I'm around 3 weeks into a cycle... I get them every few years and they typically last around 3ish weeks.  What I don't remember is whether the intensity/frequency changes as I near the end of a cycle or whether it just abruptly stops.  This cycle has been kip 7 or 8, once or twice every single night.

I'd like to see if anyone has any thoughts about how the end of a cycle looks for intensity/frequency.  I'm debating whether to spend the $ on doc to get oxygen.

You'll get a hundred different answers on this one, it gets discussed a lot. For many they start little, build into mothers!!!....slowly reduce, and fade into the sunset. For some, they get a couple of mind blowing KIP 10's, then they stop just as suddenly and their cycle is over. And everything in between. A frustrating aspect of the beast is how different he is for each person....and often times how different he is each cycle!

My two cents??? Get the groundwork done now to form a relationship with a doc who is on board with the 02 idea, and get hooked up with a distributor, APRIA etc., who understands the gear you need. Even if you don't use it this cycle, you're 2 phone calls away from having the 02 delievered next cycle. That's about the only guarantee...there will be a next cycle. :(

Joe

Thx.  Calling Dr.  Sorry if this is covered somewhere, but is there a collection of recommended CH specialists?  Other than googling headache san francisco, I'm not sure where to go.

No apologies necassary...it's a big board! I stole this from Bob Johnson who painstakingly laid out the best way to locate a good headache specialist. With apologies to Bob for the flagrant theft! ;)

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor

It is like with migraines or fevers and flu, everyone goes through it and has slightly different from eachother symptoms.

Shame on you Joe...  j/k.  I'll agree with you though and well done indeed Bob Johnson.  Mine seem to differ almost every time.  Although as Joe said most of my cycles any more start off slow and gradually increase.  Even with prevents right now I'm getting anywhere from 6-12 which usually means I'm peaking.  Eventually they decrease, I start sleeping through the night and they slowly disappear.  I'm not even real sure what week I'm in, because the shadows started sometime in June.  I guess with any luck in a few weeks they'll be gone.  The amount of time I'm in cycle varies as well as the breaks.  Come to think of it, my entire 28 years of this is almost the same story.  Everyone is different so here hoping for the best for you.

The one thing I can say is the day I was first prescribed O2 was one of the best I had in a very long time.  Stuff is a game changer.  I still dread these attacks but at least I don't suffer like I used to before I found the right doctor.  Now I have the ability to abort these damn things.  Still get em, just don't suffer as much.  Preventatives help as well.  Sometimes they take adjusting and what works once may not work the same next time.

I truely hope you find some relief soon, these things are not fun, but we're all pretty strong.  Pain Free Days and Nights are out there.

Edited because of my fat fingers...

Hi and welcome to the board! 

Sorry to hear you're hurting.  Have to agree with Art - since having the 02 on hand my cycles have changed quite a bit... maybe because I'm taking less meds??  Cycles often change in terms of length - but normally around 8-10 weeks.  But I must say I use to know when my cycle had come to an end because I'd go out with a biggy!  BAM and it was gone... nowdays they seem to just come less often and then finally gone.  Having said that - the more you read on here the more you will see that the beast likes to morph - you think you've got it all sussed and then it changes.

My advice - definately well worth spending the money on a Doc to get a script for 02 - a life changer for many!!  Just try to make sure that you find a doc who knows about CH.

See ya,

Kate

Yikes, my cycles are all over the map.  When I first got them when I was 17, it was just few that felt like a bad sinus headache and that's what I was diagnosed with like many...

Then, when I got into my 20's they would be like 1 week cycles once a year.  Since I have been 30 I have had 2 week cycles once a year until this year where it was 2 months.  The frequency would change each week.  The severity or intensity was very low.  I had two peak points on the cycle spread out about 3 weeks.  I use rivea corymbosa seeds and I know they tamed this monster to Kip 3's or less.   The HA's that exceeded that was easily aborted with O2.  You'll see that everybodies cycles are different.  Mine are all over the map and I no longer predict cycles to start this "season" or that "season" because I have gotten them in winter, fall, spring and summer.  I just have my knowledge and weapons loaded at all times.

Stick around, you'll learn a lot on this site.

Ask us anything...

All the best!

-Chad

Yep the intensity/frequency over time really does seem to vary widely from individual to individual.

Over the past 30 years my episodes have gradually gotten longer, but with longer remissions in between. For my past several cycles I've started off my 2.5 month episodes with a week of one attack a night that can be aborted by breathing freezing air, then the ramp up to multiple hits per day at higher intensities that the cold air trick does nothing for, and crushing nightime blasters that even hyperventilated hi flow 02 won't quelch (I've whipped out half dose imitrex injections for those).

My more recent episodes have pretty quickly sputtered to a stop towards the end, with lingering shadows for about a month afterwards.

OK, going to try to go see Peter Goadsby at UCSF.  Gotta get a referral from my existing Dr. to get in (which, of course, takes a week to get).
I'll muddle along until then.

Oh my...if you can get in to see Goadsby, you're on your way! He was one of the speakers at the Atlanta Conference, what a brilliant, yet down to earth man, really enjoyed him!

Joe