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?

Brian

I am episodic.  Mine cycles have gotten worse over time.  First cycle lasted only a week or 2 ( can't remember exactly because it was 13-14 years ago)  took a course of preds and painfree

2nd episode happenned about 4 years later, same month as first episode.  Lasted longer but preds killed it. Probably about 3 weeks total- didn't get preds till 2nd week or so.    CH hit both sides that cycle and only that cycle

3rd episode- this past march ( same month as past two cycles )  preds bought me 1-2 days painfree.  Had to get prevents this time and had a pretty nasty cycle for me.  Whole cycle lasted about 12-14 weeks.   Had lingering shadows for about another month after.  

So yep... for me appears like cycles are longer over the years but who knows what the future will bring.   Also verapamil , the prevent I was taking is known for extending cycles.   However, thats the drug that got me relatively pain free and allowed me to cope.

BTW... I am pretty sure the Indomethicin test is for Paroxsymal Hemicrania..

Kelly

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:

BTW... I am pretty sure the Indomethicin test is for Paroxsymal Hemicrania.. Kelly

Kelly . The Indotest is for several headache types of which PH is one, and possibly the second most common one mistaken for CH after migraine. It is also used as a rule out for CH as it doesn't usually touch them

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

Also verapamil , the prevent I was taking is known for extending cycles.   Kelly

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

Paul

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

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...

Brian

Would it be worth going back to square one and specifically describing your headaches i.e. frequency, duration, type and location of pain, other symptoms you suffer and what you do during an attack?

People here can then understand why it may be that you seem to feel your CH doesn't fit what others here suffer and may also explain why your remedies work for you where they don't for others?

Wendy

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

mezza wrote on Dec 4th, 2008 at 10:29pm:   Also verapamil , the prevent I was taking is known for extending cycles.   Kelly Where did you get this information?   ...  or is this just speculation? Paul

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

Thanks wendy..

Paul-

From everything I've read many of the prevents as wendy has said , with verap being one, are thought to lengthen the cycle.   There has been numerous posts on this board about this very topic.   If you go up to the top and search the boards , I think you'll find some pretty interesting information about this... Happy reading

Kelly

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 11:29pm:

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

Not 02???

I saw you advocating it to someone else on another thread?

Mine started with a bang (29 years ago).  My first hit was probably at least a KIP 8.  I had about three hits a day, that first cycle.  It lasted about four months.

My next cycle was about a year and a half later, and again about four months.

I then went FIVE YEARS pain free!  I thought (as most of us would) that they were gone for good.  No such luck!

I stayed episodic for 20 years, and then I went chronic, and still am.


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

For those of you that are chronic...how often do you get headaches?  Do they go through thick and thin spells?

During my "low cycle" period (I think what you are calling "thin" spell), I get between 5 to 8 hits a day.

During "high cycle" ("thick" spell?) I can get as many as 20 hits in a 24 hours period.

Thank G_d for OXYGEN!


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

I have all the symptoms...I just feel like I'm not suffering nearly as bad as everyone else...

If you were right next to me, right now, I would smack you up the side of the head for that statement!  You are a clusterhead!  It does not matter how many hits you get.  You still are one of us, and deserve the same treatment as anyone else does.  None of us are more or less of a clusterhead!  If you only get one hit a week, that is too many!

(Getting off my soap box, now)  LOL

Chuck

Wendy,

LOL!  Yeah I am touting oxygen because of how successful other people are with it.  I tried it once, didn't work, but only had 10 lpm and wrong type of mask, so I plan on trying it again VERY soon.  

Chuck,

Wow that's a lot of headaches!!! You are a damn warrior for dealing with that!!! I want to stop feeling like a "lesser" clusterhead, but when people are getting hit like that it's tough.  But I will do my best, thanks for the kind words :-)

B

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.

ClusterChuck wrote on Dec 4^th, 2008 at 11:49pm:

You are a clusterhead!  It does not matter how many hits you get.  You still are one of us, and deserve the same treatment as anyone else does.  None of us are more or less of a clusterhead!  If you only get one hit a week, that is too many!

