So you guys are aware of horner syndrome... when your eye droops.

I get it constantly now, even when not having hit and or with light shadows. The nueros think this is extremely odd considering I dont have a brain tumor and am not having a major hit

I was wondering what anyone else's experience with this is? please be detailed and specific.

I was invited to be the subject at a small nuero conference. I dont relish the fact that I am goint to have to have questions fired at me by 15 docs but its better than a headache right.

Joshl924 wrote on Apr 25^th, 2011 at 10:52am:

Joshl924 wrote on Apr 26^th, 2011 at 12:47pm:



Good for you to do it and educate those docs!
And good of those docs for working to get themselves educated!

It sounds like it'll be an interesting time. 
Just remember, they won't be expecting you to know facts and figures and give them a slide show on brain pathophysiology - they'll just be wanting your experiences.

Hi Joshl924....regarding Horner Syndrome, I have it all the time time now....worse when in high cycle , my left eye nearly completely shuts,eye very droopy.
Over the years with having so many repeated CH cycles, my left eye is permanently droopy.....
It bothers me sometimes when i see a photo thats been taken and my right eye is bigger and my left eye lid is droopy but i live with it........but i dont think others really notice because everyone is just too busy with their own lives to look that closely.....
I have often gone into work in severe pain (kip 4/5/6) no one see's, no one notices  so a droopy eye gets no attention just knocks self esteem sometimes

Hi oxyrunner Thank you......

For my Ch i use:

O2 15lpm with non-rebreather mask (not the nhs one - brought from CH website usa)

Imigran injections

Magnesium

Kudz

Melatonin 9mg (every night regardless to being in cycle or not)

Redbull type drinks - i use Morrison's own brand - 4for £1 lol!!

My worst hits are always 1am.....so the Melatonin for me as been a big help and the o2.....injections help sometimes too but as you know sometimes nothing helps but have to hang in there .....and i do......we all do....some how we manage to cope with the most severe pain known to man ......no one apart from fellow ch'ers and closest to them.....know that, or believe that ....

I'm in cycle again week2.....baited breath as each day passes ......last few cycles have been 8-12wks.....take each day as it comes.

Recently since January this year i have another "oddity" with Ch .....my head feels like its vibrating when i lay down ....have spoke to my neuro about it and said it was "nothing to worry about" Even when not in cycle my head vibrates ....sometimes its low other times its really high.....i know its my the nerves in my head thats tingling but it does drive me crazy at times......

I get the nerve pain in my eye/nose as well - as each day/week passes it intensifies to the whole left side - in my eye/face/nose/back of head/down neck into left shoulder

Do you mind telling me about how you treat your CH.....Batch D3 regime? Do you live in the UK?

Thanks, Steph

There has been reported here many times what has been called a “phantom attack”.
During these episodes there is the tearing eye, drooping eyelid and running nose but no pain.
Nobody seems to know the what or why it happens but just that it does.

Joshl924 wrote on May 2^nd, 2011 at 2:42pm:


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Yea.. I knew the dosages from batch's regiment, I just wanted to see if you guys were going nuts with it...