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        Cluster Headache Help and Support >> Cluster Headache Specific >> dilaudid
        
(Message started by: backeotomy on Nov 21^st, 2006, 10:58pm)

Title: dilaudid
Post by backeotomy on Nov 21^st, 2006, 10:58pm

anyone out there have any experience with dilaudid(hydromorphone) as a pain med for clusters? just started this ON TOP of morphine sulfate. neuro at the VA really liberal with giving out pain meds. must be real compassionate to the suffering of vets. any experience - let me know. thanks

Title: Re: dilaudid
Post by kcopelin on Nov 21^st, 2006, 11:31pm

Oy vey, don't get me started! Narcotics are last-ditch ammo in the war on CH. Best used very sparingly, if at all. Two forms of morphine seems like a REALLY bad idea. However, there are some who have totally intracable pain and pain meds give them some semblance of a quality of life. For those, please do not stop taking your pain meds suddenly.
The VA neuros, just like neuro everywhere, do not generally have alot of experience or education on CH. Be an informed patient. Print the info on the left, medication survey, oxygen info, Kip scale.
So, what else have you tried?

PFDAN y'all,
kathy

Title: Re: dilaudid
Post by backeotomy on Nov 22^nd, 2006, 12:03am

what meds haven't i tried is a better question. been chronic for about 10 years now. every med under the sun plus all kinds of non-conventional methods such as chiropractic, accupuncture, hypnosis....... been on prednisone steadily for the past 3 years (dr's not keen on it but without them things REALLY go to hell even worse) verapamil, lamotragine, depakote, on and on and on.
really don't care anymore. become a prescription junkie...... least of my problems.
it's depressing (although a blessing to all them) to know that the majority of those here are only eposodic sufferers and only deal with short bouts. living with them just about everyday, 365, is a whole other story.
i'd rip my eye out if that would stop the pain - but it won't, since the pain is "perceived" by the brain, not "caused" by an actual infliction of pain.
i used to frequent this site regularly but found much more "socialization" taking place than i would think.
just did some research on that dilaudid stuff and it sounds like bad stuff BUT if would stop or even lessen the pain i'll eat it til it kills me.

Title: Re: dilaudid
Post by bothofus on Nov 22^nd, 2006, 4:21am

i used to frequent this site regularly but found much more "socialization" taking place than i would think.

Can you clarify what you mean by that ?

Carl

Title: Re: dilaudid
Post by chopmyheadoff on Nov 22^nd, 2006, 4:57am

on 11/22/06 at 04:21:47, bothofus wrote:

i used to frequent this site regularly but found much more "socialization" taking place than i would think.

Can you clarify what you mean by that ?

Carl

i was wondering about that too :-/

Title: Re: dilaudid
Post by BarbaraD on Nov 22^nd, 2006, 6:19am

Back,

I'm chronic also, so I can RELATE to your pain.

Have you tried Cafergot? It's worked on me for years. I take a Cafergot pill and 25mg of Phenergan (for naseau) and it works about 8 hours.

They also have CafergotPB (make sure it's the PB - phenobarb) supppositories that work really quick and last about the same time.

Very few people here have found help with narcs.

O2 - Red Bull or Coffee at the first twinge also work good to abort.

I found out (from dealing with VA docs for years with my husband) that ya just gotta tell 'em what to do and if you tell 'em right - they'll do it.

Also Topamax kept me in remission for years with only occasional hits. When I was at the worst part of mine - the topamax stopped them cold. It was my miracle drug back in 99. If you do try that take the full dose at night (100-300mg) and you probably won't have the side effects from it -- just a little short term memory loss.

Good luck and keep us informed as to your progress.

Hugs BD

Title: Re: dilaudid
Post by sailpappy on Nov 22^nd, 2006, 7:17am

:-/I can tell you from experience that Narcotics like this just add another problem into the mix, Addiction!
I have not used dilaudid for clusters, but I have used it for other pain related problems when I had broken my sternum and several ribs.
IMHO you are just adding an additional problem into your already problematic life when you use Narcotics.
Great buzz and does a great job of blocking out certain types of pain, but I found that my clusters were not one of them! Even dosed up on injectable Dilaudid and Demerol my clusters broke right through! Pappy

Title: Re: dilaudid
Post by Charlotte on Nov 22^nd, 2006, 8:23am

Hi, back. What was your sign on when you were here before? How long ago was it?

Charlotte

Title: Re: dilaudid
Post by taraann on Nov 22^nd, 2006, 8:24am

Dilaudid pills do zip zero nothing for me (chronic here) but IV dilaudid, phenergan, and steroids sometimes work wonders when I land in the ER....but I require a very very large dose. on the other hand sometimes it doesnt help at all.

But out of all the pain meds out there, that one has the highest sucess rate for me.

Title: Re: dilaudid
Post by vietvet2tours on Nov 22^nd, 2006, 9:05am

on 11/22/06 at 08:23:54, Charlotte wrote:

Hi, back. What was your sign on when you were here before? How long ago was it?

Charlotte

Yep what she said

Title: Re: dilaudid
Post by bothofus on Nov 22^nd, 2006, 6:36pm

Well I guess he or she doesn't want to socialize.

Carl

Title: Re: dilaudid
Post by Linda_Howell on Nov 22^nd, 2006, 9:54pm

Besides the fact that you afre one handsome man John, I knew there had to be another reason I love ya.

Quote:

--------------------------------------------------------------------------------
I can tell you from experience that Narcotics like this just add another problem into the mix, Addiction!
I have not used dilaudid for clusters, but I have used it for other pain related problems when I had broken my sternum and several ribs.
IMHO you are just adding an additional problem into your already problematic life when you use Narcotics.
Great buzz and does a great job of blocking out certain types of pain, but I found that my clusters were not one of them! Even dosed up on injectable Dilaudid and Demerol my clusters broke right through! Pappy

She probably doesn't want to socialize because she didn't like the answer to her question. :-/

Title: Re: dilaudid
Post by georgej on Nov 23^rd, 2006, 12:45am

Opiates and synthetic pain meds never did a thing for me back when, except cause some nasty rebounds. But what the heck do I know? I'm only an episodic.

Sorry--got something stuck in my craw. Better get back to my socializing.

Title: Re: dilaudid
Post by jon019 on Nov 23^rd, 2006, 1:05am

on 11/22/06 at 00:03:53, backeotomy wrote:

it's depressing (although a blessing to all them) to know that the majority of those here are only eposodic sufferers and only deal with short bouts. living with them just about everyday, 365, is a whole other story.

Hi back,

I can sense your pain and despair. There is nowhere else you will find people who really understand it. Becoming chronic is a nightmare possibility I dread. Some of the chronics here have said just the opposite. They would rather learn to deal with the consistency than the unknown. Neither one of us can pick our poison, it picks us.

I would ask that you remove the word ONLY from your comments. Honestly, it is offensive. There is nothing ONLY about CH. Time after time on this board you will see people say, if ONLY my Doctor, or spouse, or significant other, or coworkers, or friends, or insurance company, or, or or.. would experience just ONE of these, their outlook on the condition would change infinitely. You, as a clusterhead, should understand that and pick your words more carefully.

Regards, and I hope you find an answer, I hope we all do.

Jon (episodic, but NOT ONLY an episodic)

BTW, as you have read in this thread and can find in many many others, narcotics are rarely an answer.