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        Cluster Headache Help and Support >> Cluster Headache Specific >> Change in cluster pain
        
(Message started by: sninja on Oct 6^th, 2007, 10:41pm)

Title: Change in cluster pain
Post by sninja on Oct 6^th, 2007, 10:41pm

I have had cluster headaches since my late 20's they always started with an itchy left eye socket for the first 4hrs, next 4hrs my left nostral would drip & run (yuk)
next 4hrs the very back of my left eye socket would hurt (same type of pain as a regular tension headache but only in the back of the left eye socket). The second day my pain would radiate out the back of the left side of my skull run down left side of my neck & into my left shoulder. This would come & go for weeks. My clusters stopped when I started Zoloft which I was on for years. About a year ago I stopped Zoloft & headaches came back for awhile but then stopped. BUT NOW THE LEFT EYE PAIN IS BACK THIS TIME IT IS REALLY DIFFERENT BUT SINCE IT IS STILL IN MY LEFT EYE IT MUST STILL BE CLUSTER SYMPTOMS BUT THEY HAVE CHANGED. NO IT IS ALMOST CHRONIC...WAKE UP WITH ONE EVERY NIGHT AROUND 3AM TO 4AM...MY LEFT EYE HURTS NOT THE SOCKET THE ENTIRE EYEBALL, ALSO MY LEFT EYE LID DROOPS DOWN LIKE MY LEFT EYE IS HALF CLOSED THE EYELID PROBLEM COMES & GOES EVEN WHEN I AM NOT HAVING LEFT EYE PAIN. MY EYEBALL JUST FEELS SO SORE EVEN IF I PUSH ON IT. THE EYE ALSO BURNS. Anyone ever experienced cluster headaches that have changed.....Still always the left eye never in the right.
thanks for any input.....

Title: Re: Change in cluster pain
Post by Bob_Johnson on Oct 7^th, 2007, 7:31pm

Not at all unusual for the quality, severity, frequency, location, duration of pain to evolve over months/years. This is probably most true during the early months/years of CH but with some kind of stability emerging over time--but I've never seen this experience reduced to statistics.

Title: Re: Change in cluster pain
Post by sninja on Oct 8^th, 2007, 1:19am

Thank you so much for responding to my message. I suffer from alot of anxiety & am a hypochondriac of sorts. The change in my cluster headaches sent me into a tail spin of worry that maybe I had some horrible eye disease that would lead to blindness, like glaucoma or something similar. I am even afraid to go to the eye doctor to find out. But I kept telling my self I have had cluster headaches since my late 20's & am now 52yrs old
that even though the pain is totally different it is still in the left eye as always & the pain starts around 3am to 4am each morning which is the norm. Again thank you so much for taking the time to reply to me. I feel alot better. Take care....

Title: Re: Change in cluster pain
Post by Emily on Oct 8^th, 2007, 11:21am

Hi Sninja,

Don't be alarmed by the change. I have only had ch for 6 months and in that period (up until about a month ago) the symptoms and the pain changed regularly. This obviously made it very difficult when I was seeing a consultant once a month and when he asked me how I felt, it would often be different to what I'd told him on the previous visit.

From what I've read here, other people have experienced similar things, with the clusters going away for years and then coming back with new symptoms.

Make sure you keep a diary in case you have to see someone for new meds and they are not clued up about CH.

Em

Title: Re: Change in cluster pain
Post by mynm156 on Oct 8^th, 2007, 3:39pm

The evolution of cluster is on on going never ending dance that seems to do it just to mess with us. I honestly feel that it just will not be denied in some of us. What works one day or at least helps wont work the next. I have over the last 14years of this have had numerious changes. Sometimes its my right eye mostly its my left. Sometimes there are FLOATERS sometimes not. sometimes its like my head is in spasm and just wont quit but the one thing that has stayed constant for me is this site. There is a wealth of knowlege and ideas here use it you might find something that helps.

Good Vibes

MYNM156

Title: Re: Change in cluster pain
Post by Miz_D on Oct 8^th, 2007, 5:39pm

Hi,

Yep, this 'change' is happening to me right now also after 8 years...what a crazy and elusive creature the beast is!

Hang in there and do keep that journal...it's totally invaluable! Suggest to see your neuro again as you may need change in meds.

Title: Re: Change in cluster pain
Post by George_J on Oct 8^th, 2007, 7:45pm

Quote:

WAKE UP WITH ONE EVERY NIGHT AROUND 3AM TO 4AM...MY LEFT EYE HURTS NOT THE SOCKET THE ENTIRE EYEBALL, ALSO MY LEFT EYE LID DROOPS DOWN LIKE MY LEFT EYE IS HALF CLOSED THE EYELID PROBLEM COMES & GOES EVEN WHEN I AM NOT HAVING LEFT EYE PAIN. MY EYEBALL JUST FEELS SO SORE EVEN IF I PUSH ON IT. THE EYE ALSO BURNS.

Doesn't sound too weird. (To one of us, anyway. ) The eyelid drooping thing is Horner's Syndrome. Most of us get it.

Just don't go scrabbling around at your eye too much--there's nothing back in there that you can fix.

Best,

George

Title: Re: Change in cluster pain
Post by Miz_D on Oct 8^th, 2007, 8:45pm

on 10/08/07 at 19:45:05, George_J wrote:

Just don't go scrabbling around at your eye too much--there's nothing back in there that you can fix.

That's the funniest thing I've heard all day...thanks for the chuckle, I definitely needed it!