Hi Guys,

I am a self diagnosed cluster headache sufferer.  I'm a 31 year old male, living in South Africa.

I had my first CH a month or so ago.  I had no idea what was going on.  I had a dull pain on the left side earlier the day, but thought it just to be from a lack of sleep (had to pull an all nighter the previous night at work).  I had a couple of drinks with friends that night and went to bed.  I woke up two hours later and thought I was having a stroke.

I had the most intense pain on the left side of my head, my eye was swollen and tearing out of control.  My left nostril was running like a faucet.  I could not go back to sleep.  I just lay there sobbing.  I took normal pain meds (2 hits of aspirin and 2 hits of ibuprofen), which made absolutely no difference.

Luckily I had some Rizatriptan (Maxalt) in the medicine cabinet I had used for normal migrains in the past.  15 mins after the Maxalt, the attack was gone.

Last night I had another episode, took another Maxalt and 30 minutes later no relief.  The attack started after I went for an afternoon nap (again I had some precursory pain, due to the same circumstances as the previous episode).  After 30 mins I begged my wife to take me to the ER.  My blood pressure was higher that normal (normally mine is a bit low), but this could be due to the pain & maxalt.

At ER I had some schedule 6 meds on IV and was feeling better within minutes. 

By reading the forums it seems that once you get CH you have them for life.  Does God hate me that much?
I can't bear a lifetime of this...

    The very last sentence..... And who said that God doesn't have sense of humor! <bg>


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 Boy uk wrote on May 9^th, 2010 at 2:42pm:

As long as your advice is good keep on plugging away.

             Potter

I'm with Nigel... i found that energy drinks are really helpful!
But you have to know not to drink it too much coz' you might become addicted to it.
Also i found that every day walking in open air might help you too (I'm doing it because i don't have and oxygen prescription)

and welcome to our family
Anna

Brew wrote on May 9^th, 2010 at 10:46am:


Hi Brew,

Thank you for your concern.  I have been to the neuro a couple of times now (long time regular migraine sufferer).   I have had CTscans/MRI/X-rays and electrodes stuck to my head.  The neuro says there is nothing 'physically' wrong with me.

Had warning signs of another attack yesterday (shadows), I immediately drank two cups of strong coffee and it stopped it in it's tracks.  I got the tip on this message board! 

Thank you!

Hello and welcome Jaco,
   I'm 35 and have suffered from episodic cluster headaches for 18 years..  I agree with the others....  see a neurologist for an official diagnosis and inquire about oxygen or  if the maxalt isnt working, then maybe a different abortive..  It takes some fighting, but it CAN be managed.
There's also plenty of good info here...
-Steve-

sorry, I meant whimsey.

23 yrs. ago I self-diagnosed also.  THEN I went and got an official diagnosis from one of the worlds leading headache professionals.  Finding a knowledgable Dr. who is willing to work with you in finding what will work best for you is half the battle.

Finding all of us hereto help and support you,  ain't too shabby either.