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Topic: How long is your longest cycle ? (Read 749 times) |
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BB
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How long is your longest cycle ?
« on: Oct 2nd, 2006, 2:06am » |
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Hello everyone,
I believe that everyones cycle is different and even for the same person each cycle is different.
What is your longest cycle and is there any difference in how the hits are in the longer cycles compared to the shorter ones?
Thanks for your input.
Painfree wishes and hugs to all.
Annette
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| « Last Edit: Oct 2nd, 2006, 3:51am by BB » |
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George_J
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Re: How is your your longest cycle
« Reply #1 on: Oct 2nd, 2006, 2:18am » |
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Hi Annette,
As you know, I'm episodic. I used to cycle twice a year, spring and fall. Now that I'm older, my last three cycles have been three years apart.
The intensity and length of an individual cycle has not changed, however. They still last 6 to 8 weeks. I don't get hit as often within a cycle as most people--once a day or every couple of days, unless I make the foolish mistake of drinking alcohol--but an individual hit typically lasts two or more hours.
I think the longest cycle I've had lasted only about two and a half months. I haven't noticed any significant difference in the character of hits in longer or shorter cycles.
Best wishes,
George
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| « Last Edit: Oct 2nd, 2006, 2:20am by George_J » |
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BB
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Re: How is your your longest cycle
« Reply #2 on: Oct 2nd, 2006, 2:39am » |
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Thanks George for your input.
Its interesting that your cycles are getting further apart.
I read somewhere that CH stopped around 70 years of age or sometimes around that.
I wonder if its because the older persons blood vessels tend to be more hardened with fibrous tissues and/or cholesterol plagues that they no longer stretch/swell as much as when you are younger.
On the other board, I also read that a CH girl had a MRI scan during a hit and they found a swollen blood vessel which was big enough for them to initially thought that it could be a tumour of some sort.
So following this line, I am thinking that if somehow one can "harden" the blood vessels to stop them from swelling up during an attack so that it can not compress the trigeminal nerve then one basically can "cure" CH ?????
Currently in cardiology, doctors can insert a stent into a blood vessel in the heart to stop it from changing in size, I wonder if one can put a similar stent into the brain blood vessels that may work just as well.
At least one may achieve painless CH ?
What do you think people?
Annette
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TxBasslady
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Re: How is your your longest cycle
« Reply #3 on: Oct 2nd, 2006, 4:03am » |
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I'm episodic, but I don't have a cycle.
My hits are random. I may have 1 hit in 10 days or so, then I'll go 2 or 3 weeks with nothing. There have been times when I got hit 4-5 days straight...then go a while with nothing. Hope this makes sense.. 
My hits are relatively mild, maybe Kip 2 to 4. They also are short lived. I use nothing but 02, and within a couple minutes, the CH is gone.
I took Kudzu for 9 months...tapered off Dec 29th. It really changed my CH...for the better, and I'm still reaping the benefits.
Jean
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BB
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Re: How long is your longest cycle ?
« Reply #4 on: Oct 2nd, 2006, 4:07am » |
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Thanks Jean for your reply. 
Its interesting that a cycle can be totally random also.
Is there any difference between the hits or are they all the same ?
Painfree wishes to you , hope you wont get the next one for a loooooooong time.
Annette
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AussieBrian
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Re: How long is your longest cycle ?
« Reply #5 on: Oct 2nd, 2006, 8:03am » |
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Can't help a lot on this one as I've never had two cycles even remotely similar. Currently PF after 18 months on the trot but was fully three (perhaps four) individual cycles back to back.
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BB
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Re: How long is your longest cycle ?
« Reply #6 on: Oct 2nd, 2006, 8:50am » |
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Hi Brian
Good to see you back ! 
The scared little girl you extended a helping hand to 2 months ago has since found a family and is standing steadily on her own two feet, strong enough for her DH and her friends to lean on.
Thank you.
Hugs.
Annette
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Chonas
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Re: How long is your longest cycle ?
« Reply #7 on: Oct 2nd, 2006, 9:14am » |
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Annette, the longest cycle I've had lasted 5 months.
