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How did it all start for you ?


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21 years old in 1986. Thought I had a toothache. Was diagnosed quickly but was prescribed nothing. There was no medicine and little knowledge. There is more knowledge and still no medicine to really make these things disappear. I am episodic, every 1 1/2 to 2 years for 8-12 weeks. Since busting, lasted 3 years. Would have been longer but got lazy and comfortable, forgetting to bust.  Thank goodness for this website and the wonderful people who live here. What I dreaded in the past is now a completely manageable illness. There are a few rough patches, but a totally different life than years ago with traditional meds.

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  • 5 months later...
Another common aspect for a cuckoo subset of several guys on the CH forums Lenny and I have talked to, including Lenny, is that it started in the year 1980!Huh Maybe it was just some sort of omen that a full decade of horrible popular music and fashions was about to ensue.

just saw this thread...

August of 1980, I was 18.  I...

yes, 1980. I had never thought of linking this with Boy George and Thriller but it makes sense ;D

I had been hitchiking alone across Canada and after finding out I was wayyyy too early for apple picking in the Okanagan Valley (I was 18 hey), I headed back East. I was pretty much out of money when I left Osoyoos, so except a few meals with fries offered by my rides, and oh yeah a good farmer breakfast in Calgary at a friend's house (first time I had hashbrowns [smiley=thumbsup.gif], unkown in my native Québec), I had not eaten nor slept much when the Beast first hit me.

Actually, what I recall as my first encounter with CH was my 2nd encounter... more on this later.

So I meet this guy, where was it, must have been in Manitoba, and we decide to hitchike together. I remember at one point, we were around Kenora, that's close to the Manitoba-Ontario border. I was dead tired and tried to sleep by the side of the road while my collegue was hitchiking for us. The sound and draft of the passing 18 wheelers was rocking my troubled sleep. When I woke up, I asked my collegue what time it was, and it took three or four "what?" before I realized (remembered) he did not speak French. Actually he did a little, but my asking was in slang Québec French so he could not pick it up at all. These details in just to set up the frame of the attack.

We finally get this ride in the middle of the night after like 16 hours on that damn 17 Highway near Kenora, but the woman was mostly looking for a spare driver and neither of us knew how to drive. So... So yes, she droped us in the middle of nowhere in the middle of the night (ahhh the good old days :P).

The next day, a guy with a gleaming car picks us up and whoa... he's taking us all the way to Ottawa, a close to 24 hours drive.

I ask if it's ok that I sleep on the back seat while we eat miles.

That is when it hit me. Kip 12 I think... moaning, screaming, hitting my head on the door handles... big time trouble, really didn't know what was happening, the Devil was there trying to pull my eye out of its socket.

Imagine the face of the two others who I barely knew when they looked back. They were totally freaked out. I don't remember how long it lasted exactly, but it was a major one (compared to what followed the years after); I lost track of time, really, but it must have been an hour or so.

Waking up from the deads, I was feeling really shitty, and the driver asked me if I was hungry. I wasn't sure but figured I needed to eat.

We're both flat broke, so he offers us a big meal at Burger Krook or McSomething ;) and I hop back in the car with my 7Up... I place the drink, which is held in the usual waxed paper glass, on the dash while I buckle up, and leave the 7Up there. One turn too much and ooopsy, the 7Up splashes all over the dash and leaks into the fan cracks and all over. The driver was really upset about that and every 2-3 miles, he would thump the steering wheel and shout "F**ck! That F**cking 7up in my dash, I don't believe this!!"

So I told him to just drop me off there, anywhere, I was feeling so bad. But he refused and took us both to Ottawa.

The next hit from the Beast would come in the week that followed, and the others... It was very bad then, like 3-4 hits every night, and big ones always. For the next 6-7 years, I would get a cycle about every 6-8 months.

