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Topic: Cycles???? (Read 458 times) |
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adacie
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I have had clusters for about 5 years or so now. The first two years, I would just get three to four CH over the course of the summer. No big deal. The third year got a little worse and last year, they came non-stop from April through September.
This year has been kind of sporatic again, but now, I have been getting hit every night for the past week. This is weird for me because I normally only get em in the summer months.
Question: Do you all get fairly regular cycles? Or is it normal to just get them whenever? If I knew that I was always going to get them in certain months for so long, I think I could deal with it. It's the not knowing and waiting that kinda sucks.
Thanks!
Stacey
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Kevin_M
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Re: Cycles????
« Reply #1 on: Oct 5th, 2005, 10:38pm » |
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on Oct 5th, 2005, 10:04pm, adacie wrote:| Question: Do you all get fairly regular cycles? Or is it normal to just get them whenever? |
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I've started cycles in every month of the year, with many different pf durations (1-12 months) between each.
Quote:| This year has been kind of sporatic again, but now, I have been getting hit every night for the past week |
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What has your doctor said and how has he/she helped you manage?
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| « Last Edit: Oct 5th, 2005, 10:55pm by Kevin_M » |
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Sandy_C
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Re: Cycles????
« Reply #2 on: Oct 6th, 2005, 7:12am » |
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My cycles have started in July, October, and February so far. Have lasted usually 8 - 12 weeks, with almost 2 year PF break between. I'm one of the lucky ones, I guess.
Sandy
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marlinsfan
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Re: Cycles????
« Reply #3 on: Oct 6th, 2005, 7:35am » |
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on Oct 5th, 2005, 10:04pm, adacie wrote:
Question: Do you all get fairly regular cycles? Or is it normal to just get them whenever? If I knew that I was always going to get them in certain months for so long, I think I could deal with it. It's the not knowing and waiting that kinda sucks.
Thanks!
Stacey |
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Stacey, nothing is normal for us. The beast comes whenever he wants. Some years he comes at the same time. Then one year he'll not show up on time or not show up at all, but you still think about it. It's like terrorism.
For a long long time, my cycles would start in early December and end in late January. My family thought I was a grinch, cause I hated the holidays. My last cycle started in April, after 2 years of no-shows by the beast.
Don't try make sense of it. Get yourself diagnosed and get yourself some meds and oxygen. When he shows up, kick him in the nuts. If you're getting hit every night, try Melatonin it worked great for me. I took 9 mg every night 30 minutes before going to sleeep. After a few nights, it kicked in and my hits were less severe and I only got one, maybe 2 per night (usually got 4-6 per night).
If you haven't seen this already, check it out. It's got loads of good info. Also check out the oxygen link on the left.
http://www.brightok.net/~mnjday/chtherapy.pdf
PF wishes,
Jose
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seasonalboomer
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Re: Cycles????
« Reply #4 on: Oct 6th, 2005, 9:03am » |
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the answer to whether we get regularly timed cycles is ... sometimes. like others have said, sometimes we go years when we can schedule vacations and events around them perfectly. Other years, they show up out of the blue and then the schedule is thrown off for a bit. I wish that would make you feel better about it but the idea that CH can show up about anytime isn't all that comforting. it does reinforce to everyone "not in cycle" to enjoy the times of PF days and nights to their fullest.
scott
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ArCane
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Re: Cycles????
« Reply #5 on: Oct 6th, 2005, 1:39pm » |
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The beast takes different forms in all of us. It is hard to say what is the "norm." I started having them at the age of 16 and got hit like what you described; spiratic and in the summer. Since I turned 18 (5 years ago) I have had a cycle about every 6 months - 1 year. All at different parts of the year. Each cycle lasts atleast a month, most of the time 2, with pain everyday. Seemed like the beast needed a foot hold before pounding. But this is just me and like I said, everyone is different. Go to a doctor and get help. No one should live with this type of pain.
PF wishes,
Allen
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bnfreeman
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Re: Cycles????
« Reply #6 on: Oct 6th, 2005, 5:30pm » |
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I have only had CHs for 2 years now and I know that the month of October is when they get really bad. And here it is, October. I feel them breaking through. This is when I will know for sure how much my medicine is helping. All summer long I have wondered if they will be as bad as last fall. PFDN to all!
BF
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Kate in Oz
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Re: Cycles????
« Reply #7 on: Oct 6th, 2005, 7:59pm » |
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Hi Stacey,
My time is March/ April or Sept/Oct but not every year. But if I do get them that's when it will be for sure. I didn't realise this until one time I had some meds left over from the previous year and saw that it was almost a year to the day! Since then I've noticed the cyclical nature of my ch. And yet as you can see we all get them differently so... ????
BF I'm feeling for you. I think sometimes - because it is often the fear of an attack that is so bloody debilitating -knowing your cycle can be a real bummer. Spose it allows time to get prepared!  I really hope the meds work well for you this cycle!!!!
PFDAN
Kate
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yikes-another-one
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Re: Cycles????
« Reply #8 on: Oct 7th, 2005, 9:22am » |
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At first,my doctor thought they were onnly migraines.
For they would hit in October for one week,
and in January for one week.
Boy, do i miss those days.
Over the course of 6 years,
they mutated from just a week duration
to 3 weeks...hitting whenever and where ever.
Sometimes with 6 months' break
sometimes with less than a week break.
then i hit Sept 2004...
with less than 12 days pain free for the entire year.
I was getting 2 headaches every single day...
then it went to 4 headaches....
and now it changes back and forth...
but always that "goodmorning" one first thing in the am
and the "goodnight one" last thing at night
Sometimes manageable at a level 4
othertimes unbearable above a level 8...
No rhyme or reason.
My mom keeps asking if I am dehydrated,
but I know that is nt the problem.
(I visit the bathroom many times each day, thanks ma)
Best thing to do is fight back.
Don't compormise.
Enjoy the heck out of the good days,
and minimize the bad days...
stay online here, and write alot.
somedays, with less than a 10 minute break between hits, it can get really depressing, butyou know, I am often reminded thatweare lucky. I mean, we don't
have to be stuck into a wheel chair, we don't have to turn in our driver's license we don't have to worry
about loosing our memories....much...hahahahaha.
We really are lucky to have the lives we do have,
even if some days we get hit hard and can't do
the "normal" things. So we call for a raincheck
on parties, or put off afew things ntil we feel better.
the point is, this pain will pass,and we will feel better.
It not a "death sentence" andI for oneam grateful.
Bestwishes to all of us for pfdan!!!!!!!!!!!
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