lets see how our all started and go from there

mine started lightly, I would eat some food get lightheaded, it would go away in 5 mins,within 2 more weeks they were so bad above my right eye,some times now there in my eye, in my upper sinus , back in my sinus , like something is closeing my sinus passages down, i feel like something has to pass through my blood passages around my sinus passages to go away  , oxygen burns for me but i can relax, i feel everything open up inside my sinus and it fineily goes away, imitrex works fast the injection but its like my headace is so much worse for that 2 to 5 mins it takes to releave the headace

John,

It's likely to be different for most of us but a common theme for cluster headache sufferers is to experience a gradual buildup both in frequency and intensity of pain at the start of the first gaggle of clusters. The difference is the total time from the first few minor headaches to the onset of the head banging screamers.

V/R, Batch

My headaches started in quite strange way. It was 1,5 year ago. I was suffering from chronic conjunctivitis but I today think that both diseases started at the same time. I was in the cinema and I had short and mild head/eye ache. Next months I visited a few oculists many times and took a lot of different but finally after ~8 months very good doctor told me to stop whole treatment if nothing helps and he said that there isn't any ophthalmic reason for such a thing (e.g. pressure in my eye was always VERY good). Howeveer oculists always were saying that there is an inflammation in my eyes (small but still). Finally my eyes were quite OK (but I have pretty strong allergy and sometimes it causes problems with my eyes).

But one-eye-headache remained... Then one day (it was like 1 year ago) I was browsing some medical sites and I saw an article about headaches. I didn't look for it (I am just quite interested in medicine) but I started to read and I was looking for one-sided headaches. And then I saw a paragraph about Cluster Headaches... 1st symptom - matches, 2nd symptom - matches... I think my headaches matched with/to 50% of listed symptoms and this time I knew it can be this disease (though even now I am suffering not from the "classic" CH but from quite unusual type of CH). sorry for engrish :P

Started when I was on holiday. It didn't build up for me. Just *whack* and there it was. It continued daily for about 10 months. I was quite lucky in that I got a diagnosis relatively quickly (6 months) so could start taking action.

I discovered that alcohol and headache-relieving meds, such as aspirin or ibuprofen makes the beast more angry. I know now that I suffered much MUCH more at the outset becuase of these things. I guess the fear of the unknown as well (wondering if you have a tumour/you're making it all up) makes it worse.

Now, the triggers are strong chemical smells and the weather. And sometimes the beast throws a curve ball just to keep me on my toes!!

mine started on holiday too, emily! i was down in the florida keys this january, and one night i awoke with a "weird, excruciating pain"mostly in my mouth and jaw, but radiating from the top of my head, eye tearing, popping etc.......... thought it the food, the snorkeling, whatever, didnt know....continued from 9pm-9am, most nights, until pred tapers and then elavil...........diagnosed my self thru this site and all the wonderful people here, of course after being to doctors,all sorts of scans, 4 different antibiotics,  dentists etc...............i guess i am quite lucky than i diagnosed after few mths!!.....i think i am almost like day 120, holding it off with elavil @ nite(my hits are @ night), and an occasional red bull.i know it is working, cause if i try to go off, the beast starts to bother me!! alcohol doesnt trigger me any more, but for almost 3 mths, no alcohol..................i feel good, i try not to think about it too much, and when he visits i hit him with my best shot!!!

For years everytime I started to drink a beer - about half way thru the first one I'd get hit (didn't have a clue why I'd get the hang over BEFORE I finished the first beer). Then one night I got awakened from a sound sleep screaming and holding my head.

Visits to ER and docs and lots of demerol and still screaming in the middle of the night - almost dead - knew I had a brain tumor and no one would tell me...... My sister-in-law loaded me in the car and took me to Scott and White Hospital (a diagnosit and teashing hospital - one of the best in Texas) and started giving the neurology dept orders (she was good at that). They put me on DHE-45 IV and got me stablized and ran all kinds of tests and diagnosed me with CH. They also broke that cycle and I came home human.

Several years later (and several neuros later) I went chronic and have been there ever since, but have learned to cope and now live a fairly normal life even with the CH.

This website probably saved my life (I was in pretty bad shape when I found it after going chronic). It's been my lifeline since 98.

Hugs BD

My first headache was I think 5 years ago. In before that I had a lot of tension headaches, usually silencing them with nimesulide or some other over-the-counter pain killers. Then one day I was watching TV and all of the sudden I get the strongest pain in my life. It felt like something wants to crawl out of my eye and it kept hurting and hurting. I immediately took 1 regular pain killer, in 10 minutes 2 more and nothing was helping. I can clearly remember myself staring in the mirror actually waiting for something to dig it's way out.

