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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Narcotic Pain Relief
        
(Message started by: stecky001 on Jun 11^th, 2006, 10:12pm)

Title: Narcotic Pain Relief
Post by stecky001 on Jun 11^th, 2006, 10:12pm

I know this is a controversal subject but as a CH sufferer for over 4 years I think I'm on my last leg here. Verapamil, DHE, lithium, Oxygen, melatonin, beta blockers, Belladona and the list goes on....As a chronic suffer (anywhere from 10 days to 3 months straight) I was curious if there was an opinion on narcotic pain treatment for these episodes. I have yet to go there (although the ER daughters want to immediately dope me up to shut me up) I just need some advice. The last time I was up at the Diamond Headach Clinic in Chicago they suggested Methadone...which scared the heck out of me. If anyone has used narcotics as a supplement to their preventative please let me know. At this point I am pretty much looking for any relief -- um let me clarify that...not the permanent relief :P

Title: Re: Narcotic Pain Relief
Post by Redd715 on Jun 11^th, 2006, 10:19pm

3.1.2 Chronic cluster headache

Description

Cluster headache attacks occurring for more than 1 year without remission or with remissions lasting less than 1 month.

O2 and imitrex injections abortive....check it out.

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Narcotic Pain Relief
Post by Guiseppi on Jun 11^th, 2006, 10:23pm

With all the usual warnings about long term pain resulting in a tendency to addicition etc etc, please do take all of that VERY seriously. With all that in mind, the only narcotic that ever helped me was fiorinal. Something about it takes the edge off of the pain and also seems to affect the mechanism of pain, shortening the duration of the head ache.

That being said, if you have an addictive personality be very careful with it, you can really start to like it. That's why I stopped using it. If nothing else has worked take a look at the alternative treatments on the other boards. My job makes it a non option for me but I read lots of success stories on the board. Wishing you peace.

Guiseppi

Title: Re: Narcotic Pain Relief
Post by chewy on Jun 11^th, 2006, 10:26pm

Quote:

As a chronic suffer (anywhere from 10 days to 3 months straight)

If I am reading this right you are not chronic you are episodic.

What have you tried other than O2 for abortives?

Title: Re: Narcotic Pain Relief
Post by stecky001 on Jun 11^th, 2006, 10:29pm

Thanks for the reply, I have tried Imitrex, Migranal, O2, Verapamil, Methoxyflurane, Calcium Channel Antagonists, Ergotamin , nifedipine and Occipital Nerve Steroid Blocade (not fun and obviously not at the same time). I have had my current CHRONIC headache for a year and half. Any other suggestions?

>:(

I don't mean to sound grouchy here but I understand what the difference of a chronic and episodic CH is. Personally my headaches started out as a once a season but has escalated into what is termed as chronic by my neurologist. I

Title: Re: Narcotic Pain Relief
Post by Guiseppi on Jun 11^th, 2006, 10:42pm

Don't apologize for sounding grumpy, these damned things hurt!!! I use lithium, 1200 mg a day when in cycle. I'm a 46 year old male, weigh about 190 pouinds. I use oxygen and cafergot to abort. Resisted trying lithium at first cuz i thougt it was a crazy person med. It's been my "magic drug for blocking these things. Good luck.

Guiseppi

Title: Re: Narcotic Pain Relief
Post by zuesthedog on Jun 12^th, 2006, 2:05pm

Well I am a 30 year suffer[ first episodic then chonic for the last 5 years. Anyway i have try about every med and procedure know to man, including narcs. At one point up to 1600 mil of demerol a week. also tried methadone. None of the narcs really knock the pain out however if I would take enough it knock me out. My wife told me even though I would be out cold I would still cry and moan in my sleep. I wouldn't wish narc on any one but when your at your end they could be the different between life and sucide. Other narcs I tried are stadol, morphine phentall ,dilatta. The answere to the next obvios quest ? is yes i did become addictived and currently useing methadone to wing myself off. Oh yea .I have foud what works for me to keep from doing any meds again, that is a trigeminal nerve stim. inplanted feb 2 .working great and keeps me away from narcs and emer. room visits . I wish you good luck and PF days John

Title: Re: Narcotic Pain Relief
Post by Charlotte on Jun 12^th, 2006, 3:26pm

Fiorinal worked best for me, also, but it was more a partial success, and the local docs don't like to prescribe it because it was so overprescribed in the 90's that many people abused it.

Have you tried kudzu? It seems to give me a systemic type relief, taking some of the pain off the top level.

