Hi, Im a 16 year old male and i just experienced my first cluster head ache in my life, the pain was indescribable. It felt like a chizzle was being hammered into my right eye over and over for 4 hours. I was just wondering since this is my first one i had, will it happen again? Just because you had one does it mean i will have them again in my lifetime? Also what couldve triggered me to get one, 2 days ago I tried mdma and i was thinking that the chemicals being released in my brain couldve caused this reaction. Any support would be great and an answer would be nice to.

Whoa! First issue is: who told you that you have Cluster? Don't assume based on stuff you have read here or elsewhere. There are many, many conditions which appear to be Cluster but which are something quite different. So, if you have not done so try and find a headache specialist and get a good diagnosis.

Many docs have little/no usefl experience/training in headache so try for a specialist. Following will give you some leads:

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 in the OUCH site, left buttons, for some background information and, while technical, you will find this article worth a read.
---



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]
==
Second, please don't try and predict the future. IF you have Cluster, trying to forecast its development and your personal experience is impossible at this first stage.

In any case, getting a good work-up is the essential first step.

We'll be here for you on the whole trip--if it's clear you need our help.

Best,

Hello, KSONT. Bob's right; it's not a good idea to assume a diagnosis on our own. I notice you are 16. You need to bring a parent or guardian into this with you. No need to walk alone, and the variations of what might be happening to you are quite complex. It helps to have someone assist you in sorting it all out. And who knows? You might get better news than "you have CHs."  Still, if this is your diagnosis, there is help and as you have been told, we will walk with you every step of the way. Keep in touch and let us know how things go for you. Blessings. lance

Nobody has just one cluster headache! (that's why they're called clusters).

Welcome to the site KSONT!
Take Bob & Lance's advice and get your parents in on this to get you to a good doc or neuro for a proper diagnosis.

I had my first clusters at 17 and now I'm fifty-freakin'-one years old and just had my most recent cycle this past January.  Even with all the years history of clusters, whenever I get them (about every four years), my doc still wants me to get an MRI or CAT Scan to rule out any thing else.

You are lucky (wait, is anyone "lucky" who gets these things?) change that to: you have an ADVANTAGE in that (IF you indeed have CH) there is WAY more information on how to treat them than when I was your age (can't believe I'm actually saying stuff like that: "when I was your age..."). This was my most pain free cycle in my entire life because of new stuff for treatment I read about on this site.

Seriously, get a proper diagnosis first, and if you've got CH, we're here to get you thru!

-Gary

Hey KSONT,

Your concerns that this could be CH are understood, but if it is CH, there truly are some effective ways to deal with it now, including non toxic/side effect free treatments like breathing high liter flow 100% O2.

Also, approximately 80% of us CH'ers are episodic which means our episodes only last maybe a month or two out of each year.

Doctors routinely misdiagnose CH and/or prescribe ineffective treatments. You could avoid that risk if your parent(s) could get you to an actual headache specialist neurologist. Garden variety neurologists are often ill informed.

I suppose you're aware that using MDMA is a bad idea, CH or no CH.

Sorry--but it's the dad in me.   ::)

Best wishes,

George

George wrote on Mar 29^th, 2011 at 12:10pm:

I suppose you're aware that using MDMA is a bad idea, CH or no CH. Sorry--but it's the dad in me.   ::) Best wishes, George

Actually, while I can certainly identify with the dad in you, George, there are some indications that MDMA could have some of the same preventative effects as the other psychoactive alternatives.

And in particular, I know that a number of PTSD patients have reported some very positive results using MDMA.

Crazy world, eh?

One of the after effects of MDMA can be severe headaches.

If you have another attack one thing I suppose you could try right at onset if you have a car handy is the old "put your nose up to the blasting car air conditioner vent and deep breathe the freezing air for 10-15 minutes" trick. It can abort an attack for some of us some of the time, and I figure it would be harmless whether or not you end up with a CH diagnosis or not.

Or if you're otherwise in good health, an extremely vigorous burst of all out exercise - like sprinting - can knock out an attack.