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Topic: What am I? (Read 238 times) |
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gtar_man
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Even my neuro can't answer this one - anyone care to take a stab at it?
My first episode was classic CH - icepick attacks under the right eye, up into the brain, 45 minutes usually, building up in frequency over several weeks, 2 months of pure hell, then slacking off into shadows and finally dissolving completely. Whole process took 6 months. Then 4 years off, no symptoms.
Started again May '01, same onset, same 2 months of hell (even worse this time) then slacking off EXCEPT this time the shadows never disappeared.
Presently, I haven't had a "stabber" in over a year but my head hurts 24/7. Shroom therapy brings the pain level down for a few days, then it's back again.
Seems to me all of you guys complain of stabbers either daily or weekly. You're either episodic, and you have pain-free remission periods, or you're chronic, and you have ongoing stabbers. Is there anybody else out there like me? I asked the neuro last week and he gave Evasive Answer #237(B)subsection 19: "It doesn't matter what you call it if your head hurts" or something like that  . Well, it does matter. Am I still a Clusterhead or have I morphed into something else? ???
One more question: do you chronics have pain-free periods in between attacks or do your heads hurt all the time (like me)?
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skettico
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Re: What am I?
« Reply #1 on: Oct 7th, 2002, 2:24pm » |
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Im not a sufferer, but I have a suggestion. It sounds like you are a ch person, cause you get all the same things just in spurts.
Have you had an MRI and a cat scan? Those may help a bunch. You should keep coming in here and talking to the "greats" about this stuff. They know alot and helped me and mine figure out what to do in our times of need.........good luck! 
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jonny
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Speaking as a 27 yr chronic I can go (if I get lucky) a week without a HA while on prevenitive meds, When I had no meds the longest I could go without a HA was about a day or two, again if I was lucky. I never had 24/7 pain there was always PF time wether it be an hour or a day.
.....................jonny
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Drk^Angel
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Is your 24/7 pain like a mild CH, or like something else? I have chronic TTH which basically feels to me like a 24/7 hangover headache, so it feels nothing like a CH. If it feels like a moderately severe CH, and you get other symptoms like the horner's, or whatever, then it could be Hemicrania Continua. HC is the only TAC with attacks that last 24/7. Dunno for sure... Maybe your just a freak among freaks... 
PFDAN.............................. Drk^Angel
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gtar_man
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I love YaBB 1G - SP1!
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Re: What am I?
« Reply #4 on: Oct 7th, 2002, 3:45pm » |
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Drk - well, that would figure.
I'm at work right now and Mr. Pain is centered above my right eye. It's a constant, piercing thing that extends across my forehead and the bridge of my nose. It's not like a cluster attack. When it gets better, the piercing part eases off but the forehead/nose pressure remains. It's been like this for 14 months now, since the classic CH attacks stopped.
It's particularly bad today, maybe as a result of that rat-poison Topamax that I started taking Friday at my neuro's suggestion and stopped taking Sunday, rather than jump off a bridge or smash my toes with a sledgehammer. Can't understand how ANYBODY could take that godawful stuff (or any of the meds they prescribe for CH, for that matter). Prednisone? Sansert? I'd rather drink a glass of battery acid!
Had all the CT scans and MRI's in '97 when this horseshit first started - all came back negative.
Hey Jonny - what meds are you on?
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jonny
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Med's?
Lithium 300 mgs twice aday
Verapamil 240 mgs twice aday
Works wonders for me, Bro.......has been for over a decade.
...........................jonny
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Virginia
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Re: What am I?
« Reply #7 on: Oct 7th, 2002, 5:39pm » |
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I am a chronic sufferer as well and I pretty much have pain all the time. But it's not cluster pain. Right now, my clusters are every 5 hours and they last for about 30 minutes. But in between the clusters I always have some level of pain. Sometimes it's just in my jaw, sometimes just in my neck, and sometimes it's just a really bad shadow right under my eye which feels like i've been hit repeatedly in the face. But it's not 24/7 of cluster pain (I would've shot myself long ago if that was the case). And then there are the times when the clusters start getting worse & coming closer together. I just got over a month long episode where they were about 3 hours apart and every one felt like a 10.
I rarely have a day off from pain. The last time was in July and I went 15 hours with no pain. Before that the last full day was Feb, 2001.
If I ever get back on insurance I'm definitely going to try jonny's med combo. I've tried both Verapamil & Lithium but never together. I gave up on Neuros & meds a few years ago but after reading all the posts in here, I think I need to go back and keep trying different combos because chronic is hell!
Virginia
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The Clusterhead formerly known as 9erfan.
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Linda T
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Re: What am I?
« Reply #8 on: Oct 7th, 2002, 6:07pm » |
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Dear g-tar. I'm afraid I can't say whether or not you're chronic or why you're in constant pain. I can tell you that I read alot of stuff here and I have come to the conclusion that no two of us are exactly alike.
