Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Success with narcotics
        
(Message started by: dberg99 on Oct 7^th, 2003, 4:05pm)

Title: Success with narcotics
Post by dberg99 on Oct 7^th, 2003, 4:05pm

In general, I agree that narcotics don't help, and often aggravate ch episodes, but for the 3rd time in my 19 year history of ch, I have ended a cluster with massive dose of narcotics.

Saturday night, about 6 weeks after the first headache in this cluster, I was at my wits end, getting 5 or 6 headaches every night and 2-3 every day. Using oxygen and when that failed, Immitrex. Concerned that Immitrex use was 3 or 4 a day, but not really caring because it always subdued the beast for a few hours.

I told the ER physician of my predicament and advised him(they hate being told what to do, but they are sooooo ignorant) that 150 mg of demerol had stopped my cluster in the past. He said that this hospital is not in the habit of administering demerol (apparently, long-term use can cause heart problems or something. More likely, the fact that some people use it recreationally makes it unsuitable for medicinal use in the minds of the right-wing, fascist, puritanical medical community).

I told him I had been in the ER exactly 10 times in 19 years and that the incidence of drug addiction among CH sufferers is exactly zero. We hate meds! I told him that I had been in the ER two weeks ago asking for the same but had been given 2.5 mg of Dilauded, a new narcotic (supposedly 40times stronger than demerol, so equivalent to 100 mg demerol). After that dose I had an absolutely uncontrollable 10 about 1 hour later. I hate to admit it, but I broke down in tears begging for 150 mg demerol until he said he would give me more Dilauded. At least it was something...

When the nurse came to administer, I asked her the dosage and she said 2 mg. My wife was with me and I told her, Let's go, honey, they're not going to help me. Then the nurse said the doctor had said she could repeat the dose until the pain went away. Well, I didn't actually have a ch going on, I was looking to abort the cyscle, not alleviate the pain of 1 headache. I looked at my wife and said, they want to see a headache, OK, I'll give them a headache.

I let her poke my butt with the 2 mg and then I closed my eyes for 2 minutes and I had a big one going, about a 9. I always get one when I go to sleep. I was taking their oxygen and rocking for an hour when my wife went out to stir things up. I got another 2 mg. An hour after that the pain had still not dropped. I got a third 2 mg dose, thanks to my wife's entreaties.

The pain left. I could barely walk. But that was exactly what I needed. I slept the night thru, and had a killer headache the next day, but it was not a cluster headache, just an ugly hangover from the disgusting Dilauded. Believe me, no one will ever use this drug recreationally.

I have been pain free for 3 days now, pretty certain that this episode has been aborted. Six mg of Dilauded, equivalent to 240 mg demerol, did the trick.

Title: Re: Success with narcotics
Post by UnsolvedEquation on Oct 7^th, 2003, 4:56pm

3 days and pain free is great. congrats ! But I still think it's a little early to say your cycle has ended. I also think even if it has ended (hopefully it has), I wouldn't be so sure the narcotics did it. Also, I think that 150 mg of Demerol is a HUGE dose let alone 240mg. Usually for me, 75 - 100mg of Demerol and I am out. It WILL abort an attack, not a cycle. Of course I realize that meds affect people in different ways. Maybe I just can't handle as much demerol as you. The MOST i've ever had was 2 mg of Stadol followed by 75mg of Demerol.
Anyways ~ If it helped you, that's great. Goodluck and I hope your PFD's last forever !
PS I find it hard to believe that any ER doc would give anyone a 150mg dose of demerol. Maybe in a few doses but not just in one big dose like that. For some people, a dose like that could cause some serious problems.

Title: Re: Success with narcotics
Post by dberg99 on Oct 8^th, 2003, 11:10am

You are a true innocent...100 mg of demerol is nothing for me, will not even stop a 6 on the scale. But I'm 54 and have used painkillers for a while, raising my tolerance level. Most Docs won't do it, but there reasoning is moral rather than rational, which really pisses off the good humor man when he has a ch. You'll be shocked to here how much oxycontin Rush was taking when it comes out. Bret Favre of the Green Bay Packers was taking 13 vicodin a day for years...

I once took 9 percocet, one at a time, over a 10 hour period trying to stop my clusters, and still went to the hospital. Taking them all at once is more effective than trying to sneak up on it gradually, for me. It's the shock to the system that confuses the beast.

Title: Re: Success with narcotics
Post by UnsolvedEquation on Oct 8^th, 2003, 3:41pm

I guess so...I'm not use to taking narcotics at all. I tried some for awhile, taking handfuls, but it just made me stoned w/ a killer headache. :-/ Since then, it's only Imitrex injections with an occasional trip to the ER for Demerol, Stadol, or Morphine (Doesn't really matter to me). I guess I should be thankful that 75 - 100 mg of Demerol will still knock out the beast, huh !!?!! :)

Title: Re: Success with narcotics
Post by mrbonecrusher on Oct 9^th, 2003, 2:25am

I'm new here. Glad I found fellow CHs. I used to routinely get 150 of Demerol and I know what you mean about educating the ER docs. I recently changed over to 10mg of Nubain which works pretty good. New Doc took me off all that and has me on Avinza 60mg at night. So far works good.