And a few months ago I went chronic. But now I know what to do thanks to you guys  8-)

It's funny thinking about how it started because I remember having a really bad episode when I was in Cuba about 5 years ago. We'd been snorkelling and when we got home, I was in the worst pain! I thought I had done something when I was snorkelling because I was diving down deeper than I had done ever before.

Thinking about it now, that was probably my first hit. Nothing happened after that until I was on my way home from another trip 4 years later. We were in the airport. It was horrible.

Funny how things come back to you sometimes, isn't it...

Mine started out in the middle of the night and about 1/2 an hour before I was supposed to get up.  They were the most painful thing I'd ever felt.  I would rock and cry and scream into my pillow so as not wake my roomate up.  Those were around 4-6 on the kip scale.  Over the course of the next three years they got more frequent and more intense.  

OMG Emily....mine started the night after i went snorkeling also on jan 29th!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and it's still here

Deb,

That is a real coincidence, isn't it??? How strange! After I went snorkelling, it lasted about 3 days and then I went back to normal. Must have taken 30 aspirin in those 3 days! I remember OH going to find the hotel doctor at 2am to get some because we ran out.

Mine did go away, only to return (and has pretty much stayed since last April). You know, I haven't been snorkelling since because I thought it was something to do with my inner ears. Gosh darn it, I'm going to go again when I go away for my honeymoon!!  [smiley=thumbsup.gif]

Mine started in the summer when I was 10 yrs old.  I wouldn't tell anyone, because I didn't want to go to the doctor.  So, I would get up and bang my head on the garage floor or on our pool table.  Adults having CH is bad, but nothing like kids having it.  Adults have ways to deal with it, children have nothing but pure fear with it.  When I hear about the children who are getting hit with this crap, I don't feel a thing for the rest of us.  We are so incredibly weak compared to the kids.  

Mine started right after I was mean to someone..... I hate divine retribution......


Okay, I'm kidding    ;)

Scott

seasonalboomer wrote on May 29^th, 2008 at 12:12pm:

Mine started right after I was mean to someone..... I hate divine retribution...... Okay, I'm kidding    ;) Scott

Okay, that is just funny!  Mine must come from flipping people off or something.   ;D

I blame congress for changing day light savings time this year.  screwed me all up.  got my first hit right after that and still in cycle.   LOL

Mine started 21 years ago.  I was being treated for awful insomnia for about 6 months.  My (EX-)wife was pregnant with our first child.   I was at work, in late April.  I started with a stabbing, burning constant pain in my right eye.  I was sure I was going to die, thinking it must be a burst blood vessel/stroke/worse!

There was an urgent care facility associated with my primary physician, a co-worker brought me.  I was lucky, in that my Dr. was the one who saw me.  He gave me a healthy dose of nubain, suggested that it was probably a cluster headache, and referred me to a neuro.

I was chronic from that first one, miserable, and it took a long time to get any relief.  None of the prevents worked -- oxygen and imitrex have been my salvation.

Wishing you well,

Ray

mine started about 13 years ago i was 25.  I was a social worker at that time living in the philadelphia area.  I was driving to a home visit in the middle of a rainy morning and all the sudden i became 'blinded' in one eye, head hurt, eye tearing etc , etc.i was   Sure i was going to die.  went to gp-  didn't diagnosis me with cluster said tension ha but gave me a medrol pack.    HA went away and never thought another thing about it.

got my second cycle in march 2004- got diagnosed by a different gp.  gave me preds- cycle gone in 2 weeks . also got hit on both sides that cycle

This time? cycle started march this year- just now totally tapering off verap...

cycles always in march and rain when in high cycle makes me shadow pretty bad

kelly

u go emily!!! go snorkeling? when's the wedding???????????????

I had never had a headache in my life.  Nothing.  Then one day 10 years ago I woke up to the most herendous feeling I had ever felt in my life.  I got 8 ha that day ea 1 1/2 hrs long.  That lasted forever and I was deemed chronic and having ch.  It took awhile for me to get a correct diagnosis but when I did I knew that it was the right one.

I was 9 years old when I remember my first headache - so that makes it 30 years???  Yeesh, I didn't realize it has been that long.  Anyways, my mother remembers me crying and screaming and banging my head every few months when I was 3 or 4.  I don't remember those, but I do remember my first one.   It was bad...my brother had to pick me up over his shoulder and place me in the taxi.  Then I threw up in the cab...what a mess.  My first official cycle was when I was sixteen.  I didn't find this place until I was about 24 I think.  So all those years I have no idea how I got through the cycles.

Langa

Like this:

Ahhhhh! Ahhh! Ahh! Ahh! Ahhhhhhh!

SonofaBITCH!!!

Here's why I hate this beast so much--you can't figure him out.  I have been episodic 20 years--big nighttime hit person--but my first cycle I would only get hit during the day--real low frequency, lower intensity.  First got hit when I was 14--I was at work--worked in a grocery store.  Then I remember senior year I would get one right after the end of calculus class--but again they were low frequency.  Turned 18 they switched to night and started revving up.  Go figure--who knows--the partying in college probably didn't help!

