Hi Pat

some of what you describe dose not sound like clusters, but then everyone's experience of ch seams to be a little different.

Have you taken the cluster quiz (link to the left<<<<)

Your next move should be to go and see a headache spesilist and get a formal diagnosis as simtoms of ch can also be mimicked by other more serious conditions.keep a diary loging time of day , intensity, how long it lasts and meds used during the attack. this can be realy helpfull to a specilist when dealing with this sort of thing.

A beiliveable treatment or at least something that may help is energy drinks like red bull , a can drunk as quikely as possible right at the start of an attack can reduce pain levels or even stop an attack , it's worth a try while your wating to see your headache specialist.

Good luck and God bless

Nigel

Edited:

Pat I am sorry you are going through such pain.

I am not saying you don't have CH but....Some of your symptoms sound like meningitis did your doctor test you for it?

I agree with Bejeeb and Nigel you need to seek out a headache specialist or at minimum a neurologist.  There are many different kinds of headaches see the links below for different types of headaches on the NIH website or the PDF of same article.

NIH Website Headache Article
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

PDF of Same NIH Headache Article
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I hope you find some relief soon!

Many of us have had to learn: We need to more about CH than does our doc!

Explore buttons, left, starting with the OUCH site.

PDF file below.

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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 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]
===

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience.. Highly recommended.

Hey Pat

For good info on how to get going with the O2, you'll see an awful lot of us recommending the oxygen info link hopefully viewable for you to the left of this page.

It covers the high LPM/non rebreather mask aspects that make O2 use so much more effective than the lo flow/rebreather approach still ignorantly clung to by medical professionals.

Many of get us a prescription from the doc for O2, then just completely disregard the instructions for flow rate.

You'll probably need to mail order a regulator and mask.

If stuck without an O2 prescription, lots of CH'ers just go rent tanks at a welding supply place (they're the same as "medical" O2, no welding knowledge required).

Your local VA may have its own supplier contracted for providing O2. Talk to one of the advocates there.

Pat,

Don't worry about not having the same symptons as others. For years I could lie still in a cold, dark room and find peace. A couple of years ago that stopped working, and there is nothing I can do now other than rocking and clutching on to my head as tight as the pain will allow. Sometimes I can barely walk, sometimes I get sick, sometimes I can't speak, sometimes I just wimper and cry.

Remedies that once worked have absolutely no affect anymore. Days that I used to get hit have turned to nights that the beast visits. I haven't slept a full night in over 6 weeks.

Finding a doctor that you trust is paramount. And finding one that will listen to you and work with you is just as important. Continue to do your own research.

Good luck to you.

From a fellow CH sufferer in OH,

Katie

Dang Bob...

That's great info dude...

Thanks!!

coach_bill wrote on Oct 11^th, 2010 at 3:34pm:


Ha Ha Ha!!

Ya got the Browns.
Really did enjoy there game last weekend, the trick plays, especially the fake punt. Ballsy, especially trying that from your own end of the field.