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Topic: Scary cycle (Read 272 times) |
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nils
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Scary cycle
« on: Oct 10th, 2002, 8:31am » |
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Does anyone recognize such a cycle?
Being a Danish clusterhead for almost 12 years now with cycles lasting no more than two months with a two year remission I am now experiencing a long lasting very bad cycle. It has now been going on for more than three months.
After about two months in hell the killerattacks became fewer but leaving many minor attacks and many bad shadows. Two weeks later it was getting even better and I was sure this was really the end of that cycle. Had almost no shadows and even tried a few beers. But then a few days ago these really bad attacks returned – like the beginning of a new period.
So now I use Imitrex again and I have to increase the Verapamil-dosage again. I had tappered down from 600 mg. to 360 mg.
I think this a very strange and horrifying development. I have read a lot of messages on the board and donŽt remember having seen any descriptions like this. I’m terrified for getting chronic and I think this worldwide monster disease is so hard to handle.
Thanks for the board!
Nils
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echo
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Re: Scary cycle
« Reply #1 on: Oct 10th, 2002, 8:37am » |
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I have experienced what you have described during the early 90's. The only consistant part of CH for me is the inconsistantcy. The beast is a mutant. Just when I think I'll got it figured out the SOB changes the dance.
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BobG
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Re: Scary cycle
« Reply #2 on: Oct 10th, 2002, 8:54am » |
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Sometimes its a waltz, then the cha cha, the tango, and sometimes good 'ol Rock N Roll.
God forbid when the Rap music starts.
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BobG
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Re: Scary cycle
« Reply #3 on: Oct 10th, 2002, 8:56am » |
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Oopps.......
shouldn't have put Rap and music in the same sentence.
Sorry 
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LTBullitt
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The mutant was what gave me such a hard time this year and in so many ways made it harder to deal with.
It's true the only thing you can predict with CHs is there unpredictability.
My norm was to get an attack lasting the 45 min to hour and a half. Then they would leave as quickly as they came. I was almost textbook if such a thing is real.
This year I would get the attack, the time was still just 45 min or so but then I was left in so much pain afterwards it was impossible to even move from bed. So I went from the "dance" for the cluster then into almost a migraine state. It was 24 hours of pain, so even when I wasn't getting hit with the clusters I was still in very bad shape.
All new this year! yay!
The smaller headaches are here now which I have never had in my 13 years experience.
They don't compare in anyway to the CHs but they are one more thing to push you toward madness.
This is the solution I came up with.
For the CHs I had nothing and still don't I just have to dance for the 45 and live with it.(they are more painful this year as well, at least seem to be, have you noticed that?)
For the afterpain, migraine, small headaches wahtever you want to call them I use painkillers.
I did use samples of Imitrex pills that stole and found they worked for the little headaches.
But running out of them I'm now taking Demerol and it takes them away pretty good, at least I can funtion after a cluster attack.
And demerol only cost me 12 bucks for 30 pills so its the best I can do.
Nothing I can afford will kill a CH so I'm sure as hell not putting up with any other kind of pain.
M-16s will do the trick too.
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suzy617
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Re: Scary cycle
« Reply #5 on: Oct 11th, 2002, 10:25am » |
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I also have found this year to be one of the worse yet. The only days during this cycle I have not suffered is last friday and saturday when I decided to go out and get drunk. Beer is bad for ha but vodka seems to do the trick, about ready to try that theory again being I have a vacation day today! My inderal and imitrex seem to be doing nothing and this cycle is sure putting a tamper on my dating life.
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StanTheMan
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Re: Scary cycle
« Reply #6 on: Oct 11th, 2002, 11:03am » |
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I'll certainly concur with others here about the beast's unpredictability!
During my previous cycles the headaches were always about 45 - 60 min. long (one per day) and they always came between 4:00 PM and 10:00 PM. Very few shadows.
The cycles were about 3 or 4 weeks.
Then this last cycle came, and to me it seemed just plain wierd! The headaches hit at all hours with LOTS of shadows and the cycle lasted about 6 weeks. To top it off there were some days I had 2 attacks, which up until now never happened to me.
Like I've already posted I'm fairly certain I'm in remission now -- I haven't had a full blown attack for about 2 weeks, but I do have some low level shadows usually one a day -- about level 1 on Kip scale. If I still have shadows by the end of next week, I think I'll call the neuro about Predisone or something like it to hopefully knock those out completely.
I can't comment on the use of alcohol on whether or not it can make things worse.
(I don't drink, but that's a personal conviction that for me has nothing to do with my CH's ).
Sorry about your scary experiences! This certainly is very unsettling disorder we deal with.
Hang in there, pal!
StanTheMan
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"All the days of the afflicted are bad, but the cheerful heart has a continual feast." - - - - - Proverbs 15:15
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nils
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Re: Scary cycle
« Reply #7 on: Oct 12th, 2002, 8:58am » |
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Thanks for the response.
To LTBullitt: They are really bad but I dont find my attacks even more painful this year, but the duration, the shadows and the other headaches sure is worse. I dont know about Demorol, but its a kind of heavy stuff isnt it. Well, who cares, but what is M16?
To Suzy: Okay , IŽll try vodka.
To StanTheMan: I tried Prednison once, but it didnt do anything.
Next week I'll (once again) try a doctor combining usual practice with acupuncture/healing/psykology.
Just hoping!
The best from Nils
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suzy617
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Re: Scary cycle
« Reply #8 on: Oct 12th, 2002, 10:52am » |
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Well I drank the vodka yesterday and I had a pain free night, first time since last friday. Don't know if this is just coincedence or maybe I just drank so much that I slept thru it, LOL. Don't know if I could drink this stuff everyday until my cycle ends, I think my boss would kind of frown upon that but anyway I am just grateful for the one night of uninterupted sleep.
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Linda T
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Re: Scary cycle
« Reply #9 on: Oct 12th, 2002, 6:16pm » |
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Dear nils: Sorry things aren't getting any better for you. To answer your question - yes. Things change for sure.
My first two cycles I got one hit a day each one lasting anywhere from 1 to 3 hours. Never got the middle of the nite hit. Days were good too. Third cycle had me up 2 or 3 times during the nite but the days were still good. That cycle only lasted 2 weeks. This past cycle started in November 01. A few times I thought things were getting better only to get slammed. Started getting hit day and nite. Usual times though (my beast is big on punctuality). Totally horrifying experience. I agree with you there.
Things will get better. You'll find your magic bullet. Hang in there and good luck.
Wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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Charlie
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Re: Scary cycle
« Reply #10 on: Oct 12th, 2002, 7:00pm » |
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When I was having my attacks, they could surprise the hell out of me. They were more likely to develop in the spring and fall but mine liked to sneak up in summer now and then. Mine seem to me to have always been the same horrible intensity. A few times in the 22 years I had them, they would pop up for a day or two. So far as I know, no one else has had that expeience.
Welcome to our madhouse Nils and keep in touch...
(By the way, an M-16 is the U. S. Army's standard issue weapon. Guns are an effective but messy solution for CH. Not recommended)
Charlie
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Slammy
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Re: Scary cycle
« Reply #11 on: Oct 14th, 2002, 11:20am » |
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Nils,
The friggin Beast mutates sometimes..just to keep us guessing.... Mine have been the same for years... 3 months on, 1 to 1 1/2 years off.... Except the last 2 cycles... 1999 cycle was typical... 2000 year cycle was typical.. then at the end, it deaked me and moved to the other side for 3 more months of hell. I was reprieved for 2001, but 2002 the bastard came back for a repeat of the dual cycle of 2000. So... go figure... 
Slammy 
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