Eye pain

[taylapj]

Hello all, does anyone else get this kind of sharp pain that feels like it's just above your eye socket and in the side of your head causing your eye to almost wince through the pain, which incidentally only lasts 4-5 seconds each time, I've had this on and off for 3 hours now.  I know eye 'ache/pain' can be a symptom but didn't want to start labelling every new thing on chiari. It really does hurt, I thought I may just need to wear my glasses, so I have in the past 1 hour and it's made no difference. Grrr much love

[selmaS]

  Hi and welcome to the Chiari forum.

  That is one of the best things to find, that we r not alone....and to share our journey's with this condition so others can find help and some relief.

The Pressure with the eyes can be that u may also have a related condition PTC or ICP.....both deal with increased CSF build up and can be bcuz of Chiari or can cause the cerebral tonsils to herniate even more.

A LP (lumbar puncture ) is one way to know for sure, but u need to be cautious in having this done as it also can cause the tonsils to herniate more if done incorrectly.

Finding a true Chiari specialist to help is key....see our list of Drs for u to research in the health pages.

[jessiezbabez]

I'm not alone, and I'm so happy to know that. I have had soo much pain behind my eyes for weeks causing migraines. Feels like my eyes are gonna pop out of my face because of this chiari. I hate it. I wish the doctors would make it go away already. But its a relief to know there are more out there like me. 8/.

[selmaS]

  I agree with u on that, ad I am sure I might have more info if I went to the EDS specialist, just need a way there as it is out of state like my chiari NS was, and since I no longer  drive it is diff to plan a dr visit when they r booking a yr out....

[Colleen3726]

I havent had mine yet no.  I was hoping to ask on here if a lot of people found relief after surgery with the eye issues.  They just scheduled my CINE MRi..its not until August 1st.  I hope things go quicker after that test is done.  Wish there was an answer for us on the eye issues.

[selmaS]

  Well I do have all the issues u mentioned and being 3 yrs post op, can only imagine it is something that will always be with me....

  ...so u haven't had ur surgery yet?

[Colleen3726]

My first comment on this site was about eye problems with Chiari.  I have had dry eyes and right eye pain with many floaters for years.  I was sent to so many specialists, was diagnosed with retinitis pigmentosa but even with that diagnosis every eye doctor who takes a look in my eyes says..hmm you have a lot more vision loss than you have retinal damage.  I have peripheral vision loss, sensitivity to light, can not see at night, can no longer drive becasue of depth perception.  But the eye pain and dryness has always bothered me.  Even my Chiari specialist Dr Heilman at Tufts asked me which bothered me more my pain or my vision and I told him both equally.  He wouldnt really commit to telling me the right eye pain was chiari though or if surgery would help my vision at all.

[selmaS]

  I' not at this point, as they too seem to flare....sometimes they seem fine, only sometimes do they water like crazy.....I know EDS can flare too, so I am linking it all together....I have yet to get to a EDS specialist.

[Viva001]

How are you treating your dry eyes?

[selmaS]

  Not sure, I know I have dry eyes, but it is part of my EDS dx....and I was not told to use something like that....but, it comes and goes, so hard to say.

I have noticed it flares with the weather.

[Viva001]

My NP DD said to try Lacri-lube (she didn't know why they didn't give me this in the hospital).  It's OTC, used at night, & is thicker than regular eye drops.
The stinging could be due to dehydration (which could be due to the meds), and/or the thin corneas i was Dx'd with.

I've wondered if the eye pain is due to too much reading.

[selmaS]

  I know there r many more threads on the topic of vision and eye pain, so not sure what u r looking for except that it really has not changed much.

  Many have gotten relief from surgery, while others continue to have issues....

Some have developed ICP post op and that will factor into the vision issues as ICP and CSF pressure is a lot of the vision problems....but not all.....

I was not dx'd with ICP and still have vision issues that come and go like my chiari symptoms did...being 3 yrs post I figure that is how chiari is altering me and my life.

  

[Viva001]

Is there anything new on this topic in the last couple years?
My eyes--& vision-- had been bothering me before surgery (& motivated me for surgery!)  I think I had every test available (all normal), & was told to get OTC lubricating drops.

My very first memory post op is "OW, OW, MY EYE!!". They gave me antibiotic drops in the hospital, but I don't think I had an infection.  I have 2 things going on:  the pain/pressure behind my right eye, & stinging in the right eye.  I will bring it up to the drs, but I wondered about others' experiences first.

My vision has definitely improved since surgery; that was noticeable within a few days post op.

[Alicia696]

I get eye pain as well. I always have the eye doctor check my eye cuz I cant figure out why I have such pain. My sister gets it as well and I told her she needs to get checked for chiari cuz she has many of the same problems as me but where italian and getting us to do something is a joke ;)

[taylapj]

" Ice cream freezes" is the best description of it i can think off!! I had an eye test a couple of months ago, i have stigmatisation [sp] on my right eye, my eye sight has got worse over the past 2 years since i origanally got glasses but recent eye test she did the whole check after i complained of seeing 'purple'flashes when i get vertigo, no problems found apart from the stigma had got worse. I wonder if it COULD be related to migraines tho....

Interesting, i'll add it to the sympton list,

Thanks guys ;-)

[*Stormy*]

Me too...they are really awful...I feel like just holding my head when that happens. Come to think about it, I don't think I've had that for a few months now..hopefully another improvement from surgery?

I do still get the ice pick pain through my ears though but I kind of wonder if that is more related to muscle spasms around my temples and ears. Either way they all are not fun!!

Carolyn

[lu7997]

I have pain to the point that my eyes feel like they are being forced out of their sockets.  Other times I get what I call "ice cream freezes". Those are short bursts where the pressure types last days.      My optho said it was from pressure building behind because I always get floaters after and that she said was from the presure breaking off cells      I have found I lable everything to the chiari. But I am a nurse and can find medical connections for way too much.  Lol.  I use ice packs and a dark eye mask for th ice cream freezes. That really helps. ( the col is almost unbearable and painful but it seems to draw the pain receptors away from the head. And since it can be removed it seem to work.)

[selmaS]

Hi...eye pains are a big issue with chiarians as CSF pressure can affect our sight.It is important that u let ur dr know about this and get ur eyes checked to be sure there is not an issues involving ur optic nerves that could end up causing perm damage.

Let us know what u find out

"selma"

[taylapj]

Thankyou, I went to bed last night early as I just could not bear it anymore, it's not so bad today. Totally weird. X

[dermarfx]

Yes Eye pain, for me
Is none stop,I feel like from the base of my skull on the right side all the way over to the top of my right eye.
    To me I feel like something is putting pressure on top of my right eye.
Once things get really bad, this same Pain covers both sides of my head....
I wish you the best and hope that the pain/pressure goes away...