15 replies to this topic

[FiveNotions]

Hi there folks, I've been away from my computer recently because the pain in my eyes and light sensitivity have made it impossible to look at it ..... Couldn't go outside during the daytime, and couldn't read or anything with my eyes....

But enough of my whining, here's something that might be of interest and help to all of us ....

I had a couple of hours this afternoon where the "re hot pokers" in my eyeballs subsided enough for me to do some I depth research on what might be causing this.... I won't go into detail (if you want more detail, just let me know) ... I just want to get to the bottom line .....

Based on what I found, The red hot poker feeling, and quite possibly the zaps... Are due to demyelination of the optic nerve and the nervous system as a whole .... Can be caused by disease (eg, MS), but also has been associated with certain prescription medications ....either as S/E while taking them or as WD effects while getting off them ....

It's called "optic neuritis" when it involves to optic nerves .... The demyelinization of the optic nerve, with accompanying inflammation of the surrounding tissue .....

According to the FDA database and that other thingy database I posted a while back .... Optic neuritis has been reported in connection with cymbalta/duloxetene ..... But, the number of reports of the condition in proportion to the total number of reports filed is so statistically insignificant that the FDA discounts this entirely and doesn't report it to the public ....

For example, one of the databases ... I think the FDA ... Indicated 43,000+ cymbalta reports filed! but just ***3***. Count them, 3 .... Reports of optic neuritis ....

Yep, folks we are truly the "special snowflakes" of the cymbalta S/E universe ....

Okay, so what can be done to HEAL the myelin sheath around the optic nerve in cases of drug withdrawal ..... The key amino acid needed is l-Glycine ....

So, I've started taking a Glycine supplement ... and, the best way to get it in foods, is GELLO .....

Eat Gello...that crappy stuff they give us in hospitals and that turned up in all the Gello-molds from hell featured at my childhood dinner table ....

And, what's particularly amazing to me .... I have been having a huge Gello craving ever since I went off of cymbalta .... I've made it for myself a couple of time only, because it's easy to digest on a sick stomach .... But clearly my body knows what it needs and has been screaming for it .... So, Gello it is for me at every meal!

When I think about it, it sorta makes sense .... I think of myelin as gelatinous, squishy and yucky .... Which pretty much describes Gello.....

Sorry for the long post, this is the short version actually, but I just couldn't wait to share this with you!

[Lundeliz]

FiveNotions, I just saw this post. I don't know if that what's wrong

with my eyes, but I'm getting some jello and eating it every day. Jello

couldn't hurt! With my nausea, I need something I can get down anyway.

Thanks!

[FiveNotions]

That's why I went with the jello, rather than getting another supplement...the eye stuff makes me nauseous and the jello is one of the few things that appeals to me to eat...it's very easy to digest...my favorite flavor so far is the raspberry. ;-)

[FiveNotions]

An update....at almost 4 month off crapalta, I'm still having regular bouts of the optic neuritis....not the almost constant red hot pokers in my eyeballs .... But a dull throbbing ache in them.that comes and goes.....worse when I'm tired, and at the end of the day...esp if I've been reading or on the computer a lot.... And my vision as a whole is still messed up...I don't dare get a new prescription cuz I'm not sure if this is permanent or not....

I'm still eating Gello...and am taking these supplements...omega 3, glycerine and lecithin ....3 x a day.....

I also try to remember to wear sunglasses when I'm outside, even on cloudy days....and I use warm compresses (those silicon-ish pea things that can be heated or cooled).....

I think the supps have helped...even if they're just placebos, I'm fine with that, too...all I care about is having this get better.... :-)

[clearglass]

Great information Five Notions. Per my Dr's recommendation, I'm taking Metagenics PhytoMulti vitamins and Nordic Naturals ProOmega Lemon (2 doses per day).   They work very well when I remember to take them consistently. Maybe that's why my brain zaps aren't bad. He also wants me to start taking magnesium.  The ultimate goal is to replace the vitamins with food; if only I can eat this healthy .

[FiveNotions]

Thanks for the info on supplements, CG...I'll check them out at my health store...... I'm not having zaps anymore...just the optic neuritis...and that's much better, but still very very painful....I'm open to trying anything that might help....

