I have suffered from CH for a little over 10 years now. I am now 26 years old. For the first 3-4 years my doctor did not know what they were and just kept trying every test, scan, and drug he could think of at me to try and relieve the pain. Sometimes it was almost like he did not believe me when I told him the amount of pain I was in and how often it occurred. Back then I was getting anywhere from 4-8 a day. My first cycle lasted about 3 years with never more than a couple of days rest. I finally made an appointment with a neurologist and discovered that I was having cluster headaches. After about 3 months he was able to get them under control and I went an amazing 1 full year without a CH. Over the next 2-3 years I had about 3-4 cycles that lasted anywhere from 2-4 months. My doctor would put me on the same treatment each time(pred step down, verapimil twice a day, and Imitrex Inj to abort the bad ones) After the last cycle ended I have been without a CH for 2-1/2 years.......until about 2 weeks ago. The first 4 I had were only about a K2-K3. And they were very spaced out. about one every other day or so. Last night I was woken up at about 2:00 am with a K5 that only lasted about 10 minutes and never got any worse. I went back to sleep not knowing what to expect next. At 7:00 am I woke up with a K2 that progressed rapidly to a K10 in about 3 minutes and lasted about 1-1/2 hours. I had almost forgotten how bad the pain could get. I am scheduled to see the doctor tomorrow to start back on meds and I am going to try and get 02. I have never tried 02 but I have been reading about all the success everyone else has had so I am going to try and get a prescription for it, though I have no idea where to get the 02 or how much it will cost. I am also thinking of trying the "clusterbuster method". Sorry about the rambling. I just don't have anyone else to talk to that can relate to the pain that we all know so well. Any advice or opinions on the O2 or the CB method would be greatly appreciated.

James

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Look in the phone book under Oxygen suppliers.  If they have a "Lincare" or an "Apria"  you're in luck. 

I pay $10.00 per e-tank.  I had a meeting with the manager of Apria and told them I wanted to leave the Ins. Co. out of it due to the high mark up when working with Ins. co.s   They agreed to 10 per tank.

I've used both.  Apria being the latest and I was very pleased with them.

Yes, they can supply the regulator and mask, but if you want a GOOD mask, you can purchase that right here.  Over to the left, there is a yellow button/link that says ch.com store.  You will see the opimask there and the prices are very good.

Linda


P.S.  I forgot to welcome you.   Glad you're here and you are among friends now who totally understand.   Ask any questions that come up.  No question is stupid.

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And we're grateful when you do Marc.    02 for me, has always worked.  Even at a lower lpm.  However when I went and upped it to a 25 lpm flow it went away faster, with a WHOLE lot less suffering. 

Since no prevent has ever, ever worked for me in 21+ years...I bow down in humble praise to my e-tank as well as my welders tank every day.   

I give my kids a generous allowance - 5 cents each month!

Seriously, 3 lpm of oxygen is not likely to work for clusters - your doctor is thinking angina/ephysema, where 3 lpm might be appropriate. It is not enough for clusters, where supersaturating the blood with oxygen can usually abort, but bringing hemoglobin up to 98-100% usually doesn't.  Ten to 15 liters a minute is what usually takes, sometimes more.

When I went on Oxygen a few years agoI also was out of insurance, and as broke as a church mouse.  I got the script from my neuro and called several suppliers about price, thinking I was going to have to go the welders route, but I found one supplier who had a sister with CH, so he was willing to give me the O2 at a cheaper price than the insurance cos paid since I paid cash.  It turned out to be pretty economical, and he threw in the masks and bubbler.  It never hurts to ask for a discount when paying cash.

Jerry