Author |
Topic: We need a new survey, ch'ers (Read 560 times) |
|
DonnaHar
Guest
|
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?
|
|
 IP Logged |
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender: 
Posts: 4222
|
 |
Re: We need a new survey, ch'ers
« Reply #1 on: Jan 7th, 2007, 8:54am » |
 Quote  Modify
|
on Jan 7th, 2007, 7:36am, 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
|
|
IP Logged |
Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
|
|
|
chewy
Guest
|
|
Re: We need a new survey, ch'ers
« Reply #2 on: Jan 7th, 2007, 11:35am » |
Quote Modify
 Remove
|
Out of cycle when I was 45. That was 4 years ago.
Still get an occasional hit and/or shadow.
|
|
IP Logged |
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender: 
Posts: 396
|
|
Re: We need a new survey, ch'ers
« Reply #3 on: Jan 7th, 2007, 11:45am » |
Quote Modify
|
on Jan 7th, 2007, 7:36am, 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?
|
| « Last Edit: Jan 7th, 2007, 11:49am by pubgirl » |
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
JDH
CH.com Alumnus
New Board Hall of Famer
We will get by, We will survive!
Gender:
Posts: 2453
|
|
Re: We need a new survey, ch'ers
« Reply #4 on: Jan 7th, 2007, 12:26pm » |
Quote Modify
|
on Jan 7th, 2007, 11:35am, 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
|
|
IP Logged |
9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
|
|
|
BlueMeanie
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1178
|
|
Re: We need a new survey, ch'ers
« Reply #5 on: Jan 7th, 2007, 12:54pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: We need a new survey, ch'ers
« Reply #6 on: Jan 7th, 2007, 1:06pm » |
Quote Modify
|
on Jan 7th, 2007, 11:35am, chewy wrote:| Out of cycle when I was 45. That was 4 years ago. |
|
Funny - you don't look a day over 67.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
Shedz
CH.com Alumnus
New Board Hall of Famer
OUCH UK MEMBER
Gender:
Posts: 517
|
|
Re: We need a new survey, ch'ers
« Reply #7 on: Jan 7th, 2007, 2:20pm » |
Quote Modify
|
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  .
|
|
IP Logged |
I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
|
|
|
TonyG1
Guest
|
|
Re: We need a new survey, ch'ers
« Reply #8 on: Jan 7th, 2007, 2:30pm » |
Quote Modify
Remove
|
on Jan 7th, 2007, 7:36am, 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
|
|
IP Logged |
|
|
|
FrankW
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 31
|
|
Re: We need a new survey, ch'ers
« Reply #9 on: Jan 7th, 2007, 4:31pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
   
Gender:
Posts: 14968
|
|
Re: We need a new survey, ch'ers
« Reply #10 on: Jan 7th, 2007, 5:49pm » |
Quote Modify
|
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
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Callico
New Board Hall of Famer
Proud Dad of a US Marine!
Gender:
Posts: 1395
|
|
Re: We need a new survey, ch'ers
« Reply #11 on: Jan 7th, 2007, 6:11pm » |
Quote Modify
|
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
|
|
IP Logged |
"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
|
|
|
thomas
CH.com Alumnus
New Board Hall of Famer
"Hit like a phillips head into my brain."
Gender:
Posts: 3281
|
|
Re: We need a new survey, ch'ers
« Reply #12 on: Jan 8th, 2007, 9:28am » |
Quote Modify
|
on Jan 7th, 2007, 7:36am, 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. |
|
|
|
IP Logged |
Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: We need a new survey, ch'ers
« Reply #13 on: Jan 8th, 2007, 12:26pm » |
Quote Modify
|
on Jan 7th, 2007, 7:36am, 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 |
|
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: We need a new survey, ch'ers
« Reply #14 on: Jan 8th, 2007, 6:09pm » |
Quote Modify
|
I've been in cycle since '97.... high and low -- it's around daily.
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: We need a new survey, ch'ers
« Reply #15 on: Jan 8th, 2007, 7:15pm » |
Quote Modify
|
on Jan 7th, 2007, 7:36am, 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 |
|
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Grandma_Sweet_Boy
CH.com Alumnus
New Board Hall of Famer
What Goes Around Comes Around!
Gender:
Posts: 3267
|
|
Re: We need a new survey, ch'ers
« Reply #16 on: Jan 8th, 2007, 7:30pm » |
Quote Modify
|
on Jan 7th, 2007, 7:36am, 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 |
|
|
|
IP Logged |
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender:
Posts: 4222
|
|
Re: We need a new survey, ch'ers
« Reply #17 on: Jan 9th, 2007, 1:12am » |
Quote Modify
|
on Jan 7th, 2007, 11:45am, 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
|
| « Last Edit: Jan 9th, 2007, 1:15am by George_J » |
IP Logged |
Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
|
|
|
Kevin_M
CH.com Alumnus
New Board Hall of Famer
withered branches grow green again.
Gender:
Posts: 6184
|
|
Re: We need a new survey, ch'ers
« Reply #18 on: Jan 9th, 2007, 10:26am » |
Quote Modify
|
on Jan 8th, 2007, 6:09pm, 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.
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss