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Jimmy_B.
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Question for Chronic Sufferers
« on: Feb 20th, 2005, 11:18am » |
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If you went chronic after suffering as an episodic CH'r...did you notice anything strange during the cycle, immediately before...besides the normal "my God...these things aren't stopping".
The reason I'm asking is cause I'm episodic and currently in cycle since mid to late January, and this cycle is acting really strange. Normally I get the classic 1 or 2 headaches in the beginning which ramp up to 3-4 during the middle then slowly go down in frequency and severity until they disappear. Sometimes I'll get a wayward headache after I think the cycle is over but that is rare.
This cycle started with 3 to 4 headaches for about a week...then seemed like they stopped for a few days, then started again at 1-2 headaches for a couple days, stoped again for a few days, so on & so on. Also I'm getting all day shadows which are very unusual for me.
In regards to meds...when I first felt them come on I got scripts for a Medrol Dose Pack, ramped up to 360mgs of verapamil...& even though I can't stand imitrex...I took a couple of 6mgs shots in the very beginning. I haven't used any analgesics besides one or two Percocets...which I used for another pain issue and haven't used imitrex in weeks, so that kind of "rules out" any rebound issues.
I'm worried to hell that these may become chronic..."God Bless anyone that suffers from these things, chronically."...and just looking for some feedback.
Thanks,
Jimmy
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Langa
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Re: Question for Chronic Sufferers
« Reply #1 on: Feb 20th, 2005, 11:31am » |
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Hi Jimmy...
Episodic here for 26 years. Every June for 2 months. June 2004, started the cycle that never ended. Nearly 9 months now. So though I can't say I'm chronic yet, I'm being realistic.
What I saw differently in my last cycle was that in the past where the cycles last 6-8 weeks, I didn't see a break in the cycle until 4 months later. I had a break for 3 weeks and then started up again and I'm still in cycle. I also noticed during this past cycle that never happened before, I shadowed 24/7 and there was no set shedule like in the past. I could time when I would be getting hit before, this cycle wasn't like that. And it seemed nearly everything would trigger one...even eating would bring one on.
I speak in past tense somewhat, because it's only been the shrooms that has broken the pain cycle. I still feel the beast stirring in the background, but I've had some rest finally. Still working on not feeling the beast stirring in the background at all... 
By the way, here's hoping you DO NOT go chronic.
Langa
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Lizzie2
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Re: Question for Chronic Sufferers
« Reply #2 on: Feb 20th, 2005, 12:09pm » |
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Hey Jimmy,
I'm one of the oddballs that just started out chronic out of nowhere. But I guess it is not surprising given the history of my "other" headache type. All my life, I was episodic...but with migraine and tension. They never increased leading up to the chronic daily migraine. Then out of the blue, I get one that never leaves.
Then the cluster story..... After I fell and got my concussion in March, 2003...things weren't right. I just didn't know how to describe them, or what category they fit into. I know that lead to some frustrations when I first found chat before I found this place. I think it seemed to some like I was trying to just fit my headaches into clusters. But honestly, BillyJ was helping me to realise that my headaches weren't fitting into a particular box, and I really needed to keep figuring it all out.
So I kept on going. For several months after the accident, I was getting very short lasting, almost the ice-pick type headaches. They lasted only about 2-20 minutes...but they came up to 20 times a day. So I was thinking that I had CPH or that my head was just being dumb after I managed to smack it into the ice.
Then, in the fall...I believe November 20, 2003 was the first one I remember going to the ER with. The bastard lasted 4 hours. I was kicking and yelling all the way until it finally dissipated on its own. The ER doc wouldn't give me O2...so I got a shot of toradol and that was about it. Of course, that didn't kill the CH, but you know as well as I do that 4 hours is a damn long time to be fighting the beast. I think it just eventually stopped...
After that came the regular schedule.. I got them nightly at 5pm, 7pm, 9pm, 11pm, 2am and 4am without fail. I slept about an hour a night. I was in my 5th year at Penn State, and I was trying to get all my nursing pre-req's done and get ready for my senior recital so I could get the hell out of there. I never felt so depressed and miserable in all my life. Thank God for the people here because otherwise, I would have lost my mind. I remember countless people helping with oxygen problems at 2 or 3am when I was getting hit and the tank wouldn't work right, etc etc.
Then I had a hospital stay in December 2003-January 2004. My doc upped my verapamil to about 720mg/night and did a bunch of the DHE and all the other stuff that Jefferson does inpatient. Dropped my clusters to 2 a night for a short while.
And since then, I have not had regularity. I generally still get them at 4am or at least wake up then...sometimes with the "painless cluster attack" which has been described in brief. I'll have all the symptoms with the eye tearing, congestion, etc...but no head banger. That's always freaky.
Otherwise, now I have no idea when or where I'm going to get hit. It used to be all evenings and nighttimes...now it doesn't matter...they come whenever they feel like it. It sucks...
So that's my progression into chronicity. I guess I'm going on about 15 months now into my first and only "cycle" haha  Actually, Jefferson told me I don't qualify for their studies because part of the criteria is that you must have had an actual cycle...you can't have been chronic from the start. That kinda pisses me off.
Doubt if this helps you since it's not a story from episodic cluster to chronic CH, but I thought I would share it anyway in case there is anything you can get from it!
Hugz,
Lizzie
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Jimmy_B.
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Re: Question for Chronic Sufferers
« Reply #3 on: Feb 20th, 2005, 12:58pm » |
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on Feb 20th, 2005, 12:09pm, Lizzie2 wrote:Doubt if this helps you since it's not a story from episodic cluster to chronic CH, but I thought I would share it anyway in case there is anything you can get from it!
Hugz,
Lizzie |
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Definitely helps...Thanks for the info Langa & Lizzie.
Jimmy
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vig
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Re: Question for Chronic Sufferers
« Reply #4 on: Feb 20th, 2005, 1:27pm » |
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mine was a slow gradual change from episodic to chronic. I went from 2, 1-month, fall-spring episodes to 4, 2-month, winter-spring-summer-fall episodes, to pretty much alla da time fun!
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nani
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Re: Question for Chronic Sufferers
« Reply #5 on: Feb 20th, 2005, 1:38pm » |
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My CH has always been "irregular". Varied remission periods, varied cycle lengths, etc. I had brain surgery in 10/99. I started a cycle in 6/2000 that lasted for 4 weeks. I started another "cycle" in 8/2000 and it's not over yet. (Although I found a 99% improvemnt using kudzu) see here:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1107368408
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Redd
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Re: Question for Chronic Sufferers
« Reply #6 on: Feb 20th, 2005, 1:46pm » |
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If you take into account the medical records of years of mis-diagnosis I've never NOT been chronic...so I can only tell you that a quitting smoking attempt last year at this time only served to mutate this from a few days of PM hits and the rare day time hit every couple weeks to multiple hits a day and night with a few days break between.
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sandie99
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Re: Question for Chronic Sufferers
« Reply #7 on: Feb 20th, 2005, 3:11pm » |
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My episodic CH turned to chronic one in 2003. The cycle just went on and on and on and hasn't stopped. I've had few PF days and once a PF week.
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cat14
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Re: Question for Chronic Sufferers
« Reply #8 on: Feb 20th, 2005, 8:43pm » |
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on Feb 20th, 2005, 1:27pm, vig wrote:mine was a slow gradual change from episodic to chronic. I went from 2, 1-month, fall-spring episodes to 4, 2-month, winter-spring-summer-fall episodes, to pretty much alla da time fun!
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That was me too!
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Opus
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Re: Question for Chronic Sufferers
« Reply #9 on: Feb 20th, 2005, 10:16pm » |
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I was only episodic a few years before going Chronic. First I had an extra cycle, I though was caused by Zoloft, it stopped two weeks after stopping the drug, then a new cycle a few months later that lasted 6 months, then in April 2003 this cycle started.
This cycle was strange because I didn't have as many hits per day, ( I think my max is 4) and I had PF days from time to time. There was no longer a time that I would get hit, and if there was it would change in a week. I took melatonin for a long time with great success, that is until I was a year in cycle, I started getting those 4 10's a day, and when I ran out of melatonin, I didn't get more, within a few days I was back to normal. I later found out that Melatonin is a trigger for chronics, and it seems to have changed to one after a year.
As I approach my second year, I am much worse, the beast is kept at bay with verapimil and trex. I have good weeks and bad weeks, a month ago I was PF for 2 weeks, and now I am getting hit twice a day despite the verapimil.
Opus/Paul
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yikes-another-one
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Re: Question for Chronic Sufferers
« Reply #10 on: Feb 20th, 2005, 10:44pm » |
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that is the stinky part of this beast.
He mutates and confuses us and befuddles the doctors.
I had usually a 4 week cycle, 2 or 3 times a year.
Then this summer the freakiness kicked into
high gear.
4 level 10's in one day (very rare for me)
and then at least 2 - 4 headaches every day
from Sept 1st until the 2nd week of January.
then I got an entire week off from pain. wahoo!
then back to 2 headaches a day,
with an occasional 3 headaches in the evening.
Sometimes when it snows, sometimes nothing.
I am greatful whn the monster comes in quietly
at a level 3 or 4
and keeps it down to low roar.
I know it takes more than a year to really know if you
are chronic, so I keep crossing my fingers hoping
for 30 pf days...so I can keep pretending.
I have had these headaches for almost 7 years.
but keeping a journal is about the only thing
that is really helping me focus on the good days.
when the pain is low, when I can do my
"TO-Do"list.
that is what is important.
so if a few days I slide, and let things go
ahh well.
It seems like tomorrow always comes along
to rescue me.
good luck!
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Jimmy_B.
