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. 

Quite a few of us who have had CH for an extended period of time seem to have a bit of Horners hanging on all the time.  Some have it more pronounced than others.

Glad you get to speak to the Neuros!  Don't worry about impressing them or knowing all the answers.  I'm just glad they will listen to what you have to say to them.  Remember, an honest "I don't know" is a good answer when you don't know.  Just tell them what your experience has been.

Jerry

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

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. ...fickle demon...this beast. Not every clusterhead experiences horners...myself, only during heavy hits. But then, the pupil on affected side is apparently permanently constricted. Opthamologist brushed it off as inconsequential....tho had no idea what ch was, nor was interested.... 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.  That there...is a dream come true...there's a few thousand clusterheads who WOULD relish this opportunity! Most neuros get so little training in "headache" ...and ch?..basically nothing. The opportunity to educate them...for the benefit of your fellows...WOW! Please go...tell 'em everything...don't let them leave without at least the most basic understanding...THIS IS PRICELESS! Best, Jon

I prob should make it, its own post.

Regardless the more people that can chime in now... the better as its tmw, very last min

Josh,

Who are the neurologists, when and where?

Have you tried oxygen therapy at flow rates that support hyperventilation?  How about the anti-inflammatory regimen that's proving to be 80% effective in either reducing the frequency, intensity or duration of CH attacks or resulted in a CH PF remission?

Take care,

V/R, Batch

Batch,

Yes I have done your regiment but as to if it is helping, its hard to discern since I have been doing so much on so many fronts.

I got the special mask, but dont know if its hooked up right and I tried but alas fiddiling with things for lack of a betetr word is not my forte, besides my regulator only goes up to 15...

The nueros were literally 15-20 nueros from Lennox hill hosptial in manhattan... Every week, they all get together to discuss something, once in a while when a doc has an interesting case they make that the subject of the conference.

They want me to do a 7 day taper of prednisone (I did a 10 day taoper before and havent had a hit as bad since) and also start on verapamil.

What has really peaked their interest is the horner syndrome that I have constantly even without having a hit, although I do have constant shadows.

Hopefully many of these doctors will educate themselves about CH a little more now that this has happend. The ysaid I was very articulate and knowledgable in describing my symptoms and I owe much of that  to you guys.

Ill keep you posted

J

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

Batch, Yes I have done your regiment but as to if it is helping, its hard to discern since I have been doing so much on so many fronts. I got the special mask, but dont know if its hooked up right and I tried but alas fiddiling with things for lack of a betetr word is not my forte, besides my regulator only goes up to 15... The nueros were literally 15-20 nueros from Lennox hill hosptial in manhattan... Every week, they all get together to discuss something, once in a while when a doc has an interesting case they make that the subject of the conference. They want me to do a 7 day taper of prednisone (I did a 10 day taoper before and havent had a hit as bad since) and also start on verapamil. What has really peaked their interest is the horner syndrome that I have constantly even without having a hit, although I do have constant shadows. Hopefully many of these doctors will educate themselves about CH a little more now that this has happend. The ysaid I was very articulate and knowledgable in describing my symptoms and I owe much of that  to you guys. Ill keep you posted J

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. 

yea, they just wanted symptoms

one thing that was really odd was that they really focused on the sinus headaches I used to get when I was younger..

I told them I went to an ENT guy who stuck the thing wayyyy up there and he said my sinuses were fine... but hey Im not a doc...

like I said they are most concerned about my horner

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 :)

Steph45 - I know exactly how you feel with the droopy eye and self esteem, having photos taken etc. My eyelid is slightly droppy all the time and when in cycle it is very noticable, infact my family only have to look at me to know if im having a bad time. My eyebrow also lifts and sits about half a cm higher which is very odd . I know this is all vanity but when your feeling rough this doesn't help. I am on Batch's D3 regime which is working great for the pain but I know I am still in cycle  (about 14 weeks now) because I still get the droopy eye, raised eyebrow and numb nose.
Lovely wedding photo x x

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

yes.... its def a self esteem issue.... but the docs thought it was odd that I have it when not in any pain at all...

honestly... I have to feel that that Im not going to live with this my whole life. CH headaches that is.... I just feel like its going to go away I dont care what people think or say... I will keep trying until I find something that works for me.

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.

how much d3 are you guys taking throughout the day?

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

how much d3 are you guys taking throughout the day?

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

how much d3 are you guys taking throughout the day?

Im taking 10,000iu D3, 2000mg omega, 500mg calcium, 250mg magnesium and 25mg zinc in the morning and 4000iu D3 and  1000mg omega in the evening - the morning dose just wasn't quite enough.
Sarah

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

I'd give you my own personal regimen, but I only take 1,000 IU per day (along with vitamin E and a B-Complex). I haven't needed to see if it would keep the beast at bay.