I, too, am chronic. Mine varry and seem to fall into a pattern for between a day to a month.
When I started kudzu, a little over a month ago, I was getting hit every hour, something that happened only once before in 2001-2002 and lasted over 2 months. This time it only lasted a day - which was the day I started kudzu. The second day changed to 1 1/2 hours apart for about 4 days, then had a morning of back to back hits, then the next day started a pattern at a lower pain level and about every two hours. Today, it seems to be every 4 hours.

Charlotte

Title: Re: Narcotic Pain Relief
Post by jon019 on Jun 12^th, 2006, 3:58pm

Hi Stecky,

The very first med I was prescribed was fiorinal. All it did was make me dopey and in the same pain I was in without it.

Did not notice a steroid in your list. Prednisone taper worked for me in the past (and then verapamil) and the latest cycle busted with a solu-medrol IV and taper followed by the verapamil. O 2 for breakthroughs and a very tried and true (for me) double strength HOT coffee
gulped at first sign.

Hope you find your answer,

Jon

Title: Re: Narcotic Pain Relief
Post by Bob P on Jun 12^th, 2006, 5:02pm

Quote:

I have had my current CHRONIC headache for a year and half. Any other suggestions?

Is that one headache for a year and half?

All of the CH doctors say there is no place for pain killers in the treatment of CH. The headaches are too short in duration and are over before the pain killer can act.

Title: Re: Narcotic Pain Relief
Post by Kris_in_SJ on Jun 12^th, 2006, 5:38pm

Ditto to Bob P. For the most part, narcotics are ineffective, cause rebound headaches and can place a monkey firmly on your back.

Why take something that probably won't help and will possibly make things worse? Just my 2 cents worth.

Sorry you're suffering so much.

Hugs,

Kris

Title: Re: Narcotic Pain Relief
Post by Tom K on Jun 12^th, 2006, 7:24pm

X30(?) on the narcs. I went to the ER one night with a 10 that wouldn't break. They shot me up with Demeral and gave me O2. I don't remember if my HA went away or I just didn't give a damn. I do remember sleeping on the couch and getting hit about 5 hours later. I couldn't move in order to get meds into me and finally passed back out. I live around Chicago and won't go to Diamond...too many bad stories. I have a great doc and I travel 45 mins to see her, Diamond would be closer, but I'd rather go to a doc that listens and works on my plan with me. Just my $.03, due to inflation!! YMMV

Title: Re: Narcotic Pain Relief
Post by Linda_Howell on Jun 12^th, 2006, 8:20pm

Quote:

For the most part, narcotics are ineffective, cause rebound headaches and can place a monkey firmly on your back.

Kris just saved me the time of typing that, for the one billionth time.

Linda

Title: Re: Narcotic Pain Relief
Post by stecky001 on Jun 12^th, 2006, 9:20pm

Bob P: pretty much for a year straight. There are days that I can go with only one or two 15-20 minutes episodes but its definitely a consistant chronic.

Title: Re: Narcotic Pain Relief
Post by stecky001 on Jun 12^th, 2006, 9:27pm

I am definitely going to be thinking hard about the implications of trading one pain (CH) for a possible addiction. At times it seems like I am walking around in a daze whether I am on in a CH or not. Would like to not have my 7 year old daughter ask me daily if I have a headache - very emotionally traumatic. Nor do I want to have an addiction that does not allow me to enjoy the good days. Thanks all for your help and any other advice would be greatly appreciated.

Title: Re: Narcotic Pain Relief
Post by FramCire on Jun 13^th, 2006, 12:49am

1. If the tradeoff was addiction for pain relief, it would be a ough call but honestly you wont get consistant relief from pain killers (I dont think) to make the risk even worth it.

2. Have you tried melatonin? In the article linked above 9 mg of melatonin was the FIRST preventative that is suggested. Verapomil is 2nd.

3. Do you have the right mask for the O2. Just checking. There is info on the left side of this page.

4. I use ultracet sometimes when I am having back to back HAs with trigeminal nerve pain in my jaw. I only use it when I need a little relief and it curbs the nerve pain for me but does little with the HA aspect.

5. make sure you read the entire article Redd linked in the first reply. It is excellent and very extensive.

Good luck. Again that article will give you a lot of ideas and read the rest ofthe site for alternative therapies.

Title: Re: Narcotic Pain Relief
Post by Katherinecm on Jun 13^th, 2006, 3:29pm

I am in the 25% that narcotics do help. I realize all of you are trying to help b/c narcs don't work for you, and addiction (especially to something as strong as methadone) is something to be avoided. But they do help SOME (25%) of CH sufferers, and the people they do help they help A LOT. Just because it doesn't work for you doesn't mean it won't work for someone else.

