Hi everyone,

I went to see my GP today. He's heard of cluster headaches, at least, and he has a friend who is an ambulance officer that gets them - and he uses O2, so he knew about that too.

Lucky for me (or maybe not???) I had a monster headache this morning, which was still going when I got there. It was all at the back of my head though. He let me try 2, but I think he said - 5-6L/minute, which is not enough, right? And in a standard mask with holes in it. So my guess is that it was useless anyway??? It certainly did nothing.

Still, at least he gave it a go. He's a great doc, even if he doesn't have the answer, and he never just brushes me off. He doesn't think I should change neuros, at least not yet, because the one I am with is better than the one I have been seeing is much better than the one I wanted to see as far as medical knowledge.

He admits that he really doesn't know what's going on. For now, he has doubled my dose of beta-blockers, and given me mersyndol to try at night. I'm already on the dose of Lamictal (seizures) that would normally be prescribed as a migraine treatment, and same with zoloft (anti-depressant). He also said if the beta-blockers still did nothing, or the dose made my heart rate go down to below 50, to switch to Sandomigran which is what the neuro originally prescribed (but I never took it cos I didn't believe him :) )

He doesn't think at all that it is migraines, but given that he is lost as to what it is, and I'm going to the neuro soon anyway, he is just trying what he can.

I read a kids story once, and I can't remember this right, but it was about a bunny or a duckling or something like that, who didn't know who he was. He went to visit the other animals who all suggested that he sleep upside down (the bat), swim (the swan), fly (the bird) etc etc etc but nothing worked, then one day he came across a family of whatever species he was, and finally got his answer.

That's how I feel. I don't care what the name of this is, I just want it to have the right name so I can do something about it.

Quote:

but I think he said - 5-6L/minute, which is not enough, right? And in a standard mask with holes in it. So my guess is that it was useless anyway??? It certainly did nothing.

5 to 6 lpm isn't anywhere near enpough if you have Cluster headaches.   You also need a non-rebreather mask.  Go to the link to the left of here in Yellow regarding 02 and you will see what I'm talking about.

   I'm glad you have a nice doctor but you really really DO need to get properly diagnosed by a headache specialist and treated accordingly with a good preventative as well as an abortive like 02, Imitrex etc.

Good story, btw and it fits around here as well as anything.  What works for one condition doesn't necessarily work for CH.

Quote:

I read a kids story once, and I can't remember this right, but it was about a bunny or a duckling or something like that, who didn't know who he was. He went to visit the other animals who all suggested that he sleep upside down (the bat), swim (the swan), fly (the bird) etc etc etc but nothing worked, then one day he came across a family of whatever species he was, and finally got his answer.

Yeah, I know the story, and it does apply around here. You'll actually get some rather "unhelpful" advice from time to time, much less so here, and the moderators are pretty quick and decisive when we get stuff like "sleep upside down new cure" and like that.

It's good you have a sympathetic doc, but I'd really push for a knowledgable one, or at least, print out the research available here and bring it with you. Whenver you have a condition requiring meds (like seizures) it can complicate finding an effective preventative, but a lot of what can work for CHs is already classified as antiepileptic, like topamax.

O2, as Linda has described and as you'll find on the link at the left, is the way to go. There is a trick to it which includes breathing with the right flow rate, apparatus and in such a way to induce hyperventilation. It's all there in the link.

Consider melatonin at night (5-18mgs), energy drinks with taurine/caffeine, and some have even found vigorous exercise to help. Read and read and note and note.

In the meantime, welcome, good luck, and God bless. lance

IF you are firm in your commitment to your GP, then start educating him in how to treat you: many of us have had to do this with our docs.

Print the PDF file, below, and give to him.

Invest in this fine book and give it to him. It's not an extravagance in light of your well being.
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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....")
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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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But good intentions are not a substitute for skill.....


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. 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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Yesterday I had what was probably my worst attack ever. It lasted 2 hours. I took 2 mersyndol forte and a bit later, 2 neurofen and they did nothing at all - which I knew they wouldn't, tried it all before - but I had to do something. In the end, I put music on as loud as I could, and danced and sang.... stupid, I know, but it was a distraction that I knew would hold my attention. My poor neighbours! At one stage, I even put the vacuum cleaner on as well to try and mask the sound of my horrible singing!

This one was all in the back of my skull and into my neck, on both sides. But I always seem to get stabbing pains around my right eye and sinus-type pain that starts on the right but often goes to the left too, a while before the attack. it's bearable, but within a couple of hours, the headache is there. My attacks never come during the night (except once), but I had been napping when it hit yesterday afternoon.

It makes me feel crazy that I'm sitting here feeling no pain at all. Not that I'm complaining, but it makes me wonder if it ever happened at all - not literally, because I know it did, but to think I went from all to nothing.

Melby29 wrote on Jan 24^th, 2011 at 8:19pm:

...I don't care what the name of this is, I just want it to have the right name so I can do something about it.

This should be carved in stone.