Hi my name is Danielle i am 19 years old and have been suffering from cluster headaches since i was about 16 i was only diagnosed with these in november last year when my GP refereed me to the royal infirmary because he couldn't do anything else for me. The hospital told me there was nothing they could give me to get rid of them but there was other things that could be tried but only if i felt they were getting worse but i had to go back to my GP for them so i am going back to him on Monday. Everytime i get an attack no one understands me they just think it's an ordinary headache like my work they just odon't care and i'm at college and i take days off college when i get these attacks becuase i just can't concentrate so i end up just not going. I feel like these  are ruining my life and for the first time i've found this website where people for once undertsand what i'm going through and how i feel.

hope to here from anyone soon x[/size]

Welcome Danielle!

Until you get to your doc I suggest you read everything about CH (start with the links on the left). Many docs are clueless about this condition so it is up to you to "educate" them.
Make sure you ask your doc about O2.

Until then you can try energy drinks and strong coffee to abort the hits or at least lessen the intensity.

Forgot to add: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is another good source

Oliver

Hi Danielle,

Sorry you have to go through this crap.  You are among people who know what you are going through.

check out this letter for you co-workers  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Keep reading all you can here and take all the info to your doc.

                                            welcome to the group
                                                       JPC

Welcome to the board, Oliver is right. Unfortunately this is a rare disorder so few doctors are well versed in its treatment. Sitting down in front of your doc and saying "fix me" is a sure fired recipe for a lot of pain.

Start reading like carzy. Most people find the best response to this condition is a 2 pronged approach.

1: A good preventative. That's a med you take daily, while on cycle, to reduce the number and intensity of your hits. I use lithium, there are many others to read about on the meds board. All require working closely with your doc.

2: A good abortive regimen. A headache starts, now what? Your first line abortive should be breathing pure oxygen. I cna abort a hit in 6-8 minutes using oxygen. It requires an oxygen tank, a non re breather mask, and a high flow regulator, at least 15 LPM. There are many other abortives to read about and discuss with your doc.

Welcome to the board, Hoping we can help you!!!

Joe

You are about to learn an old lesson: We have to educate our doctors about this uncommon disorder before they can understand us, much less help us!

First, start to educate yourself.

1. Make contact with a most excellent support group:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

2. Print the whole article for your benefit:

 
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 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]

3. Print both of these articles for your doctor and use as starting point to discuss treatment options. Since both come from good medical sources, your doc will find them more comfortable to accept what you are offering.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)

You have a new favorite word now. Its OXYGEN!!!! Dude i can knock out a cluster in less than 7 minutes now that i got turned on to Oxygen!!! Coach Bill

Hi Danielle

You have come to the right place. All the info you could possibly imagine.
Not to mention an amazing group of people who really care.

All the best in your battle.

Walk in peace :)