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Re: Question for Chronic Sufferers
« Reply #11 on: Feb 21st, 2005, 6:57am » |
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Thanks a lot, for all the replies...hopefully I'm worrying myself for nothing.
Stay painfree, everyone,
PS...Won't be posting for a bit. Going in for the Anterior Cervical Discectomy w/fusion...on Thursday. Maybe that will help this cycle along. Stranger things have happened.
Jimmy
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LeLimey
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Re: Question for Chronic Sufferers
« Reply #12 on: Feb 21st, 2005, 8:16am » |
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Good grief Jimmy that sounds terrifying!
Good luck with it.. let us know how you are doing ASAP... or ask someone else too. I'm going to worry otherwise and you won't do that now will you?! 
PFDANS hon
Helen
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Jimmy_B.
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Re: Question for Chronic Sufferers
« Reply #13 on: Feb 21st, 2005, 9:01am » |
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on Feb 21st, 2005, 8:16am, LeLimey wrote:Good grief Jimmy that sounds terrifying!
Good luck with it.. let us know how you are doing ASAP... or ask someone else too. I'm going to worry otherwise and you won't do that now will you?!
PFDANS hon
Helen |
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They say it's not as bad as it sounds... There gonna take out 2 discs in my neck & fuse them with a piece of bone from my hip....(ahhhh, that does sound scary)...they say it's only a 2 day hospital stay & I'll be back at work in 4 to 6 weeks. It's nothing to do with CH...just an injury from a car accident I had a few years back.
A couple of people here have already given me a lot of info...I'd mention the names but I'm afraid I might forget someone.
I'll keep ya informed. Thanks again.
Jmmy
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Tara
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Re: Question for Chronic Sufferers
« Reply #14 on: Feb 21st, 2005, 11:30am » |
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First of all, I'd like to extend my "deepest of sympathy" to the "death of your head". I am also going through a "cluster"- on day 17 in a row, and I can relate to the changes you have been experiencing. I too, am having "spotty" episodes- I think I have found relief, ready to return to work, and here they come again, right around 1:00 am. Some lasting 10 hours, some going in "spots". Not that there is much relief to speak of for us clusterheads, but I have found that the times between the "big blasts" can be tapered just a bit by relaxing in a tub of very hot water, with an ice pack or 2. Sometimes, it helps to relax if you use some aroma oils in the water, such as peppermint, wild rosemary, or lavender. Try all 3. Good luck to you during your bout.
From one to another, you are in my thoughts.
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Redd
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Re: Question for Chronic Sufferers
« Reply #15 on: Feb 21st, 2005, 11:34am » |
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Quote:
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purpleydog
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Re: Question for Chronic Sufferers
« Reply #16 on: Feb 21st, 2005, 8:21pm » |
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on Feb 21st, 2005, 11:30am, Tara wrote: Some lasting 10 hours, some going in "spots".
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Your headache is lasting 10 hours? That's not CH.
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don
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Re: Question for Chronic Sufferers
« Reply #17 on: Feb 21st, 2005, 8:25pm » |
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Quote:| 2. Sometimes, it helps to relax |
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Just the opposite with just about every sufferer I've ever known.
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Jonny
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Re: Question for Chronic Sufferers
« Reply #18 on: Feb 21st, 2005, 8:40pm » |
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on Feb 21st, 2005, 11:30am, Tara wrote:
Chick....you got Meegraines......women dont get CH
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| « Last Edit: Feb 21st, 2005, 8:40pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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vig
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Re: Question for Chronic Sufferers
« Reply #19 on: Feb 21st, 2005, 8:40pm » |
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on Feb 21st, 2005, 11:30am, Tara wrote:| , it helps to relax if you use some aroma oils in the water, such as peppermint, wild rosemary, or lavender. Try all 3. |
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strange post, isn't it?
the last thing I want is to smell ANYTHING
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purpleydog
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Re: Question for Chronic Sufferers
« Reply #20 on: Feb 21st, 2005, 8:44pm » |
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on Feb 21st, 2005, 8:40pm, Jonny wrote:
Chick....you got Meegraines......women dont get CH
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Damn Jonny, I didn't want anyone to know about the sex change...
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Jonny
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Re: Question for Chronic Sufferers
« Reply #21 on: Feb 21st, 2005, 8:47pm » |
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on Feb 21st, 2005, 8:44pm, purpleydog wrote:| Damn Jonny, I didn't want anyone to know about the sex change... |
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Sorry if I outted you 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Redd
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Re: Question for Chronic Sufferers
« Reply #22 on: Feb 21st, 2005, 8:52pm » |
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on Feb 21st, 2005, 8:40pm, Jonny wrote:
Chick....you got Meegraines......women dont get CH
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Nuff said...
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E-Double
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Re: Question for Chronic Sufferers
« Reply #23 on: Feb 21st, 2005, 8:59pm » |
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on Feb 21st, 2005, 8:52pm, Redd715 wrote:
Nuff said...
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What else you got over there?
If I make a comment do we get to see more ?
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