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        Cluster Headache Help and Support >> Cluster Headache Specific >> Chronics pain free?
        
(Message started by: MJ on Apr 8^th, 2006, 6:54pm)

Title: Chronics pain free?
Post by MJ on Apr 8^th, 2006, 6:54pm

Chronics past and present

I know chronic is 1 year with no more than 30 days pain free. When I had my short chronic stints (3 yrs) my CH never changed and never more than a day or 2 off.

The Question is, how often if at all do you ever get a day completely free of CH?

If pain free days how many?

Thanks MJ

Title: Re: Chronics pain free?
Post by CHTom on Apr 8^th, 2006, 8:37pm

Chronic since 1996 with a one-year break from 2001-2002, then chronic again since then with no more than a couple of pain free hours every now and then. I did have 5 pain free days after my DBS operation last year, but that was due to the trauma of the surgery.

Title: Re: Chronics pain free?
Post by burnt-toast on Apr 9^th, 2006, 6:58am

I'm a recently former chronic -a little over two months now and magically - mysteriously no real attacks although I've had a few good scares that never got off the ground.

While chronic, a day or three without an attack per week was a good week. For more than 3.5 years I averaged a little over 1.5 day per week without an attack.

Keep in mind this is an average - you have to consider the cycles within the cycle.

In my case:

It was not unusual for CH to not miss days between December and July.

It was not unusual to go PF free for three and sometimes four days between July and August, however this last July and August really sucked.

Frequency/severity would then ramp up September through November.

This year it didn't ramp back up in the fall/early winter and then dissappeared completely at the end of January.

These are my experiences, CH seems to manifest itself differently in everyone. Keep a good journal - it will help you better understand your condition, work more effectively with doctors and give you real insight into the effectiveness of medications and treatments.

Tom

Title: Re: Chronics pain free?
Post by kayarr on Apr 9^th, 2006, 7:36pm

Proxy answer:
(he's thinking about coming to the site though:)

Jeff has been chronic since 96' and he has had 5 days off in a row once in 5 years and once or twice a year he gets 1 day PF. Other than that a good day is only three in the day and two at night. The bad days are "headaches" every 20 minutes.

Title: Re: Chronics pain free?
Post by BarbaraD on Apr 10^th, 2006, 7:56am

I very seldom have a day without at least having shadows (4-5), but the high cycles come usually in winter and autum (sometimes in summer and sping). They just come and I never known when or why -- I think it has to do with the barometer - my theory.

PF to me is a day with only shadows... those I can handle with coffee or Red Bull - no drugs. After about an 8, I hit the cafergot.

Hugs BD

Title: Re: Chronics pain free?
Post by Charlotte on Apr 10^th, 2006, 2:13pm

I never really have a pf day. I have relatively pf days. I'm in a low cycle now and 3 times in the past 2 weeks I have been awakened because I was totally pf - it was like total silence, but it didn't last a day.

The end of a high cycle always feels like pf. Total is not necessary.

Also, isn't it odd how a 7 in a high cycle doesn't feel as bad as a 7 in a low cycle?

Charlotte

Title: Re: Chronics pain free?
Post by Roxy on Apr 10^th, 2006, 3:26pm

Chronic for five years now. Never have PF days. The few days I have had PF were due to the fine minds at clusterbusters and my orthopedic surgeon.

Even taking preventative meds....they would only knock me down to 3-4 ch's a day. Normal is 8-12 a day. But, I never, ever go a day without at least 2-3 hits.

Long acting triptans will give me PF time, but I don't have enough of them to use very often.

I just consider 3-4 a day as PF...... ;;D.

Title: Re: Chronics pain free?
Post by E-Double on Apr 10^th, 2006, 9:26pm

According to the old criteria my cycle wopuld have been broken a few times, however I would have had the equivalent of 7-8 cycles per year.
I have recently had a near 2 week reprieve yet it returns and always seems to over the past 2 years.
I have PF days and I have days with a lot of activity.
High cycles, low cycles, motor cycles ;)

Title: Re: Chronics pain free?
Post by alchemy on Apr 11^th, 2006, 11:59am

two years now without a pf day. still hoping it will break. jim

Title: Re: Chronics pain free?
Post by mynm156 on Apr 16^th, 2006, 2:00am

I dont thin that I ever have a TOTALY PF day I might go one or two days without a CH but I am usually occupied by shadows on those days. BUT I'LL TAKE EM!!! I'LL Take em it when they dont stop and I am in pain basically ALL THE TIME that sucks!

Good Vibes

Your Brother in Pain

MYNM156

Title: Re: Chronics pain free?
Post by gore2424 on Apr 16^th, 2006, 9:35am

last year 2005 total of only 3 pain free days almost always at 3-4 pain level and sometimes worse so far this year 0 days pain free "FµÅßÇàöG" clusters Terry

Title: Re: Chronics pain free?
Post by MJ on Apr 20^th, 2006, 1:35am

You all are an inspiration.

Thanks for the input.