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        New Message Board Archives >> 2003 Posts >> desperate invasive measures
        
(Message started by: Sandie802 on Mar 7^th, 2003, 12:31am)

Title: desperate invasive measures
Post by Sandie802 on Mar 7^th, 2003, 12:31am

I humbly apologize, as I am way too new at responding, much less interet times, but to "Andy" and those of you that read my last post, "screw the diagnosis".. I learned from all of this hell is that if something doesn't feel right, it is theresponsibility of the neurologist to refer you to a neurosurgeon when all conventional means have been exhausted....let them do their homework.. exhaust every med change.. "see you in the dark side". make them come to the ER to "witness the beast".. like I said. to me, it's THEIR obligation to find an end to the madness..and not simply make you an experiment..I say FU** THAT!! You all deserve to get back to your lives....these demons come from somewhere, and to "somewhere" they have to return...on this subject, I remain a true bitch.....(and as of today, hubby remains "demon free"not drug induced".. due to come home Sunday.. his neurosurgeon simply stated I had my thinking ass-backwards.. cluster headaches are a "result" of trigiminal nerve stimullation, not the cause.. it was the end result....strange concept,..so, I'm simply the wife, but please to all, my only prayer is that you will all find your way to sanity, peace of mind....productivity in your lives....and irridicate that FU** beast!!!!!!!!!

Title: Re: desperate invasive measures
Post by andy on Mar 7^th, 2003, 1:18am

Sandie, Was your husband diagnosed with CH? Or TN (Trigeminal Neuralgia)? In the early 90s i was diagnosed with CH. Then in the mid 90s i was also diagnosed with TN (Shooting pain on the left side of my face) TN and CH are very painfull but are different kinds of pain. Not really even related. My neuro put me on carbamazepine (e.g. Tegretol) It worked great for me. I still had the shooting pain but i could deal with it while on the Tegretol. It finally went away after a while and hasnt been back since (thank you God) but i still get CH every couple years which is a very different kind of pain! I hope your husband stays painfree from the operation. Andy

Title: Re: desperate invasive measures
Post by cootie on Mar 7^th, 2003, 9:59am

Sandie802 hope her hubby has found a way to escape the pain and this works for him....hope he has a fast recovery......good luck to ya's....Pam-Coots

Title: Re: desperate invasive measures
Post by jonny on Mar 7^th, 2003, 6:25pm

on 03/07/03 at 01:18:01, andy wrote:

Sandie, Was your husband diagnosed with CH? Or TN (Trigeminal Neuralgia)?

Excelent question Andy.

..................................jonny

Title: Re: desperate invasive measures
Post by kissmyglass on Mar 7^th, 2003, 6:40pm

Sounds like TN. My friend is a neurosurgeon & he said he does about 30 decompression operations a year, all for TN...zero for Clusters.

Hope your friend heals quickly & stays pain free.

Kev C

Title: Re: desperate invasive measures
Post by Sandie802 on Mar 8^th, 2003, 12:51am

on 03/07/03 at 01:18:01, andy wrote:

Title: Re: desperate invasive measures
Post by Sandie802 on Mar 8^th, 2003, 1:31am

Hey, I've read your responses.. took them all in, just wanted to input minor positiveness, believe me, I cannot comprehend your pain, but TRUST me when I say I've been witness to it.... puke buckets hidden everywhere... broken windows.. crashed carswithin the garage.. I was merely trying to pass on info to whomever was at this stage.... if I pissed off anyone like I would dare come up with an alternative way of approaching this demon, and confronting it head on, well, let me just say, that my husband and I refuse to let it into our lives any longer, which is why he opted for trust in this 9 hr surgery from hell, not evenknowing whether they would find anything to justify the insanity he was suffering.. Imerely posted as info if anyone else had reached that moment...excuse me for living.. but to all the well-wishers, I love you..may you find peace...Sandie

Title: Re: desperate invasive measures
Post by Sandie802 on Mar 8^th, 2003, 2:02am

I find myself owing an explation as to the medical procedure. bottom line, it seems that a "normal vein" that starts from the brain stem, somehow grows into an artery(much larger), and somehow loops itself(twice in my hubby's case) around the trigimenal nerve.. laymen's terms, undetected by MRI's.. therefore, it's free to pulsate the HE** out of that nerve...and because the heartbeat flows thru these veins, can cause systematic.. biological clock clusters, symptomatic of the headaches..(set your clocks ladies and gents)..do the math.. make sense???dread the nights??reroute dinner, kid's bedtime...yada.. yada... been there, done that.. anyone wanting to talk further. I'm at Diamondlady802aol.com....hugs and peaceful nights to all, Sandie

PS to Andy, hubby had been on Tegretol for yrs. God bless if it works for you...