Chuck, this is one thing I REALLY appreciate about this board.  We episodics DO feel guilty.......well, I should just speak for myself!  Every episode makes me fearful of going chronic, and I feel guilty imagining how you chronics go on without a break.  I get hit once or twice a day (or down to 5 a week if Verapamil is working real well) and feel guilty about self-pity when others are getting hit 8+ times a day.  I feel guilty about O2 working so well before the CH even hurts me while there are some members O2 does nothing for.

No, I'm not a Catholic LOL.  But I do feel my suffering is nothing compared to you guys'.  I know it's stupid to get into "whose pain is worse", but I know chronics would be happy to have a couple of months of totally PF time, even just a couple of weeks.

So my big thank-you to all chronic sufferers for being so loving toward us "seasonal" sufferers.

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

Chuck, this is one thing I REALLY appreciate about this board.  We episodics DO feel guilty.......well, I should just speak for myself!  Every episode makes me fearful of going chronic, and I feel guilty imagining how you chronics go on without a break.  I get hit once or twice a day (or down to 5 a week if Verapamil is working real well) and feel guilty about self-pity when others are getting hit 8+ times a day.  I feel guilty about O2 working so well before the CH even hurts me while there are some members O2 does nothing for. No, I'm not a Catholic LOL.  But I do feel my suffering is nothing compared to you guys'.  I know it's stupid to get into "whose pain is worse", but I know chronics would be happy to have a couple of months of totally PF time, even just a couple of weeks. So my big thank-you to all chronic sufferers for being so loving toward us "seasonal" sufferers.

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.

[smiley=hug.gif]mel

Mrs. T,

With us chronics, we KNOW we're gonna get hit and we plan around them. Most of us lead "normal" lives (except for Chuck and he don't know what "normal" means ;) ). The "advantage" is - we don't have to worry about WHEN they're coming back - they just live with us.

It's hard to explain, but it's just a part of us and we accept it as such and go on with our lives.

Like I said, it's hard to explain - I've been chronic since 97 and it's just something I live with and I'm about as normal as they come (of course Chuckles will tell you I'm an old senile broad, but as long as I don't know it I'm happy!!"

Hugs BD

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

Brian,

For me it started over 6 years ago, and first manifested itself at about once a month. After about 6 months it ramped up to once a week, and after a little over a year I was a daily chronic. It all started when I was 36 and by 38 I was feeling doomed.

At first I was convinced it was TMJ so off to the U of M TMJ clinic for oral splints. I was eventually discouraged with no improvement, but convinced it still had to be my jaw. I went to an orthodontist for braces, now convinced it was my horrible locked bite.

I was talking to a friend who told me his neighbor had the same horrible HA’s and I gave him a call to discuss it. He told me he had CH and explained it to me. I just knew I had CH after that discussion. I called my neurologist for an appointment and was diagnosed.

Before this CH started, I had never had migraines or a bad HA in my life.

I was soo furious with the TMJ clinic for not having a clue and leaving me in pain, and blaming me for not using the splint 24/7. I tried to tell them that the splint was making it worse but they wouldn’t hear that. So now I have straight teeth and a crooked head!

Best,

Roland. 8-)

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 am chronic and get hit 4-6 times day the only low cycle is when the intensity is lower for awhile.
i repeat what chuck said. it doesn't matter painn and a clusterhead is a cluster head

off my soapbox now too

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,

What you describe is very typical (or so I have been told by my neuro).
Mine started at 14 (with full blown headaches) but needless to say they were milder (although they were fullblown and quite painful).  They were however not established into the lovely pattern they blossomed into over the years--4-9 a day during cycle and a lot more intense (that took quite a few years to work up to).  I have been told that that is "typical" for episodic cluster headache.

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.

yeah, mine start off easy 1-2s then ina  few days or a week move up to 5-7 and then in two weeks time mine are up to the 9s..  but i have had cycles that fs were the strongest, and then I have had cycles where most every attack was an 8.. so for me,, there is no ryme or reason that i can find, however, i did find that the level of histimine in the food that I was eating or not eating had a major effect on the severity of my cycles, and for a couple of years, no hits at all, because I was dieting and stayed away from many of the heavy histimine producing foods and drinks...  check out this site to see if your eating any heavy histimine stuff..

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE