Hi Folks, new kid on the block here.... here's my story.... I'm 52 caucasian male, living in Montreal...
Got my first headache on the 9th June, around noon, at work, felt very uncomfortable, was pacing and holding my temple, wondering what was up??? lasted about 20min, took three shots espresso, maybe that helped.
Got home at 6pm, and got another at 8pm, lasted about 20min, I measured these on your KIP scale and tracked them at 7, having lived through kidney stones a year earlier, which I pegged at 9.
I had two more attacks the next two days kip6, then nothing for three days, then started getting them at night 3am, last 1hr, kip 6, 2 days, than three days nothing, at this point I don't know what I have, but am tracking the headaches, concerned about an aneurysm, tumor, .
Than I get a hit three days later at 8pm, lasts 5hrs, kip 8-10... at this point pacing, rocking holding temple, crying, congested, and unbearable pain, hit again the next morning kip 9, head to the emergency ward at the Royal Vic Hospital, with a full blown attack, the doc orders an MRI and blood tests, when the results come in, he suspects, trig en neuralgia, or CH. prescribes Lyrica, to take as required and sets an appointment for the Neuro, in 35days!!! had three attacks the next day ranging from kip6-9 and lasting 1 hr, average ea. :( Lyrica does not seem to help. but then no attacks for 6days, than it starts again 3 attacks a night 2am, 4am, 6am, lasting 30min...for the next 6days kip 8-9, not getting any sleep. actually terrified of going to bed....finally got to see the neuro on an emergency, and she diagnosed text book CH and put me on prednisone, 60mg ( 12x 5mg) day for 7days, than 40mg 2days, than 20mg 2days, 10mg 2 days, than 5mg 2 days, now I am on day 7, and CH free since day one. I also have Zomig... which I have used twice because of a headache kip3, but it'd on the top of my head. The side affects of the meds....I could eat a horse, and not getting more than 4hrs sleep a night. I have no history of headaches, apart from this am very healthy and active.

This site has been very helpful for me in understanding this beast, and I commend you all, and I need you.

Thanks for being there :)

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Glad you found us!  That is what we are here for.

May I suggest you read, read, then read some more.  When you develope questions ask them!  There is no dumb question if it is an honest question, although you may get a dumb answer or two! :D  There are some very knowledgeable people here, and some of us are good for comic relief, and some of us are good for . . . .  

Especially may I suggest you read the "oxygen info" button in yellow on the left of your screen.  Many of us have found oxygen to be a life saver, but it must be used properly or it is no good at all.  In fact, used improperly it is worse than useless because it gives one the idea that it won't work for you.

Jerry

Welcome to the mad house,
ooodles and ooodles of info here and lots of free advice (i actually charge a small rate) some specialise in meds others in sympathy and one or two in arse kicking. Im not saying what mine is  ;)

O2 is a wonder and works for me in 5 min (that cost you 5 dollars) and has no side effects apart from a dry mouth (use water to alleviate) (that cost you anther 5 dollars) jesus i could get rich doing this.

Mark (inmate but ive got a skeleton key  :D)

The med the ER gave you won't work with CH--pr at least no useful data yet. Print out this entire article for your information and the second item, a list of current therapies, you could take back to the ER doc and negotiate for a more effective treatment.

(7/16.I screwed up! Didn't read how you got some effective meds from the second M.D. Still, the article is worth digesting to understand what is going on.)
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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]
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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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Larry r wrote on Jul 13^th, 2009 at 11:55pm:

finally got to see the neuro on an emergency, and she diagnosed text book CH and put me on prednisone, 60mg ( 12x 5mg) day for 7days, than 40mg 2days, than 20mg 2days, 10mg 2 days, than 5mg 2 days, now I am on day 7, and CH free since day one. I also have Zomig... which I have used twice because of a headache kip3, but it'd on the top of my head. The side affects of the meds....I could eat a horse, and not getting more than 4hrs sleep a night.  :)

Hi Larry - And Welcome!!!

Just wanted to mention that if you take the prednisone before 9am every morning you will have a greater chance of sleeping at night.  the earlier the better - The first doc I spoke with that prescribed it - also a neurologist, didn't tell me this either!!  My GP did.  I was getting hit with cluster headaches between 1am to 6am every morning, so at 5am I would take the prednisone every day!!  :)  Did the doc give you anything else to take for when the pred taper is done? A preventative??

I totally agree about oxygen being a life-saver - check out the link - no nasty side effects!   :)

Val

Hey there!....  Wow!  That's a lot of info, thanks allot people, can't believe the response and support I'm getting here. :) The only med I got from the doc, was the prednisone and the zomig, no preventative! I'm gonna get all this info to my doc, and let him get informed and will sit with him and discuss options, he's a good doc, but he's my GP, not the neuro I saw at the hospital.

You are (in a way) a very lucky person.....
your first visit to the ER (if I understand it right)
and get a text book diagnosis....
must be a good and observant neuro that knows…..
many of us went for some years with out diagnosis in
and out of ER….. doctors offices… and even nero’s

Michael

Hi Larry, odds are you may have better success in the education of your GP armed with the knowledge available on this site.

