So even after praying they would never come back of course they have. I was just wondering if cycles change for anyone and if they ever pick a month to start and just stay that way and has anyone ever heard of them going away for good. This will be my  5th time around. the first time was in November lasted a month and then went away,2 years later in November again, 3rd time came early in June, 4th time in April and now this time instead of comming early again I got them now so that was 2 years and 7-8  months in between..It's just so hard not being able to figure out a round about time to expect them. And what really makes me angry is that I finally know what works for me, Imitrex shots and oxygen but getting what you need doesn't always seem to be easy. My doctor wants me to see another Nuerologist and I just think it's pointless, I have MRI's cat scans, spinal taps, hospital stays and they all come back with nothing wrong with me lol, go figure....just give me what works and I'll be happy!

Just venting and Thank God for this site! :-[

I went the first 20 years to where the atomic clock was being set my cycles! Spring and fall, 8-12 weeks, a morning hit and en evening hit! Then the 40's hit and they've gone all over the chart.  ;D Sorry to say one of the beasts most annoying traits is that NOTHING ever seems to stay the same! They might just end all together and never come back...it happens. You might be in your 70's and 80's and they still keep coming!

What a bundle of sunshine I am huh? ;)

The good news is we'll always be here...vent away. No one here minds.

Guiseppi

I asked this very question to Prof. Goadsby in Dallas. He said that he had patients in their 80's that were still getting hit. He DID say that the remission period gets longer and longer in between.

As someone who started out once every year back in the early 70's, my last 2 cycles were 3 years apart. My last cycle was in 2000, so I have been pain free for 8 years this time. Are they over? Who knows. I am certainly hoping so.

Good luck getting your ammo. It shouldn't be that hard.

Hi Shannon,
    Sorry you are going through this again.

I used to get 1-2 cycles per year.  No specific time of the year,

My cycle would last about a month and a half.

Then they were gone,  I thought for good.  Six years later and I get the dreaded visit from the beast.

This cycle lasted about 3 months.  The attacks were not as severe as in the past and were about 90% at night.

Back in remission for now (hopefully for good).

Trying to figure this thing out is about as easy as picking the winning lotto numbers.

Hope you find your magic bullet.

                                      PFD's
                                       JPC

Used to be once a year for me and lasting for a week or two at the most.  That is when I was in my early 20's.  Then I had a year and half inbetween cycles, then almost 2 years inbetween this last time. (now I am almost 40) Of course my cycle lengths have increased along with the increase in remission time.   The last cycle lasted 10 weeks instead of 2 and was the most painfull cycle as well.  This cycle which just started last week has been mild so far incomparison.  Worst hit has been about a 5 so far.  Don't know if it is gonna ramp up or maybe just be a mild cycle?  Who knows?

Good morning, Shannon.

I've always been very much a clockwork episodic.

I cycled twice a year, six to eight weeks at a time, for twenty years--invariably in October/November and May/June.  

As Jimi mentioned, however, the cycles began to get farther and farther apart.  I cycled once a year for the following ten years.  Then they began to come three years between.  My last cycle was in May/June of 2006.

Are they gone altogether?  I seriously doubt it--but painfree time is painfree time, and it is very, very welcome.

Best wishes,

George

First of all: welcome Shannon.

I was blessed with CH in my final year in high school, that was either '92 or '93 - I don't remember if it was spring or autumn.
During the nineties my headaches were all over the board. Not saying I was chronic, because I wasn't, just that I'd have a lot of unexpected shorter cycles throughout the year.
There wasn't any set time like autumn or spring. Hell, I remember one summer I had to spend mostly inside, as I'd get high kips as soon as I stepped into the sun. That was both a depressing time and I'd never been paler before lol!

I'd get hit in class that final year on high school, which was very embarrassing I can tell you.
I used to work back then with oilpaint, not realizing at first the smell of terpentine would set me off.
Was abusing the injectables a lot, so at one time I was given Sandomigran/ Pizotifene which didn't help a bit.
During my time in the army I went off the sandomigran and back to the injectables.
By the time I went to college (art school) I had swore off oilpaint, which wasn't a problem with my teachers: I could use acrylics.

