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Topic: Don't want to count my chikadees yet but... (Read 446 times) |
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Carl_D
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Don't want to count my chikadees yet but...
« on: Jan 16th, 2004, 2:21pm » |
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Last night/today is CH free day 3!!!
Can I go for a fourth?
Now if my legs weren't fucking half asleep and hurting like hell, it would be a great day.
Peace,
Carl D
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cootie
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Re: Don't want to count my chikadees yet but...
« Reply #1 on: Jan 16th, 2004, 2:24pm » |
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How long have your legs been asleep.......I hope that's not sum sorta cure......well........of course a cure would be nice.......but are you plannin on wakeing up your legs then hope for a 4th PF day ? Hope you remain PF forever Pam  
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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jonny
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Re: Don't want to count my chikadees yet but...
« Reply #2 on: Jan 16th, 2004, 2:44pm » |
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Has any Doc mentioned MS, Bro?
My daughter has that same symptom, gets numb in the limbs like you read about and then they put her on steroids and some other stuff......the other stuff causes side effectts so they give her Lith to combat that but she gives it to me cause she wont take it.....LOL
.........................jonny
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Carl_D
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Re: Don't want to count my chikadees yet but...
« Reply #3 on: Jan 16th, 2004, 2:52pm » |
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Well, they are checking on MS now that they have ruled out pinched nerve. I haven't mentioned this on the board yet but since you brought it up - it is scaring the fuck out of me. So far, I have had 6 people tell me that it sounds like MS and from what I have read the last 2 weeks...I have all of the symptoms - including one I was not aware of. I am told that I jerk and twitch alot in my sleep, and that is a sign.
My gp told me to stay near the hospital in case I get paralyzed again. That was NOT fun.
Now the next step I dread - spinal tap!
Anyone here had a ST? Does it hurt like I am thinking it does?
Sticking a needle in my spine doesn't really sound like a walk through the park. I go back this wednesday to the Doc.\
Peacefully panicked,
Carl D
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cootie
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Re: Don't want to count my chikadees yet but...
« Reply #4 on: Jan 16th, 2004, 3:06pm » |
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Geeze CarL I didn't realize you mite have sumthin serious and was jokein around....my usual......sorry.....doesn't sum shakeing occur with MS ? I have known two people go thru alot of the serious symtoms of MS and go thru sum tests and wind up on meds for it.......then after the trauma of thinkin they have been formally diagnosed with MS and dealin with it and the meds they had more tests done and docs ruled it OUT !! After bein treated for months for it they find this out ! One guy was treated for a year for it and he sold his bike and they even moved......he was goin thru some serious changes dealin with his diagnoses.....he doesn't have it they found out. There not sure WHAT was goin on all that time in either case !!!!! Good luck to you with it. Strange ways Pam
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RichardN
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Re: Don't want to count my chikadees yet but...
« Reply #5 on: Jan 16th, 2004, 3:26pm » |
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Make sure doctor has done SEVERAL. You don't want someone learning this procedure - - Am sure the nurses on this board would agree
PF days, months, etc,
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Carl_D
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Re: Don't want to count my chikadees yet but...
« Reply #6 on: Jan 16th, 2004, 3:30pm » |
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No sweat Coot's.
I have to speak about it sarcastically and a somewhat fictitious mindset. I won't deal with it right until they make the proper diagnosis. I am pretty much in denail about some of this shit happening to me. I always say - fuckit! Can't touch me - I have clusters. Only thing that would make me cave in is if they came back with some sort of cancer. The big C has taken ablot of my family, and being a former 2 pack a day smoker for 24 years isn't a healthy choice indeed. Already shot half of my lung capacity.
If it turns out that this is acute early onset MS like thier saying, I'll just have to learn how to live around it. Death is not an option in my book. I have more books to write other than my cluster novel "Snapped" - which is in the final stages of writing and finishing (YES!!!). Once I can figure out how to get it pressed up, I might - just might, have copies available at the covention. Anybody care to hear the story of a young man whose life is destroyed by Cluster Headaches?
Peace,
Carl D
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Virginia
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Re: Don't want to count my chikadees yet but...
« Reply #7 on: Jan 16th, 2004, 3:35pm » |
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Carl,
Don't stress out (I know, easy for me to say). I have had a spinal tap. I seriously don't remember it being painful at all (but then again I was having clusters at the time). The hardest part was having the nurse hold me down in the fetal position and not moving.
