Hello, My name is Sykotik, or Syko if you like. I have been a lurker around here for awhile, mostly just finding some solace in the fact that I am not the only one, but I guess it's time to reach out.

I am 28 years old. My first cycle was about 3 years ago, out of the blue. I woke up screaming and waited for an hour in the ER thinking I was going to die. Shortly thereafter a neurologist diagnosed me with CHS. That first cycle lasted about 3 wks, around a year went by and I had another slightly longer cycle. Over the next year and a half I believe I had 2 rather short cycles.

Then came April of this year. I have not had 2 consecutive PFD's since around the 12-15th. of this past April. The last month has been a nightmare, 1-2 mild attacks during the day and then a real "screamer" or "leg-grinder" as I call them later on in the evening. I have had as many as 5 pretty severe attacks in a single day and at this point I am willing to try anything. When my attacks are at their worst I cry, scream, beg, plead, and hyperventillate all while doing my version of the dance. Normally I freak out so much that when I finally feel the beast let go, I vomit everything in my stomach. 4 months and counting.

My doctor has me on Hydrocodone, but even a double or triple dose can't touch my pain and only serves to keep me a little more calm.

I am a divorced Dad of 2 boys, 5yrs. and 6mo. and if it weren't for the two of them I don't know how I could have gotten this far.

I am pleased to meet you all.

Thanks, yeah I have done a lot of reading over the last year and have talked to my doctor about O2, but the thing is that I don't currently have insurance.

I have tried to attack these things mentally for sometime now, trying different methods of calming myself with breathing techniques, visualization, even pretending to all-out ignore it, I'm starting to get discouraged. Lately my attacks are so frequent and severe that even when I'm not in pain I feel like a zombie, I've been told I look stoned and I have been having a hard time focusing and remembering things. I am only working half the hours I should because I am exhausted all the time.

I am at the point where I sometimes wish for death. I am not suicidal, I would never do that to my children, but sometimes when it has been an hour or so of gyrations and squealing that make me seem possessed, I will wish for it to end. I applaud everyone here for their bravery and courage, this Monster makes living everyday life the hardest thing I have ever had to do.

Hmm, I never thought of that. I co-own a construction company so I bet I could get that awful cheap from one of my exsisting suppliers. It's a family run company and my father hasn't set up a company insurance plan as of yet so for now I'm on the old "cross your heart" plan.

What size bottle do you get? And as far as a mask and regulator goes, do I just try a medical supply store?

Marc steered you right!  (BTW, welcome aboard!)  First, FIRE YOUR DR!!! (I hope that wasn't to subtle), second, get O2.  Do as Marc said with it. 

Hydrocodone cannot touch your pain.  All it will do is to ruin your life totally!  You can get a handle on your life again and live with CH.  The key is to keep your focus on living in between the hits.  I've had CH for over 30 yrs now, the last 6or 7 chronic.  I don't bother keeping up with how long anymore.  I could figure it out, but would rather live in the present.  You CAN live with this beast.

Feel free to ask questions.  That is why we are here.

Jerry

I'm on my way toward getting an O2 tank, thanks guys. Callico, I know the meds won't stop the pain, but they sure do help with the anxiety an awful lot!

BTW, This forum seems to be good luck, PFD! PFD!! woop!

Poet in Pain,

WElcome aboard.  May I suggest you introduce yourself more fully in your own thread?  Please tell us how long you have suffered, when you were diagnosed,  how often you cycle and for how long, what meds you have used that worked/didn't work, etc.  That gives us a bit more to go on to advise you.  Bear in mind that we are not Drs, and cannot, nor do we try to diagnose or prescribe for you.  All we can do is to share what has worked/not worked for us so that you can in turn talk with your doc about it. 

As to welding O2, it is the same stuff as med O2, but comes in a different color tank and doesn't have a medical sticker.  Many have used it successfully and saved money.  I would suggest you send Marc a PM with your question as he might not look back on this post to see your question, either that or start a new thread with Welding O2 as a subject.  (the easiest way to PM if you are not familiar with it is to go back to his post and click on the PM button at the bottom of his post, thenwatch the welcome at the top left of the screen when you log on for his reply.  I'm not assuming you to be stupid saying this, but if you know as little as I did when I signed up you will be wondering what a PM is 6 months from now, and we want you PF before then. )

Jerry