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Title: Another newbie here... Post by Spoon on Sep 5th, 2002, 2:37pm Hi all, Was just diagnosed with CH last week, here's my story... I run a business that is seasonal in nature and so, as usual, this past May and June were killer months. Couple that with some heavy involvement in a non-profit organization I was working with at the time... I was really burning the candle at both ends. That high stress period culminated on June 29th and I rewarded myself by attending an all day bluegrass concert on July 6th. The following day my troubles began. Woke up July 7th with a sore eye and a few days later had an infection that was treated with antibiotics. The infection cleared up just fine but a few days after that I developed a case of shingles in the same area. The shingles were treated with Valtrex and seemed to be getting better but on July 29th the headaches started. Even though the headaches were on the opposite side my Dr. attributed the pain to the shingles and prescribed painkillers which, of course, didn't work. Unsatisfied I returned to the Dr. a few days later to see if perhaps I had a sinus infection. He said I didn't but put me on another course of antibiotics "just in case." Still crawling across the living room floor every night at 9:00pm and 1:00am and reaching the end of my rope I decided to try the Dentist. Sure enough, she said I had four impacted upper wisdom teeth (the same two that everyone else has plus two extras, lucky me!). Finally, an explanation! But alas, having the wisdom teeth extracted offered no relief and I continued to have my nightly bouts with the beast only now I had the added pleasure of the post-surgical pain. One last desperate visit to the regular Doc got me a referral to a neurologist. When he told me I had cluster headaches I said "that's it?" I already knew I had headaches and what the hell is a cluster headache anyway? Very anti-climatic for me. The neuro swithed my then current BP med (Diovan) to Verapamil (180mg) and added Indomethacin (75mg) as well. Then I came home, did a Google search, and found you guys. The stories I read blew me away! The descriptions of the pain and symptoms were right on target with what I had been experiencing for the last month and at last I knew I wasn't loosing my mind. Just having a diagnosis, a name to put with it, provided some small measure of comfort. The good news is that within a few days of starting the new meds my headaches went away and I have now had four glorious pain-free days in a row. Whether this was a result of the meds or just because I was nearing the end of a cycle I'll not know until if/when another cluster comes around. One factor that may have hindered my regular Dr's. ability to diagnose CH is that I suffered from Horner's Syndrome a few years back so seeing me with the droopy eyelid was not unusual. That and the recent shingles episode. I recall reading that several others have also experienced these maladies and am wondering if there might not be some connection there. Anyway, just want to take a minute to thank all of you for being here, for sharing your stories. I wouldn't wish the beast on anyone but it sure is a good feeling to know there are others out there to whom I can turn for understanding. Thanks also to DJ for maintaining this site... I had some trouble signing up for the forums yesterday but an email to him quickly resolved the matter. And a final thank you to Dr. Avin for his diagnosis on my first visit. As I understand it quite a few have not been so lucky. Regards, Spoon |
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Title: Re: Another newbie here... Post by NancyMcFree on Sep 5th, 2002, 2:52pm Welcome to the board spoon. Glad to hear your clusters went away so soon after starting the right meds .... boy are you lucky !!!!!! The shingles ..... seen stories on that .... the stress .... seen stories on that .... each one of us is different but then again the same. You'll find lots of good info here. Keep reading, when you have questions - post them ... I am sure someone will be able to help. |
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Title: Re: Another newbie here... Post by Drk^Angel on Sep 5th, 2002, 2:55pm Welcome to the board! Sorry that the beast is grabbing your eyeball, pulling it out 'til the connective tissues are about to tear, then letting go to have it slam back into the socket. Welcome to the family! PFDAN......................... Drk^Angel |
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Title: Re: Another newbie here... Post by echo on Sep 5th, 2002, 3:03pm Welcome to the family spoon. Great post - lets us know who you are, how you got here and why you came. Sorry to read that you are having a problem with the beast. Very happy to read that you have been able to find the med combo platter that will help keep the beast at bay. Many of us need to do a lot of testing this and that to find the happy medium -- then the beast mutates and we start over. Again - Welcome |
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Title: Re: Another newbie here... Post by gtar_man on Sep 5th, 2002, 3:10pm Hi Spoon - your story took me back to my initial bout with the beast. I also went to the dentist and had a couple wisdom teeth pulled, which of course did squat for the clusters but gave me several wonderful days in hell afterwards. Glad the meds helped you so quickly - it ain't always like that; this rascal can yank your life up by the roots and stomp it in the dirt. Here's hoping it never returns; but if it does, we're here... G-man |
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Title: Re: Another newbie here... Post by Charlie on Sep 5th, 2002, 3:14pm Welcome to our madhouse Spoon. I had the same experience when I came here. I thought I was nearly unique. It's a mixed blessing finding so many Anyway, you'll likely find some good ideas and lots of information about handling this horror. Stick around and let us know how you're doing. Part of this is explaining this thing to others. Here is a link to Simon's letter which should help. Many of us print it out: http://www.ouch-uk.org/ch/note_colleagues.cfm Charlie |
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Title: Re: Another newbie here... Post by Jim R on Sep 5th, 2002, 3:53pm Welcome Spoon, Sorry you've got to be here, but glad you found us to help with the beast that's taken up residence in your head. You ARE lucky! Just like I was years ago when I was started on verapamil and it worked 2nd day! Many here stuggle to find something - anything that will help prevent or at least abort. Again. welcome. - Jim R |
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Title: Re: Another newbie here... Post by Jabeen on Sep 5th, 2002, 4:38pm Hi! I am new to this site also-it is both a blessing and a curse that we find ourselves here. Like you I was so relieved to put a name to my hell-3 doctors couldn't help, (one gave me eye drops, and one gave me sleeping pills!) but finally the neurologist knew immediately. I was lucky also that after a few misses I found something that worked for me. Then I read everything I could get my hands on. This site didn't exist then. Unfortunately after 5 years, they returned and I was so glad to find this. I am joining OUCH also-and bought a shirt. Good luck- Jabeen :) |
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Title: Re: Another newbie here... Post by 2late on Sep 5th, 2002, 4:52pm welcome to the board spoon & jabeen, glad u found us, ....................2late |
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