But yeah, I realized afterwards that that was my 2nd encounter with the beast. A few days earlier, I had a ride in the Saskatchewan Great Plains by a old farmer with a 1955 pick up truck which seemed difficult to change gears. I never could expect this, but this old guy with a strayhat tells me: "You want to smoke a joint?"

I was really surprized. Well of course, I was barefoot and had long hair so that someone figures I would like to smoke a joint is no surprise, but from an old farmer? He handed me a small joint and told me to light it up. I peeked in the rolled joint before I lit it, and it was reddish... I don't know what stray that was, but was reddish... So it gives us a good buzz (well me anyways), then he stops at a service station to fill up, and I annouce that I'm going for a pee. There was a congestion at the toilet, so I'm waiting in line in the sunshine (Saskatchewan sun ooohhhhhh)... Then I just lost it. I fell unconscious, bang, right there all of a sudden. People helped me up, and I was in a haze... I told the farmer after a few minutes I was stopping here, and he didn't want me to, being worried about me, but I insisted, picked up my bag and ran away in search for a place in the shadow of the sun to try to recapture... Oh yeah, it's Saskatchewan... I hadn't thought about the fact that there is NO shade in Saskatchewan. I stayed in some sort of a field, hiding from the sun under my backpack... stayed there for many hours. I don't remember extreme pain, but it seemed as though all my body's chemistries were mixed up and tangled, and my brain twisted. I remember thinking: "what the f**k was in that joint?", but many years after, I figured it was the Beast's very first visit, to be followed by the story I told earlier in the ride taking us across Ontario.

Back home, I did my first attempts at getting answers from a doctor. She had none. She prescribed Fiorinal, to which I stuck for a year (they didn't help much).

When I went back to the same doctor to get a renewal on what seemed to me at the time like the only possible soothing of this excrutiating (spelling right?) pain, she (the doctor) gave me a hint of what was to be my life from now on. She said: "No, I'm not renewing this prescription, this is very addictive stuff and I'm not the kind of doctor who prescribes this on the long term. You have a mysterious disease which is probably unknown to science, and from now on, you will have to face the pain and live with it". Her words were very sententious and they still echo in my head as of today. I took it, yes, as a sentence and figured I was doomed to live a life fighting a beast bare hand, which turned out to be pretty much the case. In the two decades that followed, I saw 3 or 4 doctors who all raised their shoulders and did not prescribe anything at all. Only in 2007 did my nephew, who was then a paramedic and suffered CH also but chronic, wrote for me on a piece of paper: Verapamil, Imitrex, and Clinique de la migraine (in Montréal), where I saw a neurologist who said: CH? easy, we have the solution. And her solution wasn't very good either, and that's why I'm here now.

If I would have known... probably I would have been hit by the beast earlier in my life if not for my regular use of LSD since I was early 16. I should have kept on taking that miraculous tab... but I figured it was probably not going to help my head, so I didn't... and suffered.

So that was my first time, long story hey? hope that was entertaining and sorry for my sentences with an accent :P

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sounds like you had quite and expreinece when you where younger (CH's aside).   Thanks ,, I have been hoping that my son was only giong to be episodic and only have 3 or 4 of these twice a year .. but no luck .. yesterday he had 2. with the second being, he said, one of the worst .. along with last weeks.  :( ,, so now down the road with armed with all the info from here we go.

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That was an entertaining story Purp (albeit all too often riveting in a horror story sort of fashion :o).

And now we have another CH veteran officially inducted into the 1980 club.  :D

Hey maybe we can have a dedicated 1980 table at the CB conference and have a special 1980 logo printed for our T Shirts.  :D

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My first was at 17 in 1975. First hit was as bad as any so it started at once. I had just come off the road (didn't go to high school, just traveled around being a hippy kid). There was no stress or triggers involved, just out of the blue. However, it should be noted that I had given up taking psychedelics about 6 months prior... makes me wonder if maybe they would have hit sooner if I hadn't gone through that "experimental" stage.

