Treating Eye Problems

[leela]

Has anyone tried treating their vision problems? I have been reluctant to go to a regular eye doctor for fear they'll treat just the eyeballs, ignoring the brain, and thus make my eyes progressively worse by giving me glasses I either don't need or are not the correct prescription for the problem.

I don't have a neuro-opthalmologist near me, though Dr. Padula's theories make a lot of sense:
http://www.cfids.org/archives/2001/2001-4-article02.asp

I've just made an appointment with a regular optometrist, though, because I have to admit I really can
see so much less now, and my drugstore readers are giving me a headache. I have balance problems, and bump into stuff, and migraines; yet it seems impossible to know how much of this is due to the eyes alone, M.E. effect on eyes, or other effects of M.E.

Has anyone else had some positive experience in this area, and/or can offer some advice as
to what info to offer the eye doc when I go in?

 

[glenp]

Wow this is a great article. I went to an ordinary opthalmologist who said my eyes were fine!!! I have also seen an optometrist who gave me prescription glasses that were not suitable so have ended up back with the drug store glasses. Let me know how it goes, are you going to take him the article?

glen

 

[leela]

Yes, it *is* a great article. I'd go see Dr. Padula himself if it wasn't so far away.
I will bring the article, but as the doctor I'll be seeing is just an optometrist, I'm
not sure what he'll be able to do for me. It's totally shocking how much it costs in
the US to get glasses. Between the office visit, the scrip and the frames, you're in for hundreds
upon hundreds. And since the ME symptoms are so changeable, I'm afraid to be wasting my money...

 

[glenp]

I don't have faith in optometrists for my eye problems related to this illness. Are there no opthamologists available there? I do not think an optometrist would have any knowledge in this area and many have an actual interest in "selling" their glasses. At least an opthamologist is an eye specialist which is more knowledgeable then an optometrist- mine did suggest to me that I just use the magnifying glasses whereas the optometrist sold me glasses which were of no use to me and I ended up throwing out. It would be great to be able to see that specialist

glen

 

[leela]

You know, you are saying wise words here. I think I shall cancel the optometrist and hunt for an opthalmologist that is not too far away.
Thanks--sometimes I just need a second voice to confirm my intuition!

 

[leela]

D'oh! I'm so foggy lately...I just checked and my appointment *is* with an opthalmologist! He's just not a neuro-opthalmologist, so he doesn't specialize in brain-related
eye problems. I do take encouragement from your optho telling you to just go ahead and use the magnifiers instead of expensive glasses.
I'll just be bummed if I spend the fee to see this guy, and then end up being referred to a far-away neuro guy anyway.

 

[maryb]

Hi Leela I too have similar problems with my eyes, I can't read and if I try I become dizzy, sick and disorientated after a couple of minutes, its heartbreaking for me as I used to be a voracious reader, I know its neurological problems caused by the ME.
I'm sorry to have to say I saw a neuro opthalmic consultant who just said he could'nt find a problem, what an absolute waste of money that was, his wife did basic eye testing as well (which I didn't need) and so was charged double the usual fee!
I think they first have to understand the condition to do the right tests. How do they explain a person becoming unable to read or focus? or is that another part of the its all in your head theory?

 

[leela]

Oh Dear, I'm sorry you had to go through that! It's the thing that keeps me from getting most of my various symptoms/dysfunctions treated--the fact that most
medical professionals know nothing bout M.E.! I really don't know what to do now that my eyes are getting so blurry, and the drugstore readers make my head
and eyes hurt. <sigh>
I really hear you on the reading thing, as a fellow former bookworm; it is a dreadful thing to lose, especially from here in Couchland.

