This is only the fourth year my husband has dealt with CHs, and I'm wondering if those of you who have suffered with them longer than that can report on how your attacks change over the years. He's episodic (I assume--gets them for 3-4 weeks once or twice a year), but the cluster length, # of headaches per cluster, and date of cluster onset keep changing. His first two clusters were almost exactly a year apart, but then the third came 7 months later, and then he had over a year before this one.

Have you found that the clusters get worse/more intense/more frequent over time? And do you know of anyone who has had cluster headaches and then, after a while, simply stopped getting them?

Allison,

  The one constant about CH is their capacity to morph and change.  I'm chronic so that may not apply but I get them mostly on my right side and then they'll go to the left.  The other day I got hit on the left side but my right nostril and eye were running and stuffed up.  Sometimes I'll get hit hard and fast and it's over in 10 mins. and other times they last for what feels like forever.  Don't concern yourself with the changes, they're normal.

Quote:


Several.  Charlie hasn't had a HA now for about 13 years.  Jimi Hendrix, DJ and a few others haven't had one for several years.  

In the first 5 years, the cycle were like clockwork. Always day hits, and always in July. That changed....In the last 8 years, most come at night and the cycle is 5 months long. My current cycle has been the most severe to date. Day and night hits, 5-7 hits per day, and today the demon has been switch hitting. It's the first time I've ever been hit on the left side (twice so far today), and the switch hit is even more severe than any CH I have ever had. The only constant for me has to do with the weather (dry and cold or extreme humidity).

My cycle started the first week of September.  Two days that were completely pain free. I'm getting to be near my wits end too.
T

Just seconding/thirding the oxygen votes. Many people in the past were given re breather masks, low flow regulators, or even worse, nasal canulas. All of which will guarantee that the 02 is ineffective.

As much as it's used on the board, we're still discovering new material on the use of oxygen. Thanks in no small part to Batch, we continue to refine how 02 is used to increase it's effectiveness. So like Chuckles said, read the new link and give it a shot.

Joe

My cycles have grown longer and more frequent with time.  The dosage of preventative medicine (verapamil) has increased with time too.  The only pain free period I had for a length of time was about a yr with a successful ClusterBuster attempt, but I haven't been able to try it since.  I fear a change from episodic to chronic with how bad and long the last cycle was.

It's funny - I was about to post this same question.  In the 15 years I've been an episodic sufferer, it's been pretty clear and predictable.  the first two were only really a few hits, and I only really lump them in with "clusters" in that it was the same intensity and that same darn spot in my right temple, but not really "clustered."  Then, since 99, I've had about four weeks worth of intense headaches, one or two a day, usually outside of around 900 to 1700.  In the evenings, overnight in my sleep, or in the mornings, I'd get an intense hit for like 40 minutes to an hour.  That one in 99, and then in 01 were in the summer.  Then in Jan 04, that switched to the winter.  then in Dec 05, it stayed in the winter.  When I started in with hits on Jan 3 this year, I thought, wow, at least I went a whole three years without the beast, and I got to the doc for all the stuff that seemed to help last time (imitrex, prednisone, and I was still on verapamil from the last time three years prior).  But this time, the hits were longer, and they often never went fully away.  one four day stretch, I was at a k3 to k8 - never really fully going pain free, just sort of varying shades of pain.

But now, four weeks are past.  I haven't had anything worse than a K4 in the past 7 to 10 days, but I still am shadowing pretty constantly.  Like hardly a K2, but still "there".  And I can feel that same nerve twitch and tingle - not to a pain point, but in a "hey, i'm still here" way.  Its almost to where I want it to just come out and HIT already instead of just toying with me.

After having such textbook clusters of distinct hits, this current cluster is really freaking me out and I'm starting to lose my grip.  Then, I think the stress of this constant "almost hit" is making the pain even worse.  My ability to concentrate at work, have fun or make plans eve for the weekend are pretty much zero. 

Have any of you switched from "normal" clustering to more murky, vague levels pain, lasting sort of headache periods?  Even as I type this, I can feel that same nerve twitching and can feel my right sinus sort of closing up a little.  I don't think it'll get worse than just that.  But it's there.  Mocking me.

I've gotten a referral to go to a neuro (have been to one before, when I was first diagnosed correctly back in 04, but since have been just going to my general doc for the scripts), so I'll hash this all out with him once that goes through, but I wanted to get your guys' opinion on this.  thanks for understanding.  <deep breath, tries to relax>

I've been an episodic for--let's see--43 years now.

At first, for a brief period of time, they were fairly unpredictable and random.  They quickly settled into established cycles, six weeks in duration, that occurred twice a year, spring and fall.  This went on for 20 years.

For the next ten years, I got one cycle a year, almost invariably in the spring.

The past three cycles have been three years apart, always in the spring.  The cycles themselves are about the same in intensity and duration.  I've never been chronic.

So they seem to be fading with time, at least in my case.

Fingers crossed.

YMMV.

All the best,

George

Like Ellick, my HAs as a child were very random.   As a teen they were mostly in the Spring and during the day.  They disappeared late teens and early twenties then returned mid- twenties and I have been Episodic since.

CH likes to keep you on your toes.  You never know what you'll get.

Jeannie