The other thing that was not fun was that you have to stay lying down with very little movement for about 3 hours after the test. If you sit up too soon after you can get what they call a "spinal tap headache". That's not fun.
Carl, I really hope that this is not MS. I hope the DR's find something else and that it can be taken care of quickly. I will keep you in my prayers. Please keep us posted.
V.
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The Clusterhead formerly known as 9erfan.
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jonny
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Re: Don't want to count my chikadees yet but...
« Reply #8 on: Jan 16th, 2004, 3:56pm » |
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on Jan 16th, 2004, 3:30pm, Carl_D wrote: I have more books to write other than my cluster novel "Snapped" - which is in the final stages of writing and finishing (YES!!!). Once I can figure out how to get it pressed up, I might - just might, have copies available at the covention. Anybody care to hear the story of a young man whose life is destroyed by Cluster Headaches?
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Dude,
You do know if you get that book published and someone picks it up for a movie it will bust out CH all over the world?
Finish the fucking thing already!!!!!!
.......................jonny
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Tara Ann
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Re: Don't want to count my chikadees yet but...
« Reply #9 on: Jan 16th, 2004, 4:48pm » |
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Hey Carl so glad to hear you are on day 3 PF....hope it continues and continues.........
As for the MS if you do get diagnosed it doesn't mean you will have it severe or you could get long long long periods of remission...... Lots of ppl with MS live a "normal" life for a long time with short bursts of problems. (My sister possible has MS, mostl likely the doc said but she hasn't had insurance to go back, also my Mother in Law is going through tests for it now too) I've studied alot about it in the past and was taught alot by my sisters doctor when she was going through the testing..... Just wanted to add my
Hang in there Carl! and keep your chin up as high as you can! You'll be in my thoughts!
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Charlie
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Re: Don't want to count my chikadees yet but...
« Reply #10 on: Jan 16th, 2004, 4:52pm » |
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Good news with the CH anyway.
Good luck with the other.
Damn. How about one friggin' thing at a time? 
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Carl_D
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Re: Don't want to count my chikadees yet but...
« Reply #11 on: Jan 16th, 2004, 4:53pm » |
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on Jan 16th, 2004, 3:56pm, jonny wrote:
Dude,
You do know if you get that book published and someone picks it up for a movie it will bust out CH all over the world?
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Ah, and yes. That is one of my hopes. I also hope with making a book such as this will grab peoples interest, and educate more people about cluster headache. Who knows? Maybe after doing music and writing for 24 years I will ironically make it as an author. If so, man....the nightmares I could write would make Freddy Krueger look like a tame babysitter.
The dreams I sometimes have induced by Amytriptyline, Olanzapine, and Remeron. Forced sleep at any cost, but the dreams - my fucking god... Does anybody else experience very vivid and surreal, to where you are even speaking in your sleep?
Plus, I have been sitting the whole time I have been here, and my legs are about to drive me nuts. Feels like I ran a marathon or worked a legpress, but I have done nothing of either.
Oh well, I am off to do very important things right now (Hook up my Jackson to the Marshall and rip for a bit.
Peace,
Carl D
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peteyg
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Re: Don't want to count my chikadees yet but...
« Reply #12 on: Jan 20th, 2004, 1:33pm » |
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Congrats on the PF days. Sorry to hear about the possible MS. All I can say is...hang in there. My mom has had MS for 20+ years. It's a bitch, but it's survivable. If you can make it with CH, you can do it with MS. DON'T GIVE UP. MS will suck you down if you give it half a chance, so don't let it! 20 years with chronic/progressive, and she's still walking. She's been my inspiration for a long, long time. Watching what she goes through every day without a single complaint kinda puts things in perspective for me.
Good luck!
Pete
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Patrick_A
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Re: Don't want to count my chikadees yet but...
« Reply #13 on: Jan 20th, 2004, 4:45pm » |
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Oh man....A SPINAL TAP???
I had one of those, Oh man, They stick this fugging needle that is about 18 inches long and about the size of a Tire tube needle in ya. Blood was squirting out from the hole that it makes. They actually had to strap me down, and put a rubber piece in my mouth to muffle my screams.
Congratulations on being pain free from ur CHs!