Fast forward to '99. Didn't get any cycle so I assumed it was gone forever. Wasn't very educated on CH back then.
Then, in the end of 2000 and beginning of 2001 I had another cycle, and from that point on they were more predictable. So now they come every two to two and a half years: at the end of 2003, at the end of 2005, and in spring 2008.
I honest to God hope they stay that way, so I won't be due till 2010.

But you just never know really for sure. One thing is certain though: this time I will not forget the demonbi-tch. I've learned that here (and many other things).

Wishing you pf time very very soon,
Pascal.

"Who knows" is really what I feel!  My CH "used to be" since I got diagnosed in my second cycle in '85:

Summer (10-12 weeks)
24 months off
Summer (10-12 weeks)
18 months off
Winter (8-10 weeks)
18 months off
repeat from the top
never been clockwork, but at least I knew the year and the season.....

By the time I figured out the pattern, I hit 40.  Then nothing but "solo attacks" a couple of times a year.  I thought I was due for sure in 2004, nothing happened but isolated solo attacks.  This year I can't say I was surprised it returned because of high stress---now it's into its 6th month!

I can say for sure that the intensity of the CH pain has gotten milder and milder in each cycle.  Would I have the suicidal one in the next cycle?  Or is the current one even going to end?  Who knows......

Thank you all for your comments and letting me know what you go through. This time hasn't been as bad so far but I have to say it's the most horrible feeling in the world to not have a cure to stop them all together so to speak..I'm so thankful for this site because without it I may not of ever been able to get through..

Thanks again!

Shannon, you bring up a point that most of us chronics think is the worst part of clusters.  The dread of knowing when they will start up again.  A lot of chronics feel that you episodics have it worse than us, because you go pain free (which is great!) but then you have the terrible fear and dread of when they will start again.  And when they do, you realize that you forgot just how bad they are.  We don't have that.  We know we are going to get hit, every day.  So we don't have that fear of when the next hit will be.  It is easier to adjust your life around them, if you know it will be there every day.

Also, while you are out of cycle, continue to collect your Imitrex prescriptions, so that once they start back up, you will have a large supply built up.  Also, don't turn in all your oxygen tanks.  Keep some handy, for when they do start back up.

One of the frustrating personality quirks of the beast, is that the SOB is constantly morphing.  Just when you feel comfortable, and expectant, the beast changes, just to mess with your mind.

Many clusterheads end up getting less power, and fewer cycles as they mature, but then again, (as my neuro accuses me) I break all the rules listed in the clusterhead rule book.  As I have gotten older ... errrr ... ummm ... matured ... ummmm ... advanced in years, my clusters have gotten worse.  I was almost 50 when I turned chronic.  Next year will be my tenth year of being chronic.  

Gee, just think!  Next year I get to celebrate my thirtieth anniversary of my marriage to the beast!  Lucky me!

You just never know ...

Good luck!

Chuck

So Chuck, just how old are you compared to dirt? ;D

Edit to add; LY Chuck!

wrote on Dec 13^th, 2008 at 12:09am:

So Chuck, just how old are you compared to dirt? ;D

Not sure ... I DO seem to remember when dirt was created, though ...

Hmmmm ... I wonder if that is why my kids call me "Older Than Dirt" instead of "Dad" ??

Chuck

that was to funny, you are only as old as you feel haha! I have a question I have some left over imitrex that expired november of 2007 is it safe to still use them does anyone know?

It’s strange; I seem to be the worst in the fall and spring with milder peaks in the summer. I most notice it as the days increase and decrease rapidly. The CH is lighter in the mid summer and a month or two in the dead of winter. This year I am stressed so the hit are staying steady so far.

