I never needed a "support group" before but I am sure glad I stumbled on this site. After 2 weeks of doctors throwing darts at the wall (MRI, EKG, pain meds, etc.) I was diagnosed with CH but it doesn't seem like they know what to do about it. I was given ibuprofen and sumatriptan with no noticeable effect. I have been getting CH for 3 weeks once a day at about 7-8 pm for approx 30-60 mins. Kind of a lightweight compared to some here. The time mysteriously shifted to midnight the last 2 days. Tonight I tried the hot shower / slamming red bull combo and it got me down to about 25 mins. The super hot shower seemed to help take my mind off the stabbing pains (plus muffled my cries for help). I called 3 headache specialists today and all are 2.5 weeks till they can get me in. I even begged which I'm not proud of. Not sure I can make it that long. I have always been very healthy so I can't navigate the health care industry very well. Doc says he can't prescribe O2. Gave me a prescription for high blood pressure med but only 50 mg and the pharmacy still hasn't been able to fill for 2 days, told me it will be ready Saturday. The red bull has me wide awake at 2:30 am so no sleep again tonight. This has happened in past years but never been diagnosed with CH. Any advice would be appreciated.

First, find a doc who knows headaches. What you report so far sounds like a deadend trip in the making.
---
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.
====
Read the material on the left re. oxygen. Print out and take to the next doc you see. It's becoming a standard treatment.
==
Start learning by exploring the buttons, left, starting with the OUCH site. Print out the following article and the one at the bottom (PDF). Take a copy with you to any doc you see and use them as a discussion tool.
---
 
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]
===

---

Ouch. You're at the beginning of a long road. The good news is this is the toughest part, it all gets easier from here. Sounds like you're an episodic sufferer, you go months pain free, then the cycle starts up. Once you find a doc who knows what he's doing, you'll probbaly find yourself on a 2 pronged regimen.

1: A prevent med. That's the med you take daily to reduce the intensity and frequency of your attacks. I use Lithium, Verapamil is a common first line prevent, but at levels higher then most general practitioners are used to. Topomax is popular with many here.

2: An abortive strategy. An attack starts, now what. Oxygen should be your first line abortive. A doc who says he "can't" prescribe oxygen is full of sh$$, he means he "won't." I can abort an attack in 6-10 minutes with oxygen. Read the oxygen info link on the left as it must be used correctly or it's not effective.

Imitrex injectables or nasal sprays are effective for many. The pills take too long to be absorbed so are generally not useful for us. Zomig has a loyal following on the board also.

For now, get some melatonin from your local health food or vitamin store. Start with 9 mg just before you go to sleep at night. It gives relief for many from the night time wake up hits. You may have to go as high as 12 or 15 mg to get relief and it may take several days to start working.

If the headaches stop, don't stop in your pursuit of a good headache specialist. CH ALWAYS comes back. We have a saying around here, live life between the hits, enjoy your pain free time, ALWAYS be ready to do battle with the beast.

Welcome to the board.

Joe

Well now Zappa Dog, welcome to our crazy club!

Yes, you night-timers should be careful with the redbull/caffeine treatments.  I am a morning guy so caffeine is a perfect solution at times.  Joe talked about the melatonin tonic, look deeper into this site for what the melatonin crowd has been using.  They combine it with other herbs too and a lot of people say it helps a lot and lets them sleep.

Get some O2, there are other ways and they are explained well on many threads here.

People have good luck with specific prescription meds and everyone typically has horrible luck with knowledgable doctors.  **The exception is when they get a recommended doctor that knows cluster headaches**.  Most don't know about it or don't know how to treat it.  The emergency room seems like a waste of time too, given people's experiences on this site.

For alternative therapies that seem to almost universally work, but are not legal, but your neighborhood teenagers are taking them anyways, go to clusterbusters.com. 

All this is throughout this website.  Read a lot and use what seems right for you.  Don't put too much stock in your doctor unless they are really sharp with this specific condition.   8-) (sunglass dude says take matters into your own hands!) and have a nice day :)

--Shaggy

ps, nothing wrong with a little begging.

Well I can tell you that you just got some really valuable advice from 3 CH vets who know what they are talking about...rest assured you can take it to the bank!

This recent Newsweek article elaborates more on one of the approaches Shaggy mentioned that we've seen some people here have impressive success with:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And to elaborate a bit more about the O2 - since your doctor is an utter a-hole and all, well plenty of CH people bypass the doc/prescription thing entirely and get their O2 from a welding supply place. It's reputed to be the same stuff you get from a medical supply place.