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While I'm glad you found us, excuse the very direct response: your self-treatment program is a long term failure approach for Cluster. OTC pain meds don't work for Cluster and, with repeated use, will increase the # of attacks and severity. Narcotic meds have their own side effects problems with chronic use and, as I expect you have found, are not very useful for Cluster.

You are young enough so the reality is: Clusters is not a curable disorder and you need to think in terms of learning how to cope for another 10-20 years before aging out. By way of saying: tailoring your response in order to avoid an insurance trail closes all the most useful doors to good relief. Even if you paid cash for M.D. visits and meds you will still leave a trail. If at some future time, you apply for insurance and cover-up your history, the results are likely to be worse than being honest.

Second to making this decision, finding a headache specialist is the best single step you can make at this stage. ERs rarely help; most docs, even neuros, have strikiningly little training in complex headache disorders. So, if you have the option, find skill & knowledge at the git-go.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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Second, fast, intensive learing about Cluster is essential for out of your konowledge comes peace of mind and skill in caring for yourself.

Explore the buttons, left, starting with the OUCH site. Read some general materials and read the posts here. Ask specific questions.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Explore: the parent site where this book offered.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
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Hope you are near Asheville for the medical libraries in the mental centers are a jewel for your reading and expect you can find a good doc, too. (I'm an old Rutherford Cty boy.)
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Final bit of  hope: we have some excellent meds to abort Clusters and to prevent/reduce them. All are, however, Rx but life today is so vastly better compared to 30+ years ago, with current developments, that you may be optimistic.

See the PDF file, below. It's the latest evaluation of meds for Cluster. Compare what you have used against it, especially around dosing.

IF, in fact, Imitrex didn't help you then two possibilities: using it improperly, wrong form of Imitrex OR you may have a Cluster-mimic (number of conditions which mimic Cluster symptoms but which are not headache disorders).

If you want to pursue other treatments here, would be helpful if you would list what you have taken, dose, duration of use.

Thanks Mike, and yes that's all I've found so far that actually works.  The imitrex was indeed the pill which I was taking about 4 or 5 a day when the doctor pulled me off.  He tried me on the other similar brands as well with even worse results.  It was killing about half the pain for a half hour or so and then the attack was back at full force.  Ametriptyline was SORT of effective but I had to come off because I felt like I was in a fog all the time and didn't care about anything while taking it.  I have to believe there are some remedies that work and don't cost like imitrex.  If the imitrex shot works twice as good as the pill, then it wouldn't justify my spending that much money on it.  Plus it looks to me like it's got more potential side effects than the rum and hydrocodone, which have been tried and true with me for a few years now.   I do believe I will try the oxygen and maybe one of the preventives you mentioned.  I know by reading various threads here that there are options out there that work for some.  By looking at the Cluster Survey results though, it's apparently pretty much a hit or miss situation until I find the right combination.  It appears that all remedies don't work for everybody, and it also appears to me that very few people ever find effective prevention.  Pretty discouraging, really.   The good thing is that what I'm doing to abort works for now most of the time.  That being said, I would LOVE to find a prevention that actually works.

The biggest side effect of CH is, it is the worst pain a person can experience. I've tried the pain med route, it was an ultimate failure. It's obvious your Doctor is not up on CH treatment.

In your best interest you need to learn from this website what the best treatments are, then teach your Doc. Cluster headaches are very rare so few Doctors have a need to know about the proper meds. Imitrex pills are all but worthless for CH, we need the injections or inhaler in that order.

Have you had a Brain scan to rule out more deadly reasons for your pain? For CH the scan should be negative. If not....



Don

ttnolan wrote on Sep 1^st, 2012 at 9:41pm:


Thanks to you and metoo for that bit of advice.  I never thought of welders oxygen.  It looks like I may have to take up welding. 

Hi Johnny and welcome

I just can't imagine what it was like going 18 years before you got a diagnosis. At least now you're on the right track to getting the correct treatment.

Whilst you've got a preventive, have you anything to abort any CHs you get? Oxygen is simply amazing for doing this. I can kill mine off in about 6 minutes or so using a non-rebreather mask and a high flow rate (25lpm). Imitrex injections are also pretty popular working in a similar time for when people are away from oxygen.

Are you working with a headache specialist? Most doctors, even neurologists know little about CH.

Keep reading and you'll soon know more than most neurologists.