not feeling well at all, but wanted to (try) and be helpful to you!

 

[Rufous McKinney]

optomestrist or opthamalagists? Are you in the US?

one of each.

The head doctor at the eye clinic, where I was given NO tests, happened to work on my own husband.

So I asked him, why I can't get any help here at this Eye Center. He told me I would have to go to UCLA.

Im in the US. Glaucoma was ruled out. But the real eye doctor, ran no tests, and I won't return.

I actually have a UCLA doctor for my lymphoma. Thats backed off, thank you .

 

[Rufous McKinney]

use DMSO

I have some of that but EGAD would never put it into eyes