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        New Message Board Archives >> 2003 Posts >> THAT'S IT!!!!!!
        
(Message started by: Linda_Howell on Apr 30th, 2003, 7:44pm)
Title: THAT'S IT!!!!!!
Post by Linda_Howell on Apr 30th, 2003, 7:44pm
I knew this day would come.   The day I blow it.  (shut up Don)

I've been here for a long time.  I have grown increasingly tired......no.   Pissed off with some who are spouting their beliefs in heavy duty narcotics to deal with this pain.  Especially, I find it very hard to accept that they tell every newcomer to this board that they should try: Percocet, Percodan, Vicodin, Codeine, etc etc and blah blah blah.......I am so very insensed of the irresponsibility of these individuals.  

I've been away from the board for a little while and I just read, yet, another post,  telling some newcomer to take strong narcotics, so this is what has led me to post this.

I'm chronic.  I have no preventative that has ever worked, only 6 Imitrex per month (what a joke) and of course my 02.   If narcotics worked and didn't give rebounds, I'd certainly have them in my system right now.  But they don't and won't and I don't need the addiction on top of everything else in my life.  

     AND THAT MY NEWCOMER FRIENDS.......is what you need to know BEFORE you decide to try them.  There are so very many alternative treatments that this person fails to mention.  Please click on the medical info button and read all there is there before you go down the road to hell.    

     O.K. Flame away..............Linda H
Title: Re: THAT'S IT!!!!!!
Post by Elaine on Apr 30th, 2003, 7:52pm
A great post and if anyone beats you up for this they are nuts.
You go TS!
Title: Re: THAT'S IT!!!!!!
Post by Jackie on Apr 30th, 2003, 7:55pm
Ditto what E said!!!!!!!!

You are 100% correct, Linda.

Jacks 8)

PS....good to see ya....been wondering how you are :)
Title: Re: THAT'S IT!!!!!!
Post by don on Apr 30th, 2003, 8:00pm
You mean I dont have to keep doing heroin ?
Title: Re: THAT'S IT!!!!!!
Post by Linda_Howell on Apr 30th, 2003, 8:11pm


I don't know Don.........does the right coast have Betty Ford Centers??       LindaH
Title: Re: THAT'S IT!!!!!!
Post by cootie on Apr 30th, 2003, 8:17pm
I agree Linda.......I'm just a supporter here but have had my bouts with pain meds....most of them make me VERY sick or have scarey side effects and nothin to be recommended unless by a doctor. Even advil and OTC pain meds mess me up......(stomach pains that make me double over).......Not inta recommendin drugs to "da kids" Pam
Title: Re: THAT'S IT!!!!!!
Post by oringkid on Apr 30th, 2003, 8:19pm
Sorry Linda, but I will have to agree wholeheartedly with you there.  So I'm afraid I can't flame you. ;)

As many of you know, I don't do any of the meds, and in the past have gotten flamed for it or it was implied that I didn't have clusters...which is neither here nor there, but, I have tried many of the meds in the past including narcotics like Vicoden.

My one and only trial of that taught me that narcotics were not the answer to this pain.  They dulled my senses, but not the pain.  They made me sick to my stomach, but did not shorten the duration of my attack. I never tried them again.  I realized that I was not able to handle the attack as well as I could with no drugs whatsoever due to the way the narcotic dulled my senses and basically weakened me.  

First before I upset certain people, I would like to say that I believe that in certain, very rare cases, with unusual circumstances in concert with the CH, there are some people who, if unable to go the no-med route, have narcotics as their only choice.  I just want to make that clear.

But other than that, I too, have found the increase of seeming dependence (and I mean that as depending on, not necessarily as addiction) on narcotics very alarming.
And the recommendations as a first line defense against CH are even more alarming to me.

I don't know whether it is due to ER's giving it out or what, but I know that it is not the answer and I think it is dangerous.  And it is definitely a bad thing for advancing our cause!  We already are fighting the labels of being drug seekers and addicts.  We have been trying to make the medical community and the regular community understand that we aren't addicts or drug seekers in fact we don't want narcotics!  Now, this strange turn of events could serve to hurt us, by seemingly confirming what people have been saying!

Damn!, I would give alot for a 100% effective non-narcotic med, or better yet a cure for this crap so that this problem would not even come up!

Anyway, that is my 2 cents!  So, Linda, I will stand up and help take the heat from the flames with you!

Sherry
Title: Re: THAT'S IT!!!!!!
Post by oringkid on Apr 30th, 2003, 8:21pm
(man, I take too long and write too much! LOL, I started the above post when no one had posted at all!)