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LeLimey
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Re: How long is your longest cycle ?
« Reply #8 on: Oct 2nd, 2006, 9:28am » |
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Hi Annette
I've been chronic since day one (although I didn't know that until day 365 of course!) However within that I do have cycles, or high periods. Every five to six weeks I'll have a bad week where I'll get double or more my usual amount of hits and they are much harder to abort. I usually get 3 per day but this increases to up to about 8 for a week to ten days.
I'm currently using the RC seeds and I generally get 10-14 days PF time but I've noticed every time it comes back it coincides with the same "pattern" I had before.
Jasper, my son, has a cycle that lasts about six months. His first went from Dec to May, his second went from Nov to April and so far he had two hits in Sept but nothing since so I'm waiting on tenterhooks to see what happens as he SEEMS to go 5/6 months pain free each time. Its hard to tell based on him just coming into his 3rd cycle though.
I hope it helps
Helen
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Margi
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Re: How long is your longest cycle ?
« Reply #9 on: Oct 2nd, 2006, 10:09am » |
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Hi Annette - keep up the great research questions!
In his 20's, Mike cycled twice a year, 6 - 8 weeks each time. In his 30's, yearly, cycle lasting 8 - 10 weeks. It was during this time that he first tried Imitrex pills but they didn't do much for them, so he remained med-free (and undiagnosed) until we found this site in 1998. At that point, he tried (welder's) oxygen for the first time, it was a Godsend for him. He also tried Doc Jerry's water treatment and actually aborted a cycle with it.
At about age 45, he tried psilocybin and he did get his first 2.5 year remission, doing maintenance doses during that period. Then, a cycle hit him that psilocybin wouldn't end for him. After dosing 4 times over a five week period, he finally went to a neuro who put him on pred, verap and lithium. That cycle lasted 5 months and he became "silent chronic" at that point (which is now about 4 years ago) - in that he gets "cluster eyes" at 4:30 every day for 45 minutes, no pain, but definitely something neurological going on.
1 year remission after that, then November 21 commenced a 6 month cycle, again medicating with Imitrex, oxygen, and verapamil.
Again, a cycle started on November 21 and this time we tried the lithium pulsing method which gave him a virtually pain free 4 months, but he could tell he was still in cycle because of the regularity of shadows - I guess the lithium pulsing did keep it at bay. Oxygen was enough to blow away the shadows. Then, the beast switched sides on him and he went another 5 months in deep cycle, for his longest ever total of 9 months. The lithium stopped worked, so he once again introduced imitrex and, at the 8 month mark, verapamil. This was last year, cycle ending in August. Lithium left some nasty residual effects and it took him almost 3 months to regulate after tapering off it.
We're awaiting the fateful November 21 date now and I do see some increase "silent" activity, so he probably will hold true to form. We will be trying the seeds to see if we can ward it off this year - but no other meds (except for O2 delivered via Clustermasx). Perhaps Zomig spray if the seeds don't work, but never again Imitrex.
As to difference in attacks, when he uses imitrex, the hits definitely come more frequently and more intense. We've given all of our imitrex away. We were out camping last summer without oxygen and Mike had 10 attacks in 24 hours, it was brutal.  We had to come home so he could get off the damned imitrex and back onto the O2.
in summary? Meds have definitely prolonged cycles for him and age has prolonged remissions.
That's an interesting theory you have about the arteries hardening up and the resulting slowing of vasodilation, makes a lot of sense! So, are you saying I should start feeding him nothing but fatty foods, and encourage him to smoke and drink more? 
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Charlotte
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Re: How long is your longest cycle ?
« Reply #10 on: Oct 2nd, 2006, 10:30am » |
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I'm not sure, but I had 4 days off in March 2006 (after exactly every 2 hours) and 4 days off November 2005 (after every 3 hours). These were not pf days, but pf from what I thought was cluster. Apparently it morphed. Now is somewhat irregular, but close together. Am doing well at the moment.
Count down to follow up w/neuro on Thursday. Wonder what he will say, this time.