Mine stated in high school. about 1974. About 34 years. I would wake up and just bury my head in my pillow and rock back and forth. Can't remember how long the cycle was but the Ch,s only lasted about half an hour then. Then they went away. Next cycle I got glasses because I was told it was my eyes. I got diagnosed in 1979 or 80. Sansert, thats what they gave me and it did not work. Next doctor gave me sansert, I was told they couldn't be sure they were REAL clusters because I was Female. Guess I just have a stray male gene! Not untill 1985 did I find a GP who was wonderful and trying to find out everything he could about CH. I was sent to a nuro, but had tried the long list of preventatives and nothing had worked. Remember my x husband getting mad at me because I was in such pain. He thought I was just a complainer. Have been to more ER's than I ever have wanted to see. I only go if I am at the point of help me now or I am gona kill myself. Usually get only narcs, DHE doesn't work and can only take so much imetrex. That headache goes away but sometimes I even get hit with another on the way home. O2 usually works for me most of the . Got that back in 1986 when my son was 2 weeks old and I had one of my worst cycles.here for me.My sons father got tired of my headaches too and left us in 89. My parents never could beleave they were as bad as they were. Still don't. If only they knew. My wonderful husband of 14 years has been my godsend. He is so good. He is the one who told me to try to find others on the internet in 2000 when I had my very worst cycle of all. I think of how much I wanted to kill myself to get out of the pain and how everyone here was always there for me. I am sure I would not be around if it wasn,t for this board and the people on it. I know I do not post much but I try to check in alot. to read how others are doing. so much more to tell but this is way to long. Thanks for being here for me.Miss you REE, MAST, BAMA, ELAINE,and of course all the MEN!

I forgot so many others I miss, BARBARA D, MELISSA, OH, I know there is more, but like barbara d I am old and forget ful and have CH which has killed many brain cells. Or it may have been all the different meds (shiver, shiver, almost went crazy on topamax, the worst med ever for me) helps others with CH though. LINDA H cannot forget you! As Pooh Bear says, THINK THINK THINK!!! BONNIE W from Canada, are you still around? And is SEXY LEGS Bill out there? Lerker Bill, With the most beautiful legs I have ever seen on a man.

September 2007, really stressful time of my life. Also I remember having a (very mild :P ) eye accident then and getting some jala neti salt in my cluster eye when doing my nasal irrigation thingy. I have a sort of private theory that the headaches are caused because of trapped salt water in the passageways of my head. I did the nasal irrigation thingy, went to sleep and was careless. I don't remember the water ever draining out. But I do remember getting a blocked hearing spontaneously to one of my ears around that time, which is something what never happens. I just don't remember which.

Anyways. I went to eye doctors with the burning sensation and pressure behind eye -story etc.

Saw a poor doc who told me it was just stress and I was imagining it :)

They were first constant and mild, with pain paroxysms. Thought it was hemicrania continua or paroxysmal hemicrania. Also thought it could be brain tumour. At first the attacks just weren't so bad, but they gradually built up in the span of months.

They've continued since then.

- Rosa

EDIT: Oh yeah, migraines since the age of ~ 8. Familiar history of probably misdiagnosed cluster headaches as migraines from my fathers side and migraines from my mothers side.

My first ch cycle arrived back in fall 2001. I had begun university studies that fall and moved from Finland to UK (London) and at first I thought that the HA was stress-related one; I've had HAs since I was 12, including migraine. The first cycle lasted from from October to December and was a lot milder than the ones which followed. The next one, which begun in the following October, was pure hell. I was diagnosed with ch in January 1, 2003.

Sanna

My headaches started in the Summer of 1982 while I was in the Army. You can imagine how Army Doctors dealt with the situation. I was misdiagnosed until 12 years ago. I have a recurrence every 2 years or so, almost always in the spring.

This might be hard to believe but  I cannot remember how mine stared.  I have had these things since I was a child.  I think that I may have been at school on a very hot day.  I had a terrible headache that my  said was due to the heat.  I was in the second grade.  That was the first one I remember.

After that I started getting them in the spring mostly.  Sometimes I would have them in the fall, not as bad though.  Our family doc gave me Inderal for migraines but that didn't help.  My Mom always told me that I had a very low tolerance for pain.  She got  migraines and didn't behave the way I did when I had one.  I remember her joking with my sisters about how I would act when I had my first child ( low pain tolerance and all).  Once in labor I was kind of like " this isn't so bad!"
I was so thankful when I finally got my CH diagnosis from a neuro.  I'm not a wimp!

I am sorry that you all get these things but I love that you all are here to understand EXACTLY what it is.

Jeannie