Evening all, greetings from Liverpool

Just found this site while trying to read up on CH, as have been told by doctor that this is probably what I've got.  Still got to go for a scan with neurologist in couple of weeks, but symptoms sound accurate enough.  Been struggling with this pain/pressure for last two weeks (xmas was cancelled) and got given antibiotics for sinusitis and co-codamol but they didn't lay a glove on it.

Reading the stuff I was given and looking at wikipedia, I think I may have been quite fortunate so far.  Yes it's been excruciating, yes it's been grossly offensive pain I've been having - but I've just read about it being called 'suicide headaches' and how it's 'worse than childbirth'.  Being a fella I had obviously thought I'd go through life without childbirth like pains but now I'm concerned that this bout has been pretty mild compared with what's out there?  On the one hand it's comforting to know that I haven't been acting like a big jessie with a low pain threshold, but on the other hand...what's in store?  Does it get worse than this?  I'm not keen on that prospect at all.

Just had a go of the spray for the first time and it's not been massively succesful.  I'm planning to go back for the injection in the morning if I can get it - is it more effective than the spray?

I'm not the best patient in the world and generally have very good health, so I'm not impressed with myself (well, my head) at the moment.

In summary: Hello everyone, my name is smithdown and my head hurts.

 
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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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Assume England. Good group to get to know:

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Welcome to the family.  ;)  Don't worry too much about the level of pain; I find that if I hadn't been keeping a detailed headache diary, looking back I wouldn't have remembered the bad ones vs. the really bad ones... and I don't really remember the pain of childbirth, I just remember saying it sucks!  ;D  Mother nature CAN be kind, I suppose.

hi smithdown

im a newbie also,my headaches kept getting stronger up to about the 4th week.   Then the doctor increased my verapamil to 480 mg a day and after 3 days at the higher dose i quit having the headaches,only shadows.

i still have the odd shadow but no headaches to this point. :)

Cheers all

This condition of ours (if thats what I've got) - it's rubbish isn't it?  There's not much fun in it at all really.

Ah well, onwards and upwards.

The sumitriptan stuff is no use, so been given Migard now.  If that doesn't work they'll try something else.  Great.

Will try that UK site, ta very much for that.

A good day to you all.

Welcome from the other side of the pond! Read the link Johnson gave you, it's the most current info available.

Another strong vote for oxygen here. We're seeing a high success rate with it, no side effects and it's cheap. Certainly worth giving it a try. Been a miraculous abortive for me for many years.

Most find the best results from a 2 pronged...patient!!!!....approach.

1: A good preventative medication. That's a med you take daily while on cycle...getting attacks...to reduce the intensity and the frequency of your attacks. I use lithium, other popular prevents are verapamil and topomax...many to read about in the links Bob gave you.

2: A good abortive. An attack has started, now what? I use oxygen as my front line, it wipes out the majority of them. I use the occasional imitrex injectable for the ones 02 can't tackle.

That's my regimen, hundreds of variables of that in use by others on the board. That's where the patient part comes in. Takes a while sometimes to find the perfect regimen, but worth the work.

Joe

Thanks again.

This Frozatriptan only seems to have taken a slight edge off it so far, but its early days with it I suppose, but should I expect for (almost) complete relief when I happen upon the right medicine or should I be prepared to have to make do?  It's hard to know what to expect really.  It's not as bad as it has been over the last few weeks but maybe that's happening of its own accord, slightly.  I should really ask the doctor more but so far I've been in a mood to run as fast as I can to the pharmacy as soon as I'm handed my prescription and not stop to ask more.  Patience, good advice that.  Will have a good read through what's been posted, very much appreciated.

Ta

If the 02 is effective for you you'll know in 10 minutes or less.

As to the preventatives, most take 10-14 days to ramp up in your system. I take prednisone during that period as it blocks 100% of my attacks. I do a Prednisone taper starting at 80 mg  a day down to zero. By then the lithium is sufficiently in my system to work as a prevent. For me the lithium blocks 70-80% of my attacks, which I consider awesome!

Joe

Yes, it's right grotty, isn't it?  ;)

In fact, I'm thinking of changing my major to Philosophy!  :D

UnderTheRadar wrote on Jan 7^th, 2009 at 11:37pm:

Yes, it's right grotty, isn't it?  ;) In fact, I'm thinking of changing my major to Philosophy!  :D

That signature of yours is boss, mate.

;D