I stick to oral meds, which doesn't get rid of them but does knock it down, from say a 10 to a 6. And I only take them when I have a Kip 9 or 10, and even then try to limit to the worst attack every other day or so. Those who say they don't work fast enough to help are flat out wrong. If an attack averages 45 minutes or longer, even if a med takes 20 minutes to work it still makes a huge difference. I have noticed that if I swallow the pill with a Red Bull or similiar energy drink, it works in less than 10 minutes (faster than trex) and is much more effective. And no, red bull does not work alone. Narcotics don't cause rebounds for me. Imitrex & similar drugs definitely do, and don't work well enough to suffer the side effects (knock something down 1 point on the Kip scale, only to have worse attacks in the next several hours). Oxygen doesn't work. As someone who gets 3-8 attacks throughout any given 24 hour period (more if I try Trex), combined with an intractible migrane for well over a year now, pain control is neccesary for me to avoid severe depression & suicidal thoughts. The idea that they don't help me at all is absolute BS! While obviously addiction should be avoided, we are not stecky's doctor, and we don't know her emotional state. Chances are they had a good reason to suggest what they did. I am not addicted, but I would take addiction with pain control over suicidal thoughts any day at all. As patients we have a right to have our pain under control.

Having said that, methadone is extreme at it's best.Stecky, I would research all other options first, unless you're so depressed you can't handle it anymore.

Title: Re: Narcotic Pain Relief
Post by FramCire on Jun 13^th, 2006, 3:46pm

katherine,

I was unaware that 25% get relief from oral narcotics. The paper I read said that narcotics have no place in the treatment of CH because those that do work do take too long. I do use Ultracet but not for the HA (the nerve pain that accompanies the HAs).

I did get relief 1 time from narcotics. They hadn't diagnosed me correctly and the doctor couldn't stand how I looked so he shot me up with a marcotic and the HA went away. It might have been the narcotic or that the HA ended anyway.

Anyway, thanks for the info. I think we all are for pain relief in whatever form it takes. A lot of people use things with bad side effects to get the relief because it is worth it. (I used topomax 100mg/day)

I'd still try melatonin before I went to a narcotic though. It was a horrid first dfew nights on melatonin but then it got MUCH better and melatonin has had clinical results and is MUCH safer.

Title: Re: Narcotic Pain Relief
Post by Tom K on Jun 13^th, 2006, 4:01pm

on 06/13/06 at 15:29:28, Katherinecm wrote:

I think most CHers fit into the 25% rule. 25% of everyone gets relief from some med treatment. Not everything works for everybody.

Title: Re: Narcotic Pain Relief
Post by gore2424 on Jun 13^th, 2006, 5:06pm

Hello all first I must state that everyone is different. I am chronic since Nov 1999 before 17 years spring and fall only. Since 1996 tried 67 different meds in many combos O2 stopped Trex stopped and others failed. Had H/A 24/7 7 days a week 365 days a year. So in May 2002 I tried the trigeminal being cut no turning it back. Numb on right of face for life and only got about 4 months relief. Now I use a fentynal pain patch and it keeps me at base line of a 2-4 h/a 24/7 and am allowed 12 per month 10mg morphine shots for the bad times I must change patch every 72 hours and this has been working for me since the fall of 2002 I am on SSD because mostly of the side effects of the pain med BUT I mow my yard and even sometimes my dads yard if not alone just in case and I drive 3-4 times a week to store or other close by places.
So its like I had to do something and it has been working out for ME and everyone is different so its what you and your body will tell you if it works for you or not. I know about the addiction part because I took stadol for about 6 months but took myself off cause I was lieing to get more (broke bottle ,someone stole it out of car) I was buying it taking off lid putting 1/2 water in it to make it last longer and I could take more so I knew it was wrong and what it was doing to my mind body and soul ok I have rambled on too much Terry

Title: Re: Narcotic Pain Relief
Post by mynm156 on Jun 13^th, 2006, 9:44pm

Ya Know it REALLY chaps my A$$ when people just stand up and say Narcs dont work. Lets face it NONE of us are the same! What works for one does not work for the other. However, if narcs didnt work at all for ANYONE then it probably would even be referrenced. So they must help some in some small way or another.

Some people due to insurance restraints can only get 6 trexes a month. Ok well if you are chronic your screwed! Ever check see the price of triptans without insurance?? Hey if it even helps! I say its worth a shot. Hell how many of us accept the fact that there are illegal ways to treat these! I do. I know too many people who have been helped by them. I also know a good amount of our brothers and sisters have had some success with Narcs. Try it, if it works or helps then hopefully you will know just how PRECIOUS it is and not abuse it.

