Hi mapache   

Sorry, I don't know the answer to #1.

#2 - The injections are very easy to use and don't hurt (much). Just a sharp prick and it's over. I have never had them long enough for them to go out of date, but I do recall some one on these forums said they used some that were out of date and it still worked.  I would imagine that the worst that could happen is that they have lost some of their potency, so will have less effect, but hopefully they will be OK. Most medicines are fine after the use by date.

#3 - I have not tried amitriptyline, but sorry to tell you indomethacin will not work for CH. One of the many conditions which mimics CH is parosyxmal hemicrania, for which indomethacin is brilliant, but it won't work for CH. My neuro prescribed it as a diagnostic tool, to rule out PH. When it didn't work he gave me sumatriptan injections, which are my new best friend.

In the meantime read up on these boards about energy drinks, and check out the "oxygen info" tab, highlighted yellow, on the left of your screen. Also find the posts by Batch entitled "123 days pain free" on the medications, treatment and therapies board.

Hope you find what works for you. Keep coming here and read all you can. You'll find loads of info that helps.
Maz.

A lot of people swear by the energy drinks tip. A red bull or monster or something similar. You have to chug it back really fast at the very first sign of pain. Don't wait till the pain has ramped up. It's the combination of caffeine and taurine, in a sudden hit that does the trick, so any drink with those ingredients will do. It doesn't work for everyone, but nothing does. It doesn't taste so good and it's not conducive to sleep, but that's a small price to pay. As I said, lots of people have success with it, so well worth a try.

Also, go to the "medication, treatment and therapies" board and look for a post by Batch entitled "123 days pain free". It's an anti inflammatory regime of vitamin D3, magnesium, calcium and fish oil. Settle your self in for a very long read but you'll find it worth reading. There are hundreds of posts about it, as almost every one here uses it. It's effective for about 80% of people, and many of them who were chronic sufferers have become completely pain free for several years. I have been taking it for about 6 months now and although I'm not pain free my attacks have been sporadic, and much less intense. I have definitely noticed an improvement. You will need  blood tests so you know when you have reached the correct level without over dosing. It's all stuff you can buy without a prescription, and even without the CH, it's good for you. Please try it.

By the way, I never had too much success with imitrex tablets as they take too long to get into your system. OK for shadows but no good for the biggies. The injections on the other hand give me complete pain relief in a few minutes. Some folks have bad side effects from it (not me) but I just get blessed relief. If you can get imitrex again, go for the injections if possible.

Good luck, Maz.

As far as prescribing O2 to smokers, your neuro needs to give you more credit than to think you would smoke while using it. I smoke and my neuro pushed me to fill the scrip..he just said be smart and smoke outside. To deny you O2 is just plain wrong and I would definitely push for the scrip..or find another Dr.

Thanks, everyone. I will delve into the 123 Pain Free thread today. You're correct about Imitrex tablets. They're too slow when a major attack comes on suddenly and floors you. But during my last cycle the pills seemed to lessen the severity of the 2 to 3 attacks that would come daily at the exact same times. I'd just pop Imitrex an hour or so before my scheduled date with the Monster.

Thank you, Bob, for the pdf. I'll definitely print it out and take it to my next appointment. It's funny. My neuro seems to know less about CH than my regular doctor. She was the first person in 20 years of MRIs and CT scans and misdiagnoses by so-called specialists, who upon hearing my symptoms simply said "Oh, you have CH." She immediately prescribed Imitrex and Topamax, and referred me to the neuro. BTW, Topamax was awful for me. I couldn't stand the "Twilight Zone" side effects.

Yeah, I thought the neuro's 02 tank/smoking denial was silly. I even said to her, "You must not have any idea how painful this is. As I'm writhing in agony, banging my head on the floor and praying for death, the LAST thing I want to do is smoke a cigarette."             

Thanks. As I said, I had good luck with this Generic4All place. I think it's based in the UK. However the package came from India. The pills came in strips of individual factory-sealed, bar-coded silver foil packets printed with the brand name Suminat. They looked legit and worked just as well as my RX stuff from my USA pharmacy. Of course, doesn't matter now as this Generic4All no longer carries them.

Put myself on Batch's D3 program yesterday. I'll let you all know how it goes.

So far, this cycle of mine has been strangely mild. I'm a week into it and can count the number of medium-range attacks on one hand. The shadows are there ALL day and night long, but I can handle that. Usually, a week into a cycle (my last was spring 2010) I'm in 2-to-3-attacks-per-day PURE HELL.

Question. I found the other clusterbusters board. So I gather it's taboo to discuss psychedelics around here? If so, I'll register on the other board and take it there.

BTW, no offense to anyone but it seems a bit strange to me that all of us suffering from this nightmare would split into separate forums, but to each his/her own I suppose.
   

Bob Johnson wrote on Dec 24^th, 2013 at 6:48am:

mapache, regarding the oxygen, I don't think your neurologist understands the potential danger. First, it won't explode or burst into flames, even if you use it while smoking. The danger is in using it around open flame (such as setting your clothing or the sofa on fire while using oxygen), which will cause you to burn up much more quickly if drenched in oxygen. And as you have pointed out, who would want a smoke while having an attack? My wife was freaked out about this when I first used O2, so I turned it on at 15 liters per minute and held a lighter next to my mask... and the O2 blew the flame out.

Your comment about the Neurologist's skill is mirrored by the experience of many folks here (and in GB). It's why we have encouraged using a headache specialist, if at all possible.
===
Medical education in headache
Posted 9/26/07, MEDSCAPE   

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Abstract statements from a study of headache education in medical programs. Second para. specific to neurological residency training. Gives good idea of why it's difficult to find a sharp doc.
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"Objective. To explore the extent of headache education received by medical students and residents.
Background. Headache is a common, often severe, and sometimes disabling problem. However, 49% of sufferers do not seek professional treatment -- of those who do, only 28% are very satisfied. One possible reason is limited education of physicians about headache.
Methods. Surveys were sent to all allopathic and osteopathic medical schools, 200 family medicine residencies, and all 126 neurology residencies. Information requested included the amount and perceived adequacy of headache education and any plans to increase headache education.
Results. Response rates were 35% to 40%. MEDICAL SCHOOL LECTURE HOURS RANGED FROM 0 (4%) TO >5 (24%) WITH 92% HAVING NO PLANS FOR AN INCREASE IN HEADACHE EDUCATION. FAMILY MEDICINE RESIDENCY LECTURE HOURS RANGED FROM 1-3 (30%) TO >5 (34%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >5 (41%), WITH 88% OF PROGRAM DIRECTORS HAVING NO PLANS FOR INCREASE. NEUROLOGY RESIDENCY LECTURE HOURS RANGED FROM 1-3 (11%) TO >5 (64%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >10 (57%), WITH 80% HAVING NO PLANS FOR INCREASE.
Conclusion. Undergraduate medical education in headache is limited. Despite medical schools perceiving their training as adequate, both neurology and family practice residency program directors believe entering residents are inadequately prepared in headache upon entering the program."

"Neurology Residency Programs
Neurology residency program lecture hours varied from 1 to 3 hours (11%) to >5 hours (64%) (Figure 2). The number of case presentations ranged from 1-5 (23%) to >10 (57%) (Figure 6). Forty-two (95%) of program directors believed that their headache education was adequate (Figure 4). Interestingly, 20% of neurology programs indicated plans to increase training in headache management. Similar to the family practice programs, 68% of the program directors believed that new residents had inadequate knowledge about headaches upon entering the program while only 11% of the program directors believed that their residents were well informed about headache."