Hello Clusterheads,
My name is Dan and I live in Brooklyn, NY. I have just gotten out of the hospital for the fourth summer straight, was hoping to avoid it this time around but who was I kidding right?
The thing is this time around our insurance changed and I no longer had my old neurologist. He was great, new my history, etc etc. My clusters come all year but the summer is when they blow up so bad that I get admitted to the hospital (anyone else seasonal sensitive?) When my partner would call him he would pre-admit me. Now we had a new neurologist who had never treated cluster headaches and her covering neurologist wanted to give me tyleonol 3 and release me from the hospital. We luckily got a good advocate who removed him and the ER doctor (he was totally out of his league) from my care and a neurology and pain specialist team took over.

Anybody else come across this in their travels? Does anyone have any good ways of dealing with this? I am now getting a new neurologist who deals with clusters but what if by chance I am traveling. Sorry about the long winded message

Having to educate doctors is unfortunately a common problem. We suffer from a rare ailment, HUGE advancements have been made in the last 10 years. Many doctors still believe it only affects tall, athletic men with lionesque features! (That's from on older diagnostic book!) All you women are just migrainers looking for attention! ;)

My favorite saying is "sitting in front of a doctor and asking him to fix you is a recipe for years and years of pain." It's our job to educate ourself, and work with our doc to plan our treatment program. This is not a good malady for a meek and quiet person as you sometimes have to be REALLY vocal with what your doc can do with his Tylenol 3!

Kidding of course, the key is to be well educated, have the printed resources showing the recognized efficacy of your treatment plan, and the mental resolution to educate your dos as to what works. Good luck, depending on the doctors personality it may require a new doctor.

Joe

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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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]

Being a mear woman with ONLY meegrains seeking attention  :) I'll bow to what Joe said and add about 2 cents...

Have YOUR FACTS about CH at your fingertips and be ready to advocate for YOURSELF. Being alergic to codiene I've not been offered Tylenol3 (they usually offer me demerol). I've very nicely told a few docs where to stick the demerol and it wasn't in my rear. Then we talk about CH.

Each of us have to find what WORKS FOR US and we're all different. I push O2 (at a high flow rate with a nonrebreather mask) and cafergot to abort in a hurry (an energy drink if I'm not near my O2 - if you're traveling I'd suggest you carry with you a can of Red Bull - and you can get it on a plane if you tell them it's medical - you may have to be a little vocal, but it CAN be done if you tell them what can happen if you get hit and don't have it!)

Finding a doc who knows about CH is a problem, but there are a few out there - it's just seek till you find. Or find and EDUCATE (if you find one you CAN educate - and there are those out there who don't have a God complex and are willing to LEARN).

Read the info on this board - print out what you need and next time go in prepared. Be your best advocate in your treatment.

Hugs BD :-*

When out and about I carry some of those little 5Hr Energy shots.  They are small and work almost as quickly as does Red Bull or the others, but they don't tear up my stomach nearly as badly.

O2 is still the best abortive for most of us.

Barb D sure is knowledgeable about this for just a meegrainer.  She must read a lot! ;D  I'll go hide now.

Jerry