It is not lost on the community that Neurologists can be more that a little hard to deal with. It's that God complex because they spent X number of years getting their degree that they will listen to nobody!

I was lucky,my GP was and is willing to learn about our shared affliction.

All the Best

Iddy

Your right, after goin through the info and posts on this site, I've come to realize how lucky I am to have been diagnosed right off the starting blocks, can't imagine going thru this agony and not knowing what I have , obviously not being drawn to this site, and being introverted.....as soon as I got the diagnosis the research started and here I am....:)

I picked up the Melatonin, to help with the side effects of the Preds. not getting more than 4hrs... a night. So will start with 9mg tonight.
Regarding the prednisol, by Monday will have tapered down to 0.0 preds...than I don't know what happens, suppose to call th neuro who prescribed it and give her an update, my GP will be away on vacation, also I have some Zomig nasal, in case i get an attack. so far on the Pred, all I have had were shadows, on the right side, but nothing compared to what i had last week before I started this med.

Keep u posted... thanks :)

Ok, here's an update on my status, tapered off the prednisone, and starting to get my sleep back, no attacks since I started the pred, which was the 6th July. Shadows come and go, telling me the beast still lurks.....but nothing compared to a full blown attack. Taking melatonin since the 15th, seems to help with the sleep, but need to follow up on that... :)

hi Larry,

Get a script from your GP to see a neurologist.  I know the Hopital Notre-Dame has a neurolgy dept that knows about CH-we have the best neuros in montreal 8-)).  As Bob highlited in his post, alcohol is a no-no  while in cycle (experiment for yourself).  
This group (family) is wonderful, and feel free to contact me if you have any questions or just need to vent.  

blue

I have been seeing a neuro from the royal Vic neurology centre, she is the one who gave me the pred script. I spoke with her today, she wants to keep me off meds until the next cycle, she seems to think that the prednisol broke the cycle, and gave me a script for Zomig to take in case an attack would arise...since I have no history of lengths of cycles and/or attacks. a suivre... :-?

Hey Larry and all.  I'm new and 55.  My first neurologist was a real quack and dismissed my cluster diagnosis immediately, especially after a normal MRI.  He actually perscribed....and get this.......fish oil capsules, rubberband stretching exercises, a cream to rub into the base of my neck before I went to bed, lanacane peel and stick medication to stick to my jaw at bed time and physical therapy!!!!   I felt like Bones on startrek..... I was gonna say  "My god man, what is this the spanish inquisition????"   A new neuro simply talked to me looked at the mri, and gave me prednasone  80mg the first week then 70, 60 and so on.  So far..........NOTHING.  Giod bless prednasone!!!!!  Oh, and 180 mg of verapamil once a day.  Good luck!!!!

I will be going back to my neuro, had two attacks yesterday, 2pm and 3am, kip 6-7, took zomig and the pain went away within 15-20 min. so it's back to the drawing board...pfffft!

Salut Larry,

I hope you are doing better.  I am also in Montreal and just finished a cycle (after a 6 year break...).

Looks like you have found a great neuro.  That's great news.  If you have any problems, I would suggest "La Clinique de migraine de Montréal".  I know the name is not inspiring for anyone dealing with CH but they are really good and can see you really really fast when you are in cycle.

If the Zomig nasal spray takes 15-20 minutes to work, you might want to try Imitrex injections (works in less than 5 minutes for me).  And for sure, read all about O2.  I haven't tried it myself but will definitely check it out next cycle... but I am in no hurry.

Take care!

miCHel

Hey Larry,

As Michel said (and many others), oxygen is a must with CH.  It aborts the pain within 10 minutes, sometimes faster if you jump on the tank a the first sign of an headache.  Ask the neuro for prescription (and you can get it from VitalAir, the only supllier I know but there is probably more).  If she/he doesn't know about O2 for CH, you can try to gently "educate" her/him.  O2 should always be prescribe along with the triptans since most of us will easily need to abort more than what it is permited with triptans (i.e. two doses maximum in 24 hours).  I use O2 at home and I keep the triptans for when I am away from home.  Also, if the O2 don't work for this cycle, I must stress you to give it a try for the next cycle.  This happenned to me (I was so disappointed to see that what was working so well, just didn't do anything anymore), and fortunatelly because of this board, I tried it the next cycle and it just worked as before -thank God.

blue

Thanks all, for the great info on this board, I will be seeking O2, as soon as I have a chat with my neuro, so far the zomig is doing the job, i have been in cycle now for almost 2 months, getting hit three times, every two days, since the end of the prednisone, after a 20day break! :-/

Hi all... looks like I may be out of cycle, after two months, I haven't been hit since the 28th July. :D Now going forward will monitor what happens, talk to the neuro about a prevent, see what she has to say...Thanks all, I will be visiting often. :) :) :)