S.
Title: Re: THAT'S IT!!!!!!
Post by Miklos on Apr 30th, 2003, 8:25pm
Gotta go with you. When I was first diagnosed 18 years ago by my GP, I begged for dope. He said, "Nope. Won't help, and you'll be fogged in the morning." I begged some more, and he gave me a five day Rx for something. He was right. Thank the lord for the backyard  and an ice pack
Title: Re: THAT'S IT!!!!!!
Post by ShariRae on Apr 30th, 2003, 8:26pm
Atta girl Linda...tell it like it is :) Newbies come here for help & information...and I have to agree with you... narcotics are one of many (and imho, the last) options.
Shari
Title: Re: THAT'S IT!!!!!!
Post by AlfieAtkins on Apr 30th, 2003, 8:31pm
Right back at ya Lind, Chronic with no 02 but 14 imitrex a week, using the "imitrex tip" i still run short, and meet the 10s at night, no preventitive but sheer hell, feel for ya and good shout! Alfie
Title: Re: THAT'S IT!!!!!!
Post by don on Apr 30th, 2003, 8:38pm

Quote:
I'm just a supporter here


I HATE THAT PHRASE, LEAVE OUT THE "JUST"
Title: Re: THAT'S IT!!!!!!
Post by Linda_Howell on Apr 30th, 2003, 8:46pm
Alfie, it was in your thread that I was referring to.  The bad adviceyou were given I mean.    

  Thanks everyone for the back-up.  But please let it be known that I'm certainly NOT against using narcotics which are temorarily used for things like having a tooth extracted, etc. and are prescribed by a doctor for a short time  for pain.  SHORT time being the operative word here.  

and thanks for agreeing with me on this one Sherry.  I know we've had our problems in the past.

LindaH
Title: Re: THAT'S IT!!!!!!
Post by don on Apr 30th, 2003, 8:53pm
OH so I dont have to quit heroin.
Title: Re: THAT'S IT!!!!!!
Post by AlfieAtkins on Apr 30th, 2003, 8:58pm
Not as daft i look in my pic eh linda, going for a new c02 trial in london, not done o2 yet, neurologist wants me on a preventitive path, will give u any useful info ;)
Title: Re: THAT'S IT!!!!!!
Post by Mark C on Apr 30th, 2003, 9:02pm
Narcotics are for normal pain, like an amputation, CH is perfect pain! Narcotics have not helped my CH in almost 30 years. I know some, very few, claim to get relief...I hope you do and I am glad if it works. Just not for most of us.

"The pain of CH builds up very rapidly to such an excruciating intensity that most oral agents are absorbed too slowly to cure the pain within a reasonable time. The most efficacious abortive agents are those involving parentral or pulmonary administration."

"Opiates, non-steroidal anti-inflammatory drugs and combination analgesics have no role in the acute management of CH."

Prof Goadsby is a clinical neurologist consultant and Dr Matharu is a research registrar at the Headache Group, Institute of Neurology, London


OUCH (http://www.clusterheadaches.org/library/general/management_of_ch.htm)
Title: Re: THAT'S IT!!!!!!
Post by AlfieAtkins on Apr 30th, 2003, 9:04pm
on to ya mark, going to the convention on 31 june
Title: Re: THAT'S IT!!!!!!
Post by Linda_Howell on Apr 30th, 2003, 9:09pm


Nope Don.   You can always use that synthetic drug.  What is it called Methadone I think....

Yeah that's it, methadone.   Are we having fun yet?

     sheesh.   LindaH

P.S. all you newbies I also meant to direct you to the link to the left under medications as well as medical info.

      water X 3
      02
      Imitrex
      amerge
      maxalt
      Verapamil
      Caffergot
      Charlies Technique
      Lithium
      Amyltriptaline (sp?)
      cold packs/heat packs
      excersize


   
     
Title: Re: THAT'S IT!!!!!!
Post by Callico_Kid on Apr 30th, 2003, 9:15pm
Linda,
I have to agree wholeheartedly with you that narcs should only be used as a last resort and for only limited time.  As one who has worked with addicts for a number of years I would rather face 10s all day long than to run the risk of addiction.  Years ago when I was first diagnosed my Dr put me on something that I don't even remember what it was other than it didn't stop the pain, I just didn't care until I came down.  It was when I got to work operating machinery in a textile plant and had to have someone else read my time card cause I couldn't read my name that I realized I was definately on the wrong path.  AND I STILL HURT!!!

The only reason I can think of for the use of narcs is when nothing else has worked and one needs to be able to get some rest.  Then to be given something strong enough to make you sleep in order to allow you to build up some strength.  That still should be only as a last resort and under carefully controlled circumstances. IMHO
jc
Title: Re: THAT'S IT!!!!!!
Post by Linda_Howell on Apr 30th, 2003, 9:59pm


I quote......"had to have someone else read my time card because I couldn't read my name"  

       Duh???   losing my mind(shut up Don)  is almost as bad as the pain.  

   Didn't want to start anything here.  I just read the last post I wanted to, regarding the use of narcs for this pain.   I feel it's so very irresponsible.

          O.K. I'm done.   Til the next time.



