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Topic: Episodics...Length of your cycles (Read 679 times) |
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GlendaB
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Episodics...Length of your cycles
« on: Jul 11th, 2005, 6:02pm » |
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Could everyone give me an idea of how long your cycles average.
Thanks!
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| « Last Edit: Jul 11th, 2005, 6:02pm by GlendaB » |
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millie the episodic
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Re: Episodics...Length of your cycles
« Reply #1 on: Jul 11th, 2005, 6:08pm » |
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Usually 3 months, but mine happen twice a year. This time they have changed and I have been in a cycle since Feb, but hopefully I will be soon PF. I guess everyone is a little different. 
I've been doing this for about 12 -13 years and everytime it's a little different. Good Luck
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Bob P
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Re: Episodics...Length of your cycles
« Reply #2 on: Jul 11th, 2005, 7:19pm » |
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Starting week 18, but this is a new record for me.
For the first 20 years, 1 cycle every 8-10 months that lasted 4-6 weeks.
For the last 14 years the remissions get longer, last one was 3 years 3 months long but the cycles also get longer.
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| « Last Edit: Jul 11th, 2005, 7:19pm by Bob P » |
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burnt-toast
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Re: Episodics...Length of your cycles
« Reply #3 on: Jul 11th, 2005, 7:38pm » |
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From reading the numerous posts that touch upon this subject - the length of each individual's episodic cycle can vary greatly - the number of cycles each individual experiences over each 12 mos. period varies greatly as well.
I am interested in seeing the range of answers that are provided.
As for me, I've obviously missed the the lessons covering how to deal with the unknowns of all the ON - OFF - Pain Free stuff. I think I need to take a remedial course in remissions.
Tom
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Jonny
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Re: Episodics...Length of your cycles
« Reply #4 on: Jul 11th, 2005, 7:39pm » |
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30 years....oops, I just saw it said episodic.....sorry 
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wip5150
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Re: Episodics...Length of your cycles
« Reply #5 on: Jul 11th, 2005, 7:53pm » |
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I've been episodic for 16 years. Here's the breakdown:
* Years 1-7 - Annual Cycle would last approx. eight weeks
* Years 8-12 - Annual Cycle would last approx. six weeks, but more painful HA's
* Years 13-15 - Cycle would come every 18 months for 4-6 weeks but the headaches continued to worsen.
* Current cycle - beginning week nine and have been peaking for 8 days. Not sure what's going on this time. Just started taking Verapamil and I'm hoping that will settle my VERY tired head down.
Hope that helps. 
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E-Double
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Re: Episodics...Length of your cycles
« Reply #6 on: Jul 11th, 2005, 8:07pm » |
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9 yrs....2 x per yr about 4-6 weeks only at night
This cycle....18.5 months day and night......go figure
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eyes_afire
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Re: Episodics...Length of your cycles
« Reply #7 on: Jul 11th, 2005, 8:09pm » |
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Mine used to be 6 months long with a 6 month break between. The last 2 cycles were 13 months and 18 months long with about a 5 month break between. My last cycle 'sorta ended' in late October 2004... but I still get shadows and several 'renegade' hits per month. So I guess I'm sometimes chronic and sometimes episodic? Or maybe by the new diagnostic criteria I'm still chronic? Don't know.
I don't understand any of it.
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Kris_in_SJ
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Re: Episodics...Length of your cycles
« Reply #8 on: Jul 11th, 2005, 8:22pm » |
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Cycles every 3-4 years - usually in spring/early summer. The first one (which went undiagnosed) lasted 12 weeks. The second one (diagnosed, but had to wait for neuro appt.) lasted about 10 weeks - don't know if it was the Verapamil or if I was just winding down.
Last one lasted 6 weeks active - started high dose Verapamil and Prednisone early on., which I believe helped shorten the pain cycle. Took alot less Trex this last time, anyway. Didn't start weaning off the Verap until well after 12 weeks had passed. Still took 2-3 months to get off the Verap without having shadows. Slow....slow...slow. Still hoping for a new wonder drug or a miracle before my 2-year reprieve is over.
Kris
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marlinsfan
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Re: Episodics...Length of your cycles
« Reply #9 on: Jul 11th, 2005, 8:28pm » |
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Episodic 23 years. Didn't track until this year because I was mis-diagnosed.
