welcome
happy for you,you found a name for your pain!
It's the first huge step for not being a small boat
in a sea storm!
Many of us have been misdiagnosed and mistreated for many years.It started for me at the age of 13 and but was properly diagnosed at the age of 19-20(now 29)as there was a disbelief i could have ch at such young age.There are these funny directions as Ch occurs between 20-40 years old that many times prevent the docs from seeing the patient's case as it should be.First patient's eyes and then the book,not the opposite.
But still you have to get to a good headache specialist and demand for proper mediacal tests and diagnosis.
there are lot of members here form England who can help you directing you to a good specialist.
welcome 

You have an excellent support group.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
=========
Are there any specific kinds of information you need?

 
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]

miakate wrote on Apr 28^th, 2010 at 3:58pm:


Interesting, because a cola just before my normal ch time usually prevents an attack.  It got me drinking Coke at 9am for a lot of my life.  Caffeine is definitely in my arsenal.  sometimes I go right to the source and get a caffeine pill (200mg).  Coffee and tea work too and most people here think the added taurine of energy drinks (redbull etc) increase the effectiveness. 

I also think the cola carbonation feels good just before my headaches, somehow soothes the body.

(how about an eyebrow guy for carbonated, brown, corn sweetened, caffeine water)

--Shaggy

Oooh, guess I forgot in my last post but.....if the aspirin and ibuprofen are not working stop taking them.  They tend to not work on the clusterheads but will eventually work on your clusterstomach.  Initially we tend to take all that stuff and when it doesn't work we take more.  No head relief and then our stomachs eventually feel the effects.  I haven't tried the other stuff you mentioned.

If it has been working then disregard my advice.  I used to take excedrin, then got smarter and just took the caffeine which is the ingredient in excedrin that was working.

Hope you are done for awhile.  Don't forget about it, get your arsenal ready for next time and keep reading here.  I'm sticking around so I can beat it again the next time my shadows start.

Good luck!! (frowny guy to ward off the evil cluster spirits)

--Shaggy

Hi, I was amazed to find this site too, the relief that I wasn't going mad!!! So I gather O2 isn't prescribed on the NHS!! I have my 1st appointment with a neurologist on the 21st May, not sure what to expect or how they diagnose CH, just glad someone is listening to me I'm at the end on my cycle now, I will keep looking at this site, I have go loads of tips so far, I want to be prepared for next time too, take care x