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        New Message Board Archives >> 2007 General Board Posts >> We need a new survey, ch'ers
        
(Message started by: DonnaHar on Jan 7th, 2007, 7:36am)
Title: We need a new survey, ch'ers
Post by DonnaHar on Jan 7th, 2007, 7:36am
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....

Do you have fewer cycles?


Do you have fewer attacks per cycle?


Do you have less intense attacks?


How long did you have ch before they started to slow down or become less intense?


At what age?


Any other input?
Title: Re: We need a new survey, ch'ers
Post by georgej on Jan 7th, 2007, 8:54am

on 01/07/07 at 07:36:15, DonnaHar wrote:
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....

Do you have fewer cycles?


Do you have fewer attacks per cycle?


Do you have less intense attacks?


How long did you have ch before they started to slow down or become less intense?


At what age?


Any other input?


1. Yes, I have fewer cycles.  My last three cycles have been three years apart.

2.  No, the number of attacks per cycle seem to be about the same, and the cycle typically lasts just as long as it ever did.

3.  The intensity is about the same.  I believe I can handle an attack better these days, though, than when I first got them--experience counts.

4. & 5.  I used to cycle twice a year, spring and fall.  I did so for about twenty years.  Then the cycles went to one a year for about ten years.  For the past nine years, they've been three years apart--so when did this start?  When I first went three years, or at the end of the last cycle with a year between?  I'll assume the former, so--44 years of age.

Best,

George
Title: Re: We need a new survey, ch'ers
Post by chewy on Jan 7th, 2007, 11:35am
Out of cycle when I was 45. That was 4 years ago.

Still get an occasional hit and/or shadow.
Title: Re: We need a new survey, ch'ers
Post by pubgirl on Jan 7th, 2007, 11:45am

on 01/07/07 at 07:36:15, DonnaHar wrote:
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....

Do you have fewer cycles?


Do you have fewer attacks per cycle?


Do you have less intense attacks?


How long did you have ch before they started to slow down or become less intense?


At what age?


Any other input?


Hi Donna

I hate to tempt fate but it is true of me:

I have missed two seasonal cycles now (I was a twice a year seasonal ECH'er).

My last cycle was much shorter with fewer attacks, but most of the attacks more vicious perhaps as the cycle didn't build and wane, it hit in hard straight away but was shorter-lived.

I am 44 but was only dianosed with CH a few years ago (I forget when now but less than 5 years ago)


If it is relevant and helps, I use almost exclusively 02 with Imigran and Frova on occasions.

I have NEVER used  prevents in any form unless you count using Frova as a short term block.

Wendy

P.S. I would personally find it interesting to know what people were using if their condition has improved, and the converse, what they are using if it has worsened. Might this be useful info?
Title: Re: We need a new survey, ch'ers
Post by JDH on Jan 7th, 2007, 12:26pm

on 01/07/07 at 11:35:33, chewy wrote:
Out of cycle when I was 45. That was 4 years ago.

Still get an occasional hit and/or shadow.


Wow, very similar.
Next month will be 4 years since my last cycle ended and I was 45 at the time.

Jim
Title: Re: We need a new survey, ch'ers
Post by BlueMeanie on Jan 7th, 2007, 12:54pm
Age 22-29 (two cycles per year)
Age 30-38 (one cycle per year)
Age 39-46 (18 months PF between cycles)
Current 3 years PF

Definately get less and less as I get older.

The actual cycles have always been the same. Just as intense, just as many hits. Some longer, some shorter in duration. (average 12 weeks)

As like the others, still get shadows a few days a month.
Title: Re: We need a new survey, ch'ers
Post by brewcrew on Jan 7th, 2007, 1:06pm

on 01/07/07 at 11:35:33, chewy wrote:
Out of cycle when I was 45. That was 4 years ago.

Funny - you don't look a day over 67.
Title: Re: We need a new survey, ch'ers
Post by Shedz on Jan 7th, 2007, 2:20pm
I'm in mid cycle at the moment but the hits have not been as frequent or as intense as they've been in previous years, I would'nt like to hazard a guess as to why, I put it down to CH just being an unpredictable bastard [smiley=laugh.gif].
Title: Re: We need a new survey, ch'ers
Post by TonyG1 on Jan 7th, 2007, 2:30pm

on 01/07/07 at 07:36:15, DonnaHar wrote:
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....

Do you have fewer cycles?

Do you have fewer attacks per cycle?

Do you have less intense attacks?

How long did you have ch before they started to slow down or become less intense?

At what age?

Any other input?


Cycles are consistent, every two years for 20+ years.
Attacks are fewer based on how quickly I get on verap.
With this current cycle, less intense attacks.
This is the first cycle where the attacks have been less intense and less frequent.

Age = 41
Title: Re: We need a new survey, ch'ers
Post by FrankW on Jan 7th, 2007, 4:31pm
Same as the above!

Fewer cycles - used to be two per year - two years since last real cycle - the last twelve years just one cycle when they did hit - maybe every three years.

Used to be two hits per day for about six weeks - three hours each - set your clock by them. Last few years mostly one per day - same six weeks - same time in the evening - early AM hit only occasional and shorter.

