I've been surfing CH.com for a little over a week now, finally cleared my head enough to register. First, let me start off by thanking the webmaster and mods for maintaing an amazing site. Even tho this is my first post this site has answered a lot of questions i've had this past month.

On May 29 my Thursday started off as usual. No work for both my g/f and I. I decided to take Abbie (my dog not my g/f!!!) for a run at the park and came home and made plans to go to nyc and meet some friends for a drink, and proceeded to get ready. Jumped in the shower and suddenly i began to get a weird tingling sensation in the back of my neck. About 1 min later i was crawling out of the tub feeling the most excruiciating pain i have ever felt in my life.

I next found myself bare naked on my bathroom floor, so disabled i couldnt turn off the showe, grab a towel, nor even call for help. I just sat there for a few min in the soon to become all to usefull fetal position.

Well once my g/f helped me reach the bed and throw on some clothes, it was off to the ER. Once we reached the hospital the pain was so bad my legs were to weak to walk. Once i was put in the bed they stuck me with all kinds of needles as my heart rate began to flucuate.

Once the doctor came in he didn't seem to take my situation seriously. Once the attack ended he precribed me Motrin and sent me on my way even tho i still had a lingering headache.

Once i made it home i went directly to bed only to be wakened by the same throbbing, stabbing, disabling pain as the previous day. Wanting to be taken serious i begged for an ambulence, and once again off we were.

Of course it was a completly different shift at the hospital and i had to be reregistered, retested (eeg, cat scan etc.) all test came out negative and the new doctor recommended a spinal tap. Just when i thought i was in enough pain i had a 6 in. needle inserted into my central nervous system. Only to reveil absolutely nothing.

Once again i was sent home, this time with some slightly stronger meds. Only to wake up the next morning and repeat the process once again. This time coming home with a prescription for valium, among other narcotics.

After spending my Thurs, Fri, and Sat in and out of the ER, Monday finally came and i was able to visit my GP. He was first to mention a disability he had heard of years ago called CH. He was hesitant in diagnosing me as he was not a nuerologist so he recommended me one, and he prescribed treximet.

So i made it all the way to tuesday morning without any major attacks. Visited 2 nurologist just to get an extra opinion. The first diagnosed me with common migranes, and the second said it was to early to tell what exactly i had, and of course prescribed more meds.

Well by Wednsday my g/f had to go back to work and was to worried to leave me home alone. So off to grandma's i go. This day was byfar the best day i had by far, no major attacks, no minor attacks, just a slight headache and a very sore neck.

I watched all of game 6 of the stanley cup, which ended by a close call shot which would have tied the game with no time left. All in all i was excited by the game and jumped up and out of bed to yell, my  team had lost.

As i sat back down i was occupanied by a massive attack. The worst one yet, and once again off to the ER. This time we went to a different hospital. Upon arrival i was visited by the doctor, who told me i was to be admitted, and sedated until the next morning. Well the sedatives helped as i was to high to feel any pain, but in turn had an adverse effect on my heart. As it almost stopped, (or so i was told) as the drugs were counteracted the pain came back immediatly.


Well i stayed here for four days in room 529, saw two more doctors and to more neurologists. Had another Cat scan, mri, and all the other goods. Only to be told that there was no more they can do for me there and sent me home, with more drugs!! This time 500M.G. vicodin, steroids (6 day pack) and more.

Now its been over 2 weeks and my house looks like a pharmacy. Yet the headache is still there, and im sick and tired of being drugged up all the time. I have pill to counteract the sideeffects of the other pills.
Its a neverending cycle in which i finally decided to get out of. Im done being a zombie and so no more narcs. for me. The pain is progressivley getting better, or maybe im just getting used to it, but nevertheless its still there.

This morning once again it was back in full effect. and i just paced my house for about an hour, while Abbie just stared at me. Trying to be as quiet as possible, as to not wake up my g/f because she too has been through enough with this whole ordeal. Finally i was able to get back into bed two hrs later and rest my eyes, as sleep was impossible.

So here i am now writing this, which i know is way to long for almost anyone to read on a message board. And i completly understand that, but i its the first time i have written this whole ordeal out for myself. And for that oppurtunity alone i thank CH.com as i feel a little better already.

Doctors got their asses kicked.
Get some 02 and become friendly with caffeine.
Here are some common treatments
[url]http://www.plainboard.com/ch/chtherapy.pdf[url]
Dump the narcotics they dont work for CH anyway.
all the best
thebb

Running is a trigger for me (as well as some others here) when in cycle. If I run for 50 minutes or longer - BAM! - I'm hit within 10-15 minutes. Before I was diagnosed, I was in the ER a couple of times in my running clothes. Boy, did they treat me like a nutcase. No makeup (I'm a girl) sweaty, shorts and a tank top at night. They thought I was drug seeking - I could tell. I was asked why I was wearing shorts on a cold night in January. I was in too much pain to tell them I had just left the gym. Even though I was not seeking drugs - that's what the kept giving me for years. No fun. The good new is CH meds are Not narcotics!

There's lots of good info here - look around and welcome.

~Kris