Ok man, i am just teasing ya about the ST. Ain't nothing to it! They give ya a numbing agent, and if it werent for the fact that you feel the pressure, there is no pain whatsoever. I could have laid there and read a book.
Patrick 
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| « Last Edit: Jan 20th, 2004, 4:47pm by Patrick_A » |
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cootie
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Re: Don't want to count my chikadees yet but...
« Reply #14 on: Jan 20th, 2004, 4:55pm » |
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Carl could ya have spinal injuries like dics crap.......I wake up feelin like I got beat ta death by a ball bat alot of days and then ran over a couple times by a semi and drug a mile or two and it's nerve damage CRAP from injuries when I was young and dumb.....numbless is part of the symtoms and spasm's you name it.....inlcudeing the bad migraine word !
(eeks...sorry) Sumtimes it's jus one part area that hurts...not always the same or all over and I always blame it on what I did the day before till I think about it.......didn't do nothin tramatic.....esp to feel like that so WTF !! But you've prolly had exrays ect rite ? Hey can some of us have a starrin role in yer movie !?? Long as it's not porn Pam
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Giovanni
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Re: Don't want to count my chikadees yet but...
« Reply #15 on: Jan 20th, 2004, 5:35pm » |
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If an anesthesiologists does the spinal tap they have had a lot of practice with needles in the spine as in spinal block with maternity patients. An Orthopedic surgeon did mine and I developed one of those spinal headaches for one week. Could not get out of bed and stand straight. I had to crawl to the bath room.
I finally was re admitted back to the hospital and had a "blood patch" where they administered a few cc's of my own blood into my spinal column. The blood patch worked within 24 hours.
An anesthesiologists did the blood patch and was practically painless. Good luck---so sorry you have to go through all of this.
John
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t_h_b
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Re: Don't want to count my chikadees yet but...
« Reply #16 on: Jan 20th, 2004, 6:27pm » |
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Yes, definitely get an experienced anesthesiologist to do the tap and don't let a resident do it unless they are a senior anesthesiology resident--you have the right to refuse treatment from anyone. (A senior anesthesiology resident might have more recent experience than the anesthesiologist at a teaching hospital.)
It's not as bad as you might imagine--it's a fairly quick procedure--and the hard part, like somebody else said, is arching your back like a cat and holding still. It is essential to follow instructions regarding movement and position afterwards or you'll get a spinal headache, which is bad but doesn't compare to a cluster from what I have observed of people who get them. However, it's no fun to lie down for so long. Make sure you have something to read and maybe some music with earphones for afterwards.
Also, since you have CH, you need to let the doc know so if you get a CH afterwards you will have O2 and your meds available. You can use your own meds if the MD writes an order if they are non-formulary but you have to do that ahead of time because the pharmacy might have to check them and the RN might have to administer them. You wouldn't want to have an untreated CH while you are supposed to be lying flat! Sometimes all rooms in a hospital don't have O2 and by the time they got a tank it might be too late to help.
You do get to brag about having a spinal tap for the rest of your life!
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| « Last Edit: Jan 20th, 2004, 6:28pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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BruceD
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Re: Don't want to count my chikadees yet but...
« Reply #17 on: Jan 20th, 2004, 8:04pm » |
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on Jan 20th, 2004, 5:35pm, Giovanni wrote:
I finally was re admitted back to the hospital and had a "blood patch" where they administered a few cc's of my own blood into my spinal column. The blood patch worked within 24 hours.
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Good catch Gio. Although I've never had one done, my wife (ICU nurse) has been on the delivering team-end of countless ST. Like others have said, don't let a newbie be stabbin' back there & the position is probably the most uncomfortable thing about them. The blood patch is also a comfort because headache is one of the most common side-effects.
Take care
BruceD
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jonny
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Re: Don't want to count my chikadees yet but...
« Reply #18 on: Jan 21st, 2004, 6:55pm » |
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Carl!!!!....How's it hanging Dude?
...............................jonny
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Giovanni
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Re: Don't want to count my chikadees yet but...
« Reply #19 on: Jan 21st, 2004, 7:10pm » |
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Spinal Tap Headache
I believe that the spinal tap headache is due to leakage of the spinal fluid faster than the body can replace it. When you stand or sit upright, the brain actually sags in the skull creating the headache. The Epidural (sp?) blood patch actually plugs the hole where the leakage originates.
I'm just sorry I didn't go back or complain sooner to get the blood patch quicker.
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