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 6:19am

Hey folks, seems we have a crazy bitch on our hands.

Let me share the hate mail Sandie sent me.

From: DiamondLady802@aol.com
Date: Saturday, March 08, 2003 03:13:37
To: jonnymule@attbi.com
Subject: (no subject)

I PITY YOU!! If you can stand there since "1926 and CHOOSE to live in your cage, living with clusters,, you have ISSUES!! Life IS a GIFT!!!!!!!!!.... take a reality check, you need it..........my name is Sandie and I REFUSE to accept your existence!!!!!!!!!!!!!!!......no, stay in your pity party, you obviously love to wallow in it.............

For anyone to believe that I have been chronic since 1926 has to be crazy, what gets me is that I didnt say word one to her......LOL......I guess miss sandie has not lurked long enough to know who she is dealing with ;D

.........................jonny

Title: Re: desperate invasive measures
Post by woobie on Mar 8^th, 2003, 8:54am

UH OH!!!

:-X

Tina :-*

Title: Re: desperate invasive measures
Post by 2late on Mar 8^th, 2003, 9:24am

unfuckenbelieveable! ..........Jack

Title: Re: desperate invasive measures
Post by suzy617 on Mar 8^th, 2003, 10:10am

Damn, she does seem a little pissed off at ya, Jonny, huh? ::)
Kind of wierd since like you said, you never said a word to her. Geez, some people.... ::)

suzy

Title: Re: desperate invasive measures
Post by JDH on Mar 8^th, 2003, 10:23am

;D lmmfao!!!
77 years chronic, wow, you da man!
or should I say da "old" man.

Jim

Title: Re: desperate invasive measures
Post by Ted on Mar 8^th, 2003, 10:39am

That's crazy. Anyone who's been around here long enough knows you were episodic until 1933.

Title: Re: desperate invasive measures
Post by Sandie802 on Mar 8^th, 2003, 11:07am

Crazy?? Aren't we all a bit when it comes to dealing with this??Hard to believe I was once a normal person, sleeping 7 hrs every night, waking well rested, never heard of cluster headaches or what they could do to one's life...to Jonny, I apologize..seems your comments hit a nerve with me at 3am, with the week(s),months I've had recently....hard to imagine I'm actually a grandma of 6, hey??I don't "hate" anyone....but I'm simply the type of person that will not accept this beast in my life any longer if there is something untried, someone willing to look into any and all alternative methods.....

Title: Re: desperate invasive measures
Post by 2late on Mar 8^th, 2003, 11:24am

none of us want to accept the beast but we deal with it as best we can, for most preventatives & abortives make our lives "acceptable" the beast does not run my life, refusing to accept someones existance is a fuckin' joke! .........Jack

Title: Re: desperate invasive measures
Post by eyes_afire on Mar 8^th, 2003, 11:51am

??? ??? ???

:-X

http://home.att.net/~witchfinder/confused_smiley.gif

Title: Re: desperate invasive measures
Post by suzy617 on Mar 8^th, 2003, 12:00pm

on 03/08/03 at 11:07:05, Sandie802 wrote:

to Jonny, I apologize..seems your comments hit a nerve with me at 3am, .....

The only comment I read from Jonny was:

Excelent question Andy.

..................................jonny

Ok, so I'm a little confused.... ???

suzy

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 12:41pm

on 03/08/03 at 11:07:05, Sandie802 wrote:

seems your comments hit a nerve with me at 3am

1) What comment's?

2) Should we all send rude e-mail to people we dont know?

3) If you would put the bottle down for ten minutes maybe you would think a little clearer, Gandma!!!

..........................jonny

Title: Re: desperate invasive measures
Post by cathy on Mar 8^th, 2003, 5:10pm

on 03/08/03 at 11:07:05, Sandie802 wrote:

Hard to believe I was once a normal person, sleeping 7 hrs every night, .....