This cycle just completed 10 weeks. Cycle winding down, as I've had only shadows the last 7 days. No full-blown headaches during this time.
Last cycle was 3 years ago. Before that, I was cycling yearly.
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GlendaB
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Re: Episodics...Length of your cycles
« Reply #10 on: Jul 11th, 2005, 10:26pm » |
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I've noticed that this cycle has been more intense and the beast has been switching sides on me, never know which side it is going to hit next. I've had one other cycle that the beast kept switching sides on me.
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Pain-free days and nights to all!
With Lots of Love,
Glenda
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Topical
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Re: Episodics...Length of your cycles
« Reply #11 on: Jul 12th, 2005, 3:22am » |
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Usually 2-3 months.
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Sunil Gururaj
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Re: Episodics...Length of your cycles
« Reply #12 on: Jul 12th, 2005, 4:59am » |
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Episodic for 15 years (diagnosed only last year).
3 weeks per cycle (current cycle 4 weeks)
1 cycle per 1.5 years (sometimes 1 year, sometimes 2)
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don
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Re: Episodics...Length of your cycles
« Reply #13 on: Jul 12th, 2005, 7:22am » |
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3-5 months
2-3 times per year.
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Margi
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Re: Episodics...Length of your cycles
« Reply #14 on: Jul 12th, 2005, 9:43am » |
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My husband has been episodic for about 28 years now. In the early years, a 6 - 8 week cycle, every six months. Then, mid-thirties, a 3 month cycle every nine months. In his forties it's been longer remissions (2 years, 18 months, 20 months) but longer cycles (4, 5, 6 months). However, his last remission was almost 1 year to the day and this present cycle is nearing the SEVEN month mark. It started December 22 at our company Christmas party. No warning - just shot me that deer in the headlights look and asked me if I had any imitrex in my purse.  No rhyme or reason.
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jcmquix
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Re: Episodics...Length of your cycles
« Reply #15 on: Jul 12th, 2005, 9:57am » |
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Well as far as when they started, I can remember back to my teens, getting them. Up until about 5yrs ago, when I was DX I never realized it really went in a cycle, but I know now that it did.
Mine always come in December to Feruary & June to August.
They last about 3 months, I start out getting 1-2 HA's usually at night, for about 3 to 4 weeks (These are about a 5 or 6 on the KIP scale). Then I go to 4-5 a day, for about 4-5 weeks (These will be a 6-over10 on the KIP scale), the ones at night are really bad. I usually get all my hits at night @ 11pm, 1am, 3am & 5am if I sleep that late. The only thing I found to Kill the BEAST at night is TREX inj (as little as 2mg per HA will do the trick).
8yrs ago I had a Dentist tell me that he could cure my HA's, it was my Wisdom Teeth... Pulled them all at once, the Dentist said it was the way to go... (Wrong Answer)
Still Got the CH's.
Then I went back to the Dentist (when unknowing to me, my cycle started again) and the Dentist told me that I had severe TMJ (Jaw) problems. So I got Bi-Laterial TMJ surgery, was on pain meds for a few months, pain went away (I was out of cycle). No more CH's.
Anyways the following year, It was really bad, I went to the walk-in clinic for a KIP 10 HA, well they were so scared because I was BEGGING them to just kill me, I was taken to the ER. My BP was through the roof, I was wet with sweat, My temp was at 104, I was shaking and having muscle spasms. They gave me a shot of TREX and in 10 minutes I was almost back to normal, still really sore everywhere. Well the ER Dr said that I had a severe Migrane.
Well he refered me to a local Dr, and I went and seen the Dr, while there I had another episode. He ck's all my vitials, gave me another shot of TREX, 10 minutes I was ok. Then He Told Me, you have Cluster Headaches.
He treated me for that cycle (Verapimil & TREX inj), when my next cycle hit, I went to see him again to find the he had moved out of Flaorida. I had only seen him 3 times and the Practice where he was no longer seen HA patients. So at that time I was out of work on Workman Comp, had no insurance and had to go to the Health Dept, I told the Dr I had been DX with CH, They Gave me 200 Verapimil & like 20 shots for the STAT pen. I made it through that time.
I was in I guess you would call it remission until this June 1st, that exact night I got 2 HA's (1am & 3am).
