Hello fellow clusterers my name is Hickory. I’m 39 years old I live in Vermont with my wife Beth and my two kids Clara, 3 and Will, 1. I’ve been dealing with these things for about twenty years. They started out as being more of what I consider migraines. When I would get them I would put my self in a dark room, put a wet wash cloth on my head and try to go to sleep. Once I got to sleep my migraine would be gone. This would happen every three days or so for about a month. After that I would be pain free for a year or so. For the first few years I didn’t use meds. I used feverfew and coffee. That seemed to help for the first few years. Then they began to get more painful and more frequent. I began seeking medical help. I went on one med. it would work fine for a year or so. Then it would wear off and I would go on to another med. And another and another. This went on for 10 years or so. They all worked for awhile then the pain would return. The last med. I was on was Depakote, valproic acid. That stuff was the worst. It was making me get sick in the mornings. I was gaining weight and losing hair and I was still getting migraines. I was getting desperate. I went on line to look for help and found a company who said they could help. They said migraines had a lot to do with my diet and serotonin. I began an elimination diet. I stopped eating aged and fermented foods and stopped drinking alcohol. I also started taking their supplement serotona. The head aches stopped. This was four years ago.  After a year I stopped taking the supplement and for another year I was migraine free. Then two years ago they came back but not like before they were much worse. There was no way I was getting to sleep. The pain was so bad I was crying on the bathroom floor holding my head kicking my legs and begging for help. I did not want to go on meds again but I had to do something. I got some maxalt and that would help when I got them. But they weren’t stopping. My doctor started me on prednisone and diagnosed me with clusters, it worked. It stopped the cycle, at this time I was already two months into the cycle, so it was probably ending anyway. So then I was free again for another two years. I was beginning to think I was done. I was watching what I was eating, no alcohol, and no fermented or aged things. So then my wife and I went out for Chinese. MSG. The next day they were back. I woke up in the night with a good one and over the next few nights they got worse and worse. I thought they were killing me. The pain was soooo bad!! I thought I was going to lose consciousness. They were coming every night. So I went back to the doctor and got me on prednisone for three days. No migraines for three days. When I stopped the pills they came back. So went back to doc. He put me on prednisone for five days. No pain for five days then they were back. That stuff was no fun; it felt like I was on a pot of coffee the whole time not much sleep but no headaches. I went online to seek help and found the clusterbusters site. So three weeks ago I tried LSD, not for the first time in my life, I only took a small dose and it worked for a week. No clusters. Then bam they were back. So I did some research learned about Tyramines. These Tyramines are not just the chemical in aged or fermented foods they’re in ripe foods such as bananas and avocadoes, as well as dried food like raisins. I think an avocado triggered that one. I also learned that MSG is in so many foods that don’t say they have it in them. “Natural flavor”, Hydrolyzed yeast and more. For the last two weeks I’ve been on a very limited diet. Two days ago I got oxygen tanks that were prescribed by my doctor. Before that I was using my oxy tank from my welding setup. The o2 is working most of the time, when it doesn’t I take Maxalt mlt. Before last night I took maxalt every night for five nights. Last night no maxalt, just lots of o2. Well that’s were I’m at. I may be close to the end of this cycle. I hope!! Yesterday I found this site, I wish that no one got these things but it’s a relief to hear stories so much like my own. Hopefully we can beat this thing. I still have hope. Peace, Hickory.

Hey there Hickory,

Welcome to the club that nobody really wants to belong to.  :o

Glad to see that you're taking the beast by the horns, researching, etc., and not just unquestioningly following doctors instructions, which is usually a giant mistake.

Hey have you checked out the oxygen info linkk on the left of this page yet? That details a much more effective way of administering O2 than the old method that doctors still routinely prescribe - lotsa people here swear by it. Try it, you'll like it.  :)

Congrats on actually procuring some LSD and getting a week's relief from it BTW, that is a tough commodity for many of us to come by. I don't think I'd have a prayer of getting any (I don't remember it being so scarce in the 70's though! 8-)), but then I'd probably prefer to try psilocybin first.

Bejeeber is right, read the "oxygen info" to educate yourself on the modern use. Most Dr's have no clue about the best O2 use for CH.

In case you don't see the "oxygen info" tab, I've given you a link below. I went from stopping 50-60% of my hits, to over 95% with higer flow and a good mask. I also recommend the O2pti mask available on this site. It also comes with a mouth piece for those with beards.

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

Good Luck, Don

From your message it appears that you would benefit from some basic learning about Cluster. This article is excellent, the second book title (which follows the article) may be an easier read.
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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]
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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.
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Your doctor is doing some of the right things by giving you  Pred but there is much more to treating Cluster than this one med. IF you have the option, I'd strongly suggest you find a headache specialist--NOT just any neurologist. This is a complex area of medicine and so many doc, of all types, have virtually no training in headache.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.  Call 1-800-643-5552; 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.

6. 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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There are dozens of kind of headache and many disorders which appear to be Cluster but which are not. Getting a good diagnosis is essential to good treatment.

Please stay in touch and let us know what you are doing to find good treatment.

Welcome to the board! Bob has given you some great reading. With CH, knowledge is your best friend. We have a saying on the board that sitting down in front of a doctor and saying "fix me" can be a recipe for a whole lot of pain! Educate yourself, and work WITH your doc to formulate a response.

Do read the oxygen info link on the left as HOW you use oxygen can have a huge effect on how quickly it aborts an attack.

Glad you found us, good luck with this cycle.

Joe

Thanks for all the advice. I’m using the o2 almost every night. The doctor knew to prescribe a high flow regulator and the proper mask, although it doesn’t fit my face too well. I'll have to up grade soon. I’m on the tank two or three times a night. Most of the time I don’t need anything else if I get to it fast enough. Peace, Hickory

Hickory wrote on Feb 27^th, 2010 at 12:23pm:

...The doctor knew to prescribe a high flow regulator and the proper mask, ...

Wha?? A liter flow of at least 15 LPM (more like a minimum of 25 LPM for me and many others) and a non re-breather mask?

If so, this is the first time I remember seeing someone report an encounter with a doc who prescribes this as a matter of course, and I'd say you found a good one!

I'm with Jeeber.....major score to find a doc that knowledgeable not just with oxygen but in the delivery system. Hang on to that doc!

Joe

The mask has a bag on it, right?

Hyperventalating the O2 has helped me and others. It speeds the time to abort.

Don