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So how did it start for you (Read 2847 times)
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Matthew ch 11 v 28


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So how did it start for you
Dec 6th, 2009 at 6:56pm
 
I was just wondering how CH started for different people.

Al-tho I have only been having attacks for the last 5 months and only diagnosed for 2 months ( yes I know that's quick and I am soooo grateful for that )  I've been thinking about When it started .

5 months ago whilst at work on a stinking hot day I got a headache it was the most painful one that i had ever had, I put it down to the fact that i was working out side in the full sun and had not been drinking enough water. but low and behold the next day at exactly the same time another one just the same ,only lasted 20 minutes, but oh the pain . any way every hot day after that was exactly the same by 10 o'clock pain , and then they started getting more frequent to the point that i was waking up with a full on attack most mornings + 2 during the day it was at this point that my wife said " that's it your going to the doctors " , funny I always thought the last thing that i would go to the doctors for was a headache, dam glad i did tho.

After reading tones of stuff on this fantastic site about triggers of CH it got me thinking , about 3 years ago  I had stopped having my nice cold glass of beer in the evenings because within half an hour of drinking it I was getting a bad headache , could this have been the start of my CH ?

SO I Was just wondering if any one else has had similar  or whether it just came crashing in .

as for me I am now on verap ( at 40 mg per day due to side effects) which seems to be losing what little effect it was having as shadows seem almost constant (k 3-5) and I'm using imigran shots for when it gets proper bad.
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Re: So how did it start for you
Reply #1 - Dec 6th, 2009 at 7:32pm
 
February '06. Had some sloppy Joes at a birthday party for my mom. Threw up somethin fierce that night, supposed the food was no good as it takes a lot for me to vomit. Woke up with something pulled in my neck as I could only turn like an owl. Within two days, my first cluster. Never can be sure but I swear to this day, whatever it was that I pulled caused it. I believe others on here have mentioned some sort of head trauma and it was my specialist's first question when I saw him for the first time. Many others have stories of doing a "regular activity" when theirs happened the first time. Don't you just love how no two people with ch have exactly the same anything?
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Grandma always said "this too shall pass". But then again she didn't have ch so she didn't think to say "this too shall come again (and again) at the most inconvenient times".
 
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Matthew ch 11 v 28


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Re: So how did it start for you
Reply #2 - Dec 6th, 2009 at 7:44pm
 
yes its all a bit of an enigma ( may be i should lay off the word of the day toilet paper )

as for head trauma , I've lost count of the amount of times I've banged my head on scaffold etc in my 22 years of work , may be i should ware a hard hat more often but it has always given me a headache ironically enough, but still nothing i can pin down .

Nigel
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Re: So how did it start for you
Reply #3 - Dec 6th, 2009 at 10:34pm
 
On this continent......I was sitting in my chair around midnight watching "The Johnny Carson Show"...this was 1969 when I was 23...and I got the worst pain I'd ever known. I paced around convinced that I was on my way out with a brain hemorrhage or some kind of cancer. In about 20 minutes it just seemed to "drain" out of my head very quickly....From then on, my twice a year cycles began.

Finally, In 1991 they disappeared. I still can't believe it.

Charlie
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Re: So how did it start for you
Reply #4 - Dec 6th, 2009 at 10:41pm
 
Don't remember. There was certainly no cataclysmic event associated with it. First couple of years it was sinus infections, tooth problems, ear infections, etc.
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Re: So how did it start for you
Reply #5 - Dec 6th, 2009 at 10:50pm
 
Mine started in the mid 90”s on a flight from Pittsburgh to Houston.  Never experienced anything like it, I thought it was an aneurism about to burst and that I would never see the plane land.  When we landed I didn’t know what to think because the unbearable pain simply vanished.  That night in the hotel I got my first taste of a multiple hit night.

I’ve had this exceedingly loyal yet unwanted companion ever since.

B.T.W. It took two years, a battery of tests, and lots of wasted time fiddling around with uniformed doctors before I finally found a Neuro. at a Headache clinic that knew what I was dealing with.  Those first two years were the most frightening of my life. 

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Re: So how did it start for you
Reply #6 - Dec 7th, 2009 at 7:01am
 
Brew wrote on Dec 6th, 2009 at 10:41pm:
Don't remember. There was certainly no cataclysmic event associated with it. First couple of years it was sinus infections, tooth problems, ear infections, etc.

