Jump to content

How did your Ch start?

Recommended Posts

Curious to know how yours started.

40+ years ago, mine started on the left. Piercing pain for 15-30 minutes. Today, I would call it a Kip3-4. They would come daily almost. Primarily the ice pick type. Always one  at bedtime. That is about all I can remember.

Since my son has just started with the dragon, I was looking for input from you guys. It would help me to help him.



Link to post
Share on other sites

About a week after a concussion playing highschool lacrosse. I was 14, I was knocked unconscious, and came to when my head bounced off the ground. Poor fitting, old helmet. Coach said I just got hit real good, although it was during a practice, and I was picking up the ball after it went out of bounds, my head was down and I was at a stand still, the kid that hit/checked me was a few years older than me, came at me full speed. When I woke up I had no idea where I was. Went into shock, shivering and shaking, extremely cold. Headaches started about a week later in class. Eventually had to drop out cuz I'd get hit the same time every day in the same class. I dealt with it for about two years, but I eventually was taking 9nth and 10th grade  classes in my 11th grade year  :o

Link to post
Share on other sites

Head trauma here as well.  US Army.  Started a few months after a head injury.  I remember the first attack clear as a bell.  Was getting ready for a room inspection and it started.  The pain got worse and worse till my roommate called our platoon sergant.  He took one look at me and ordered me to report to the emergency room.

Good old uncle sam.  I was diagnosed with a sinus infection and given antibiotics...  Didn't help right away but for some reason a few weeks later the headaches stopped.  ha..


Link to post
Share on other sites
  • 2 weeks later...

Mine started as a result of drinking beer after a hot, dusty day of driving raggedy ass old road trucks with no AC. Finally made the connection between my beer drinking and the HAs.

Hadn't heard the term "cluster headache" until I saw some dude on TV describing them and his experiences. Pulling teeth, OTC sinus meds., and the connection to drinking. Couldn't believe what I was hearing, sounded like he was talking about me.

He mentioned Clusterheadaches.com. I went from there to here. Been busting with LSA. What a world of difference!

Sure would like a cold beer though.

Link to post
Share on other sites

I was about 34 and stationed in Hawaii.  I'd been boogy boarding at Sunset Beach (not bragging...just passing on the story) and was on my way back to base when I got hit.  And I mean HIT.  Worst pain I'd ever had.  I pulled over to the side of the road, got out of the car, and rocked back and forth on my knees (and puked) beside the car.  Then it went away!  I thought, well that was weird...I must be dehydrated.

I didn't have another for nearly 5 years.  I had retired from the Air Force by then and was driving back from Abilene when I got hit again.  Same scenario.  This time I thought, "well, this is it.  I've got a brain tumor.  I'll be dead in a year or two." 

I went to see a local doc and, unlike most of the experiences here, he nailed it right on the first try.  As a matter of fact, his exact words were "you're having cluster headaches.  You poor bastard."  I'd never heard of them and had to look them up.

I look back on how I felt with that second hit and kinda laugh...I thought for sure it was over for me.  There was no way I could have pain like that without it being a tumor or cancer or some such.

Link to post
Share on other sites

21:50, New Years Eve, 2006, I got a headache. I was really emotional that evening, upset that I was staying home alone while many of my friends were out celebrating the new year. I've since learned that strong emotions are one of my triggers.

That headache lasted 7 months, right into July. Daily Chronic Headache my GP called it. But for me it was quite literally non-stop. I think in all those months, I had 3 days, or parts of days, where I was blissfully pain free.

2 Jan 2007, I had a bad migraine, if I remember correctly. It was certainly in that first week of the new year. But Jan/Feb are always bad migraine months for me, so I wasn't surprised when I started getting them weekly for 2-3 months. But mixed in with the migraines was something else.

At first it would, more often than not, hit me at 7pm on Tuesdays, or skip 7 and hit at 7:20pm. Sometimes on a Wednesday too, but usually Tuesday. The pain was unreal!

