Knowing that there are so many others suffering the same seemingly inescapable torment should come as a comfort, and in small measure it does, but it is bittersweet when it concerns an affliction that I would not wish upon those even the furthest from my heart.
They've taken my music from me, and possibly my occupation--and it isn't an exaggeration to say that some sleepless nights I am convinced that the devil must have taken up residence in my own head.
It may sound sophomoric, but I feel very connected to all of you, and very humbled by these long days in anticipation of the next tide of pain that is going to pull me under and drown out everything except the cluster.  Right now my eyes are tearing up knowing that there are *so* many of you (which I was not aware of before finding this.)
I wish you all the peace and exuberance for life that can be stolen from those fleetingly sweet moments between the comings and goings of what we all know as the "worst pain we have ever felt", and I look forward to corresponding here and whatever solace may come of it, until the invention of a detachable head so I can simply put this one in the cupboard.

Have you been diagnosed?

       Potter

I went to an urgent care center (not having insurance) and the doctor wasn't completely attentive to what I was trying to tell him.  He seemed focused on the nausea aspect (which was the least of my worries) and ready to write off whatever prescription he jots down for migraines five times a week, and so gave me some Fioricet and an "If the headaches don't improve (ad nauseum)". 
Having access to the same information as most doctors; I looked up the symptoms myself, and it was textbook cluster headaches, which I even mentioned to no effect.  The same recurring, excruciatingly painful headaches that I had some time ago and were attributed to a vitamin deficiency at the time.  So, no I suppose; not by a physician as I've only seen one, but by all the websites and literature that hit the nail on the head regarding frequency and symptoms.

Jink,

Welcome. I do thank you for the well wishes of peace, but please dont feel sorry for me. At all. I live a very nice life, most of it is pain free these day's.

I first hand do know what a life with CH can be. It can be VERY GOOD. 8-). As far as suffering from the "most painful thing know to man" well those arent my words. i bet getting your pinky toe sanded off with a rough grade peice of sandpaper might be painful enough for that person to argue.

Anyway, welcome aboard. And dry those eyes up and get back in the game.

Coach Bill

Thank you, Coach. Anything you'd care to share about what helped contribute to having more "pain free" days? As regards the sanding; I think I'll take your word for it and keep my toes intact.  :)

Total agreement about getting diagnosed as this is something we just can't do. You need to work with a doctor, preferentially a headache specialist as there are a lot of conditions that can result in very similar symptoms to CH, so the accurate diagnosis is essential.

However you're not alone. All of us have gone through the experience (or supported someone) as they start with these headaches and go through the battle to get a diagnosis. Some like me got there in weeks, but many have gone years, so we know what it's like. Hopefully you don't have CH, but if you do, you've already found an amazing place full of people who understand and get what it's like to have CH.

IF you are diagonosed with CHs by a competent headache specialist, you'll probably be told to ditch the Fioricet crap and be given a regimen designed to help you cope. In general we need three kinds of meds:

a preventative, which is a long term med that builds up in the system, like verapamil, topamax, lithium, etc

possibly a bridge medication like a prednisone taper to assist while the long term preventative builds up

and effective abortives, like O2, imitrex, zomig, migranal, or others similar

That's why we recommend going through the frustration of finding a good doc and getting a proper diagnosis. You can't prescribe for yourself. That, and there are a number of conditions that mimic CHs and are treated differently. Take the time to find such a doc and let us know how you get on. Blessings. lance

Jinx,

As a matter of fact i do have a tip for you. Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and read. click on the about clusterbusters link on the left and read more. it has helped me get my life back.

Get Back in the game...
Coach Bill

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
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Explore your local resources and see if there may be a low/no cost operation to help you.

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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If you have to fly solo, then essential that you learn about what you believe is Cluster. (Problem is that there are a number of disorders which mimic Cluster but which are not headache problems. So, if at all possible, getting a solid diagnosis from someone with knowledge/skill is important.) So, to learning---




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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Explore the buttons, left, starting with the OLUCH site.
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Print out the PDF file, below. When you see a doc, these are the mainline treatments which you should expect to be used. This article will give you a tool to discuss whatever the doc offers as well as serving as some basic learning for you.
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A secondary source of background information and treatments:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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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For the newbie to Cluster or to this group I think a major barrier to getting control is the shotgunning of "try this and try that" which confronts you. The urge to try multiple approaches is understandable when you are in the midst of the pain but....

Effective treatment requires both some knowledge and skill combined with a coherent treatment plan. Over the years, I've become more concerned watching folks manipulate meds/dosing/timing/combinations trying to find the magic bullet when, from a medical perspective, this approach is too often, self-defeating.

It requires skill plus patience to work thru various meds/combinations, etc. until you find the one which works for you. Multiple and/or quick changes are  a barrier to learning what is effective for your body.

This is a general argument for working, if at all possible, with a headache specialist. Too many of us know the price of working with a poorly educated & experienced doc. It can create the same problems as the self-directed diagnosis and treatment approach.
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As difficult as it sounds, develop patience--a core survival skill with Cluster. It takes time to try and various treatments available to us, to play with dosing, to give our body time to signal what is/isn't working, etc. BUT the picture is so much more positive compared to 10-20 years ago.

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