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?

My first three cycles always came in the fall about the same time as a episodic.
Then they got worse as I became chronic, nine years now.
When I do get hit now they are much more intense Than my first couple of cycles.

Marty

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:

And do you know of anyone who has had cluster headaches and then, after a while, simply stopped getting them?

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.  

1st cycle lasted about a week, maybe two weeks during August of 04. The pain was intense, a couple K10s... but managable. My headaches didn't start on a pattern, just whenever. I hardly ever had more than one headache a day.

2nd cycle lasted two to three weeks during May of 06... more K10's and more trips to the ER... not as managable. Still no "schedule" of headaches, but because I didn't know that I had CH and everyone thought I was dying I ended up in the ER 9 times out of 10.

3rd cycle lasted a month and a week-two weeks during October/November of 07. This is when I started taking different medicines such as Depakote, Topamax, Imitrex, etc. (and I wasn't really diagnosed here, they just thought I had back to back migraines..) I had to be homeschooled because my attacks were so random and I was missing weeks of school.

and this is my 4th cycle, going on about a week and a half now. Finally diagnosed with CH... never heard of them before this past Tuesday. I can only pray it doesn't get longer than the last time. This cycle most of my headaches are between 5 am and 12pm... I've only had one, so far, wake me from sleep.

During all of my cycles, I've have VERY FEW days where I had more than one headache a day, Thank God. As for more frequent? I'd have to say they haven't gotten more frequent as the cycles come back, just longer. =\

I hope this helps. If you have an questions let me know.

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).

I have had CH for over 5 months now with only a relief of 3 days at the most during this time.  Am I the weird one here?  I went years without and it is back without a break...I am at wits end.

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

Deb, I am sorry you are going through this again after such a long break.  Are you using oxygen as an abortive?  You can read about it at the link on the left side of your screen oxygen info or, if you don't see the tabs, here is the way to it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Oxygen has been a life saver for many of us.  Try it.  Even if you had tried it in the past, try it again.  Make sure you are using it properly.

Alison, I ask you the same question, is your husband using oxygen?

Most people that say it did not (or does not) work for them, were not using it properly, or they did not have a high enough flow rate.

Both of you, keep us informed.  We want to help.

Chuck

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

Hi Alison,

I've had episodic clusters for 50 years or more and I can't say anyone of them has been the same.

When I was a child they would come one day and be gone the next and then come at random times over a period of time.

I had some good remission period in  my late teens and through my twenties: - the 60s and 70s. Now hen I look back I think the remission was because like a lot of the post war baby boomers we got high a lot with dope, LSD, magic mushrooms. I quit all that when I was in my 30s and thats when the CH returned. I spent many years undiagnosed. I was diagnosed about 12 years ago.

The pain used to be on my left side now it's on the right. It used to be under my eye, the top of my head, and through my right ear. Now its above my eye and top of my head. It used to come on in one go . In more recent years I get a month long headache before it starts. I used to get pain free periods inbetween hits. Now when in cycle I have constant pain from 3 to 7. My cycle used to be in January. My hits have never been at the same time of day,the only constant is I always wake up about an hour after going to sleep no matter what time I go to bed. I always have to judge when a kip 567 is going to go full blown. I get it right about 50%.

What it all adds up to for me is it's highly unpredictable and I always have to think how do I 'head it off at the pass'.

One thing is for sure, I know so much more about it now and I am optimistic that a cure or safer treatment is on the horizon. Mind you I don't gamble so I wouldn't bet on it. It's choosing optimism over pessimism any day that counts and keeps the fight going.

Best wishes to you,

Ellick.

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.

your husbands cycles sound a lot like how mine started, my attacks have always been unpredictable, no set time of day, and i'd go a year pain free, then 6 months, then 2 years, but mine have seemed to become a lot worse over time. i started with one per day, now i'm getting 8, and my cycles are longer too. this site has been a big help to me, theres a lot of great people who know a whole lot about theese things. best of luck to you and your husband, hopefully his will get better with time instead of worse.

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>

The changes that happen with CH are as individual as the people that suffer from CH. My first years of CH, I could pre-mark my calender and set my clock by my attacks. As an episodic I feared a certain date...

As the years passed (20 yrs.) the date or time of year lost it's meaning for my CH. It can come anytime and has. The one thing the same is the pain. My cycle starts out slow then peaks and slowly ends once again. I'm much better armed now than ever before to battle the beast.

Don

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

cant tell about periods as i am no episodic.but as chronic yes they are completely unpredictable and random

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

Mine have been fairly consistant for 10 /15 years. Only until the last two three years have they started to morph into a worse hell.  

Switched sides, went from the back of the neck when starting up to the left jaw, like a screaming toothache!!   Episodic to cronic.  Most meds quit working and life is worse.  Nuro says prepare for the next years of the same old same old.  

When on varapamill cluster seems to be toned down, but every moring a screaming migrane. EVERYDAY!! Relpax helps but takes it's toll on your guts after months of those.  

I now get a a "Dirty Signal" as I call it (computer geek)  where your head does all kinds of strange stuff, RED HOT EARS, a buzzing in my forehead, weird feelings I cant explain but I call them Green Headaches, like if your head was unripe fruit. Weird I know :)