This was pretty much me.  It wasn't until after I got married in 1998 that I was diagnosed.
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Re: So how did it start for you
Reply #7 - Dec 7th, 2009 at 9:23am
 
   First time it happened to me I was hoofing it to the chow line, and I had the worst 45 minutes of my life up till then. Went to the Medic and he thought it was some sort of allergy causing sinus headaches and gave me something for it. Didn't help, but they went away in about three months. I was finally diagnosed 22 years later. The only real head trauma I had before then was my helmet carving a groove in the back of my skull from the concussion of a mortar going off behind me.

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Re: So how did it start for you
Reply #8 - Dec 7th, 2009 at 10:32am
 
No special event before-hand.

1987, Sitting on my living room floor trying to re-program my T.V. when it hit out of the blue.  I was fine when I first sat down...within mins. I was rolling on the floor in agony and wondering if I'd have time to see a lawyer and make out my last will and testment.
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Re: So how did it start for you
Reply #9 - Dec 7th, 2009 at 12:02pm
 
Mine started in 98 and came on suddenly with a vengence from hell.  The pain was so intense that I had severe cases of vertigo with it for 3 months.  Then I got a 1 month break and thought it had stopped and praised God.  Only to have it come right back without the vertigo.  I was doomed! Chronic from the start.
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Re: So how did it start for you
Reply #10 - Dec 7th, 2009 at 12:09pm
 
I will never forget my first attack...I was on a plane(early 80's) and they announced we will be landing shortly (went to the restroom to freshen up) when i got to my seat the beast introduced himself to me (full-throttle) one of the stewardess noticed me holding my head and trying to keep my eye from popping out with my other hand (she mentioned to me that this happens to alot of people with sinus problems) i was convinced that there was some type of radiation or some strange thing that was leaking in the restroom (i know that sounds dumb)just never experienced anything like that in my life....It finally left me after appr. 20 minutes after we landed
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Matthew ch 11 v 28


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Re: So how did it start for you
Reply #11 - Dec 8th, 2009 at 6:00pm
 
so it seems for every one who has posted so far the beast has come crashing in like a ton of bricks.
may be my theory on the slow start with the beers is out, although mine started on a one a day basis and increased to six a day over five months. so as far as chronic or episodic goes i guess ill have to wait and see , but no sine of a letup yet.

thank for all your responses Smiley

btw tried a red bull to day , god that stuff is disgusting , managed to drink it in about one minute but it made no difference to the attack Sad (about a k6) still it was worth a try .
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Re: So how did it start for you
Reply #12 - Dec 8th, 2009 at 6:54pm
 
Mine started out with beer.
Drink a beer, get a headache.
Drink 2 beers, get a bigger headache.
Drink 3 beers and quickly learned that you cannot out-drink a cluster headache.
That was about 35 years ago.
Haven't had a beer in 2 and a half decades but still get the clusters.
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Matthew ch 11 v 28


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Re: So how did it start for you
Reply #13 - Dec 8th, 2009 at 7:09pm
 
sorry to hear that bob.
I do still share a bottle of white wine with my wife on occasions but it has not triggered an attack since i have been on the verap , don't mix to well with the verap though.
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Re: So how did it start for you
Reply #14 - Dec 8th, 2009 at 7:34pm
 
Came on like freight train, went away for years then came back with a vengeance - wham.

Marc
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Re: So how did it start for you
Reply #15 - Dec 8th, 2009 at 7:53pm
 
Ouch ! this thing really is a beast .
I think I got proper help before mine got really bad , don't think I have had an attack above a k8 but thats bad enough

I pray for every one with this cursed condition every day

Nigel
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Re: So how did it start for you
Reply #16 - Dec 8th, 2009 at 8:53pm
 
For me, it started as tooth pain...for about a year. I would beg my dentist to just take it out....he adamantly refused..."not gonna remove a perfectly good tooth"....prince of a man. He got as frustrated as me and researched....he was the one who finally diagnosed ch.

Don't remember the first "real" hit...it's buried in the fog of thousands...do remember I thought I was a goner...stroke, aneurism, cancer, SOMETHING bad...and it IS...but it aint gonna kill me...I DID learn that....

Best,

Jon
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Re: So how did it start for you
Reply #17 - Dec 8th, 2009 at 10:18pm
 
My first CH hit me out of the blue when I was water skiing.  I thought I was having a stroke or aneurism.  Of course, I wiped out immediately, and was even unable to swim try to swim because I was in so much pain.  They swung the boat around, pulled me out of the water thinking I was injured. It didn't help that I couldn't even form words to explain what was going on.  For the next 40 minutes, I had my first full-on battle with the beast.  As the days went by, and I had these incredible headaches regularly, I went to my doctor who knew immediately what they were.  My regular doctor has clusters, so I was fortunate to get an immediate correct diagnosis.  They stopped a few weeks later, only to return 6 months later.  This cycle went on for a few years while the doctors put me on at least 30 different medications to deal with it.  Eventually, I found some relief with a prophylactic dose of Verapamil and Lithium, but for some reason a few months after that I became chronic and that's how it has been for almost 19 years now.
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Re: So how did it start for you
Reply #18 - Dec 9th, 2009 at 6:48am
 
At 19 I had oral surgery to extract all 4 of of my wisdom teeth. A couple of months later the hits began.

