Hello all  :)

Was diagnosed in may, been a cluster for 14 years. Had my last attack late mars but have been shadowing since then, with shadowpeaks tuesday to thursday.

Had laser/elsa laser surgery done this friday and had protective lenses put in afterwards. I am allergic to lenses so I was supposed to take them out after 24 hours instead of after 4 days. But to my distress I couldn't touch the lens in my bad eye without getting a 2-3 minute long attack as a result.

Went in to the eye-clinic's emergency department this sunday where they poked and messed around with me screaming and crying as a result. Contact lens still in of course. Told them I had cluster and they just nodded and told me it could very well be painful but the lens had to be taken out.

Of course I left that horrible place, trembling and crying, and went home and tried again. Of course resulting in an attack. But I found out that I could point and dig around in the white part of the eye with no trouble but as soon as I touched the iris I got an attack. Couldn't see the lens myself with my foggy vision.

Went to my favourite place on earth yesterday, the neurology emergency clinic, where they of course told me they couldn't help me and sent me back to the eye clinic but with instructions telling them to give me oxygen, but with 7 liters/minute.

Went back to that horrible eye clinic and told them to NEVER EVER EVER touch my iris! And surprise! They got it out in a second! Got a mild attack 3-4 seconds after it was removed but aborted with zomig, shaken as I was.

Now I am feeling a lot better! But since I've now entered my shadow-peak I couldn't help but notice the effect my anesthetize eye-drops are having on my shadows. As soon as the drop's effect wears off the shadows come knocking and as soon as I take another dose the shadows dissapear.

Now I'm running out of drops and won't get a refill so I'm going back to energy drinks but I had to ask on the forum what you guys know about the connection between the iris and cluster attacks. I want to learn more about this horrible disease!

And THANK YOU for being here!! You have helped me so much!  :)

Excellent question!  I have no answers, but I'm sure Bob Johnson will be along shortly and educate us all.  I for one will be very interested in what he finds.  There are others as well who are much more versed in the medical aspects of CH than I, and I have an idea they will chime in as well.

Welcome to your new home!  Glad you found us, but surely wish you didn't need us.  You will find a tremendous amount of information available to you here, and if you have questions please ask!  There are no dumb questions, if they are honest questions, although you are sure to get some dumb answers. :D 

My first advice to you is to read the information in the "oxygen info" button to the left of the screen.  The 7 lpm recommended by your Dr. is probably not sufficient.  It works for some, but most of us need 15 lpm or more.  Personally I use 25 lpm, and I'm looking at going even higher.

All the best,
Jerry

Please tell us what lessons you have taken away from this series of difficult events.

It's impossible to give focused suggestions when we don't know what you need to know.

OUCH Sounds like you've had a hell of a few days at minimum Morran.  Welcome to the board and club that no one wants to be a part of. 

I can't answer any of your Q's but I'm sure after further explanation someone here will have some advice.

Make sure to check out the info on O2 !

PF Wishes to you!

Morran you have popped in and out about a hundred times since posting.  What's up with that?

    Potter

Automatic log-in on iphone and imac, to foggy vision to read properly and to lazy to update whole forum and thinking about how to formulate an answer whilst trying to cope with work, pain and sleeplessness.

Sorry.  :-[

Didn't find to much information except that the ophitalmic nerve is involved in cluster. And how and why I guess nobody knows so I'm not really sure what I should ask..

If anyone knows of any studies regarding the ophitalmic nerve in cluster, I would be really happy if you would care to share.

For now I'm in need of sleep. Thank you for your replys!

hay Morran

I'm extremely photosensitive when I'm having an attack/strong shadows and most of the time in-between when in cycle ,wonder if that pain is caused by the eyeriss trying to shut out the light and therefore would be painful to touch as well ? Just a thinking that it could be the same mechanism .

God bless

Nigel

i has laser surgery last week  ( Iridotomy )   
the pain... yes it hurt like flicking rubber bands on my iris and has slowed now but still very light sensitive.   have had sharp shadows since stronger and more irregular than usual.

Every  eye specialist appointment has been painful.  eye checks.  lenses etc   all very sharply sore. 



hang in there  it will ease up . 

best wishes