Charlotte
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| « Last Edit: Oct 3rd, 2006, 3:34pm by Charlotte » |
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BB
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Re: How long is your longest cycle ?
« Reply #11 on: Oct 2nd, 2006, 10:40am » |
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Chonas,
Thanks for your reply. Hope the cycle wont ever be that long again ! PF wishes to you
Helen,
Thanks for your information.
Its amazing that RC seeds could give you PF days yet the hits would still come through around the same time as expected. That circadian clock in the hypothalamus must be really powerful! If somehow we could just take its battery off or reset the whole thing.
Its also amazing and sad that Jasper has CH at such a young age. However he has the best mom in the world to help him through though. Please give him a hug and a cuddle for me , thanks.
Have you ever thought about doing a DNA mapping to see if they can find any genetic pattern that is unique to you and Jasper to see if a gene for CH can be identified? ( Just wondering out loud here to myself ).
Margi,
That is an impressive description of your DH's CH history. Only dedicated supporters like yourself would know it like that! Hat off to you.
Regarding the possible diet plan, I guess if I walk around promoting it I would first get very rich as many people would have loved me for it  but then I would get sued off my pants once they start to drop dead of heart diseases and strokes before their CH gets better  ! LOL !
I would rather root for something like a stent as in cardiology, much safer although less enjoyable!
Thanks everyone .
Annette
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rbmb
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Re: How long is your longest cycle ?
« Reply #12 on: Oct 2nd, 2006, 12:01pm » |
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My cycles used to last 6 to 8 weeks and the periods in between were something like 3 or 4 months. The last cycle I had lasted almost 6 months, but the PF period was about 8 months(for a while there, I thought maybe they had gone away, but no). I'm in a cycle now that started about about 5 weeks ago.....who knows how long it will last.
Rich
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roy21302
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Re: How long is your longest cycle ?
« Reply #13 on: Oct 2nd, 2006, 12:21pm » |
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Annette,
I started Ch about 30 years ago, for first 15 years I was episodic, used to get hit 2 -3 times a years. Then went Chronic, and since then I have had only short periods of time painfree, never more than a couple of weeks. Then it builds up again 1 or 2, then 3 or 4 a week, then it becomes per day and so on. Thats how the cycle runs. Cheers Roy
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Re: How long is your longest cycle ?
« Reply #14 on: Oct 2nd, 2006, 12:43pm » |
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on Oct 2nd, 2006, 10:40am, BB wrote:
Have you ever thought about doing a DNA mapping to see if they can find any genetic pattern that is unique to you and Jasper to see if a gene for CH can be identified? ( Just wondering out loud here to myself ).
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Annette there is a study into CH genetics going on here in the UK at Leicester university under a Professor Trembath. Jasper and I have both given blood samples for it. If you are interested I can give you all his details if you'd like to contact him at all?
Helen
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Re: How long is your longest cycle ?
« Reply #15 on: Oct 2nd, 2006, 12:45pm » |
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10 months
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LadyC
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Re: How long is your longest cycle ?
« Reply #16 on: Oct 2nd, 2006, 1:16pm » |
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Hi Annette,
When my clusters started 25 years ago I was chronic for 5 years. After that I would get one cycle every 12-18 months that would last for about 8-12 weeks. The longest remission I've had is 6 years. That ended in February and I am hopefully (1 week pain free so far) just ending a 30 week cycle. Here's hoping for another 6 year remission!!
Carol
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MJ
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Re: How long is your longest cycle ?
« Reply #17 on: Oct 3rd, 2006, 1:51am » |
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I have had CH for 31 years now. I'm still a youngun.
For the first 10 years every 13 months they would start. This was measured in the times between starts not end of one to beginning of new cycle. In other words if a cycle started in september and lasted 5 months the next one would still begin in october 13 months later.
The next 20 years have been a different story. Random. They have started whenever they thought they could try and whup me again. They have come close.
My cycles tend to vary in length alone.
They never vary much in the frequency or duration of hits, 8-12 hits per 24 hrs with a duration usually 1.5 hrs but can be 1-2 hrs. The 2 hr ones makes it a 24 hr cluster. Lots of fun when they hit back to back.
