Hi, my name is Richard I live in London, England, I suffer from cluster headaches and i'm so glad I've found this site!
For me it started about 6 years ago, I woke up during the night with intense headache pain, I took loads of painkillers and it went away after about 2 weeks, then around 2 years later the same thing happened, I searched the internet and discovered about cluster headaches, again it went away after a couple of weeks.
Now it has happened again, my nightly headaches have returned after approx 2 years, it doesn't happen every night, I know when I will have an attack, I am happy that tonight I know it's not going to happen, but I got it last night and may get it tomorrow night, my doctor doesn't listen and just tells me to take paracetamol....I'm happy to know that there are other people out there that suffer from the same thing and understand the unbelivable intense pain that I sometimes suffer.

1: Welcome home!

2: Dump that doctor!

If you are in fact suffering from CH, you have found the most comprehensive collection of information on CH, anywhere! And we need to get you to a doc who knows CH and its treatments. Sitting in bed waiting to get hit, then tying to ride it out with OTC meds is unacceptable. The danged things hurt way too much. Read the oxygen info link on the left, it should be your first line abortive, proving almost miraculous for many on the board.

Really glad you found us. Now we just need to get you to a qualified neuro to confirm your diagnosis, and get you on a decent treatment plan.

Joe

Hi Richard. So you are diagnosed as a clusterhead?
In that case you should get the treatments meant for it, otc painkillers will not help at all.
Maybe you should get another dr, as Guiseppi said.
Oxygen is advised by most, if not all, here. Furthermore there are Imitrex injections, or Imigran as we Europeans call it.

Find out as much as you can on this site.

PF days to you, Pascal.

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Start learning about the business:

 
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]
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The GB OUCH group can help you find a good doc--absolute essential first step!

Then print these lists of the most common treatments. They will give you a good idea of whether your doc is using current thinking in his treatment of you and they are a tool to guide a discussion about treatments.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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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

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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:
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(Thanks to "cluster" for link.)

Welcome,


    There are many ways to fight back CH. But it sounds to me your 1st line of attack should be getting a new doctor before your attacks go into hiding again, This way your ready for the next cycle... Because the one certain thing i do know about CH is once you get them they ALWAYS come back, ALWAYS!!!


                   Best wishes,   coach bill

Many thanks for your replies, I have not been officially diagnosed as a "clusterhead", but having read lots of info on the internet I'm certain that I suffer from CH's at approx 2 year intervals. I was indeed correct last night, I did not have what I have seen described as "The Shadows" (a warning that an attack will occur), and I'm happy to say that I do not have The Shadows tonight either, so I'm not expecting to be woken up with severe pain tonight either, but I do know the demon has returned and I expect several CH's over the next couple of weeks before it disappears again for another 2 years or so!

Having read some posts on this site and elsewhere on the internet I actually consider myself very fortunate, I only suffer for about 2 weeks every 2 years, and not every night. I really feel very sorry for those that suffer from acute CH's.

I am interested to see that alcohol is a trigger for CH's, I'm sure that any medical professionals reading this will have kittens but I have found that when I get "the shadows" I drink plenty of alcohol and take 2 nurofen plus tablets and 2 paramol tablets before going to sleep, although I am still awakened by the severe pain, the alcohol and the tablets numb the pain and it is easier to cope with.

I have also found the morning after having a CH, I can feel that area inside my head feels "sore", I am aware that I had a headache in that part of my head, do other sufferers feel the same way?

I call it "the headache hang over", it's the feeling that someone hit the INSIDE of my head with a stick and it's sore as all get out!!!

Do try and get in to see a neuro. First just to confirm the diagnosis, and secondly, there are some pretty effective treatments available to you! Wishing you some pain free time soon. ;)

Joe

hi and welcome, im fairly new to this myself and still learning
as to alcohol i had a few beers at the start of my cycle as the weather was nice and the beer gardens where open. the 2nd beer hit me and i took a 4-5 hit for about 40 mins middle in the beer garden after it had gone i looked up to see tears in my wifes eyes  :'( that alone keeps me away from beer during my cycle however im just coming out of cycle (i hope) and the weather is getting better allso i have the whole of june of work so guess where im off to lol.
i hope you come out of your cycle soon and wish you lots of pain free days lots too read here and a bunch of great people (information is power)

mark (a brit in germany)

rastan wrote on May 9^th, 2009 at 11:06pm:

I have not been officially diagnosed as a "clusterhead", but having read lots of info on the internet I'm certain that I suffer from CH's at approx 2 year intervals.

Hi Rastan,

I'm sure that I speak for most people on this forum and that we have all diagnosed ourselves using the internet and especially this web site as it is just a wealth of information regarding cluster headaches. If you have time please take the quiz on the link provided below and this will give you a better understanding and unfortunately confirm your own assured diagnosis.

Welcome to the site and your fight back against the little demon begins...! ;)


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Lefty...!

Yep, I get that sore feeling afterwards too. Like Joe posted, I think of it as a hang-over.

Lottie

Thanks to Joe, Mark, Lefty & Lottie & of course Bob for all the info, I took the quiz and it would certainly seem that I suffer from cluster headaches (I already knew that, unfortunately)
Once more, tonight I do not have the shadows, perhaps I only had a short burst of CH's (I'm being optimistic, but it could be true) maybe it has become less and I won't see it again for another 2 years or so, I read that in 90% of cases it gets better after age 50, I'm 43 so am hoping it will become less in the next 7 years!

I know exactly where you're coming from Mark, my wife is also in tears to see me rolling around the floor in the middle of the night, clutching my head...

don't be complacent with your doc. Get a new one who will help make your life more manageable.  -