I went to a GP the first of June, he put me on Indocian (Wrong Spelling) for prevent, Ultrams & TREX pills as an abortive. Had no luck, went to Nero Dr on the second week of June.
Nero Dr, DX was CH. Put me on Depakota ER 250mg 3x a day for Prevent, and RELPAX as an Abortive.
Went to see Nero Dr, last week of June. I got to see the HA Dr that is also in the same office. She increased the Depakota ER 250 4x a day (1000mg), Gave me a script for O2 and the TREX in Vial's. Got the O2, works great for me during the Day, Can't use at night yet, need to practice. I have only gotton minor HA and some shadows during the day, since I started the Depakota ER.
I hope this cycle ends soon, and the BEAST goes on vacation for a few months. When that Bastard comes back, I'll be ready for him this time. Maybe I will get LUCKY and he will forget where I live.. ????
PFDAN's to ALL !!!
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pattik
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Re: Episodics...Length of your cycles
« Reply #16 on: Jul 12th, 2005, 10:26am » |
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One distinct hit a day (after midnight) with shadows often happening on and off through the day. Episodes last 4-6 weeks.
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KMT
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Re: Episodics...Length of your cycles
« Reply #17 on: Jul 12th, 2005, 11:58am » |
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Still am suppose to be episodic. 1 cycle was 4 mo. 3mo.PF then 8mo. and counting and your not chronic till a year so crossing the fingers...Kim 
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Sandy_C
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Re: Episodics...Length of your cycles
« Reply #18 on: Jul 12th, 2005, 12:17pm » |
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Think I might have just done this on other thread but here goes.
Typical - 8 weeks with 2 year interval between cycles., although I do get hits now and then during that interval. Not hard enough or long enough to count as a cycle.
After reading everyone else's posts - I guess I'm lucky. You all have my admiration and wishes for PFDAN.
Sandy
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vig
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Re: Episodics...Length of your cycles
« Reply #19 on: Jul 12th, 2005, 4:11pm » |
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I have 4 x 3 month cycles a year....
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BlueMeanie
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Re: Episodics...Length of your cycles
« Reply #20 on: Jul 12th, 2005, 7:18pm » |
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27 years episodic
8 weeks shortest cycle.
18 weeks longest cycle.
1st 15 years or so where 2 cycles a year. Now I've only been getting 1 cycle a year.
8 weeks shortest remission.
18 months longest remission. (which is happening right now). yeah !!!
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Chillrmn1
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Re: Episodics...Length of your cycles
« Reply #21 on: Jul 12th, 2005, 8:31pm » |
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28 years episodic.
1 - 27th year cycles would average 8 - 12 weeks with 12 - 14 month remission periods.
Last cycle lasted 8.5 months and ended 5/13/05. HBWR seeds ended this cycle for me.
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playmesomeblues
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Re: Episodics...Length of your cycles
« Reply #22 on: Jul 12th, 2005, 11:21pm » |
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Hi all,
For most of my adult life, my clusters were every 18 months and lasted 6-8 weeks. Longest remission was the most recent: 3 yrs. Now I'm already at six weeks, tried prednisone and am tapering, the cluster switched sides and seems to have started over. Reading the above posts, I see the switched sides isn't unique.
My dr. put me on 40 mgs of prednisone to start, what experiences do all of you have?
Thank God for O2 + imitrex!
Take good care of yourselves everybody.
Dave
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Linda416
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Re: Episodics...Length of your cycles
« Reply #23 on: Jul 15th, 2005, 3:36am » |
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For the first 15 years or so they would come once a year (spring) and last about 2 wks, then it changed to about 4-6 wks, still in the spring, for about 5 years, then to 8 wks for the last 5 years. 3 years ago they switched from spring to fall, but this year I'm attacked in the summer...so strange. I have no idea what's going to happen next...fall? spring? summer? who knows, lol
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C_Bass
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Re: Episodics...Length of your cycles
« Reply #24 on: Jul 15th, 2005, 9:21am » |
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I was born in 1958.
Had first cycle in 1987, couple of weeks and it was over.
Second one in 1991: one month and a half.
Third one in 1998: finally diagnosed as CH. On and off for almost one year. Doctors said I was becoming chronic.
Fourth one: started on June 8th this year. Look like it's in the peak now.
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