I would just like to start by saying that my heart goes out to all you that suffer from CH.

I am a 30 year old father of one (14month old boy) I was told this weekend by 2 doctors that I have CH. I was told to go on the internet and research it myself which lead me here.

I have the symptoms of having CH, runny left nostrel, drooping left eyelid, watering eye, severe pain behind my left eye running across my temple towards my ear. About 2 weeks ago I started getting headaches in the same area at 8pm every day. It would last a couple hours and go away until 8pm the next night. That pain was bearable at best, until this Friday. I woke up around midnight in the worst pain of my life. I could sleep for a couple hours and it would come back.

Saturday the pain lasted for almost 16 hours. Sunday 6 hours and about a 3 hour break and came back again for a couple hours. T3's were not doing anything at all. Got a bit of relief again during the night. Monday the pain was still coming and going but not nearly as bad as Saturday or Sunday. It was like the pains had peaked for a couple days and started to drop off.

Now it's Tuesday and it is near completely gone. So do you think my story fits with having CH or could it be something else?

Take the Cluster Quiz on the left.

There will be someome to follow who will point you in the proper direction to help yourself.

All the best ,Iddy

Welcome to CH.com. The maximum CH pain usually lasts from 1-3 hours. The location and other symptoms you describe fits CH. The duration you describe does not. Forgive me if I've misunderstood.

Narcotics are not usually effective for CH and most Doctors have little knowledge of CH and proper treatments. In your own best interest you must educate yourself. This site has a huge amount of info on CH. Read, read, and read.

I hope you don't have CH but if you do your at the right place.

Don

I did take the quiz before i posted and had kind of inconclusive results in my opinion. I would just like to hear some of your opinions based on first hand experience, rather than a doctor's opinion that he learned from a classroom.

I'm concerned about being wrongly diagnosed. I'm also concerned about being correctly diagnosed.....

Quote:

I'm concerned about being wrongly diagnosed. I'm also concerned about being correctly diagnosed.....

Dont worry you will deal with it either way.
You need to continue with your research. Knowledge will light your way to managing CH.
all the best and nice to meet you.
the bb

Skyhawk5 wrote on Jun 24^th, 2009 at 12:02am:

The maximum CH pain usually lasts from 1-3 hours. The location and other symptoms you describe fits CH. The duration you describe does not. Forgive me if I've misunderstood.

No misunderstanding. That's exactly what has got me thinking about this. I've been reading tons on this in the last couple days. I'm freaking sacred.

I'll go see my doctor again and talk some more about this.

Feeling pain between the worst attacks is common. Is this what you experince? We call that lesser pain, shadows.

I had a doc ask me two questions one time.... What do you do when you get hit (my answer was: Pace, bang my head, scream, beg for mercy, etc). He said if it had been lay down in a dark room - that would have been the wrong one!

The other question: Have you ever thought about suicide? My answer was "Of course!" He said if it had been "no" we'd have nothing else to discuss. (He suffered from CH).

so I guess that's my yardstick for measusing CH - if you can be still and not beg to die while getting hit -- it's probably something else.

We all handle them differently. Some of us arent' as "violent" as others (some just rock and don't bang their heads).

But rather than concentrating on what it is -- what is your doc going to do for you? Has he given you O2? What prevents has he suggested? Read up on those things.

Hugs BD :-*

Time for some basic education to give you confidence and ease your concerns.
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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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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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