[buntbean2]

Interesting...I was put on Cymbalta because of eye pain (corneal neuralgia).  I have noticed since decreasing my dose my eyesight has gotten "weird".  Trouble focusing, nothing is sharp.  I always deal with dry eye, eye pain, light sensitivity but this is new.

[fishinghat]

I  have read several posts like this before BB2. Strange how it affects us all differently.

[thismoment]

Anecdote # 3458221- 

 

During withdrawal my eyesight went very funny-- flashes at the periphery, torn cornea-like symptoms, blurred vision, movements at the edges (robe swishes), black floaters, strong aversion to sunlight and so on. I even got a new prescription for new glasses. Now that I'm off Cymbalta that prescription and those new glasses just don't work for me and I'm back to my pre-Cymbalta prescription and my crooked old glasses. 

[FiveNotions]

Almost 7 dummy months off now, and my eyesight still hasn't stabilized....blurry at close, mid and far range....seemingly a worsened astigmatism ....occasional extreme light sensitivity...still a bit of occasional optic neuritis.....can't read out loud because I skip lines and/or the words at the end of lines....that may be also a part of my cognitive issues post cymbalta....I had planned to get my eyes rechecked after 6 months off the poison, but now I've postponed it indefinitely....who knows how many more vision changes I'll go through in the upcoming months....figure I've made it this far, I'll wait until I'm a year off .....

I'm still taking omega 3 and glycine....who knows if they help...they don't seem to hurt, and taking all these supplements has become one of my new "hobbies" anyway....

[lady2882Nancy]

I should have read this when it first came on here. I have been dealing with eye pain since shortly after starting to bead count and still wear the wrap around sunglasses as I still can't take the sun. The eye drops my ophthalmologist gave me made my eyes itchy so I stopped using them. Who knew that good old jello (which I love) could have helped.

[FiveNotions]

go for the glycine supplements, LadyN .... and the gello as an "add on" ... I'll find a couple more of the research articles I've got on this topic and post the links here ... will hafta do it tomorrow, I've really got to get to bed now (I've been saying that for over an hour, but I've missed reading / posting recently and am having too much fun catching up ..)

 

Also, either warm or cold packs on your eyes .... depending on which makes them feel better ... weird, but first it was the cold that helped me ... then after a month or so, that stopped feeling good and I started using the warm packs ... I have one of the gel pea filled eye masks that can be heated or chilled ...

 

what's in those eye drops from the doc? And how often do you get the neuritis? is it constant? or "transitory" ?

[dlmj]

Humm glad I came across this.. as I have been having headaches in my eyes.. usually first thing in the AM when I get up I have a headache but my eye just ache... gonna have to try this to see if it helps... God so many issues form all this. Do you folks get hives and itchy through out your body as well ? LIke if you scratch your self you welt up with marks that last for a while?

[TryinginFL]

dlmj...

 

I had itching - mostly my head, of all places!  Felt like I had "bugs" in my hair!  I never got hives, though, that is a new one on me.  But then, we are all different, so why should we itch in the same place?!

 

Hopefully, this is just another one of those s/e's that will fade in time...  

[Carleeta]

Humm glad I came across this.. as I have been having headaches in my eyes.. usually first thing in the AM when I get up I have a headache but my eye just ache... gonna have to try this to see if it helps... God so many issues form all this. Do you folks get hives and itchy through out your body as well ? LIke if you scratch your self you welt up with marks that last for a while?

Yes itching and little hive type welts can occur which is a result of our nervous system. Skin may dry out also. This happened to me. It's temporary, i believe. Nice warm baths, nice soothing lotions, and plenty of water should help the physical symptoms of this.. good luck and keep us posted..

[FiveNotions]

dlmj, "ditto" to what TFL and Carleeta said ... I had wicked dry skin, scratching/itching, welts, scalp "crawlies" .. they were yet another phase... phases ... Carleeta's list of remedies is also what helped me ...

I'd also add in baking soda/water ... I made a paste of it, and put it on the worst welted/itchy/scratchy parts of my skin ... then rinse of with cool water ..

For the eyes ... a glycine supplement may help ... it's what's in Gello, just more concentrated ... although, I also found that the Gello was something that I could actually keep down and not vomit during the first month ...

And, cold or hot packs on your eyes ... for me, the cold helped at first, then, for some mysterious reason, it was the warm packs that felt better ...