I had a blissful 11 year remission which ended in 1995. Had an attack again 1997 and then again 2001. This last one was the kicker. I never had an "episode" like it. I don't know if it was all the meds or if it would have gotten that bad without them but I was getting hit 5 times a day and again 3 times during the nite. They started around kip 6 and gradually worked their way up to kip 9 sometimes 10. Nothing was working. This past April the neuro put my on Inderal LA.
Since April I have had maybe 3 ch's that went up to about a 7. Other than that I have "pain" every day. Not anything I would run to the doc about but it's there. Pressure around my eye and temple and cheek. Everyday. Sometimes it lasts only a few minutes at certain times of the day other days it starts and won't let up for several hours. My doc has tapered me on the Inderal and so far no noticable difference. Don't know whether or not I'm chronic. Have to wait until November (my one year mark) to figure that one out.
Hope things get better for you soon.
Wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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jonny
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Virginia,
I tried Verap.........nothing
I tried Lith.........nothing
When I mixed them together it was heaven compared to what I was going thru.
BTW: I just got e-mail from you and the return path did not match your address, I think your puter is sending out viruses, run your anti-virus and do it NOW!!!
....................................jonny
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gtar_man
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I love YaBB 1G - SP1!
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Re: What am I?
« Reply #10 on: Oct 7th, 2002, 7:24pm » |
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Interesting responses, all. It does indeed seem like eveyone's Beast is different, with the common denominator being we all wish it would get the hell outta town.
Jonny, on that Lithium thing, the side effects I read about pretty much scared me off from trying it ("permanent irreversable hypothyroidism" among others). You should be an authority on the subject after 10 years - it give you any trouble? Seems like I'm sensitive to a lot of meds, like that Topamax (bleahhh). So Lithium and Verapamil together give you, on a 1-to-10 scale, how much relief?
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jonny
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1-10 scale, Bro?
It gave me my life back in a major way.......The dose that is taken is far low from the dose taken for what its meant for.
Dude, this combo has changed my life, I am no longer beating walls with my fists, slamming my head or wanting to kill the nearest living thing.
Sideffcts for me are nill, I will kill anyone that tries to take this from me, thats not a sideffect its the truth!!!!!
...............................jonny
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kaptex
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It has to get better, I've already seen worse!
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Re: What am I?
« Reply #12 on: Oct 7th, 2002, 9:21pm » |
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I was episodic since I was 17 (I am 41 now) then went chronic 4 years ago. Then they put me on the same combination jonny is on, although a higher dosage.
Lithium 1200mg per day and 480mg Verapamil per day.
If I go off of that combination it triggers a cycle within a week. Otherwise I get 1 to 3 CH every week or so. If not for the med combination I would still be looking at 5 or 6 per day every day with an occasional 24 to 48 hour break. I haven't noticed any side effects except for a slight shaking in my hands. Most of the time it isn't even noticable. I agree with johnny. Anyone comes after my meds and I'll shoot first and forget about the questions! 
I have the same 24/7 pain all the time. The pain is identical to a CH in area and type of pain (behind the eye, nose, teeth, jaw, ear, forehead sometimes with tears other times no tears) but always about a kip 2 to 5 and it will fluxuate throughout the day. Always on the same side as the clusters are. (Mine have never switched sides....at least not so far) I've been on 100mg Topamax...didn't help. Tried 8mg Sansert with no luck. Prednisone will break most of my cycles that the Lithium/Verapamil combination doesn't stop but nothing helps with the 24/7 HA. (I call them my mini clusters because that is what they feel like).
I see a neurologist once a month but we're still looking for someting that might work. Till then I try to cope as best I can, I get frustrated sometimes because it rarely goes away. On rare occassions I do get a reprive for a couple of hours but that isn't on a regular basis. Sometimes oxygen will help but not always and not on a regular basis. I tend to get depressed about it a lot since I am going to school and it makes it hard to concentrate. I have many times wondered about jumping off the end of my dock, swimming to the middle of the lake and just letting myself go under but I can't. I'm too chicken, and I can't do that to my kids (age 17 and 15). I thought I might be a freak as well. Guess maybe we both are! 
Sorry for the long winded post.
Wishing PFDAN for everyone,
Kimberly
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Whatever tomorrow brings I'll be there...with open arms and open eyes!
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gtar_man
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I love YaBB 1G - SP1!
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Re: What am I?
« Reply #13 on: Oct 8th, 2002, 7:49am » |
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Thanks to everyone - we are more alike than I thought.
See, DrkA, I'm only a freak, not a freakin' freak.
Jonny - sorry about the 1-10 scale thing. I was in some major pain yesterday and not thinking too straight. I guess the question for me is, since I'm not actively having CH attacks in the cycle right now, would the Lithium/Verap combo do anything for my 24/7 shadow pain? Only one way to find out, eh? My problem is that I'm so damn sensitive to meds. One single 50-mg Topamax gave me the screaming willies, and after 3 days on it I was ready for the nuthouse (ask my wife - she has to put up with me. So far, anyway).
I'm gonna start a new thread on an article a friend sent me. Pretty interesting reading - bionic man stuff.
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