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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello, and thanks for being here!
        
(Message started by: moonspender on Jan 26^th, 2007, 11:55am)

Title: Hello, and thanks for being here!
Post by moonspender on Jan 26^th, 2007, 11:55am

Hi

My name is Tim, and Have been suffering from ch for almost twenty years. I just wanted to thank the sight for finally letting me know that you have to go to a neurologist as opposed to a GP. This guy knew exactly what the heck was wrong with me. Most of the other doctors just looked at me like I was a junkie looking for a fix.
I have tried just about everything, I guess, to get relief. Sometimes they worked the first time or second, but never long term. I get the ch in January anf Jul/Aug like clockwork, usually lasting for a week or two. Headache or two or three everyday, usually between 6pm and 8am, lasting two to eight hours. Behind my right eye, like so many of you...ungodly pain, thoughts of suicide, etc. This time, they started going into the third week before I found this site, and made my way to a neurologist. I'm now on litium and prednisone, with DHE spray, and methadone for a parachute.
The DHE spray worked! No headaches for three days!
I also took one pill of metadone, just to make sure Iwould sleep through the night. The only downside is the nausea from the lithium...very, very, bad! But I'll take it compared to the ch, without a doubt.
I've tried imitrex, maltax, etc, and a bunch of other crap that didn't even scatch the surface, but this seems to be doing it for right now, and perhaps I've broken the cycle.
Just wanted to say I'm glad there is this site, the support helps.

Tim

Title: Re: Hello, and thanks for being here!
Post by vietvet2tours on Jan 26^th, 2007, 11:59am

Hate sounding like a broken record but I don't see oxygen listed when ya say ya tried everything

Title: Re: Hello, and thanks for being here!
Post by Broken on Jan 26^th, 2007, 12:09pm

Welcome my new friend. Sorry you have to be here but glad you found us. Listen to those here and they will help you. If you need to talk, bitch, whatever I'm here. Hang in there.

Broken

Title: Re: Hello, and thanks for being here!
Post by artonio7 on Jan 26^th, 2007, 12:26pm

Welcome Tim,

Wow 20 years!!!! Sorry to hear that. But it sounds like you're a survivor and I admire you're courage.

Be prepared to be supported in ways you could never imagine.
Focus on the pain free times. Keep your chin up. Never hesitate coming here to ask questions, there's are allot of sound advice. Glad you found a neuro that's helping you.

Hope to see you here more often.

with warm regards,
Tony

Title: Re: Hello, and thanks for being here!
Post by Guiseppi on Jan 26^th, 2007, 3:39pm

And yet another scratched record suggesting oxygen!!! I also use lithium as a prevent when on cycle, I'm lucky as it's never made me nauseous. As well as it works I still keep the oxygen bottle handy because it almost never fails me! Welcome abord and hoping you have a short cycle this go around.

Guiseppi

Title: Re: Hello, and thanks for being here!
Post by BB on Jan 26^th, 2007, 5:21pm

Hello and welcome,

Hope you will stick around and share your experience to help others too.

Painfree wishes to you.

Annette

Title: Re: Hello, and thanks for being here!
Post by moonspender on Jan 26^th, 2007, 5:56pm

Sorry about that! yes, I've tried the Oxy before. Worked for two hc (in a row) and then zilch, ended up back in emergency.
Just got off the phone with the nurses, they are supposed to call me back, the nausea is getting soooo bad that I got to get off of it. Still have the spray and the methadone if one gets out of the box.

Thanks for all of the kind words from all of you!

Tim

Title: Re: Hello, and thanks for being here!
Post by Nancy on Jan 26^th, 2007, 10:27pm

Tim, I know how you feel. I have been getting clusters for 30 years, but didn't know what they where until 9 years ago. they told me they where migraines and gave me meds that didn't help. Now as soon as my clusters come back I go right to the neurologist and get on prednisone. Within a week my clusters stop, but I still take them meds for the full 15 days. I was on oxygen for a while, but it didn't seem to help very much. I just got done with my prednisone last week and my clusters are gone again. I just hope they stay away for a long time! This was the first cluster I got in 3 years!! I pray you have luck with your treatment.

Nancy

Title: Re: Hello, and thanks for being here!
Post by moonspender on Jan 27^th, 2007, 12:30pm

Went off the litium last night; I just couldn't take the puking. No headache, but I kept the spray and the methadone in hand all night. Woke up fuzzy, but pretty good. Nancy! 30 years! You got me beat! I hope they never come back, and I would hope that for all of you. Nobody deserves this.

I hope everybody is well

Tim