Hello Kellie,

I'm glad you found the board- welcome- sorry you have to be here though.

There is some great info here- read all you can and try to be proactive about your condition- but there's also tons of support. Talking to people that understand your pain can offer some great relief and it's also a way some of us manage. It is also of great importance that you find a doctor that knows how to treat clusters and build with his help a defense line against these things.

I would suggest that you start a new thread where you could share some more information about yourself ( like how long you've been in this cycle, what medication have you tried, if something had worked in the past etc) so that you'll get more responses from more experienced sufferers than myself.

Again welcome to the board,
Perry.

Bodge wrote on Sep 26^th, 2004 at 1:39pm:


If you look at your thread you will see there is an apology, savior in it cause it dont happen often my friend ;

.....................................jonny

Getting to know the site and marvel at all the support and information. It's truly amazing and of considerable help. Have a friend who lost his left arm in VN and has suffered with what sounds like CH for the last 32years.
Never really understood until now.  I see my MD again
this Friday morning loaded with knowledge gleened from this site. Thank you, Thank you, Thank you.

Phil

TO "WELCOME," the woman who is trying to help her husband and asked about Sansert.

I took it for a while, and indeed it aborted the cluster attacks.  However, for me the side effects were too much to  keep on with it.  However, of course, everyone is different, and your husband may tolerate it well.

He should know, however, that periodic blood work is necessary when taking Sansert, because it can cause fibrosis of various organs.  The drug is a (very) close relative of LSD.

Sorry you and he have to be here, but welcome anyway, and many wishes for the pain to end.

Writer.

Hello...Finally! After reading some of these letters from the home page, I have have found home. My name is Toby. I'm from Hickory, NC. I'm going on my 5th week of attacks. I'm exhausted.

I've been a member since 2002.never relied much on this forum,even though I watch it intensly.But now I need help.I've been released from my position at my job for filing disality due to ch.I've been offered to stay with my company with a 2/3rd cut in pay.They didn't outright say it was because of my ch's but due to "lost time & lack of performance"Come on lets get real.I need legal advice.Is there any lawyers that you know of who can help me? I'm still under disability.But financiley I can't hang on much longer.Any help would be appreciated.
Thanks.
I wish I could find spell check on this message board.
Happy Holidays

Welcome, bang your head, and I'm sorry you're here. I'm glad you found us. We're a nutty bunch that really understands your pain. 

Hey, WOW...glad to have found this site so far. I am a female CH sufferer...have been for about 25yrs. I had been CH free for 3 years until just a  few weeks ago....just on time for christmas!!! I thought I was over this hell. Has anyone else had long absences only for the monster to return? I am sooo depressed! Is there a chat group on this site?? I really need someone to chat with..........

thanks!!

Cece

Hi Everyone,

My name is Steve and my wife is Doreen.  My wife is the one with the curse of head pain.

My wife has had head pain since August this year.  Originally the pain started on her right side (she describes it as pain deep within her ear).  At first it came in the afternoon and got to lets say a 5.  We went to an oral surgeon specializing in head pain.  He gave her shots of Lidocain all the way in the back of her mouth which gave her temporary relief for a few hours.
It increased in its intensity and I admitted her to the hospital.  None of the pain meds that they gave her worked, morphine.  The only thing that at that time brought any relief was a shot by a dental resident in the mouth.  They released her after three days and after taking MRI's catscans, X-Rays etc. of the head and brain.  Everything showed negative. 
A week later we were back at the hospital.  Same result and this is now the 1st week in October and NO ONE has diagnosed what this damn pain is.  We went to ENT's, a  Pain Center  who prescribed fentanyl pops and duragesic patches etc. and neurologists one of which recommended a nurosurgeon in NY who specializes in head pain and is supposidly well known (Lawrence C. Newman M.D. ,St. Luke's-Roosevelt Hospital.  We saw him on 12/20/04 and within 15 to 30 minutes he said she had Cluster Headache. He prescribed a medicine Indocin which ripped up her stomach and made the pain worse and she vomitted for 36 hours ending up with Gastritis and in the hospital that night.  We called back and he then said she had to take it and to take sucralfate to keep it down.  That worked to keep it down but the pain within 35 mins got worse.  The latest script was for Verapamil -120mg.  Well this was taken this past Tuesday and 4 hrs later her head pain exploded to a level which left her screaming.
If this is Cluster it has to be a mutant form of it or something else or both.  I think from what I have read the next form of treatment should be the Oxygen.  I did get a prescrition for Imitrex spay but I'm hearing that it should be monitored while taking it....I don't know anymore.  Help us with any thoughts you may have if you can guys!!!
Thanks in advance for any help you can give.

Steve  (Sorry to be so longwinded)

Hello everyone this is my first time on this site and I am and happy that i found people that crawl on the floor and yell Like i do (a way to go!) On a more serious note I just came back from seeing my neurologist and he prescribed predisone, have that worked for anyone, i know i haven't had a bad one since i took them, maybe they do work, I not going to jump up and down yet, then i might be dissappointed. I need some feed back and for each one of you that are a clustie- God got your back. Keep prayer. write me someone!

Myke Myke -Philadelphia

Hi everybody!

Been checking out the site since last week - learned so much about my 'problem' - signed the guestbook- was surprised and moved when one of you wrote to me.
Today, I finally cruised this message board and learned so much about you!!
Although I don't feel very social right now - 'strong threatening shadows' when I thought it was over -  it's a relief to know that you great people are here!
I sure hope I can make somebody else feel this way someday.

Kitlulu (Kathy)

Hi, i'm 39 and female from WV and new here, my CH's just started this past week. ( I think they are CH's) At first, it really freaked me out, after the 3rd CH hit, I thought i was having an aneurysm, after extensive research, i'm hoping it is CH.  I've had five espisodes in the last two days, and dreading the next one.  I tried to explain to my husband what the pain was like, but i couldn't put it into words.  Just that it hits out of nowhere.  My "episodes" only last 10 to 25 minutes, always over my right eye.  I'm nausous and I can actually feel it throbbing if i place my hand over the area.  Does this sound like CH?