That's about as close as I could get to describing cluster headaches.
I'm new here, but these crazy headaches have been with me for about 4 years now.
I had no idea how bad cluster headaches were till about a year ago. Every specialist I'd ever been too just kind of flippantly glossed over the fact that it's one of the most painful conditions known to man. I don't know if I should feel way better or way worse knowing that I go through it all the time.
I'm finally going to a clinic that understands how terrible this is, and I've been given new medications and treatment options, but I'm scared as hell. Nothing has worked in the past except O2, and I hate lugging that freaking tank around everywhere I go. All of the additional treatment is invasive surgery, and it's terrifying to think about.
I've been getting more and more depressed as the years go by with no reprieve. And of course none of my friends or family understand how awful this is. I have to describe it to them in terms of gunshot wounds or childbirth, and they don't really get it.
Anyway, ranting on about your pain to others is a good way to seriously annoy them and drive them away from you, so I usually refrain from doing that. I came across this website in an attempt to understand what other people who suffer like me deal with this craziness.
GL; HF.

I hope that you are finally seeing either a headache specialist and not a general neurologist or pain clinic. Too many folks wander around for years before finding somone with the traiining and experience we need.

Re. O2: it's effective but it's active period is short. It's wise to be using other forms of abotive ALONG WITH a preventive med. See the PDF file, below.
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It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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This initial steps of getting a god diagnosis and then taking the tme to work out a good treatment progrom with the doc are the testing steps.

It's fair to say that most of us, once we have been thru these steps, can live comfortable, productive lives. Relapses, yes, but the confidence gain prevents us from lining in constan angst.

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Welcome, Tux,

I think you'll find a lot of info here.  I certainly continue to do so.  I visit during the night, primarily.  After the O2 does its magic, I usually browse through the archives and late posts.  Amazed at the number of times doing so has pulled me from the brink. 

Scared?  You're not alone.  My first CH cycle left me wondering when my head was going to explode and take me with it.  As they say: "At first I was afraid I was going to die, then I was afraid I wasn't". 

Hang with this group.  The collective experience and wisdom is unparalleled.  Keep coming back.  There is life during and after cycles.   

Welcome Tux,
You are among friends now that know exactly what your
going through, bin there done that so too speak, so just
hang in there, and we'll do all we can to get you some
relief from the  [smiley=evil.gif]. I did note your getting
sick of lugging that 02 cylinder around. Have you tried
Imitrex/Imigran auto injectors, they are easy to carry
around in your pocket, and can abort the  [smiley=evil.gif] in 5-7mins.

Cheers, Hoppy.

Hi Tux,
Maybe show this to your immediate family, it might help
to explain what your going through.

Professor Peter Goadsby; director of the UCSF Headache Centre and one of the world's leading headache experts and researchers has commented:


Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they've had a worse experience, they'll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anaesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

The condition was originally named Horton's Cephalalgia after Dr. B.T Horton. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache:

"Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."

f*** yeah tux this s*** sucks!

I just got an opportunity (?) to try my imitrex injectors for the first time, and it worked pretty great. My only question is how often can you use these things? I know you shouldn't use them more than a few times a week, but I don't remember exactly.

Hi tux
You can have 2 per day, and as far as I know there is no problem with long term use (someone please correct me if I'm wrong). I know when I've had a bad episode in the past I have used 2 per day for about 3 weeks till my legs were black and blue with needle punctures.

Lots of people say that the 6mg dose in each injection is not necessary, and 3mg is enough, and you can split them. Obviously it saves money doing this (if you have to pay) but also it's less drugs you are putting into yourself. If you google "cluster headache splitting injections" there is a guy on you tube showing you what to do.

I have high flow 02, and a non rebreather mask now, so I use the injections a lot less frequently than I used to.