I thought allergies where the cause of the swing but over time realized it always was at max time shift. Another strange thing with me is that as a chronic I seem to be on a 3 day clock. My HA calendar reflects this also. I tend to get hit 2 days and then a day break before it starts again. Like a flee market 8 track tape form the 70’…

Roland. :)

Wouldn't it be great if someone just found a cure for us! I'm having a hell of a night, not to  bad all day then bam the f'er smacked me right in the face..no sleep for me tonight..I hate to complain because I am episodic so I get breaks but for the love of God you just want to rip your head off sometimes >:(

Shannon0601 wrote on Dec 13^th, 2008 at 1:22am:

I have a question I have some left over imitrex that expired november of 2007 is it safe to still use them does anyone know?

I wouldn't worry about it unless it’ cloudy looking (inject able) or if its pills there in there own little space capsule so you know. The FDA makes them put exp dates on water… That’s funny! The dam water has dinosaur pee in it so we know it old.

PF’s Roland. ;)

That's true..I pulled the vial out to look at it and it doesn't seem to look any different then my other ones.

I dunno about Trex, but my Doc told me that Zomig nasal does start to loose some effectiveness after the expire date.

B

Shannon, do you have any oxygen? Try to get your neuro to prescribe it for you. It works wonders for the head in the time of need.

Rolo… ;)

Actually I just saw a new Neurologist today and finally have a perscription for it! I'm actually finding a place tomorrow afternoon to try and have it filled...Long story short last time around the ER doc's insisted on the usual cat scan and MRI and a spinal tap, well long story short spinal tap made me sick and I ended up in the hospital for 4 days, I used oxygen alot while there and it helped take this dull feeling away so I'm keeping my fingers crossed the insurance company doesn't object and that I will have the oxygen soon

I also agree with Racer, it may depend alot on the drug in question. I have used 2 yr old trex and it was ok but I keep it in a dark cool place also. I don't use it often so sometimes I don't nave alot on hand when I want it so out of necessity and so on...

Rolo. :)

Edit to add; thats great news! please check out the O2 info and proper mask for CH use...

do you know if when being perscribed the o2 if they give you the mask you need?

Shannon0601 wrote on Dec 13^th, 2008 at 1:53am:

do you know if when being perscribed the o2 if they give you the mask you need?

Depends on how the doc writes the script. You can purchase an even better mask than they'll give you....

B

I'm almost afraid to do this but it's 2 AM and the pain is better so I'm going to try to go to sleep. Crazy that sleeping is scarey! Thank you so much for all of your help and for listening to me bable tonight! I'm gonna check back in the morning!

It depends on your supplier. Hopefully the doc wrote the prescription right. It generally needs to say something like

"Oxygen, as needed, at least 15 LPM, using a non re breather mask."

The key is to get ONLY pure oxygen in your lungs. No outside air, no air you've exhaled. That's why the nasal canulas and re breather masks are no good, they dilute the pure oxygen.

Your supplier will hopefully understand what you need.

Joe

Usually not. It is a big problem with O2 suppliers. You will Need a high flow regulator (15 LPM) and a non-rebreather mask with reservoir bag so you get 100% O2. There are several examples in Cluster Chuck’s post. Here’s the link.

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

Shannon, we O2 users get a little zealous when it comes to our precious oxygen so don’t let us overwhelm you. We will help you in every way we can. Every O2 success is like candy in our stockings. I hope you don’t get to read this until the sun comes up! [smiley=sleep.gif]

Pain Free Wishes to ya!

Roland.  [smiley=hug.gif]

Shannon0601 wrote on Dec 13^th, 2008 at 1:22am:

that was to funny, you are only as old as you feel haha! I have a question I have some left over imitrex that expired november of 2007 is it safe to still use them does anyone know?

The date is a guide line ... Also a CYA thing for the manufacturers.

I have used trex that was three years out of date.  No problems.

I am not a pharmacist, nor a doctor, but I think it will not HURT you to use outdated trex, it is just that it may have lost some of its potency.

Chuck

Had a bad few days, emergency room visit, no medicine because of the insurance company, so I'm just checking these messages..Thank you so much for all of the responses