 

[glenp]

Maybe others are similar to me. I believed the optometrist who said magnifying wasnt good enough because I also needed correction. Geez they dont really know. I think I kind of test normal because sitting there staring the eyes focus better. My glasses that I threw out were close to $300 But maybe for some of us they will help. My probs are mostly focussing --so need magnification and a ruler or something to keep from jumping. We just have to be aware when we go in there, for those that might think they know but don't. One guy did notice the "jiggle" in my eyes once, but that was only one

glen

 

[rifyraina]

The eyes are 2 of the most complicated organs in the human body. Do your eyes often feel dry, have a stinging sensation, or feel scratchy? You may have dry eye syndrome, a condition that can occur when the tear glands don't produce the correct quantity or quality of tears. Dry eye syndrome is a chronic lack of moisture in the eye. If left untreated, dry eye syndrome may weaken vision and lead to eye infections.

 

[Lesley]

Here is another good article about vision problems in CFS. http://www.cfids.org/archives/2001rr/2001-rr3-article02.asp

The article is an exerpt from an article in the Journal of Behavioral Optometry. You can see the whole article and 3 more on the journal website: http://www.cfids.org/archives/2001rr/2001-rr3-article02.asp
Click on the bottom right cover to see the table of contents.

Many of the problems we have are caused by autonomic nervous system dysfunction. You may be able to get help from a developmental or behavioral optometrist. This website has a doctor finder: http://www.covd.org/Home/LocateaDoctor/tabid/69/Default.aspx

This is yet another area where most doctors have no idea what to do with us! Most optometrists and opthalmologists will not be of any help with these problems.

 

[leela]

Wow, Lesley, this is very helpful. Thanks for posting. I had read the First article, but was not aware of "behavioral optometry." i will definitely look into it,
and thanks to the finder you posted, there is someone practicing that not too far away.

 

[Lesley]

Just to add a little context, my daughter was having headaches and was a slow worker at school. When she wrote, there weren't proper spaces between words. It turned out she had problems with convergence (eyes coming together properly when going from distance to near) and tracking (eyes moving from side to side together). This could cause double vision and blurring. All of this got worse when she was fatigued. Since she was a kid, she didn't know any different and never complained. She was an avid reader, and a great student. We only looked into vision problems because of the headaches and the fact that I remembered something the school psychologist had said about developmental vision problems. She did vision therapy in the office and at home on the computer, and things improved.

All of this happened before she was diagnosed with CFS, orthostatic intolerance, and now Lyme. I now realize her vision problems are related to all of the other autonomic issues. She is sicker now, and if she needed help with her vision I might ask the doctor about the prism lenses mentioned in the article rather than going the vision therapy route. The vision therapy was exhausting for her. When I tried it, I felt like I had motion sickness.

 

[taniaaust1]

i had bad vision issues due to the CFS/ME and was meant to get glasses. When i was well enough to go back 6-12mths later to sort the glasses out, i found out my sight on restesting was perfect, it had fixed itself. i put the sight fixing itself down to the fact i'd been put onto a heap of different supplements for the CFS/ME along with taking vitamins. The eye doc. said he'd never seen someone who had the vision issue i had, get better.

It's hard to know what is going on with what in CFS/ME but in my case im glad i didnt get the glasses

 

[leela]

Thanks, everyone, it's good to have some context and experience from others. It really is complex, and what bugs me is the lack of acknowledgment of that from eye doctor world.

I canceled my appointment with the ophthalmologist I'd never met after sending him a polite and friendly email about my concerns, along with a link to two articles about vision and ME, asking for his collaboration in determining whether seeing him was the appropriate step or whether a different approach might be better. I had no reply, and on phoning the office the day before the appt, the front desk lady (who was apologetic that no one had got back to me) said they "showed" him my email (I presume the articles were not read) and his reply was "It sounds like the normal aging process of the eyes."

Okay, my eyes are aging with the rest of me, but what part of autonomic nervous system disfunction did he fail to grok? I would have probably kept my appointment if he had even said
something like, it's hard to tell from here, we'll have to take a look."
I have found a referral to someone else who sounds good, and kind; maybe I'll have better luck with him. I wish it would just resolve like yours did, taniaaust1! I'm so happy to hear that!

 

[jamesrayenz]

A general ophthalmologist who said I was right was to my eyes! I have also an optometrist prescription glasses which I then ended the appropriate drug store was not looked back with glasses.