hi just started researching cluster headaches today, and found this site...had the worst few years of my life since i was late 16 early 17 i started getting a completly differnt type of headache ( suffered from migranes all my life )
but this was the worst pain ive ever had, its made me collapse and vomit quiete a few times as the pain got so bad, got really paranoid that i had a brain tumour, and mixed with depression last few years it hasnt been much of a giggle...

ive been to the neuroligst several times had MRI's,been to my local gp several times and had loads of differnt diagnosis my neurologist told me many people suffer from this and it comes from stress,

my local gp told me it was a synasis (spelling) infection and only recently my parents friend whos a doctor / pychologist / clever bloke told me it was cluster headaches, to which im a little bit skeptical,

basically i just wanna know straight up whats wrong with me, i recently havnt had a really bad attack but i still get the pressure behind the eye(s) / ears feel like theyre clogged up, my jaw and teeth hurt, my nose still feels like i have an infected sinasitus (sp) but apart from that i havnt had an attack in a few months, which happened from drinking a beer, which seems very strange to me anyway heres my questions for anyone whos still reading :

do you get a rock solid neck before an attack ?

do you get an attack within half an hour of drinking a beer ? really fancy a beer just cant risk it anymore

Ive read it may in some way be linked to seratonin ?

will i get this for the rest of my life or is it a phase ? i dont even remember what a normal headache feels like anymore

its probable i come under the cluster headaches as i can relate to it being the worst pain you can have ' but why would i get them from drinking a beer etc ?

sorry for the rant, & for being unarticulate, and cheers for anyone who replies

cal

hello mate, yeah of course, ive seen my old dear suffer from vision loss which was a so called type of headache and ive also lost the right side of my body which was apparantly a headache type....
When you say Cycle is that typical ?
this is probobly the wrong section but why do people suddenly get them ? Its kind of refreshing knowing theres other people going through it as well, ( not in a nasty kind of way i would wish it apon my worst enemy ) but also depressing knowing that it might never go away
again wrong section probobly but my gp kept telling me to stick with amitriptiline (spelling) im not to keen on drugs and prefer natural stuff,but it does seem to help, is anything recommended, ive stuff stuff on oxygen which seems odd ?

thanks again
cal

Without a solid diagnosis you can't do anything productively.
----------
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.
================
Follow the link to the whole article and see if this helps your understanding:

 
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 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]

calum wrote on Jan 13^th, 2009 at 4:43pm:


Not trying to speak for Bob here, but I'm pretty sure he means you can't treat it effectively if you don't know for certain what it is. 

There are many different headache types, some of which can mimic aspects of cluster headache.  Medications or treatments that work for one type may not work for another.  Some medications can be dangerous if used to treat the wrong headache condition.

So it's important to know for sure what you're dealing with. 

We'll try to help as best we can, but you really need a definitive diagnosis.

Welcome, and best wishes,

George

cheers for the replies fella's

@ george yeah i agree, didnt make it too clear but the guy who diagnosed me (parents friend) has been my 'unofficial' doctor hes been seeing me since before i got cluster headaches and this was last year he diagnossed me, & i was trying to say that i was paranoid it was something much worse as cluster headaches doesnt exactly sound how it is...but since ive done a small amount of research its quiete hard to disagree now

@joe the neuroligst gave me a term for what i apparantly had as a fancy name that was caused by stress that is quiete common...my 'unoffciail' doc told me he knew the neuroligst very well and hes quiete disrespected as he takes on so many differnt cases, which in turn he gives little care to patients

the one thing the neuro did say was that the trigger was a spasm in the neck muscles which causes it...
i dont know why u thought i started late in life, im 19 and ive been having them since i was 16
is theyre a generall concensuss to what causes the cycles, is it stress or does it differ?
yeah the site has been a big help in the very little time ive used it
thanks for your replies
take it easy

thanks alot george, really appreciate it
im going to book a doctors appointment tommorow and talk about the oxygen and anything else i learn, as im not keen on being dependant on amitriptiline (spelling)

Sure.  I'll look around for more information, but this copied from another post by bbz.  (Thanks, John, LOL.)  I don't know the source, but it goes into a bit more detail:

Quote:


Best,

George

calum wrote on Jan 13^th, 2009 at 7:28pm:


Well--it's a physical malformation, which may or may not be caused by genetic factors.  The genetic factors that may contribute to cluster headache is a whole other conversation. 

Basically, it appears that genetic factors may come into play, but any genetic connection is probably weak.  There are examples here of multiple people in families who have CH, but there are also many here who are isolates--no other relatives with cluster headaches.

Best,

George

Most people having a Cluster headache for the first time think it is sinus-related.  Some have gone so far as to have sinus surgery.  To no avail.   CH is NOT in your sinus...it is caused by a deformed or dicey  Hypothalmus gland.

The Doctor who told you that these are CAUSED by stress, probably meant to say triggered by stress.

I'm sorry you don't have the patience to read around here.  You'd be well to try however.  it will answer a whole lot of your questions and when you find a Doctor who is knowledgeable, you're going to be coming from a position of power....not hopelessness.

We all certainly are here to answer questions but you MUST do a lot of the reading work for yourself, as this condition has so much for you to learn about.

Linda

And you probably WILL learn more on here...it's a rare disorder, so not a lot of docs or even neuros know anything about it- much less the very latest research.

If you are keen on more "natural" approaches, there's a thread under Medications on the Synergy mixture- it's an herbal recipe that lots of folks are finding helpful.

And DO check out clusterbusters.com- they are even going to do a study at Harvard on it, it's had so many reports of success.

BUT- print out everything you can to take with you to the doctor, especially about oxygen use!!  Because if they aren't up on the latest treatments, they are very likely to blow off any suggestions you make if you don't have evidence to back it up.  Good luck!

calum- please read everything you can at this link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

and welcome!

There are varying theories on WHY oxygen stops an attack. Some say it's the vaso constricting effect, there are others who say it's significantly more complex then that. I don't care!!!  When I feel an attack starting, I huff pure 02, in 6-8 minutes, I'm pain free. My attacks untreated go 1-2 hours, with a typical 3-6 hour "CH" hangover that leaves me feeling like I went 10 rounds with a boxer. If you're one of the 70% or so that it works for, it's an almost miraculous treatment. It doesn't lessen the pain, it makes it completely go away. Definitely an avenue you want to explore.

Joe

nice one for the link
i dont appear to be the average patient at allaccording to that
and that kip scale does no justice at all
that mushroom study at the bottom looks very interesting