Good Vibes to all

Your Brother in pain,

mynm156

Title: Re: Narcotic Pain Relief
Post by Katherinecm on Jun 13^th, 2006, 10:59pm

on 06/13/06 at 21:44:22, mynm156 wrote:

Ya Know it REALLY chaps my A$$ when people just stand up and say Narcs dont work.

mynm156

Ditto!

Title: Re: Narcotic Pain Relief
Post by Radha on Jun 13^th, 2006, 11:43pm

i doubt any of you will answer my plea, but i am asking anyway, my doc is very close minded and wont give me anything other than imitrex and relpax and ultram, and i really want to try morphine and percocet or even dilaudid for the unbearable times, i have no plans or ideas of taking them often because the last thing i want is to get addicted, do any of you know of any websites or a way to get these drugs without a prescription? i hope someone will help me and not just say go to a pain specialist, because i cannot travel at all, thanks
radha

Title: Re: Narcotic Pain Relief
Post by FramCire on Jun 14^th, 2006, 6:24pm

Unless you can find a doctor to agree with you, I don't know of any other way. Unfortunately, the clinical trials have shown that narcs don't work any better than a placebo (or at least to a statistical significance).

Unfortunately, unless your doctor has specific success with narcs and CH, I don't think you'll find one who will give it to you. Trust me, you don't want the "drug seeker" label either.

Your best bet is a nuero or pain specialist (I know you can't travel, but it is your best bet, sorry).

There are tons of other things to try. Use Redds article and bring it to your doctor. There are MANY things to try as abortives. (it does suggest narcs wont work though).

I hope you can find something to work. You might also want to try the alternatives you find here.

Title: Re: Narcotic Pain Relief
Post by Radha on Jun 14^th, 2006, 11:27pm

thanks for taking the time to reply ,
radha

Title: Re: Narcotic Pain Relief
Post by AussieBrian on Jun 14^th, 2006, 11:44pm

Rad, just make sure you walk in with both eyes wide open. I'm one who got serious relief from a narcotic called pethidine but whether it actually fixed the HA or just stoned me to the point of insensibility I don't know.

I do know that the next day I'd be terribly woozy and far less able to deal with the next attack. I also wonder if I wasn't starting to look forward to them so I gave it away completely.

Good luck with whatever decision you make but please, please, please take care.

Title: Re: Narcotic Pain Relief
Post by Pinkfloyd on Jun 15^th, 2006, 12:38am

Wow, a narcotics thread is almost as contentious as a shroom thread. People sure do throw out some questionable certainties. ::)
I'll see if I can get everyone mad at me... :-/

Funny how some of the people that chastise clusterbusters for holding to some rules about the need to detox.....stating that "there are no rules and everyone is different" but are so willing to apply hard and fast rules to narcotics.

Just as mushrooms, or 02, or imitrex won't work for everyone, narcotics do work for some people. C'mon, these aren't your teenage kids you're lying to here.

The rule that "clusters don't last long enough for narcotics to work" conveniently forgets that clusters last from 30 minutes to 3 hours. Stadol can take effect in 15 minutes. Granted...in most cases, this is true to the point that the little relief they do *usually* give, if any at all, won't come around fast enough to make it worth the risks, but....not in all cases.
I really think the medical community puts out this mantra so that everyone doesn't end up asking for, and getting, narcotics as one of the first things to try. It does, and should, take some qualifying before getting to the point of weighing the risks/benefits. For most people, there are better options. I do believe if they didn't keep the numbers to a minimum as they do, almost all of us would have had bad trouble with narcotics, early on in our cluster lives.

Still (and I know some of you hate to hear this but) less than 2% of people that use properly prescribed narcotics for legitimate pain relief, become addicted. Long term they almost all become either dependent or tolerant, but......not addicted.
Tolerance, always needing more to get the same results, is NOT the same as addiction, and if people don't know the difference, they shouldn't be giving medical advice.

Stecky,
I find it hard to believe Diamond Headache Clinic suggested methadone...for clusters. Not that I didn't try methadone for MY clusters, but I sure wouldn't ever have gotten it through them. Who is your doctor there?
Did they suggest methadone to help get off other narcotics or did they suggest it to "treat" your clusters?

Zues,
Your trigeminal nerve implant is working great....and has ended your need for narcotics.....but you're still on methadone??? How do you know the stimulator is working as well as you think it is?
You don't consider methadone, a narcotic? Please explain.