I thought of the possibility that during the surgery someone had stuck a tube up my nose and punctured something they weren't suppose to. Then the cycle ended and all was good.

Then it came back the next year...and the next year...and so and so.

Interesting some mention a plane flight. For two years I had to fly to Houston every week to work a project there. More often than not, on the flight back to NO, I would get hit.

The flight attendants would take notice and asked if I was alright. I felt like saying that all they had to do was simply crash the plane so I could get to the damn oxygen.

Steve G
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Re: So how did it start for you
Reply #19 - Dec 11th, 2009 at 11:50am
 
I am new but want to ask a general question about genetic inheritance?

I now have CH. In fact realise I have had it for 40 years.  First attack horrendous, in between various shorter less intense attacks until two years ago. 

My mother often used to wince and hold her head but being the often bad tempered woman she was would shoo me away if I asked what is wrong.  My youngest daughter who is 26 now was admitted to hospital because of terrible one sided head pain and scanned for tumours etc., No diagnosis in the end and the pain reduced after a few weeks.  She noticed it when excercising - difficult when you are a dancer!

My eldest daughter now 42 experienced her first 'migraine' as diagnosed by local GP, 2 weeks ago - she had droopy eyelid - like me and dilated pupil with watering eye and one sided pain.

So I am wondering

Judi
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Re: So how did it start for you
Reply #20 - Dec 11th, 2009 at 2:44pm
 
I was 10, 1978, playing with my dolls when all of a sudden the worst pain I ever felt hit me right in my right eye.  I started screaming my head off.  My brother picked me up and he, my mother and I headed to the E/R - 30 minutes away.  I vomited and fainted in the taxi.  By the time I got to the ER it was as if I had dreamed it all.  They were clueless.

I was finally diagnosed at age 17 by a pediatrician who was treating me for a thyroid condition, but was later told by many doctors (and negative cat scans of the brain) that they were migraines.  It was when I found this site that I realized the first dr. was correct - I had clusters and thus began my return to sanity as I read and informed myself and then told doctors what I wanted as treatment.

Langa
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Re: So how did it start for you
Reply #21 - Dec 12th, 2009 at 1:06pm
 
mine started when i was 11. thought it was a sinus headaches. took some sinus meds and nothing helped. my attacks back then where comparable to a bad migraine in the face. my remissions last 4 to 6 years. in my teenage years they got a little worse. thought i had a toothache. went to the dentist and had x rays and found nothing. so the pain was equivalent to have 2 or 3 toothaches. every cycle was worse then the last one. i'm 33 now and i didn't realize what i had until about 6 years ago. although my attacks get worse as time goes on its easier to deal with when i have people to share it with and information i find on the internet.

been pf for almost 2 years now but i know he'll be back
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Re: So how did it start for you
Reply #22 - Dec 12th, 2009 at 1:16pm
 
After reading a couple of stories about people getting first hit while flying; I'm reminded that while flying into Newark in 1963, I believe, I was hit suddenly by what felt like a cluster in exactly the same spot but lasting only 5 seconds or so. The pain was just as bad but then I chalked it up to pressure and of course it didn't return until 1969. I wonder if was a precursor?

Charlie
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« Last Edit: Dec 12th, 2009 at 1:17pm by Charlie »  

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Re: So how did it start for you
Reply #23 - Dec 12th, 2009 at 3:04pm
 
not got time to read the full thread but..
in the ealy days for me....i thought them shot's, where the bee's knee's......they stop a kip 9......but felt they progressed the cycle , 4 fold.
wont use the shots again.
since i have managed to get, a regular sleep patern.(due to a sleeping tablet)...my head is now my best buddy again.
love ui all.
pftuall.

potter...sorry i did not respond , to your message....bad month.....rip dad.

ps miss you all. Kiss
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Matthew ch 11 v 28


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Re: So how did it start for you
Reply #24 - Dec 13th, 2009 at 8:45pm
 
Just an observation .
some people are talking about getting attacks on plains and others on this site about changes in weather triggering attacks
I was just wondering if changes in atmospheric pressure is a known trigger.
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