I am curious about people's first experiences suffering CH, because I feel like the origins of mine are kind of anomalous...

Well, I'm 24 and they began when I was 19.  But that's not the crucial part.  They started as just faint twangs and shadows that wouldn't last for more than a few minutes.  But they gradually got worse.  I remember them starting out as Kip 1-2, and only happening every few weeks or less.  They gradually got more frequent and more painful.

At the time I first saw a doctor, 2 years ago (their first appearance had been 3 years prior), they were usually peaking around Kip 7, and happening every few days to a week.  Since then they've increased to nearly daily, topping out at 8 and 9 if untreated.

Has anyone else experienced a gradual onset like this?

I've got another question to tag onto that...

For those of you that are chronic...how often do you get headaches?  Do they go through thick and thin spells?  I have all the symptoms...I just feel like I'm not suffering nearly as bad as everyone else...

mezza wrote on Dec 4^th, 2008 at 10:29pm:



Where did you get this information?   ...  or is this just speculation?

Paul

MITYRARE wrote on Dec 4^th, 2008 at 11:06pm:



Paul

It is by no means proven, but there is quite a lot of evidence suggesting that prevents may worsen the condition and extend cycles over a period of time. The CH experts certainly believe it, hence why so many people here advocate aborting with 02 if possible or looking for other prevents.

W

Wendy,

My symptoms are archetypal of CH, I don't know why I'm paranoid about it.  I do have two reliable abortives (imitrex and an herbal powder) and one decent one (head-ease, a homeopathic product from passion flower, skullcap, feverfew, and clematis), so I rarely have to deal with a full-blown attack. 

I suppose that I associate the bureaucratic and treatment difficulties that seem so common to CH sufferers and somehow perceive that since my treatment has been relatively simple thus far they may not be CH.  And that's not logical so...I guess I'm just putting my feelers out to see if anyone has shared my particular experiences.

B

brian wrote on Dec 4^th, 2008 at 10:41pm:




brian wrote on Dec 4^th, 2008 at 10:41pm:

I was diagnosed around your age, probably in the second cycle.  It was pretty hellish until I was prescribed the standard Verapamil, O2, and Imitrex (was still relatively new).  I had a couple of episodes without any meds in my youth but a handful of Advil and coffee (young and brave!).

My episodes in the past with or without Verapamil lasted 10-12 weeks.  This time it's been dragging for over 5 months.  So I don't know whether Verapamil prolongs the cycle--took it for two months and now off of it.

My worst CH's were in my 20's and early 30's.  For some reason aging has changed the severity of each attack??  This time prior to getting on Verapamil, I timed the duration and the severity of the pain without any abortive.  About 60 min (no change since the diagnosis), severity maybe 60% of the very worst suicidal one I can remember.  Frequency has decreased as well---3 hits a day at the very most without Verapamil.  These days I get to O2 very quickly, and CH's are really slowing down, so I can abort them quickly while they don't even hurt as much as tension headaches do.

Typically I have a month 'in', increasing its frequency and severity.  A month of "high cycle" I used to get hit 5x a day without Verapamil, then a month 'out'.  I don't know my own CH's pattern anymore though.

MrsT wrote on Dec 5^th, 2008 at 6:37am:

MrsT, please, PLEASE try to get over the guilty mindset!!  Thank God you are episodic!  No clusterhead wants to see another in pain.  NONE.

I have been PF for 3 years now and I do not feel a bit guilty for it.  I used to, and I would beat myself up about it, but eventually I changed my thought pattern and realized that instead of feeling guilty, I should be feeling grateful.

mel

BTW, sorry to the original poster for going off on a tangent

My very first hit was October 28. 2004.  This is no joke.  I got what I would have called a Kip 10 (at the time) first thing in the morning..... it ramped up for a few mins and then off to the dance.

That cycle I got 6-8 CH a day.  My last would end at 3-3:30 AM.  The cycle lasted 7 weeks or so.

All my cycle tend to start that way... just a few minutes of warning.  However, things changed last cycle when I went 16 months in that same pattern.  Since then I just get a daily shadow or two and the occasional worse CH thrown in.  Technically i think I am chronic but I too feel like I am a lesser sufferer not because anyone here makes me feel that way, but because I don't suffer as much.

With that said, Chuck better watch out for a big strange (and sorry chuck both married and ugly) man.  He might be aiming for a hug.

Also, I thought I was paying a price when the first headache came for what I had witnessed in person the night before my first CH.  very ironic, if you ask me. (and I dont even drink)

I've been Chronic since the first hit, in April 1987.  I thought I blew out a blood vessel in my brain.  I've never gone more than a week or so between hits.  I have up to 10 per day.

Ray

Brian,

I am episodic.  Mine started in my early 20's.  I don't remeber the exact year because back then I just thought they were bad headaches.  But the episodes only lasted a week or two with one headache a day although they were at the high end of the kip scale.  I use to have a year of PF time between episodes.  Then as I got older the week or two turned into 3-4 weeks and the last episode lasted 10 weeks with 2 and sometimes 3 hits a day. Also had the shadows and such as well.   I was scared to death I had went chronic.  Another thing worth note is the PF time inbetween episodes has increased as well.  I had almost 2 yrs PF before my current cycle started this past Thanksgiving.  God only knows how long this one will last.

I too feel guilty sometimes because I don't think I suffer as much as alot of people here.  Imitrex nasal has worked great for me usually killing the beast in a couple of minutes.  I feel fortunate this is all the treatment I have needed to this point.