Heya peeps,

Nems googookid, male 34, newbie to this forum but not a newbie in CH. Got it bout 10 years ago and it has been hitting me periodically every year now. Last year's hit was everyday for bout a month. Its been 2 weeks in row this year now. Just discharged from the hospital 3 days ago. Attack still continuing whenever I fell asleep. Medication to relieve, Immigran, Epilim twice a day. Comments are most welcome!!!

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Thx for pointing out. I'm from Malaysia. I'll try to find my way around here and familiarize with myself. Mean while I need all the help i can get here. Cheers :)

Hi Goo, loads of the best help here, just read on and hang in there...
This is what the internet is for, bringing peeps together at the speed of light (distance no object!)
Have look at the oxygen info link on the left and learn about the most quickest relief there is!

Welcome and Respect

Gary

What Batty said about the oxygen!

So you've been prescribed Imigran pills? If so, that's a bit unfortunate because the injectible form is known to be much more efective for a quick abort. If you're able to get injections, here's some really valuable info about how to stretch imigran (AKA imitrex) injection doses:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It would be helpful if you would tell us about the types of doctors you have available to treat your headache. Have you found anyone with some knowledge & experience.

If not, we can send you some basic information which will guide your doctor's treatment--if he will accept it from you.

Just a couple of examples of what is available:
---



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
==
See the PDF file, below.
===
Either one of these books would be a good source of information.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
==
Explore this website:


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
===

Finally, it would help us if you give a description of the kinds of care you have been given, the meds you have used, and so on.

---

Batty wrote on Feb 10^th, 2011 at 6:21pm:

Hi Goo, loads of the best help here, just read on and hang in there... This is what the internet is for, bringing peeps together at the speed of light (distance no object!) Have look at the oxygen info link on the left and learn about the most quickest relief there is! Welcome and Respect Gary

Thx. I've seen how it works on most of the people but sadly it didnt worked on me when I was in the hospital OR I was expecting it to relieve me sooner. I had it for 45 mins and then the doc decided to give me a double jab. The jabs works pretty fast though. I was then admitted to the ward

bejeeber wrote on Feb 10^th, 2011 at 6:30pm:

What Batty said about the oxygen! So you've been prescribed Imigran pills? If so, that's a bit unfortunate because the injectible form is known to be much more efective for a quick abort. If you're able to get injections, here's some really valuable info about how to stretch imigran (AKA imitrex) injection doses: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thx not sure whether its imitrex but i had several jabs when I was at the hospital

googookid wrote on Feb 10^th, 2011 at 10:30pm:

Batty wrote on Feb 10th, 2011 at 6:21pm: Hi Goo, loads of the best help here, just read on and hang in there... This is what the internet is for, bringing peeps together at the speed of light (distance no object!) Have look at the oxygen info link on the left and learn about the most quickest relief there is! Welcome and Respect Gary Thx. I've seen how it works on most of the people but sadly it didnt worked on me when I was in the hospital OR I was expecting it to relieve me sooner. I had it for 45 mins and then the doc decided to give me a double jab. The jabs works pretty fast though. I was then admitted to the ward

How did they administer the oxygen?

         Potter

            

I imagine it was imitrex at the hospital.

Here's the thing about doctors/hospitals and oxygen for CH though: They are almost universally unaware of how to administer it in a way that will work for CH.

The effective method for using O2 has been known here for years, and has legions of enthusiastic converts among the forum members. News apparently travels at a snail's pace in the medical world.

But we don't have time to wait around for a snail's pace do we? That oxygen info link details the CH power user way to abort an attack - something that I bet you unfortunately wouldn't be able to find any doctor that has knowledge of, but fortunately you may be able to set up yourself.

Bob Johnson wrote on Feb 10^th, 2011 at 9:06pm:

It would be helpful if you would tell us about the types of doctors you have available to treat your headache. Have you found anyone with some knowledge & experience. If not, we can send you some basic information which will guide your doctor's treatment--if he will accept it from you. Just a couple of examples of what is available: --- Cluster headache. From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases) [Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.] Leroux E, Ducros A. ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form. PMID: 18651939 [PubMed] == See the PDF file, below. === Either one of these books would be a good source of information. MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended. == Explore this website: A new (for me) site which is worth your attention: medical literature, films, plus the expected information about CH. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE === Finally, it would help us if you give a description of the kinds of care you have been given, the meds you have used, and so on.

Thx for all the suggested materials, books and info. I'm currently seeing a neurologist. Last year he precribed me two drugs which apparently stopped my cycle. It was coming to about the 30th day of consecutive pain. He precribed me Epilim Chrono 500mg and VERPAMIL 40mg. That was last year and it stopped after 2 days. Again, like I said it was already on the 30th day of consecutive pain. I would presume it was more or less my cycle ends (Usually 1 month or so)

Ok it hit me this year in fact now. Its approximately 1 year since the last incident. Without hesitation, I took back out the Epilim and Verpamil and took it twice a day. Sadly my patience are running a lil short cos I had high expectations after the last years treatment. I was desperate so I went to a different doctor who then precribed me a different precription such as ULTRACET, ACTIVAN, INDERAL, ARCOXIA to which in my humble opinion doesnt work.

