Beginning:
It was 2001 and I was woke up and thrown to the floor, I didn't know what was happening and I crawled to the bathroom. All I could think of was hot water. I ran hot water on my head for what seemed forever and finally the attack subsided. I was thinking this is it I'm dying so I lay there in the tub until I feel asleep. I was diagnosed with migraines etc etc you all know the story and I suffered in alone because I didn't want to hear the doubts of my friends. The first couple cycles I just suffered not knowing what was happening but thinking they were Migraines.

Escalation:
Fast forward 5 years and now I have a wife and a new baby boy and insurance, the beast had been playing nice well relativity nice. When they started to get bad I mean really bad, my wife thought I was exaggerating until my first kip 9/10. I was in the bath again hot water and screaming for it to stop when she came in to help me. She touched my back and I turned on her like a rabid dog screaming, "Get away from me" then passed out in the tub. I made an appointment the next day to see the doc again.

Doctors, Neurologist, and Pain Clinic:
Well my GP didn't have a  clue and I got the normal Migraine, hyper tension, etc but he did send me to the Neurologist. She was the first to tell me about CH and started me on the normal scripts well except for O2 but then she wanted me to go to the pain department. I agree and my first visit there she gave the normal rundown of questions but then wanted to know about my headache problem. After the initial visit she wanted me back the next day at 4 pm right at attack time. I showed up and was put in a exam room, we did the chit chat thing and the dance started. I remember sitting there trying to hold it together and the Beast went full rage. She turned off the main light and called another doctor in. They sat there and watched me battle, I remember the 2nd doctor saying wow it's just like in the book look at his left eye. All I wanted to do was walk away or get my hands on his .......... so I could include him in the dance. But you know how well those thoughts go. Anyway after a 45 min they decided yes I was suffering from CH and the experimentation began.

The "Cure":
I agreed to to all of the main treatments and finally O2 stopped them, you can see my battles if you look up fordent@comcast.net in the member search. I was also suffering from a failed degenerative disk disease surgery and was on pain meds for that.  So they treated me with Morphine and O2. When I say that it was allot of Morphine over 300 MG a day. And it was working the Beast went to sleep, well until they decided  to switch me to Methadone. Walking hallucinations withdrawals from M and the Beast was back. So back to O2 and Morphine.

Don't Do What I Have Done:
That was 3 years ago and I lived in a flat-line state, No ups downs or anything my life was a  great big nothing. So I broke my hip in  freak accident in a  parking lot and the Morphine use jumped to 630 MG a day. BTW in the emergency room for 8 hours waiting for surgery with a shattered hip (I'll take that over a CH attack anytime). I decided to come off the Morphine 3 weeks ago and the withdrawals were truly hell so I thought until 3 days ago. I was feeling better my  body back to normal and I got the butterfly in my temple that jumped to a minor attack in minutes. !! NO NOT FAIR FOUL !!


I'm Tired:
I had forgot about the Beast and he was just waiting for me, I know it could be a normal cycle and we are having a early spring here in Utah. But the dance has changed normally I would get 2 to 4 attaches during the afternoon and evening hours. Now its afternoon and night attacks like the first one I had. The pain has increased and hot water does not seem to help anymore. I will get more O2 but I do have insurance locally now.

I've had it I have done what the mighty doctors have asked and still my life is a wreak. We have 2 boys now and we have moved to Utah because our business has failed we lost out our house and fiscally speaking ruined. I can attribute this all to CH and treatments. I had a very successful business with employees and I could not manage them in the state I was in. So now I'm scared I do not want my young boys to see me during an attack! Or do I want more drugs! I just got my mind back and I'm not willing to lose it again. So now I'm desperate and scared.

Thank you all for reading through my saga, and most of all don't take opiates even if your doctors offer them.

~James

James: You're story is the sad one so often reported here (but much less often than in years past). What so many of us have to offer you is our experience that good, skilled docs have some effective treatment to offer.

The problem has been, and continues to be, that Cluster is so uncommon that most docs have no idea of what they are seeing, much less having knowledge to treat it effectively. But even that picture has improved with the emergence of a few professional groups targeted at expanding knowledge, training, and research. But, to the meat and potatoes:

Do your best to locate a headache specialist. This is the best single step to take to stop your wandering in the desert.

It's essential to get a good diagnostic work-up to confirm what you are working with. In the last few years, we've come to see that there are a number of conditions which mimic Cluster--but which are not headache related--and so it's critical to know what you are dealing with. (See:
Link to: cluster-LIKE headache. Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache")

Clearly, you have invested enough time and pain which has not lead to success. So get a grounded start....
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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. 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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Until you get a solid diagnosis, resist the temptation to try this-and-that treatment because it's possible to treat the pain while not effectively treating the disorder.

Even as you are looking for a good doc, starting to learn about the current understanding of Cluster and become aware of the kinds of treatments which are recognized as effectively. Explore the buttons, left, starting with the OUCH site.

Read this entire article:



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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Print the PDF article, below, to get an idea of how Cluster is trteated. And take the article with you to any doc you see and use as a tool to discuss treatment options.

There is more material to be had, but get started on this batch and finding a doctor--then get back as specific questions/issues begin to emerge so that we can give focused assistance.

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Great post, James. And it echoes what many of us have said over the years. Narcotics are useless in taming the Beast, and dangerous in the long run. Bob has pointed you in a good direction. Let us know how you make out. Blessings. lance