Hello to everyone my name is Brian and I was diagnosed as being a CH a few years a go. Two nights a ago I rolled out of bed to my knees after what felt like a cattle prong had been jabbed into the left side of my skull. The CH during the middle of the night as many of you may know are much worse than the day time ones. The day ones you can recognize a little early on and can prepare to defend but when the beast jumps in your head during your sleep no matter medicine that you have on hand it’s too late.   

My cycle started about a week ago which is a little late for me to be enduring this during an October month. My worst CH appears as early as May and as late as September. I have three levels of pain associated with CH they are shadow, moderate, and severe. The shadow usually occurs during morning and I can fell it coming as a storm cloud moves in to a town. At this point if I hurry I can do something to suppress it not make it go away but suppress it. The moderate level usually occurs in bed when I have obviously taken a medication that has been somewhat effective but the CH is still there. Severe is when I wake up in the middle of the night rolling out of bed to my knees.

I have seen family doctors, allergy specialist and neurologist for my CHs and most of  the time that I have seen them is when I’ve either  been able to suppress the pain or I’m just not having an attack. I hate these time because I get the impression that I’m a nut. I’m not there to score some pills as they seem to treat me. I do however sincerely want a solution to this painful condition.

Well I hope you guys and gals as well and if you’re not feeling well at least the lord above knows your pain.

Take care
Brian

Hi Brian and welcome. You are with people now who know you are not "nuts" and we will help you in any way we can.

I will be the first to preach the use of o2 to you.
100% o2 at 15 lpm with a non-rebreather mask, no outside air. Get on it at the very first sign of an on-coming attack.

This for most here is our first line of defense, me included. Others will be along soon to help with advise.

Sorry you had to find us. You are not alone with this anymore.

  Barry

There is not much you can do before finding a good headache doc. Start here:

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.  Call 1-800-643-5552; 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.
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Download this article (link provided) as a start in learning:

 
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 best overview articles I've seen. Suggest printing the full length article 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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Suggest you explore the buttons (left) and their internal links. Some good material which will get you moving.

Quote:

and so is the sarge. Good advice, do it.
all the best and welcome to headbangers club
thebb