                Linda
Title: Re: THAT'S IT!!!!!!
Post by Ree on Apr 30th, 2003, 10:02pm
You are so right Linda... no flamin here... I wouldnt know how to flame anyone if I had to... Narcotics mask the pain... Abortives are the way to go and Preventatives... amen..................~*ree*~
Title: Re: THAT'S IT!!!!!!
Post by Charlie on Apr 30th, 2003, 10:46pm
http://www.smiliegenerator.de/s11/smilies-16434.png

Nice going with your post too  8)

Charlie
Title: Re: THAT'S IT!!!!!!
Post by Ted on Apr 30th, 2003, 11:54pm
I have to disagree, Linda. Don, you're right. Heroin is the way to go. Whoever questions this has got to deal with my monkey. It's one thing to be in pain. It's another to tell people not to use something that doesn't work and makes things worse.
Linda, if you were truly chronic you'd want to not only face the pain everyday but the physical dependence on something too. I'm shocked you're talking against shooting junk in your arm all day.
It's funny... My last convenience store stick up I was talking to my partner, let's call him Mr White, about the benefits of freebasing over shooting. Like the typical newbie to the junkie scene, he thought shooting was better because it looked cooler.
When will we be given a fair shake and not be condemned so much? I'm so upset I need to sing. Where's my trout?
(On a serious note, Cootie, JUST a supporter?
Title: Re: THAT'S IT!!!!!!
Post by Linda_Howell on May 1st, 2003, 12:54am


I'm wrong here.   I told Don to STFU...........

it should have been Ted......LMAO at ya.

          LindaH
Title: Re: THAT'S IT!!!!!!
Post by Wendy the Brit on May 1st, 2003, 3:42am
Linda

What a fantastic post, no flaming from me.

There is little place for those drugs for a new sufferer, chronics who have tried everything know what they are doing and know what doesn't work are a different matter.

Prof Goadsby stuff that Mark posts makes sense, the 'hard stuff' is generally not advised or useful for CH until all else has failed and the pain must be stopped. This was why I was so concerned for Jill in an earlier post when she started talking about taking Thorazine on top of all the other drugs.

THANKS TO THIS BOARD, WHEN MY DOCTOR PRESCRIBED ORAL PETHIDINE AT THE SECOND APPOINTMENT ONLY, I KNEW NOT TO TAKE IT. PROBABLY USELESS AND LEADS TO BUILD UPS OF NASTY CHEMICALS IN THE BODY

Thanks for posting this Linda


Wendy
Title: Re: THAT'S IT!!!!!!
Post by TerryS on May 1st, 2003, 6:36am
Good job Linda, Your so right. I know because my Dr. has had me on Vicodin, Stadol and Fioricet for sooooooo many years I now suffer rebound headaches big time.

God bless ya for saying it, and I still love ya.

TerryS
Title: Re: THAT'S IT!!!!!!
Post by maggie_may on May 1st, 2003, 7:12am
I agree with you all the way on this point here, Linda.  Narcs just mess you up if you use them for a long period of time.  Before I was diagnosed, my GP had me on percocets and something else just as strong.  Both did nothing for me but make me high and wreak havoc on my stomach.  There are so many other less-destructive routes to try first (preventative/abortive).

no flaming here,
maggie
Title: Re: THAT'S IT!!!!!!
Post by don on May 1st, 2003, 2:37pm
Methadone is for babies who can't handle the real thing.
Title: Re: THAT'S IT!!!!!!
Post by brain_cramps on May 1st, 2003, 3:15pm

on 04/30/03 at 21:15:07, Callico_Kid wrote:
Linda,
I have to agree wholeheartedly with you that narcs should only be used as a last resort and for only limited time.

Couldn't agree with you more...   Been down that road a couple of times (that I remember  ::)) with demerol, percocet/percodan, fiorinal   AND I'M NEVER GOING BACK THERE!!!   I'm PISSED when I see someone being steered in that direction.   There are so many different ways to go now, as compared to 20 years ago (ie newer meds).   Someone would have to have SH!T  between their ears to seriously consider using narcotics to deal with the pain of CH, especially after hearing some of the horror stories.



on 04/30/03 at 20:19:28, oringkid wrote:
As many of you know, I don't do any of the meds, and in the past have gotten flamed for it...
You too?   That was one of my reasons for leaving 3.5 and 2yrs ago after cycling out.   This time, I'm not leaving if I can help it! (being perpetually broke and losing my internet connection might manage to pull me away)  I haven't touched ANY meds (other than 1 imitrex nasal spray that didn't do squat for me) in 5 to 7 years (can't remember that far back anymore  :-[, but that's a different story ;) ).

I know that I don't have a lot to add to the majority of the discussions relating to meds since its been so long since I've done them, but this is different!!!

I seriously think that anyone that agrees with this stance should RANT/RAVE/SCREAM/YELL whenever we see someone being pushed down that road.  >:(

PFDAN,
grant    8)
Title: Re: THAT'S IT!!!!!!
Post by Sean_C on May 1st, 2003, 6:31pm
There's no fury worse than a womens scorn.....get me.
And I definately agree, dope doesn't do shit:) Not for clusters anyway:) Find something thats not addictive and your home free hopefully. If you can't then your fucked, just try to deal with it. It hasn't killed me yet. Don, I'll save you a seat at Mass Ave and South Hampton LOL, first in line gets there treat?LOL


Nice thread Linda,

Sean


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