Similar intensity - little easier to handle now - experience helps as George says.

Eased off age mid 40's  - can't remember the time before 8 years old so 37 years.

58 now

Same triggers in cycle - alcohol and perfume. Didn't notice till you asked - but even when I don't get hit - I spend the same "cycle" time each year actually feeling uncomfortable and a little depressed.


There you go Charlie - guess it's not the Swedish food - just fewer Swedish girls wear perfume. Seems it helps also passing that magic age of 45.

Frank

Bugger it! - I just noticed I have a cycle this year to look forward to - guess I'll have to hang around for a while yet.
Title: Re: We need a new survey, ch'ers
Post by Charlie on Jan 7th, 2007, 5:49pm
Out of cycle since I was 45 too. God that's a long but happy PF time.

Mine lasted from age of 23 to 45 and they would always hit the same way. I never noticed a variation in intensity. They would become less frequent as the cycle was ending.

Charlie
Title: Re: We need a new survey, ch'ers
Post by Callico_Kid on Jan 7th, 2007, 6:11pm
Do I have fewer cycles now?  After 26 years I went chronic at age 48, so I guess it has just been one cycle since, :'(

Intensity is probably a little stronger over the last five years, but I have learned to handle it better since finding this board.  The intensities do tend to fluctuate though, with some milder ones mixed in.

Jerry
Title: Re: We need a new survey, ch'ers
Post by thomas on Jan 8th, 2007, 9:28am

on 01/07/07 at 07:36:15, DonnaHar wrote:
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....

Do you have fewer cycles?
No.


Do you have fewer attacks per cycle?
Yes.

Do you have less intense attacks?
Yes.

How long did you have ch before they started to slow down or become less intense?
Eleven years

At what age?
Thirty two.

Any other input?
My decrease in length of cycles and severity of hits is directly related to cutting down on the use of triptans, and using melatonin.
Title: Re: We need a new survey, ch'ers
Post by Bob P on Jan 8th, 2007, 12:26pm

on 01/07/07 at 07:36:15, DonnaHar wrote:
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....

Do you have fewer cycles?Yes


Do you have fewer attacks per cycle?No


Do you have less intense attacks?No


How long did you have ch before they started to slow down or become less intense? 20 years


At what age?40


Any other input?Cycles are less frequent but are longer in duration when the do come
Title: Re: We need a new survey, ch'ers
Post by BarbaraD on Jan 8th, 2007, 6:09pm
I've been in cycle since '97.... high and low -- it's around daily.
Title: Re: We need a new survey, ch'ers
Post by BobG on Jan 8th, 2007, 7:15pm

on 01/07/07 at 07:36:15, DonnaHar wrote:
Over the past several years, I've noticed that some of the old timers here are reporting that they are having fewer attacks and fewer cycles.....
Must start by saying this:
I haven't had a 'true-head banger-cycle for about 7 years. But, I do have yearly cycles of low KIP scale cycles(shadows).

Do you have fewer cycles? No


Do you have fewer attacks per cycle? Yes


Do you have less intense attacks? Yes


How long did you have ch before they started to slow down or become less intense? 25 years


At what age? 52


Any other input? Nope

Title: Re: We need a new survey, ch'ers
Post by Grandma_Sweet_Boy on Jan 8th, 2007, 7:30pm

on 01/07/07 at 07:36:15, DonnaHar wrote:
Do you have fewer cycles?Yes.  My last cycle was Feb. 2004 about a month before I found this place.  It carried on until the end of May and so far I've been PF.  Perhaps you guys and this place are the magic charm.  The reality is that I seemed to be on a two year schedule for about 4 years and now I've been nearly 3 years to I don't know what to think


Do you have fewer attacks per cycle?Not really


Do you have less intense attacks?No


How long did you have ch before they started to slow down or become less intense? about 40 years


At what age?60'ish

Any other input? I wish we could all be PF and I agree with Thomas - fewer meds seemed to actually help
Title: Re: We need a new survey, ch'ers
Post by georgej on Jan 9th, 2007, 1:12am

on 01/07/07 at 11:45:39, pubgirl wrote:
P.S. I would personally find it interesting to know what people were using if their condition has improved, and the converse, what they are using if it has worsened. Might this be useful info?


I haven't medicated with prescription meds since the mid-1970's.  Since the late 1990's, I've used melatonin, and magnesium and calcium supplements.  I haven't used oxygen, but intend to try it during the next cycle.

Lots of years in there using nothing at all.  The prescription meds I used during the sixties and early seventies seemed to increase the number and intensity of hits--(Sansert, caffergot, and a variety of pain medications).  I gave up on them, electing instead to grapple with CH on my own.  I don't regret that decision, but your mileage may vary.

Best wishes,

George
Title: Re: We need a new survey, ch'ers
Post by Kevin_M on Jan 9th, 2007, 10:26am

on 01/08/07 at 18:09:30, BarbaraD wrote:
I've been in cycle since '97.... high and low -- it's around daily.


I'm camped close by Barb's tent.  No benefits yet from AARP.


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