Title: Re: Success with narcotics
Post by Karla on Oct 9^th, 2003, 1:38pm

2 - 4 mg of dilaudid always gives me a few days pain free. Demerol wont touch my ha. Strange how we are different. Be carefull asking for high doses of narcotics. I had a really bad ha one night and 4mg of dilaudid didn't help so the dr said he would give me another 2 mg. 6 mg totoal. I said ok and got my shot. I was imediatly sent home because they had no intention of giving me anymore. I just needed to go home and rest they said. Well I went home (don't remember leaving the hospital) and my husband put me to bed. He then went downstairs to watch movie with the boys. He forgot something in the office accros the way from my bedroom. He happened to look in on me and found me blue and not breathing. He called 911. They said it was a drug overdose and if it would have been another 15 min. I would have been non recoverable. They gave me narcan and pulled all the dilaudid out of my system and I was left with a massive headache again but at least I was alive. So you got one heafty dose there. You are lucky to be alive but be careful please!

Title: Re: Success with narcotics
Post by Prense on Oct 9^th, 2003, 3:12pm

You mentioned O2 and imitrex for managing your attacks, but what have you tried as a preventative?

I definately do not agree with the statement that "drug addiction among CH sufferers is exactly zero." That is an absolute statement that is most likely very incorrect.

The only thing demerol gave me was apathy towards the fact that I still had a HA. When the attack subsided, I slept like a baby. The next day sucked though.

Chris

Title: Re: Success with narcotics
Post by Hound_Dogg on Oct 10^th, 2003, 7:06am

on 10/09/03 at 15:12:05, Prense wrote:

I definately do not agree with the statement that "drug addiction among CH sufferers is exactly zero." That is an absolute statement that is most likely very incorrect.

Chris

The Drug Addiction rate of anyone taking Narcotics chronically for pain (pure mu-type) is under 4 percent. There hasn't been a study on Cluster sufferers in this capacity...however, I have been to a few Doctors who would make you believe it's somewhere around 100 percent . ???But it's probably around the same 4 to 5 percent.

Jim

Title: Re: Success with narcotics
Post by CMNpain on Oct 10^th, 2003, 5:46pm

Well I have been a CH sufferer for 14 years and 7 years ago I had a Dr. in Virginia give me 120 Percocet at a time with 5 refills (when it was legal to do so) and I can't confirm from a doctor but I can guess pretty close that I was hooked! I took them 4 at a time sometimes 20-25 per day. Believe me...with the beast it can happen. How many of you out there have just not cared what you did or how much you took! Whatever it takes to get rid of the headache!!!!!!!!! Period!!!!!

Chuck

Title: Re: Success with narcotics
Post by mrbonecrusher on Oct 10^th, 2003, 5:58pm

That 's me with Stadol. Works fantastic for awhile but I have to keep increasing the dosage. Then there is the rebound HA. I'm still optimistic about this time released stuff for now. I've had this episode since 11-12-02 at 1320hrs mountain time. Had never really had HA before this so I've been learning a lot the last 11 months.

Title: Re: Success with narcotics
Post by Zonie on Oct 10^th, 2003, 8:29pm

Chuck, I agree with your statement that I would take "anything" to stop the pain. I'm sure this is true of most of us on this board. I'll discuss the proper treatment and meds when my pain goes away. And narcotics are not the only danger that we face either. I feel certain that many of us do abuse/overdose on the abortives. My ankles and feet are so swollen right not that I can hardly walk and I feel certain that it's from taking 2 or 3 times too many cafergots on a daily basis. I do see a new neuro. on the 26th so hopefully he can do something else for me.

I feel that most of us would much prefer to take nothing at all (I know that I would)....but when the pain is at 6 - 10, I for one would take anything to make it stop. I did try Stadol for a while, but it made me deathly sick to my stomach and I didn't like the dr that gave it to me. So that little problem took care of itself.

Hopefully there will soon be a stumbling/bumbling doctor or mad scientist that will accidently discover the cause of our problem and therefore look for the cure.

Keep hanging and hopeing,
Zonie

Title: Re: Success with narcotics
Post by kim on Oct 10^th, 2003, 8:41pm

demorol didn't make ya puke yer guts out? ???must be me.

Title: Re: Success with narcotics
Post by Zonie on Oct 10^th, 2003, 8:48pm

Kim, I think it is you... my sister or myself cannot take demerol. Same as you. It took us several surgeries each to discover how much better we felt if they left it off. I list it as a med that I am allergic to so no one will ever give me any of it. Stadol does the same to me so I just figured that they must be cousins or something.

Title: Re: Success with narcotics
Post by Prense on Oct 11^th, 2003, 12:51pm

When they gave me demerol, they also gave me an injection to keep me from getting nauseated.

