Hello there,

My name is Mike I'm a 29 year old  Millwright/Paid on Call Firefighter near Calgary, Alberta, Canada. I'm now in my 10th year experiencing cluster headaches. Or should we say 8 year having "migraines" 2 years seeing a headache specialist in Calgary actually treating me for Cluster Headaches.

I was very happy to see a website like this as I do have many questions as I've been diagnosed with Atypical Cluster Headaches as my headaches last sometimes up to 12 hours if I don't manage to fall asleep or go to the Emergency Room. I share all the same symptoms of cluster headaches otherwise. My clusters typically come once a year and last 2-4 weeks. As of last summer I have now had a cluster in every season.

So far my biggest challenges have been being misdiagnosed early on as I see most of you share and medication inconsistency. The medication is my biggest concern, I experience over the course of my cluster two different pain scale headaches. The ones I consider to be a 5-6 out of 10 on a pain scale normally can be treated with High Flow oxygen bringing it to a state in which I can function and minor pain in my temple will just linger for another 2-3  hours. The other I consider to be a 8-9 out of 10 on a pain scale in which High Flow oxygen does not even touch it and I'm left to an IV with Morphine in which after treatment managable pain lingers in my left temple, around my eye and in my left nostril for typically another 5-6 hours after Morphine. My headaches are usually a 2:30am wake up call however I have had onsets through out the course of the day before. I have now pretty much had every common treatment/medication fail. However as I'm a week into a cluster as I'm writing this I've just come home from Emerg with some Imitrex injections to try. I am really hoping these will work as I've been working very hard towards becoming a full-time firefighter but because I have no solution as of yet I would not be accepted on the department right now as it stands with how long my headaches last and the fact that my only refuge is going to Emerg. I used to be scared of being out in public and getting a headache and what I'd do. Now its every time I'm in the fire truck I have that pit in my stomach hoping I don't have to battle through a call with a headache. So any suggestions would be greatly appreciated with your years of experience!

Thanks for reading my post,

Mike

Hello Mike. Welcome.
On the left side of your screen is an "imitrex tip". Check it out. Have you read up on the vitamin D3 treatment? Ask your doc about a Prednisone burst with Verapamil for long term. Sometimes a quick shot of an energy drink, Monster, Red Bull, etc will knock down the pain.
Read, read, read.

After wandering around for so long, I'd suggest that it's time to find a doc who has kowledge of Cluster. So many doc lacks training/experiece in this complex area.

Don' know whether this will be useful in your location but try.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Hospital social service offices are often good source of guidanced.

The goal now is to get a good diagnosis rather than trying newin treatments. See: Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
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Hi Mike.
One thing we have all learned is that no two people, no two cycles, and no two attacks are the same.
I don't have proper cycles at all.  Mine seem to come and go randomly although I do have periods where they are more frequent.  Then I'll have a short remission but right in the middle of it I'll get one bad attack, then nothing for days.  I've had attacks that have lasted 5 minutes and stopped as suddenly as they start, and I've also had one (thankfully only one) that lasted 14 hours, but most last 45 minutes and I can set the clock by them. For the nine years I've had clusters they have always been on the right side, but last week I had a sudden flip to the left.

Imitrex injections are an absolute godsend. They work for me in 5-7 minutes, even for the worst attacks.  Ten minutes later you would never know I'd had an attack.  Some people do report nasty side effects, but I don't have any.  I never leave home without them.

If they are expensive for you, or difficult to get, read the imitrex tip, on the left side of the page.  I do this all the time and find 3ml works equally as well as the full dose of 6ml.  So you can get two doses from one injection.  Much gentler to use too.

Also, read up here about the vitamin D3 regime which most people are getting huge relief from.

The symptoms, and your reaction to an attack are very "normal"  (if such a thing could ever be called normal), but as I said, we all react differently.

Keep coming back and read everything you can here.  There is more knowledge on this site than all the neuro's in the world put together. After 9 years, I would still not have a diagnosis if I had not come here.
Maz.