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.

Welcome,

If you want to get control of the pain immediately, click on the "oxygen info" button on the left of your screen. Read it, read it again and pay close attention to the details. It doesn't work miracles for absolutely everyone, but it certainly does for most.

If your doctor chooses to feed you narcotics, run away and find a doc who knows something about this condition.

It's up to you to become proactive in order to get a handle on controlling the attacks. It can be done! Read, read some more and ask questions. We are all happy to help!

But it really is up to you.

Marc

Edited to add: O2 is to abort an attack. You will need a good preventative to help reduce the frequency of attacks. That's what I meant about reading and reading!

I just tend to think in terms of stopping the agony NOW, when I hear of someone suffering.

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.

That's why I use welding O2.

No more exploring those dark and scary places in the mind.


If you are uncomfortable using welding O2, so called 'medical" is rather inexpensive.  

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?

Step one: Buy the mask sold here on this site - it's the way to go. The owner of this site is not in the mask business. He and his lovely wife sell these in order to help people get the right stuff.

Step two: Buy a regulator to fit a "CGA-540" tank. (see link for more info) DON'T spend your money on a regulator unless it provides at least 25lpm (liters per minute)  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Step 2 option: Adapt a regular welding regulator with a barbed fitting so it can attach to the plastic tubing on the mask kit. A welding regulator will kick ass for you. Just open it S L O W L Y.

To answer your question - the bigger the better. You don't want to run out. Get a big "K" or "T" tank. The supplier won't even ask why you want it.

Let me know if you need more info!

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

Hi, Marc...I am in the same boat that Syko's in...I'd like more info about the welding oxygen if you can send it. Are there websites I can look at that you know of to know which ones to research and price? How would I go about filling it (assuming you're buying an empty tank)? Do you know the specs to look/ask for? Any help you can give would be great. My money is limited, and I'm not even sure it will work, but I want to try. Thanks!!!

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!

Quote:

Hi, Marc...I am in the same boat that Syko's in...I'd like more info about the welding oxygen if you can send it. Are there websites I can look at that you know of to know which ones to research and price? How would I go about filling it (assuming you're buying an empty tank)? Do you know the specs to look/ask for? Any help you can give would be great. My money is limited, and I'm not even sure it will work, but I want to try. Thanks!!!

Just guessing here. Nevertheless: O2 is O2. Nothing to worry about.

The others here can steer you the rest of the way and good luck!

Charlie

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. :D)

Jerry

Thanks, Jerry...lol...I actually did post an intro, but I think I didn't put it in the right place! I have to get accustomed to how this board works, I think. I have actually answered my questions about the O2...actually waiting for the tank to be delivered as I type and looking for as much info as I can while I wait! Thanks again!