For years I have done anything but live in the solution. As a newcomer to this site I have learned so much about the demon that has been with me for 34 years. Having a support group and the conversation about O2 has given me so much hope. This post is kind of long, but I hope my experience may be of some help or just help you get to know me

I remember my first attack like it was yesterday. I was 14 and on a school outing. I was in a van full of rambunctious male teens at night on a country road. As we drove under the streetlights my head began to feel like a dentist was drilling my eye (as a child dental work did not include Novocaine). When we pulled into a General Store with all of it's lights I literally thought I was going to die from a hemorrhage or something.

So, for all of these years I have lived on and off with this pain that I would describe to Doctors and friends as a hot ice pick being jabbed into my right eye or like having brain freeze that won't go away. At the same time I would tell them that I would rather have all my teeth drilled without Novocaine, and I still would! I have taken all sorts of medication like Fiorinal, Fioricet, Ergot ,and Inderal. When I would have to go to the ER they would give me a shot of Demerol and Vistaril. This would take away the pain alright but it would also trash me for the next 12 hours.

In the early 90's I was prescribed imitrex which I thought was a God send until the insurance co. would not keep up with my need.
I tried more homeopathic methods of dulling the pain like hot compresses or ice, caffeine, exercise and sex or masturbation to increase my heart rate but the pain would go on for hours some times. Having some knowledge of street life I knew that I could get more doses of narcotics on the street for the money than I would have to spend on the imitrex that the insurance co. would not provide. VERY BAD DECISION!!! This just created a whole new Demon for which I am happy to say that I have another support group for.

From that time going forward I have relied on Imitrex, Maxalt, and Zomig along with the homeopathic aids. At a very desperate time without medication I was able to get relief through meditation. This was very situational and I have not been able do it since.

Prior to 11/19/08 my last attack was about 4 years ago. I was treated in an ER with Imitrex and O2. I walked out feeling like I had never had an attack, no train wreck afterward. All these years I have been hoping that the cycle was over, that I would not have to live through the hell any more.

Neither I nor the Medical community really understand the actual antagonist behind the attacks, but I do believe in cause and affect. This school of thought has brought me to believe that the cause of my attacks is basically stress. So, for all these years I have blamed myself for the headaches and not being able to be free from them. Like I haven't had any stress in the last 4 years, RIGHT!

Having recently begun a new cycle of pain I went right to the Doctor and got a prescription for Imitrex. 6 doses, a months supply, gone in a week. Feeling in the same all to familiar medication trap I talked more to the Doctor and the insurance co. about O2 and alternative meds. We decided on a supplement of Maxalt and a visit to the Neurologist before prescribing O2. I am feeling especially hopeful about the Neuro. appointment today. After having done some online research and finding this site I feel much better prepared to engage the Doctor in a conversation about O2.

After spending so many years in the victims seat I am now feeling empowered and actively involved in the solution.  First off, I now am able to acknowledge that I have a vascular disease for which I am not responsible. Secondly, I have found a group of people that are dealing with the same situation as I am. It never dawned on my that I could find a support group of cluster heads.

I now have hope and faith in a solution. Not a cure, but an effective and reasonable way to manage the pain. I no longer have to live in the problem, beating myself up for putting myself in such a painful place.

Ignore Chuck, the man is living in a padded room and plays with crayons!

Great first post! Attitude is more then half the battle with this condition and your attitude is great. Stress is funny with CH. For some, as long as they stay stressed, they never get hit! Others, like me, periods of sustained stress will bring on an attack.

REALLY push hard for the oxygen. If you're part of the lucky 70% or so it's almost miraculous how fast you can abort an attack. Ni Imitrex hang over afterwards!

Good luck with the neuro.

Guiseppi

Yes, it is a great first post!!

Please read all you can find here re: o2 and the proper mask, and the liters per minute necessary.  Before you even begin, someone will probably show up here to give you the info you need.

I'm no longer a sufferer (episodic for 28 years and now pain free since 1986) so I'm not about to give advice of that nature.  I'd probably have you on 2 ltrs for 15 hours or something like that. 

Welcome.  The light is always on.

Actually, you need to tell the doc that all the leading neuros recommend 10-15 lpm with a non-rebreathable mask.

Bunch of 02 pushers.

Listen to em.

Welcome and nice to meet you.
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the bb

Back to the Neuro today. She was not at all interested in my paper back up, as I figured. She said "I always prescribe 1 to 2 liters, I will have to look at my book" She wrote for 9 with an NRB. I told her to keep the paper work to read, she might find it interesting, and that I did not expect her to change her practice as a result of it. Plant the seed without damaging the ego   Just got off the phone with Apria and we are all set for delivery tomorrow. Christmas is coming early for me this year. I looked at regulators on eBay and the are not all that much, just lots of different brands. I'm not sure which are better.

It's a good day in cluster town at least until 9:30PM