It has been years since I have been on this web site.  All because of a "cure" suggested all though years ago, by a member I no longer remember.  It turns out I have CPH, and the indomethacin has worked like magic.

What brings me back is I have knee surgery this Friday and had to stop the indomethacin for a week prior to the surgery.  Man, did I forget what the headaches were like.  It has been miserable.  I never thought I got past 8 on the Kip scale, and maybe part of it is detox symptoms, but I have had fantasies of suicide.  Don't worry I am not going there, I know I have only until Friday and I can start taking the indomethacin again.  But this got me thinking about all the other sufferers out there.

If I can help anyone else out by mentioning CPH, and get them the relief that I have found.  I would have paid back a little of what has been given to me.  

As I said, it has been a while since I have been here, and I plan on searching the site next for other indomethacin posts.

Wishing everyone a pain free day.

Hi Russel,hope your knee surgery goes well on Friday. What are you having done?

I've never heard of the indomethacin treatment so please post the information on it if you would be so kind.

All the best. Iddy

I could cut and past a lot, but just google search on CPH and Indomethacin.  There will be many hits.

Indomethacin and CPH are like litmus tests for each other, and the drug is the silver bullet for  CPH.  If it does not work, the CPH is unlikely.

Indomethacin is an anti-inflamatory/analgesic (I think).  It must be taken everyday, at least in my case it works this way.  I feel the shadows within 24 hours of stopping the med.  It is not without side effects, mainly bad for your tummy.  I take prevacid to counter that effect.  I have been taking it for maybe 4 or 5 years now.  My doctor(s) have tried to vary the doses, but I always arrive where I am, 1 120mg la tablet each morning and night.  I take like  25mg (??) prevacid each time as well.

CPH is not a very common type of cluster, and is less common in men.  That said, I am male, and the indomethacin seems to work like a switch, well it takes about 24 hours.  And I only get a few shadows, which may be only normal neck and sinus allergy related pain.

Oh, I also went and checked the Kip scale.  It is a little different than I remembered. Seems like there was a scale that was 8 - thoughts of suicide, 9 - planned for suicide, 10 - actually tried suicide, or something like that.  Either way it still works.

Edit:  Ooops sorry, I am having my miniscus snipped.  It should be quick and easy. ... I hope.

Glad to hear you found something that worked so well! We talk a lot about how critical the right diagnosis is, what works wonders for your CPH is worthless for CH, and they seem so closely related! Hoping you can get back on it soon.

Had my right knee done 10 yeras ago...orthascopically  (sp?)....was back at work in les then a week. Wishing you luck!

Joe

You ae right, the indo is worthless,  AFAIK, for anything other than a true CPH, which is differant than the "traditional" cluster.

The knee surgery went well.  He did clean a little, so my recovery time went from a couple of days to a week or more. Hopefully it will pay off with a good working knee.

I got to start the indo yesterday once I got home at noon.  My CPH is gone now, and what a blessing that is.

My hope in posting this thread, has been in case there are any CPH'ers "lost" in this CH forum, that could benefit from indo as I did.  I am not knocking forum at all.  It helped me get the help I need, and I am trully grateful.  If anyone thinks I should add a post to any other forum group, let me know.  I do not want to appear to be spamming.

WEPFDAN

Russell, your post was very appropriate.  Thank you so much for sharing!

:)mel

Oh not SPAM at all! An informative post with extremely valuable information. Wishing you smooth sailing on the knee!

Joe