But it wasn't always at this time, sometimes in the afternoon or morning too. These would last an hour or so, and were intermingled with the migraines and daily chronic.

When they hit on my right side, they were unbearable, but that was nothing compared to when they hit on my left side, which was probably 30% of the time. The left side of my body has always been more sensitive than my right, so the pain there was doubled or triple the other clusters.

I was diagnosed quickly, by February if I remember correctly. In March I saw a neurologist and, although it took a year or so to figure this out, we suspect it was the hormones I took to change my body from male to female. The neuro suspects my hypo was pre-determined to have clusters, and when we upset it by changing my hormone system, and greatly reducing my testosterone, it triggered them off.

I'm not so sure I agree. I had been taking one brand of hormones for nearly a year with no problem. It was only a few months after my doctor changed the type of hormone that I was taking did the headaches start. I think it has more to do with the particular oestrogen I was on, than the change to my hypothalamus. But that is neither here or there. Screwing with my hormones awoke the beast.

2007 will always be 'the year of Hell' for me. For 7 months I went from one level of pain to another, and back again. On August 1st, I flew to Thailand and had the surgery I had been working towards for years. The headaches got better after that. Not great, just better.



I'm not advocating sex-change as a way to make the pain better. LOL  ;)

Link to post
Share on other sites

I can't remember exactly when, but it was somewhere around puberty that I remember getting horrific headaches that were bad enough to make me bang my head into the floor.  Thankfully, they only lasted a few weeks, and then disappeared for decades.

It was about 12 to 13 yrs ago, at age 50, they came back, this time chronic from day 1.  After major sinus surgery and a MRI, I finally got the correct diagnosis.  When my neurologist said, "chronic cluster headaches", it hit me like a ton of bricks.  I had two younger brothers that had been diagnosed ECH.  One has been in remission for a number of years.

Oh, and I am now officially considered episodic.  After a particularly high cycle starting last fall, other than two very mild hits (k2s), I have been completely pain free since Jan. :) :)

Hope this helps someone.

Bob Bowling

Link to post
Share on other sites

Thanks for the input everyone.

I should note that mine started 3 months exactly after a traumatic injury with knockout punch that put me under for about 20 minutes. Nice concussion. >:(

Seems like many started after a traumatic bodily experience. This matches surveys I have read. But, others started in childhood, when we are not supposed to have headaches!!!

My son started getting migraines when in band in high school. He sat right in front of the drum line and always blamed the noise for the migraines. That was 15 years ago.

More replies appreciated. :)

Link to post
Share on other sites

Well my fun life of ch started when I was 42. Sept. Long weekend the Monday. Just got back from the lake. And boom. Face down on the ground. No head trauma at the time. But played a lot of sports all my life.  Lots of hockey.  So head trauma. Probably goes without saying. That's my story

Link to post
Share on other sites

I was 18 when mine started, I broke my collarbone and then 3 months later I started my first 2 week cycle everyother day then gone twice a year.  I now only get 1 cycle but it is a month to 2 months long.  The pain has progressed as each new cycle started.  (Doctors still say collarbone not realated, i do not agree :(

Link to post
Share on other sites

Personally, I have found that Radioactive Iodine for one of their lovely tests will start a cycle too. Don't know why, but after the injection in the am, I went into a 24 hour siege from hell. Then came the months from hell as the tail of that comet!!!!!!

Needless to say, that $hit does not get injected into my arm anymore. >:( That was my ONE trip to the ER. I got a muscle relaxant shot and they refused to call my Neuro!

Please keep posting on this thread. I am learning and some others are too most likely.

Link to post
Share on other sites

I think my case is somewhat typical - started around age 22, with month long episodes every year.

The second time they hit around at age 23 I went to the library (this was around 1981, no internet!), found a headache book and saw that I clearly had CH (in later years I was officially diagnosed). that book mentioned O2 so I found some and back then I could even get some relief with low liter flows of 8-10 LPM.

