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

If you are suffering from cluster headaches, alcohol is a very common trigger during a head ache cycle. When I am on cycle I won't go near alcohol of any kind.

My neck knots up so bad it feels like someone beat on me for a few days after. I get the clogged sinus, the pain right behind the eye. If you look up the trigeminal nerve, look at its path, you'll see why the eyes, jaw and teeth hurt so much when it gets triggered.

Take the cluster quiz on the left and see how you score. There are hundreds of head ache types, and meds which are beneficial for some, can be harmful to others.

If you do get a solid diagnosis of CH, it may be for life, it may not. Some people just stop having them others  don't. Not much rhyme or reason, no reason to beat yourself up worrying one way of the other.

Welcome to the board, if it's CH, hope we can help you, if it's not, hope we can steer you in the right direction!

Joe

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

*seen

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. 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.  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: 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]

yeah sorry im from the U.K, ive already seen a neurologist privately etcetera
what do you mean productively ?

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

yeah sorry im from the U.K, ive already seen a neurologist privately etcetera what do you mean productively ?

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

Yeah I guess I didn't explain that very well! Cluster Headaches got that name because they tend to come in "clusters" or cycles, with remissions lasting months or even years before the beast comes back again.

It's hard to say typical, because they manifest themselves differently in different people. My early cycles were a more common form. For the first 20 years, I caught 2 cycles a year. Roughly in the fall and the spring, generally right around the time we'd change the clocks. Mine went 8-12 weeks, 1-2 attacks a day. Then BAM they're gone and I am "off cycle" again. I started in my late teens, others like you have started later in life.

What Bob was asking is has a neuro diagnosed CH? If so then it's a mastter of figuring out a treatment regimen. Oxygen is enjoying about a 70% success rate with people on the board who have tried it. To be effective, your lungs must receive only 100% oxygen, no outside air, no exhaled air. This is best accomplished using a Non Re Breather Mask at a high flow rate, at least 15LPM. Started at the onset of an attack I can abort in 6-8 minutes. Certainly worth a try given it's track record so far.

Keep reading, this site is a wealth of knowledge you need!!!!

Joe

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

The following link may be helpful in giving you some general information--be sure to take a look at the links at the bottom of the page as well.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Since you're from the UK, you may be interested in exploring the OUCH UK website as well:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As far as causes go, there's been some strong evidence that CH may be related to a malformation of the hypothalamus in the brain.  I'm hoping that someone here will be able to provide some good links for you.  

Stress is a trigger for some, but it seems to reduce the number of attacks in others.  For a good number of us (me included) there seems to be no relationship at all.  

The stiffness in your neck is an autonomic symptom that's fairly common, but it's probably a result of the cascading events that occur during an attack, and not a cause.  Around here, we often call this swelling of neural ganglions and surrounding tissue "cluster lumps".

The best thing I can suggest is that you continue to read, read, read.  Plenty of information here, and it can take a long time to get through it.  

If you have any questions, don't hesitate to ask.  We'll be happy to help.

All the best,

George

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)

As far as causes go, there's been some strong evidence that CH may be related to a malformation of the hypothalamus in the brain

^ could you expand a bit on that please ? its not that im lazy, its just im not big on reading as i have an attention disorder, gunna type it in wika all the same

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:

What are the causes of Cluster Headache? The cluster headache condition appears to be caused by an abnormality in the hypothalamus. The Hypothalamus is the control center of all autonomic regulatory activities of the body. It has been said that the hypothalamus is the brain of the brain. It is the hub for automatic and endocrine homeostatic systems such as cardiovascular, temperature, and abdominal visceral regulation. It manages all endocrine hormonal levels, pituitary gland regulation, blood pressure regulation, hunger and salt cravings, feeding reflexes, thirst, body temperature, hydration, heart rate, bladder function, water preservation, hormonal/neurotransmitter regulation, ovarian function, testicular function, mood & behavioral functions, wakefulness, metabolism, sleep cycles and energy levels.sensory processing, and organizing body metabolism, as well as ingestive behaviors. It appears that almost everything the Hypothalamus does is related in some way to the management of brain and body connection, linking the psyche (mind) to the body. This abnormality is an extra-thick layer of cells. It is something CH sufferers are born with, although Chiropractors will tell you it is caused by misalignment in the neck or spine. This was one theory, but it has been disproved long ago - so don't waste your money. Your odd hypothalamus sends scrambled messages to your nervous system, causing vascular constriction and other as-yet unknown effects which cause immense PAIN which is not treatable with any normal pain medicine. CH headaches are not actually a 'headache' like a migraine or a caffeine withdrawal headache. It is more like a type of direct brain-dysfunction that is more painful and disabling that anyone can imagine.

Best,

George

thank you, so basically we've all got crap genes

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

thank you, so basically we've all got crap genes

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

sorry to be annoying but how does the sinus come into the equasion ?

and ive read that most people get it in one eye and one nostral
the worst ones ive ever had that caused me to collapse & throw up have usually always been pressure in both eyes both ears and all of my nose and tight all over the top of my head, is that normal ?
sorry rubbish at explaining things

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

thank u linda
yeah well to be honest ive learned more in an evening on here than years listening to doctors and neurologists

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!

cheers man will look it up, yep will do...what is the main use of oxygen tho? relaxing the muscles in the brain i suppose ?