Anyway, emergency rooms, doctors, all scratching their heads till 1978 when I decided for the heck of it I would go see my old childhood doc. A gentle old guy close to retirement that still made house calls to sick children on his way home from work. I described how an attack goes down, and their apparent pattern. He got up and went to get a book, handed it to me and said read. The first paragraph was almost word for word what I had just said. He nailed it without even much effort. I was treated by a neuro with the usual steroids, lithium, verap, sansert, but I was not responding to any of it. I had no oxygen till I changed docs in 1982. This new doc got very serious with me when I laughed at oxygen, after all how could simple oxygen kill pain strong opiates won't even touch? He forced the issue, stating "It may not work for you, but if it does, imagine aborting headaches in minutes! It is at least worth a try?". Well with this pain we will try almost anything... and it saved and changed my life instantly. That was the same doc that told me "We don't know how or why these headaches happen, and we really don't even know how to treat them. We can suggest things, but it will be up to you to experiment and find what works for you".  The best doc I ever had... words to live by.

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I've done a heckuva lot of doctor bashing on the forums, but I'd like to officially pause and vigorously salute your childhood doc and your 1982 "O2" neuro, DM!

Ow, I just jabbed myself in the eye when I was vigorously saluting - I hope that's not a CH trigger dammit.  :D

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Why is it so many here got their headaches around 18years old ? 

hmmm... maybe because it's at around that age that big hormone changes happen?... for men at least, rushes of testosterones that also lead in acnea, which is more common on teen boys than on teen girls. The rush of hormones (I know nothing in particular in that domain, just guessing) is not well channeled because of pre-existing malfunctions with hypothalamus and results in this mess. (and as far as I know, CH still hits more men than women, and often around 18) Same would apply with women who get their first CH going through menopause, that is not uncommon, is it?

I'm pretty sure all of our busting agents would also help very much any woman going through menopause, and I think I read two testimonies about this here 2 days ago (might have been an old post)

My brother had CH also, his started at around 38 years old, which is also an age where hormone changes can happen in a male (CH hit me very hard also at around that age), that is the start of a lowering of testosterone.

And same goes for a member of this board who went trough a big hormonal change through a sex reassignment procedure that triggered her first CH.

I don't think I ever lacked testosterone until recently (I'm actually in the range but on the low side), still, this testosterone never seem to actually take effect on my body, as my shoulders, my muscles... never expanded. It seems to me like my body was never able to absorb correctly the testosterone it itself produced. Many of us I think are the skinny type...

adding this: I still have acnea, and it come in cycles. And I'm 51 !! (I remember I couldn't wait to be a full man and have no more of these pimples  >:()

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I got my first CH exactly one year after my husband ended his life.

I have had CH episodically for 13 years now and for the first 5-6 years they always started around that time, the last week of June. There were a few years where they showed up in the fall, or late spring, but, given the apparent connection between serotonin and CH, I have always wondered if the reactive depression I developed following my husband's death was the trigger for me. I am happily remarried now and the depression has resolved, so am not sure how much weight to put on that theory.

It was interesting to see some other stories here of others for whom extreme stress precipitated their CHs.

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It's hard to say when my first one was because I was only 8 and I'm 35 now.  I just remember getting hit every other day and wondering what was wrong with me.  My mother thought that they were just sinus headaches, so for the majority of my life I thought the same. That is, until I had finally seen a Neurologist in '05 who then explained to me the horrible world of CLUSTER FECKING HEADACHES!  :D 8-) >:( :( Sorry, I get a little emotional about it at times! :D :D :D

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about 21, woke up with a huge pain in the back of my head, paniced, called doctor...

was incidental at first, but it got worse and worse, spend 7 years wandering what itw as, no doctor could tell me, had therapy, nose operation, the usual.

kinda figured it out myself, after some research.

now chronic, but not too bad, exept a couple times a year, when im a mess for months.

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