I then decided to go back to my previous neurologist who precribed EPILIM and VERPAMIL and sought for treatment. CH hit right at the point I was seeing him. That was when he gave me the O2 for 45 mins and then proceeded with a double jab, after that I was admitted to the ward for 3 days.

I've discharged now and CH still hits me whenever I go to bed. I'm taking Imigran 50mg and Epilim 500mg now. Pain subsides in an hour then I'll try to get back to sleep.   

bejeeber wrote on Feb 10^th, 2011 at 10:42pm:

I imagine it was imitrex at the hospital. Here's the thing about doctors/hospitals and oxygen for CH though: They are almost universally unaware of how to administer it in a way that will work for CH. The effective method for using O2 has been known here for years, and has legions of enthusiastic converts among the forum members. News apparently travels at a snail's pace in the medical world. But we don't have time to wait around for a snail's pace do we? That oxygen info link details the CH power user way to abort an attack - something that I bet you unfortunately wouldn't be able to find any doctor that has knowledge of, but fortunately you may be able to set up yourself.

Hey beejeeber and Potter,

Since this is the very first time I was put under O2 treatment, I'm not really sure what to say. Here's what I know. I heard the doc set the air level at 10. The "mask" I call it looks pretty normal just like what we use to strap on other patients as well. Before admitting to the ward, there's this huge 02 tank. After admitted to the ward, the O2 is readily available next to my bed without seeing the tank of course. Hmmm thats all I know. I was watching Vimeo vid by clusterbusters and it seemed to me that the mask looks really different than the one I had. It looks like a paper bag instead. Is that why its not working for me? 

Could be. The right O2 flow (15-25+ liters per minute, not 10) coupled with the right mask (non-rebreather that does not allow the O2 to mix with room air) and breathing that supports hyperventilation are all critical to O2 therapy. Done as stated, most of us find it is a Godsend...even those for whom it did not work when administered improperly. Push for the right flow and mask, and learn how to huff (you can search Batch, or pm him) and I'll bet you find it's the best abortive. BTW, 40mgs verapamil? Doses seem to be effective at much higher levels for us...240-960mgs/day. And check out the energy drinks...Monster, Red Bull, 5HR, that kind of stuff. The combo of taurine/caffeine chugged at first sign of hit plus O2 has worked wonders for me. Blessings. lance

wimsey1 wrote on Feb 11^th, 2011 at 8:28am:

Could be. The right O2 flow (15-25+ liters per minute, not 10) coupled with the right mask (non-rebreather that does not allow the O2 to mix with room air) and breathing that supports hyperventilation are all critical to O2 therapy. Done as stated, most of us find it is a Godsend...even those for whom it did not work when administered improperly. Push for the right flow and mask, and learn how to huff (you can search Batch, or pm him) and I'll bet you find it's the best abortive. BTW, 40mgs verapamil? Doses seem to be effective at much higher levels for us...240-960mgs/day. And check out the energy drinks...Monster, Red Bull, 5HR, that kind of stuff. The combo of taurine/caffeine chugged at first sign of hit plus O2 has worked wonders for me. Blessings. lance

  Succinct and to the point.  Good stuff.

            Potter

Yeah, you were given oxygen incorrectly. There are 2 simple keys to 02:

Pure oxygen to the lungs, started at the first sign of a hit.

I feel the tingle and tension of an attack starting, I start huffing the oxygen, 6-8 minutes later, I am pain free. A wait of even a few minutes can substantially increase my abort times and reduce the oxygen effectiveness. That's why it's generally not worth racing to a hospital as by the time you get there the beast is established and 02 isn't very effective.

The Non Re Breather Mask  stores the oxygen in a reservoir bag, so you inhale pure 02, the valves let the air you exhale escape so none of it gets re inhaled. It's dirt cheap, no side effects, no chance of addiction, and it's as fast as anything else I've tried in 33 years of CH. That's why we all sound like Baptist Preachers in our fervor for oxygen therapy! ;)

A couple of quick notes. Verapamil is a prevent med commonly used by CH'ers to REDUCE the number and intensity of your hits. It doesn't cure CH and it typically won't "break" a cycle. It takes 10-14 days to show any positive results, and is given at doses as high as 960 mg a day. Sadly, it takes a bit of patience to establish an effective dosing for Verapamil. It's great to have 02 available during this time to beat back the beast.

Talk to your doctor about prednisone. It's a transition med for CH'ers. A short 10-14 day "burst", starting at doses of 80 MG or so, and tapering down to zero, will often give CH'ers a pain free period while they wait for their prevent med to become effective. It isn't to be used long term as there are serious potential side effects from long term useage.

Keep reading, keep asking questions and keep learning. An educated CH'er hurts a lot less.

Joe