Hi, I have only posted here a few times. I started having headaches in july after the birth of my baby. I lost my health insurance and didnt get it back until dec 1. I had every symptom of cluster headaches, one sided, droopy water eye, nasal congestion....worst pain ever. (up crying every night)
My dr (i had to pay out of my pocket) put me on sumatriptan nasal spray and the imatrex injections aswell. I couldn't afford the injections , but I payed for the spray.      Once my insurance kicked in I went and got the injections, was put on verapimil,and was also put on O2!!! Finally. When None of these worked I came here to see what I was doing wrong. I thought there was something wrong with the mask...who knows!!
after six months of terrible headaches (3-4)(waking me every night) My sister in law who works for a medical research company came home w all this info on cluster headaches and the medications I was on. She had highlighted a small paragraph PAROXYSMAL HERMICRANIA..I read on...often misdiagnosed as cluster headaches...It Can be treated by taking Indomethacin.. couldn't even believe that there might be a cure. The next day I went to my dr with this info and he put me on Indomethacin (50mg)three times a day 150mg. From that night on I have yet to have another headache...
I went to see a neurologist today. He said I have all the classic symptoms and to continue on the Indomethacin. . I am going in for a MRI to be sure.
I just wanted to share this info with all of you. # 1 because of all the support you all gave to me when I had questions and needed support. also because I wanted to put this out there..I'm sure there are people like me that are dealing with this pain w/o insurance or have yet to be diagnosed. My dr told me I had every symptom of CH. I went on thinking I had them for 6 months and all the meds weren't working..I was beside myself. Nothing was working for me. Hopefully this is all I have. And I can move on. I can't imagine how you all feel. Please know I think of this board all the time..it was great to just come and read what people had to say..it helped me through when I needed it. Thanks

Thanks for your report. You so clearly make clear why getting a solid diagnosis is so difficult--no only because the symptoms overlap but because so many of our docs don't have the training and experience to see the subtle differences in headache types.

But do stay with us and report our continuing experience.

Since Indo is so cheap, anyone who thinks they have CH and doesn't try Indo first, on the chance it may be CPH and not CH, is nuts!

Bob P wrote on Feb 6^th, 2010 at 7:48am:

Since Indo is so cheap, anyone who thinks they have CH and doesn't try Indo first, on the chance it may be CPH and not CH, is nuts!

I wish I had know about CPH. I would have saved myself alot of restful nights and painfree days!

This is especially true for women since they get CPH more frequently than men at a rate somewhere between 3/1 to 7/1.

(and we all know about women and CH)

Bob Johnson wrote on Feb 5^th, 2010 at 5:58pm:

Thanks for your report. You so clearly make clear why getting a solid diagnosis is so difficult--no only because the symptoms overlap but because so many of our docs don't have the training and experience to see the subtle differences in headache types. But do stay with us and report our continuing experience.

Agree, Bob.  Importantly good post.



Other Bob, too.




Bob P wrote on Feb 9^th, 2010 at 7:28am:

(and we all know about women and CH)

shut up, Bob.        ;)

I was diagnosed with CH at 19 (now 49).  I was headache free from 1999-2008.  Nine wonderful years!  I had always had my series of CH on my left side.  In 2008 I experienced a new set of symptoms, on my right side this time (droopy eye, burning-needling acute sensation on the upper right quadrant of my head).  No CH during the first 3 months of the sensations.  I was upset when my (new) neurologist diagnosed these symptoms as CH.  This could not be CH!  There was no acute attacks!  Only the never ending burning sensation coupled with the red, droopy eye.  I found the CPH info and convinced my doctor to let me try indocin.  I did not tolerate it well at all.  After an ER visit, I stopped taking the indocin.  Then in August a very real CH series began.  I have been controlling the attacks ever since with 240 mg verapamil er 2x daily and 120 verapamil before bedtime.  I continue to also rely on gabapentin (up to 900 mg daily) to relieve the burning sensation. 

I probably shared just to be sharing 8-) as the duration of this has me in the saddest of sad frame of mind.  A schwannoma tumor was discovered during the MRI.  I cannot believe I am so unlucky as to have all this in my head!