My husband, Tim,  is 47 and has had CH since late teens, early 20's.  He's episodic and only cycles every 3 years or so with no consistency when they start (they've started in Jan, Oct, March, Aug... you name it). First doc to mention CH was in '95 but given ineffective meds.  Even with this diagnosis, other doc's have tried to write it off as sinus headaches or migraines.  

I bless the day I found this website back in 2001!!  When Tim went by himself to the doc when he started his 2001 cycle, he was give some Imitrex.    Nothing else.  He actually had a full-blown CH in the doc's office.  Loaded with all the knowledge gathered from the trials and errors of all of you, I marched back to the office asking why he wasn't trying other preventatives.  I asked why he didn't offer prednisone, and he said "I've had limited success with it".  I insisted we try and he wrote a script.  Within the very first dose Tim felt them working.  Within 48-72 hours, he was PH.  He had to stay on it for about 7-10 days and the cycle was completely aborted and he was nearly PF for the duration.  

The lesson learned was 2-fold.  First, we must all be our own health advocate.  Even if the docs really care, with the rariety of this and heavy workloads, they likely don't know enough to give adequate care.  Second, as a supporter, we need to be the advocate for our spouse or partner.  Allowing Tim to go to the doc appointment by himself (I offered but he said no) was a big mistake.  He was in the middle of a full-blown cycle, and his head certainly was working properly, especially given then he had one right in the office.  He was in no condition to hold a productive conversation and debate with the doc about alterative meds or course of treatment.

Thankfully a short cycle of predisone continues to work for Tim.  It stopped his 2005 cycle and now 4 days into a new cycle, it's working again.  Last night was completely PH and he got a full 8 hours sleep!!!!

If I hadn't found this site to arm us with this powerful information, I know he'd be suffering terribly.  Thank you, thank you, thank you!!

Now that I've got all that off my chest, I have a question.  Years ago a pharmacist who had CH told Tim that as you grow older, the attacks get milder and eventually you grow out of them.  I think Tim has always held on to that believe and every cycle and year that passes he feels gets him closer to these going away for good.

I've not read anything that supports this idea.  If anything, I've seen many posting about things getting worse (e.g. moving from episodic to chronic).  Does anyone know of any research to prove/disprove or, better yet, any personal experience that would prove or disprove this?

Quote:

Years ago a pharmacist who had CH told Tim that as you grow older, the attacks get milder and eventually you grow out of them.

Sometimes. Not always. There are several here for whom this has happened.

Your pharmacist shouldn't make blanket statements like that.

Hi Kay - welcome to the site.  My husband is also a CH sufferer. He used to have cycles twice a year like clockwork, near around the time changes. He has taken alot of what he's learned here and we think has a good system of preventatives, and abortives. He seems to have only had 1 cycle each of the last couple years, although they seemed to last much longer than than earlier ones. I think he's been PF for about a year now, can't specifically recall the last cycle. I usually remind myself by checking the Rx bottles for dates and will do that later.

We keep hoping he'll "outgrow" but no one really knows for sure. Even when time goes by I think I would still worry about the next one and always make sure we're prepared with at least imitrex.  We pack for vacations as if he's on cycle and take everything except maybe O2.

I do agree with Brew though that health professionals would be best advised to not make blanket statements because as you'll learn as you read posts here, it's hard to find 2 CH'rs alike. That's the frustrating part of this condition and I think what makes it hard to know how to stop it completely.

Christy

It's funny you mention being prepared while on vacation.  This cycle happened to hit while we were on vacation.  Given the unpredictable nature of Tim's, I've always packed an imitrex "just in case".  When they only come every 3 years or so (this time he went 4 years), you kind of forget about them (can't believe I wrote that!).  This was the first time I didn't pack anything, and I guess it was Murphy's Law that he started a cycle.  Luckily his start mild and build over a few days.  Tylenol, Ibuprofen and caffeine can keep them at bay for the first 48-72 hours so we were very lucky this time.

I'm curious if others who have longs spells between episodes go through a period of denial when one starts.  Tim never gets headaches of any kind other than CH.  When he asks me for Tylenol, I know what that really means.  He, however, for a days denies that a cycle is coming on.  Although I repeatedly insist he get to the doc, he puts it off.  I think it's his way of dealing with it (if denial can be considered dealing).  After several nights of missing sleep and attacks getting stronger, I get to a point where I'm angry and frustrated because he won't acknowledge it.  This time I was the one who got the O2 tank out of the closet and got the dust off.  I was the one who found the remaining prednisone and Imitrex from 2005 (expired but at least it was something) and it was I who made the doc appointment.  

Don't get me wrong.  Tim is awesome about putting up with this sh*t.  He doesn't look for pity (just the opposite) and his night attacks can go unnoticed by me because he gets the ice packs and energy drink and deals with it on his own.   I'm just curious if others have this same kind of initial denial.

Hi Kay

Welcome & thanks for being a supporter for Tim.

A couple from my experience that may help:

I only got my first episode just before I turned 50, I then had a 5 year break before it came back again & have been chronic since, I’m now 60 so the thought of me being free of it when I get older looks a little like I may have to live to be 100 or I could get Alzheimer’s & forget I got it. :)

With Tim preferring to ride these out by himself may not be denial it may simply be what I do; I cant stand anyone being around me when I’m getting hit, its enough taking this ride but putting those you love through the experience doesn’t sit well with me, I’ve seen the look of helplessness & despair on the faces of my wife & 2 adult children when they have seen me getting hit & can do nothing to help me.

Hope this helps a little

Cheers
Barry

Hi Kay,
Don't know if this helps or not.
With me it started eposodic and then went chronic (although managed with medication).
Now its stopped even though as i type the feelings are there hiding in the bushes so to speak.
I too prefer to grin and bare it and today found myself sitting alone waiting for it to happen even though in the end it didn''t.
In the end it's down to personality like everything we cope with throughout life.
I initially felt ashamed when my wife, son and daughter were running around not knowing what to do and maybe that has stuck with me.
Will it last forever? No it wont!!!
You'll find your distance of what you can and can't do and Tim will understand as couples do.
I'm sorry you're here but glad you've found us.
Colin.