Title: Re: Success with narcotics
Post by Karla on Oct 11^th, 2003, 3:09pm

Same here. I take an antinausea shot with the dilaudid. It always works otherwise I puke my guts out. I would take anything to make the pain stop. I am a baby when it comes to pain and I would take anything to stop it.

Title: Re: Success with narcotics
Post by aaronforceace on Oct 13^th, 2003, 12:40pm

Hello all,i have to say reading these narco posts are a little scary!!!I am in my second cycle in 5 years and it's now in it's third week.I originally was prescribed imitrex in pill form which did nada for me,two days ago my doc prescribed 500 mg vicadins.The minute i feel one coming on i pop two and within 15 minutes i'm good to go.I get quite high and have a residual headache but "the demon" as some call it is sent packing.Has anyone else tried vicadin and if you have does there effectiveness taper off?

Title: Re: Success with narcotics
Post by vig on Oct 13^th, 2003, 1:52pm

I've used Vicodin successfully when all else fails.

So I keep ONE vicodin in the house for emergencies.
(Kind of like Barney Fife and his one bullet.)

Title: Re: Success with narcotics
Post by spanky on Oct 13^th, 2003, 7:16pm

I have never tried any narcotics as abortive medication. I've been everyday chronic for almost 5 years...I tried a calcium-channel blocker a year ago (don't remember the drug; I only stayed with it for 2 weeks) but had no change in my headaches.

I'm currently doing 75mg of Nortriptyline nightly before bedtime and I'm PF now for 7 weeks(only a couple late-night 6's or 7's and a few fleeting shadows during this time). These are the only 2 preventatives I've tried.

Has anyone out there tried Nortriptyline and had NO luck? Working great for ME so far. If you haven't tried it and want to try an alternative to narc's I can only say that it has been a blessed godsend for me. I'm going to stick with it for as long as it does the job.

If (or when) the Nortrip fails, I'm making a rainy day road trip to East Texas and goin' a'huntin fer some good ol' grain-fed Black Angus cow patties like we used to do fer kicks in the ol' days. As far as my body is concerned, I'd rather be shroomin' than narcin'!!! And I know exactly where to find them.

Title: Re: Success with narcotics
Post by eyes_afire on Oct 13^th, 2003, 10:42pm

Spanky,
To answer your question... Nortriptyline (aka Pamelor) was the first med I tried for CH (back when I was misdiagnosed). It did not help at all. But I'm glad it's helping you.

--- Steve

Title: Re: Success with narcotics
Post by hyperacktive on Oct 14^th, 2003, 5:13am

The only way I've found narcotic type drugs to be used effectively is to reduce the residual pain in the area surrounding the Trigeminal nerves - Opitcal, maxillary, mandibular areas of the face (ie. eye, cheek, teeth, and jaw). I've used them mostly following the KIP 10 downslide and resulting "aftershocks" from such high level attacks. I've never had any luck trying to use them to abort an attack, but they do seem to be put to good use after its over - if you experience that type of residual pain resulting from a major bout.

I did receive Demerol in the ER once after the staff had given me O2 high flow to no avail. After a couple of hours, I guess finally they couldn't handle looking at my horrid facial expressions any longer and shot me up with the Demerol....but its not something they normally are willing to do. Actually, I don't believe it did anything for my attack as it was almost over before they finally gave it to me. But boy did it ever work on the residual pain. :)

Some neuros may also tell you that extended use of narcotics may expedite transformation of episodic cluster to chronic cluster. There may be some validity to this theory but it also may just be rebound headaches that normally result from prolonged use and quick suspension of these type of drugs...who knows?

Most of these quacks can't seem to agree on any treatment. All the ones I've been to during my years suffering with CH all tell me different things. So most often I tend to listen to their ramblings with a suspicious ear. Maybe one day I will actually meet a doctor who suffers from clusters and has first hand experience dealing with them on a personal level. As for the rest...they don't seem to appreciate the condition as much as one might who actually suffers from this affliction.

Anyways...good luck,
hype

Title: Re: Success with narcotics
Post by brain_cramps on Oct 14^th, 2003, 5:24am

on 10/07/03 at 16:56:33, UnsolvedEquation wrote:

...Also, I think that 150 mg of Demerol is a HUGE dose let alone 240mg. Usually for me, 75 - 100mg of Demerol and I am out...

...PS I find it hard to believe that any ER doc would give anyone a 150mg dose of demerol. Maybe in a few doses but not just in one big dose like that....

Close to 20 yrs ago, demerol was the only thing that would come close to touching my HAs. (Actually, it would knock me out and I'd wake up with a HA.)

While only weighing around 150lbs, I was started out at 125mg. Usually, it would take 3 shots (total of 375mg) over a one-hour period to knock me out. Finally, one ER doc told me that "enough was enough". He had never seen someone my size that had built up that much of a tolerance. Needless to say, I found other treatments (pred, xanax, fiorinal, cafergot ... and later imitrex).

grant