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.

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?

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

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

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.

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. 

burnt-toast
(Tom)      

Brew wrote on Dec 6^th, 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.

   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.

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.

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.

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

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 :)

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 :( (about a k6) still it was worth a try .

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.

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.

Came on like freight train, went away for years then came back with a vengeance - wham.

Marc

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

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

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.

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

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

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

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

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

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. :-*

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.

I had my first ch attack after giving birth to my first son. I had to have an emergency c-section. They gave me an epidural. I started having them as soon as I got home from the hospital. I was sure that the anesthesiologist mess up and nicked something in my spine and that was why I was getting them. I went through almost 12 years of misdiagnosis before I was told I had clusters.  :P

"known" trigger is an interesting concept....depends who you ask....for me...yup

June, 1988 while excavating a spot to build my garage, I started getting bad headaches on one side. I thought maybe I was exposed to something from the ground.

Dr. thought it was sinus then dental and then a tumor. Then March, 1989 while having one in front of a Neuro, I was Dx'd. I was chronic the first 2.5 yrs. After starting verap, O2 then lithium I became eposodic and have been since.

At the beginning I thought this must be something deadly with so much pain on one side. Little did I know that those first K-7-8's could & did get worse....

I can say I do have better control over the hits now than ever before. High flow O2 and DHE-45 shots for  backup. Imitrex doesn't work for me.

PFDN's, Don

The first attack that I remember, I was about 18.  Sitting in my best friend's basement, playing Nintendo, working on my third or fourth beer with a big 'ol chew in my lip.  I had had the pain before, but that was the first one where I thought "This isn't right.  This is more than a bad headache."  That was the first time I remember my nose running uncontrollably and tears just streaming down my right cheek.  I immediately associated the attack with the chewing tobacco, as I was an infrequent user of that.  But I smoked and drank for another 7 rotten years.

July this year I caught Swine Flu and then had Tamiflu tablets - ever since I took one of those tablets I have had these headaches.

Still have them now, but thankfully O2 gets rid of a CH in 5 minutes which is wonderful :)

PFDAN x

Mine started in '89...woke me up from a normal night's sleep with a K7-8 in the left sinus area. Since I did have sinus problems from time to time, I took an Afrin and a couple Tylanols and it was gone in 25 minutes (duh!).

Of course, it came back the next night. Same time. Same pills. Same results.

After a week or so, they started getting worse, affecting the cheek and upper teeth on the left side, then spreading to the tear ducts and ocular nerves. I went to see my dentist and GP about them. The GP had x-rays done and declared that he could correct the problem with surgery. The dentist suggested removal of teeth. While I was mulling those options over during the next week or so, the headaches quite, so I decided against the knife.

About a year later, they came back. This time I mentioned it to my father, who was a physician and had had some strange night-time headaches for many years. He asked me to describe them and declared them to be cluster headaches...the same as he had had. He gave me his old portable oxygen tank (he no longer suffered), showed me how to use it and a prescription to have it filled for a year and sent me on my way.

The next set of ch's came on shortly thereafter, and I used the O2 as prescribed, and it helped very much...for about a week. Then the oxygen, which I administered as soon as I woke up with a headache, simply stopped the increase in intensity, but left me with a K4-5 shadow that lasted hours and hours.

Due to my profession, seeing a neurologist about episodic headaches was out of the question. The headaches always occurred during a sleep cycle and never affected my professional abilities or capabilities, so I just suffered through the episodes. They normally came on once a year, lasting 2-3 months with one headache per night. I simply went to bed a little earlier to make up for the lost sleep time.

I was about a year or two short of retirement when they started affecting my work. I had been working 12-hour shifts for about 12 years, half of them day-shift and half of them night-shift. Up until then, the headache cycles worked right along with my work shift, headaches coming on at night when I was on day shift and during the day when I was on night shift. That year, however, they started turning a blind eye to the clock, and one morning I went into a full-blown K9 headache while briefing my day shift replacement. Rather than go on disability, I retired a month later.

After that episode, 2 years passed before the beast reared its ugly head again, and that episode was relatively "normal". Then came the cancer, along with a few related surgical procedures and chemotherapy. Between late October 2007 and mid-January 8, I was hit by over 300 double-sided K8-10 headaches, each lasting from 1- to 2 hours. I went to a neurologist right away and he put me on Topomax, which cut out the night-time headaches...but did it exacerbate the frequency and intensity during the day? I don't know.

Now, 2 years later, they started up again in early November. This time about 80% of them are one-sided again and about the same percentage have an intensity holding at K8-9. I am averaging 4-5 per day, each lasting 45 minutes to 1 hour. Some days there are only 2 or 3 of them, but some days (like yesterday), there are as many as 8. Most nights give me 1-3 headaches...then there are glorious, wonderful nights like last night, when I got 11 (count 'em - 11!) hours of blissful, uninterrupted sleep.

I am encouraged by people like my father, our member here, Charlie, and others who, after 20-25 years have been relieved of the beast. My relationship with that bstrd has been going on for 20 years, now, and it is comforting to know that there may not be very many episodes left before he is forever relegated to hell where he belongs!

My sincerest best wishes to all clusterheads and their supporters, especially during this holiday season!