The number of hits per day, intensity of hits, and length of episodes increased over the years but in a nice trade off, so did the length of the remissions.

I never had a formally diagnosed concussion. I did have a monkey bars incident as a kid though that involved a violent head slamming, the clang of which must've reverberated for blocks. It didn't knock me unconscious but I was "blinded" for many hours with loss of maybe half of my vision similar to how a migraine can half blind ya.

Link to post
Share on other sites


He started getting them about two months ago. Ice Picks and shadows so far. Don't last but a few minutes, but several attacks per day, several days a week. He has had migraines for about 15 years now. The CH is new and I am devastated! :'(

Just keeping an eye out for him right now. At least he won't have to go for years taking junk that ruins his body. :o That makes this site even more valuable to me!!!

Brew: You just got one out of no where? Did they start slow or hard? Mine got worse over the years, but I see that for some the first ones were as bad as the current ones. Just wondering.

Link to post
Share on other sites

Honestly, I don't remember. I thought they were sinus infections at first, and so did my doc, so they could not have been as bad as they eventually got.

I do know this: They had gotten so bad by the time I turned 30 that I sat down with tears in my eyes and wrote out my will. I was convinced (before I was properly diagnosed) that I had a brain tumor.

Link to post
Share on other sites

Mine started suddenly, my first REAL hit May 28th, 2008. I thought I was having a stroke or an aneurysm. With my other neurological problems, I went to the ER, because I was sure I was going to die.

They diagnosed me then and there.

However.... a few days before I'd seen an ENT. I'd been having what we thought were sinus infections off and on for the past 6 months before that. Low level hits, really. I'd even been diagnosed with a severe sinus infection 2 weeks before.

When I saw him I was having what I now know to be a shadow. He said my sinuses were the clearest ones he'd ever seen, and he believed I was having cluster headaches.

I looked it up and was like "Thank GOD that's not me. He's got to be wrong. Maybe it's my TMJ acting up again."

Link to post
Share on other sites

My first CH was about 12 years ago, hit me in the middle of the night like a sledgehammer, like so many i thought it was life threatening and was very scared, the pain was like nothing i had experienced before, painkillers did nothing. `however it was short lived and had no more for a few years til they came back and like many others again thought it was sinus problems, even the docs thought sinus so the meds i had were useless, only 18 months ago the doc agreed it sounds like CH's. It has now been confirmed by the neuro hospital it is CH. I had never heard of cluster headaches til my GF (used to be a nurse) said it sounds like CH, then i searched the net and sure enough i had the symptoms. Why i have them and what triggers them I have no idea :(

Link to post
Share on other sites

It all started with allergies at about age 50.  Never had them before that.

Progressively worse and worse for several years.  After the moderate headaches started I went for allergy testing, with negative results.

Then one day at about age 53 I took an airline flight, rented a car and was driving when the first K-9 hit.  Same as some of the other folks ..... pulled over, rocked and screamed, then puked.  Thought I was dead.  I had never experienced that kind of pain.   Headache disappeared shortly afterwards.

When my doctor said CH, I too was dumbfounded.  After a CAT scan to eliminate the worst, I looked it up.  Wow, 10 out of 10 symptoms I had.  "Cluster Headache" had now entered my vocabulary.

******* Then I found Clusterbusters ********

Chronic ever since (I'm now 57), prevent with small doses of Lithium and abort with O2 (that works excellently).  K-3 to K-4 several times a week thereafter.

Pressure changes, alcohol and bad allergy days still kick my @$$

Best of luck and pain free days to all ............


Link to post
Share on other sites

right about the age of 27 (begining of the year- march i think) i started

getting daily migraines. for about 6 months that was all then one night in around

august i got my first cluster hit. lasted almost 3 hours and was one of the worst ones i have

ever had. Luckily the Dr was very quick to point to clusters and after almost 4yrs chronic i found this


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...