Merry Christmas to me! After 2 years/8 months CH-free, The Beast returned two days ago. So far I haven't hit the 9 to 10 pain level (have had three attacks in the 5 to 6 range), but I fear the "someone please shoot me" attacks are coming. So I'm gearing up. 

Question #1. I had six Sumatriptan tablets leftover from my last cycle; now down to three. My insurance doesn't cover the pills at all, and as everyone knows they're bloody expensive. So I was ordering them on-line from an overseas outfit named Generic4All. This place no longer carry generic Imitrex, so I'm wondering if anyone can please recommend an on-line pharmacy that carries if for fairly cheap, does not require a prescription and won't rip you off.

Question #2. After my last cycle ended, a friend who used to get migraines gave me two unused Imitrex injections. I've never done the injections, but if The Beast attacks with a vengeance, I certainly will. Only problem is these injections have an expiration date of January 2010. Any danger in using something that old?

Question #3. After my last cycle was over, I was FINALLY diagnosed with CHs by a neurologist (this was after 20 years of suffering and being misdiagnosed). She gave me Indomethacin and an anti-depressant called Amitriptyline, neither of which I've tried yet. Does anyone have experience with the latter? I read that a possible side effect is panic attacks. That's the last thing I need on top of the Beast.

Thanks in advance.
-Eli (mapache)   

    

Hi mapache    [smiley=wave.gif]

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 I have never had them long enough for them to go out of date, but I do recall some one on these forums said they used some that were out of date and it still worked.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.

Thank you, Maz.

I'm sure you're right about the indomethacin. I'm not sure why the neurologist gave it to me. She also gave me some samples of zolmitriptan nasal spray, which I just found buried in a bathroom drawer. Hopefully everything I have in stock will keep me going until I can get my hands on more Imitrex.

I've read through lots of the message board posts in the past, but as I said its been nearly 3 years. Oh, as for oxygen, I've never tried it because I just learned of it as my last cycle was winding down. The neurologist said she wouldn't give me a tank because I smoke (fire/explosion danger). Told her I'd gladly smoke outside my home. Will ask again during my next visit.   

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.

Please!
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.
=============================
Your doc's treatment suggests she is not up to date. Print the PDF file, below, and use it to discuss treatments options.

Imitrex injection is the most effective form. If cost is a barrier, print following and ask her for samples to try. In the U.S., it's per dose cost is low compared to other abortives.
----
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed
-------
Folks who have tried it have found it almost as fast acting as Imitrex injection. It became my only abortive after discovering how effective it is.

Oxygen is effective and usually quick acting but, unlike other abortives, it's action ends quickly when you stop using it.

---

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.

My PCP told me out of date immitrex is better than no immitrex. I was sitting on 7 boxes of immitrex that went out of date in 2010 when this cycle started. I used them all and they worked.

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."             

A 1: I don't know of ANY reputable online pharmacies THAT DOES NOT REQUIRE A PRESCRIPTION FOR Rx MEDICATIONS and I would avoid these at all cost. (Just my opinion. You have NO IDEA what you're really getting.)

A 2: I don't think there is any danger in using expired Imitrex as long as it's been kept within the temperature norms. (Nothing that has been frozen or heated up at high temps)

A 3: Amitriptyline & Indomethacin are commonly prescribed medications for Cluster headaches, and yes, Amitriptyline does have it's fair share of side effects. Be careful when taking it so you'll know what side effects to expect. Indomethacin is used as a diagnostic tool since it is 100% effective in CPH patients. If Indomethacin does not work within 5 days, it is not going to work and should be D/C immediately.
_______________________________________________
I read that you have NOT tried Oxygen. This is a MUST! You MUST click on the "Oxygen info" tab and read about what you need. Many people have success with Oxygen and odds are (when done correctly) YOU WILL TOO with no side effects. GET THAT OXYGEN ASAP !!

GOOD LUCK !!  :)

I4B  ;)

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.   

I had reasonable success with Nortriptyline as my first preventive but much better results when I changed over to verapamil. And then even better results with vitamin D3.

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.
   


      

Almost forgot. Over the holiday I went to three different family Christmas gatherings (oh, the horror...). A couple of family members did not show up, and their medical excuses were hilarious to me. "Aunt Nancy has a stiff back. She can't make it" and "Cousin Bob is at home with a migraine headache."

My girlfriend, who has seen me in the middle of Kip 10 agony, turned to me and quietly said "Migraine? That's child's play. Bob needs a better excuse. You should tell him about CH."       

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

Please! 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. ============================= Your doc's treatment suggests she is not up to date. Print the PDF file, below, and use it to discuss treatments options. Imitrex injection is the most effective form. If cost is a barrier, print following and ask her for samples to try. In the U.S., it's per dose cost is low compared to other abortives. ---- Headache 2001 Sep;41(8):813-6  Olanzapine as an Abortive Agent for Cluster Headache. Rozen TD. Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa. OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE. PMID 11576207 PubMed ------- Folks who have tried it have found it almost as fast acting as Imitrex injection. It became my only abortive after discovering how effective it is. Oxygen is effective and usually quick acting but, unlike other abortives, it's action ends quickly when you stop using it.

AGAIN ?? LOOK AT THE NAME OF THE THREAD !! THIS ZYPREXA BOMBARDMENT IS GETTING OLD REAL QUICK. DO YOU HAVE STOCK IN THE COMPANY OR WHAT ??

COME ON !! USEFUL & RELEVANT INFORMATION, WITH THE KEYWORDS BEING "USEFUL & RELEVANT" !!

Again I4B, you clearly disagree with Bob but that's a pretty strong reaction to someone relating something that worked for him, and suggesting other CH'ers discuss it with their doc.

Joe

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.

mapache wrote on Dec 27^th, 2013 at 12:21pm:

My girlfriend, who has seen me in the middle of Kip 10 agony, turned to me and quietly said "Migraine? That's child's play. Bob needs a better excuse. You should tell him about CH."

I have cluster headache and chronic migraine. When in cluster cycle, I can be around people, as long as I don't have a headache at the moment (and when I get one I can usually abort it). However, I get violently ill with migraines. If I look at even a nightlight I feel as though my retina is melting and I almost vomit. Cluster headache = excruciating pain, migraine = moderate pain, but what gets you is how sick you feel. It feels as though you just woke up in an alley after drinking a fifth of Jack Daniels the night before. That being said, it is usually an excuse people use to get out of things.

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   

--------------------------------------------------------------------------------
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.
=========================
"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."