Hey Im probably gonna get my second flaming since posting here, but sandie802....I find it hard to believe you were ever a normal person...the only advice I can give you is get some sleep and let your hubby cope for a few nights....nothing like a martyr to get your back up.... you might surprise us all and turn out as luverly as moi....as for Jonny I fucking luv him...fuckeneh some people... >:(

Cathy....flame suit at the ready...

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 5:16pm

on 03/08/03 at 17:10:16, cathy wrote:

flame suit at the ready...

Take off the flame suit Sweet cheeks, aint no one going to flame you as long as im king of this message board. ;D

............................................jonny :D

Title: Re: desperate invasive measures
Post by suzy617 on Mar 8^th, 2003, 5:17pm

on 03/08/03 at 17:10:16, cathy wrote:

Hey Im probably gonna get my second flaming since posting here, ...

Now Cathy, who is gonna flame you for standing up for one of ya brothers? I dont think anyone, well nobody but maybe Sandie ;D
You take that flame suit off now, ya hear? ;)

suzy

Title: Re: desperate invasive measures
Post by cathy on Mar 8^th, 2003, 5:20pm

...thanks Suzy & Jonny but I haven't got anything on under it...lol ;D

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 5:30pm

on 03/08/03 at 17:20:16, cathy wrote:

...thanks Suzy & Jonny but I haven't got anything on under it...lol ;D

Full monty?

Im down with that ;D

.............................jonny :D

Title: Re: desperate invasive measures
Post by cathy on Mar 8^th, 2003, 5:35pm

...flame suit off...going to bed now...it's late here 11.30pm and I for one don't ever wanna turn into a superbitch (again)..!!! ::)

Nite nite.. :-*

Sweet cheeks

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 5:42pm

Nite cheeks

...........................jonny

Title: Re: desperate invasive measures
Post by Charlie on Mar 8^th, 2003, 6:11pm

Geeze Jonny, what an email.

What kind of shit was that?

Charlie

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 6:22pm

on 03/08/03 at 18:11:49, Charlie wrote:

Geeze Jonny, what an email.

What kind of shit was that?

Charlie

HUH?

E-mail?

Didnt know I sent you E-mail.

What did it say?

.....................................jonny

Title: Re: desperate invasive measures
Post by suzy617 on Mar 8^th, 2003, 6:37pm

LOL Jonny, did ya forget what the original post was about? I thinks Charlie was referring to the email Sandie sent ya. (unless you already knew that and I'm just a duh duh head) ;D

suzy

Title: Re: desperate invasive measures
Post by jonny on Mar 8^th, 2003, 6:51pm

Well, seems im the (you can say it here Suz) shit head.......LOL

Gee, thanks for pointing that out, now Charlie will have something to laugh at me for years.......LOL ;D

..............................jonny

Title: Re: desperate invasive measures
Post by Charlie on Mar 8^th, 2003, 8:05pm

http://www.gifs.net/animate/belvanim.gif

Chuck ;D

Title: Re: desperate invasive measures
Post by jonny on Mar 9^th, 2003, 6:51pm

Sorry to bring up old news but old news dealing with that kind of mail has to be dealt with so everyone knows there are wack jobs here.

Again, I say what comments?

..................jonny (Waiting)

Title: Re: desperate invasive measures
Post by suzy617 on Mar 9^th, 2003, 7:44pm

I think we scared grandma Sandie away. Just curious if you ever responded to her email or was that the end of it?
It was just totally uncalled for when you said nothing to provoke her.

suzy

Title: Re: desperate invasive measures
Post by jonny on Mar 9^th, 2003, 8:19pm

This was my response, Suz

.....................................................................
..................../´¯/).....................(\¯´\................
.................,/¯../........................\..¯\,..............
................/..../...........................\....\............
........./``/´¯/'---'/´¯¯`·¸.............¸·´¯¯`\'---'\¯´\``\......
......../'/.../..../......./¨¯\........../¯¨\.......\....\...\'\...
.......('(...´...´.... ¯~/'...').......('...'\~¯ .....´...´...)')..
........\.................'...../.......\.....'................../.
.........''...\.......... _.·´............`·¸_......... ../...''...
...........\..............(..................).............../.....
.............\.............\................/............./........
.....................................................................

.......................................jonny

Title: Re: desperate invasive measures
Post by Woobie on Mar 9^th, 2003, 8:30pm

Hey Jonny

How long did it take you do to that?? LMAO!!

nice!!

tina :-*