Hi just a quick intro, I have been suffering from what I thought was migraine since I was 8, I'm now 31, I now know its cluster headaches, waking at same time each night with pain I can only describe as the most sever stabbing in my left eye, sickening nightmare of a pain, I thought all migraine sufferers felt this pain!! nothing eases it, and for me it lasts 7 to 21 days and then dissipates for a couple of months.  I've missed out on a lot of my life.  I have two young daughters and a lovely husband who feels very helpless when I'm crawling around on the floor crying and howling!! I'm going the doctors this morning to tell him its CH, ( I came across  wikipedia describing CH and could not believe :o :o what I was seeing, it described everything that I am experiencing) over the years the drs have not suggested any preventative or anything, I have been sent away with a heavy heart many times thinking nobody is listening to me.  I was sooooo happy to come across this site, and cant wait to get to know some fellow sufferers, I don't think anyone can understand the pain, and experience little sympathy from employers friends etc, as they say its just a headache!! I wouldn't wish this pain on my worst enemy.  So I'm glad I found you xxx

welcome
happy for you,you found a name for your pain!
It's the first huge step for not being a small boat
in a sea storm!
Many of us have been misdiagnosed and mistreated for many years.It started for me at the age of 13 and but was properly diagnosed at the age of 19-20(now 29)as there was a disbelief i could have ch at such young age.There are these funny directions as Ch occurs between 20-40 years old that many times prevent the docs from seeing the patient's case as it should be.First patient's eyes and then the book,not the opposite.
But still you have to get to a good headache specialist and demand for proper mediacal tests and diagnosis.
there are lot of members here form England who can help you directing you to a good specialist.
welcome  :)

Be warned, women don't get CH! ;) You may get an old school doctor who will tell you only men, taller then average, with lionesque features, get CH. (that's the old school description!)There are a couple...well a whole boatload of women on this board who will tell you that's not exactly true! ;D

Get thee to a decent doctor. Many, myself included, find the best results from using a 2 pronged approach to CH.

1: A good prevent. That's a medication you take daily while in cycle to reduce the number and the intensity of your hits. I use lithium, Verapamil is a common first try abortive, Topomax is also popular.

The down side to most prevents is they take about 10 days to become effective. Many of us use a prednisone taper to get us through that period. Prednisone is a very effective block for most but can't be taken long term as it's harsh on the body. As short as your cycles are it may be an option for you to get you through a cycle.

2: An abortive, the headache starts, now what? Your first line abortive should be oxygen. Read the oxygen info link on the left. Hard to believe but people can abort an attack in less then 10 minutes by huffing pure 02. I can stop the beast dead in his tracks in as little 6-8 minutes, that's completely pain free.

Imitrex injectables and nasal sprays, zomig pills, all worth talking to your doc about.

For now, grab some energy drinks from the market. Red Bull, Monster, any containing the combo of caffeine and taurine. I prefer Red Bull sugar free. Chug one down as fast as you can when you feel an atack coming on. Many can abort or at least really reduce a hit that way. 4Way Nasal Spray....that's the brand name, use this on the nostril of the affected side, helps me with the low level hits.

Stay away from the OTC's, tylenol, ibuprofen, aspirin, they do not help with CH and rip up your insides with long term use.

Welcome home, yeah, we understand!

Joe

You have an excellent support group.

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Are there any specific kinds of information you need?

 
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--link, line above--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]

Thank you so much for the lovely welcome, I feel I have found home at last.  I went to the doctors today and told him my symptoms and how I was convinced they were CH, I was expecting another brush off, and prepared myself, but to my surprise he is referring me to a neurologist !!! WOW after 23 years of CH I am finally going to see a specialist, I cant wait.  I'm not sure what to expect, but know I am along the right path, first I'm going to start with the red-bull.  I have been taking Ibuprofen, paracetamol, aspirin, codeine ( not at the same time), funny the most effective thing for me is a dark room, no noise a and a big can of coca cola!! :D

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miakate wrote on Apr 28^th, 2010 at 3:58pm:

and a big can of coca cola!! :D

Interesting, because a cola just before my normal ch time usually prevents an attack.  It got me drinking Coke at 9am for a lot of my life.  Caffeine is definitely in my arsenal.  sometimes I go right to the source and get a caffeine pill (200mg).  Coffee and tea work too and most people here think the added taurine of energy drinks (redbull etc) increase the effectiveness. 

I also think the cola carbonation feels good just before my headaches, somehow soothes the body.

:-? (how about an eyebrow guy for carbonated, brown, corn sweetened, caffeine water)

--Shaggy

I have just come to the end of a 7 day cycle, I feel wiped out but drank about three cans yesterday and for the first time in a week I didn't wake up with that horrible sickening pain, maybe it was the coke or I was naturally coming to the end, but I'm thankful that episode is (nearly ) over. :)

Oooh, guess I forgot in my last post but.....if the aspirin and ibuprofen are not working stop taking them.  They tend to not work on the clusterheads but will eventually work on your clusterstomach.  Initially we tend to take all that stuff and when it doesn't work we take more.  No head relief and then our stomachs eventually feel the effects.  I haven't tried the other stuff you mentioned.

If it has been working then disregard my advice.  I used to take excedrin, then got smarter and just took the caffeine which is the ingredient in excedrin that was working.

Hope you are done for awhile.  Don't forget about it, get your arsenal ready for next time and keep reading here.  I'm sticking around so I can beat it again the next time my shadows start.

Good luck!! >:((frowny guy to ward off the evil cluster spirits)

--Shaggy

Hi from Hull,yorkshire am 34 found this site at 4am last week and in my first cycle for 5years after believing id "grown out of them"as most drs told me from the age of 19.was taking codeine phosphate since 19 but demanded o2 after reading this site to no avail.now take beta blocker for preventitive and tramadol for abbortive, stops the real bad crying my eyes out and rocking attacks but not the ones where you need to make funny noises!.thanks to reading this site and its brill informative members am arming myself with information to be prescribed o2 at my next appointment.good luck in your quest for freedom :)

Hi, I was amazed to find this site too, the relief that I wasn't going mad!!! So I gather O2 isn't prescribed on the NHS!! I have my 1st appointment with a neurologist on the 21st May, not sure what to expect or how they diagnose CH, just glad someone is listening to me :) I'm at the end on my cycle now, I will keep looking at this site, I have go loads of tips so far, I want to be prepared for next time too, take care x