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

and welcome!

thanks, cant see too much about what oxygen actually does but apparantly it helps prevent it

if we all have Hypothalamic dysfunction, is there a link at all with tumours or aneurisms ? theres a lot of links between migranes, sinus infections with tumours, surely there could be with ch too ?
also it says it lasts between 15 minutes to 3 hours ? ive never had any lasting that short ? maybe 3 hours possibily

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

No tumors.
Here's the source George.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
the bb 8-)

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

clusterbusters.com
There is no normal with CH. ;)
all the best
the bb

i suppose, i just read some of the stories on the front page, 'it dissapeard as quick as it appeard' is this the case with everyone ??
mine dont go unless i take medication to make the pressure go,

hi calum

sorry you are having it rough just now, but may i suggest you give the UK helpline a call  01646 651 979.

All the volunteers are either sufferers or supporters and have a wealth of experience in answering any CH related questions

good luck

Sandra xx

hi sandra sorry i didnt mean right now but in general
i havnt had a full blown attack in a few months, all i get at the moment is mild pressure behind the eyes / ears / neck / nose
& im not really the kind of person to call helplines really

it's entirely up to yourself Calum, the offer is there, but we can help you get on the "right road"
:-/

Quote:

it's entirely up to yourself Calum, the offer is there, but we can help you get on the "right road"

So I think any road that leads to successful treatment of this malady is the right road. Even if you have to take a left. Please explain what the right road is in your opinion.
all the best
the bb

the "right road" i would say is different for you all, but phoning our helpline may help calum to make the decisions he has to make to get him there!!!!

all the best

Sandra

hi mrs mac thanks for the support im a very stubborn wee ladd though !

can anyone link me good articles for the GP, as im going to see her tommorow & collecting info
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - is good but is not very 'doctery' and only really talks about symtoms
im going to try and find stuff about dysfunction of the hypothalamus etc

In a cluster headache attack those arteries swell up up...wayyyy more than they should and that causes us  pain.   A vaso-constrictor is what we need.  Hence oxygen, Imitrex and other vaso-constrictor drugs we take.   Alcohol dialtes out arteries..as does some heart meds.   Think.. narrowing the arteries during an attack as opposed to dialating them.

someone posted that in another thread, i cant find any articles on vaso constrictors, arteries etc, could anyone point me in the right direction please?

suggest you ask your gp to refer you to a neurologist who specialises in headache conditions

also have a look at ouchuk.org lots of good info on the uk site too

do you already use oxygen?

Sandra

ive already gone down that route, yeah ive printed off a page or so from that site
nope thats one of the reasons im gunna see her about though !

have you printed off the Home Order Oxygen Form (HOOF) it is in the downloads section and is partially completed for CH Sufferers, all your GP has to do is fill out your details and the surgery details then FAX it off to who ever your oxygen supplier is!!!

where and when did you last see the neuro?

sandra

cheers, gunna look for it now nice one!
last time i saw him was after i got my MRI results said that there was no tumours but something to do with a spasm in my neck which caused the whole thing...apparantly & told me to stick with amitriptiline, that was late 2007 some time !
edit, download section ? on this site ??

where was the neuro that you saw!!!  Was he a headache specialist, very important that whoever you see knows about CH so that you can get the correct treatment!!

good luck and remember the helpline is there for you whenever you are ready to phone it!!

Sandra

i was only diagnosed by a doctor who isnt actually my doctor late last year, and i just dissmissed it as cluster headache doesnt exactly sound like how it is does it...so i was looking into types of headaches and then started looking into it and here i am !
the neuro was based in essex as well, & nope he wasnt
do u know where abouts the HOOF form is ?

On the main website ouchuk.org then click on downloads and then click HOOF Form, download it and print it off

ask your gp to refer you to neuro who specialises in headache conditions  i think there may be one in Basildon a neuro centre that you could ask your gp about!!

Sandra

found it, ill be sure to ask her as ive still got a ton of questions, thanks alot for your help !
take it easy

no probs Calum, hope it helps!!!

apparantly oxygen has no place in a domestic environment...& she looked at me when i said theyre completly differnt to headaches and have no relation as if to say no theyre not...
get prescribed some new nasal spray simular to the effects of oxygen...anyone had this ?
getting lumps on my neck and the back of my head stings like hell, rather worrying

calum, please phone the helpline, we can help you through this, but it is much easier if we can speak to you direct!!

01646 651979

there is help for you with getting what you need.

Ask your GP to look in his/her BNF (their prescribing bible) under Cluster Headaches and they will see that the only licensed treatment is imigran injections and tha O2 is also mentioned there!!

You are not the first person to have problems with their GP with regards to getting the meds you need, but there is help out there, and honestly the helpline is manned by either sufferers or supporters who know what you are going through and can help you

Sandra