The intensity of the hits also never varies allways at the upper end of the scales.
My cycles do not fade away they just quit and dissapeared in the past.
My longest cycles have lasted to 3 years. Only rarely would I get allmost a day off.
The shortest ever untill this last one was 4 months.
The last cycle (wich I am possibly still in) was broken with an RC seed dosing regimen at 3 months and it did fade away.. since then I have dosed infrequently as the CH feelings return roughly every month or 2.
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MJ
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Leemo
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Re: How long is your longest cycle ?
« Reply #18 on: Oct 3rd, 2006, 2:13am » |
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My longest cycle has been over 4 months of at least 1 headache per night. It seems the further into the cycle, the more frequent and intense they get. To make things worse, my employer dropped our insurance so I can't get o2 or Imitrex right now. I can't afford to buy it on my own since 2 shots of Imitrex would cost me $680. If there is anyone out there near the Twin Cities, who could help me with either O2 or Imitrex? I would gladly pay your co-pay if you could help me out. I'm really desperate at this point. I applied for insurance through the state but was told it will take a while to come through. My email is leemo88@comcast.net .
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nani
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Re: How long is your longest cycle ?
« Reply #19 on: Oct 3rd, 2006, 8:52am » |
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Hello Leemo. Welcome. I'm sure that you realize what you're asking is illegal.
There are a few treatments that are not expensive and do not require prescriptions. Have a look at the kudzu thread at the top of the Medications board. Cheap, and OTC.
George mentioned welders oxygen. That's what I use.
Do you get hit during the night? Melatonin is a great help if you do.
Need a quick abort (that's cheaper than Imitrex?) Red Bull helps many.
Read all you can, and you'll find some help.
pain free wishes, nani
BTW, Annette, my longest cycle to date was 5 1/2 years.
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BigCoffinHunter
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Re: How long is your longest cycle ?
« Reply #20 on: Oct 3rd, 2006, 10:10am » |
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I've had 2 cycles so far...each time 2 months to the day. I can't believe our biological clocks can be so precise.
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Bob P
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Re: How long is your longest cycle ?
« Reply #21 on: Oct 3rd, 2006, 10:13am » |
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I've been episodic for 36 years.
1st 20 years I would have a 4 to 6 week long episode every 8 or 9 months.
Last 16 years the episodes keep getting farther apart but the length of the episode is unreliable. Last remission was 3 years 3 months long. Last episode was 5 months long.
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| « Last Edit: Oct 3rd, 2006, 10:13am by Bob P » |
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Melissa
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Re: How long is your longest cycle ?
« Reply #22 on: Oct 3rd, 2006, 10:40am » |
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40 days. They only go maybe 4-5 days shorter, but they've never been over 40 days. I never stayed on preventative RX meds long enough to lengthen a cycle, and when I took trex, it just made successional hits intense.
Taking natural preventatives & using O2 as an abortive are the best for me.
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E-Double
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Re: How long is your longest cycle ?
« Reply #23 on: Oct 3rd, 2006, 3:22pm » |
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on Oct 2nd, 2006, 2:06am, BB wrote:Hello everyone,
I believe that everyones cycle is different and even for the same person each cycle is different.
What is your longest cycle and is there any difference in how the hits are in the longer cycles compared to the shorter ones?
Thanks for your input.
Painfree wishes and hugs to all.
Annette |
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From 1994-2004 was episodic spring and fall about 1 month long only at night.
2004 came and never left. It is now2 yrs and 5 months and have only had a couple of short breaks (almost 2 weeks on two sepreate occasions)
The only difference in attacks seem to be shorter since coming off meds.go figure.
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stpp77
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Re: How long is your longest cycle ?
« Reply #24 on: Oct 3rd, 2006, 4:28pm » |
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Hi, my longest cycle has been 7 weeks (short by many comparisons), however they do seem to be coming closer together--instead of three cylces a year up to four cycles. Each cycle seems to get worse on the KIP scale and number of hits. They also seem to effect me more and more physically then they used to--memory, balance, etc. (probably due to the higher levels of pain).
Hope this helps.
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