Tom,
Diamond certainly isn't for everyone, just as no clinic or doctor is for everyone, but if you get the right doc there, they do know clusters. People don't HAVE to check into the in-patient hospital and they don't HAVE to use the histamine treatment.
If you're happy where you are, it's worth a 2 hour drive, or longer, IMHO. Its tough to find anyone that is good, and you can have a good working relationship with.

~peace out
Bobw
P.S. at least shrooms aren't narcotics ;;D

Title: Re: Narcotic Pain Relief
Post by Pinkfloyd on Jun 15^th, 2006, 1:02am

on 06/13/06 at 23:43:10, Radha wrote:

i have no plans or ideas of taking them often because the last thing i want is to get addicted,

Famous last words. :(

on 06/13/06 at 23:43:10, Radha wrote:

do any of you know of any websites or a way to get these drugs without a prescription?

There are other problems involved here. if you don't get them by prescription, you don't have a doctor prescribing the "correct" amounts. You don't have a doctor, your doctor, checking for possible contraindications with other meds or other medical problems you may have. You don't have your pharmacist double checking the same things. You don't have your doctor helping you not become addicted. You don't have a doctor to help you when you become tolerant.
You could get something other than what you think you're getting.
Morphine or Dilaudid? Do you know how much you should take, even if you find a way to get it through backchannels? Do you know how much you can take without dangerously slowing your respirations?

I don't blame you for asking. We all search under every rock we can find, for relief. But, some things carry many more hidden risks than others.
It would be better to find a rock with a different doctor under it, than online narcotics, IMHO.

Bobw

Title: Re: Narcotic Pain Relief
Post by stecky001 on Jun 15^th, 2006, 10:11pm

No - episode itself has lasted over a year - however I will have seven to ten episodes lasting about 15 to 30 minutes. Some actually go into hours but there is always some small break.

Title: Re: Narcotic Pain Relief
Post by stecky001 on Jun 15^th, 2006, 10:24pm

"Stecky,
I find it hard to believe Diamond Headache Clinic suggested methadone...for clusters. Not that I didn't try methadone for MY clusters, but I sure wouldn't ever have gotten it through them. Who is your doctor there?
Did they suggest methadone to help get off other narcotics or did they suggest it to "treat" your clusters?
...

Dr Freiteg is my neuro in Chicago. Methadone was actually suggested as a treatment. I refused becuase truthfully I would prefer to stay some what coherant (at that time), I haven't tried meth nor do I utilize any sort of narc except for an occasional nubaine shot. How did the meth help your Clusters?

Title: Re: Narcotic Pain Relief
Post by Pinkfloyd on Jun 16^th, 2006, 2:03am

on 06/15/06 at 22:24:23, stecky001 wrote:

I refused becuase truthfully I would prefer to stay some what coherant (at that time), I haven't tried meth nor do I utilize any sort of narc except for an occasional nubaine shot. How did the meth help your Clusters?

It didn't help much. I was on a low dose which helped keep the attacks a bit lower on the pain scale. I was getting a one hour attack, every two hours, around the clock, before/when I went onto it. Yes, 12 attacks a day, around the clock, so I wasn't "coherent" much of the time anyway. The low dose was pretty much unnoticeable, as I remember.

Bobw
Tell Fred I said hi next time you see him. Ask him his thoughts on Clusterbusters.

Title: Re: Narcotic Pain Relief
Post by Tom K on Jun 16^th, 2006, 9:27am

Not trying to talk down narcs...actually I'm in the group of try anything until you find something that works. My doc is talking about giving me the Actiq pops. I'm trying Zoloft, Petadolex with a 2.5mg Zyprexa at night. Melatonin stopped putting me out that is why the Zyprexa. Granted that these aren't "normal" meds that everyone sticks by, but if they work, then all the better. Verap stopped working this cycle so I'm totally open for whatever works. Personally, I don't have any experience with Diamond, I was just passing on some info that I had heard from others not in the CH family. If they work for you, then go for it.

Title: Re: Narcotic Pain Relief
Post by Richr8 on Jun 16^th, 2006, 11:37am

Just to weigh in, I have used persoset (oxycodone) on rare occasions in cycle. I know it did not help with the pain or the frequency, but it sure made me not care for a while. Anyway, due to the addictive nature of the drug, I only used it on very rare occasions when I was at my psychological limit and needed a break.

Title: Re: Narcotic Pain Relief
Post by CHTom on Jun 16^th, 2006, 3:41pm

on 06/16/06 at 09:27:08, Tom K wrote:

Actiq works for me in reducing the pain; I use them for acute, severe attacks and take dilaudid, slow release, which have, for me, reduced the number of severe attacks that I have daily. The DBS surgery that I had last September appears to be working, finally, at 5 volts and I have been able to reduce the amounts of dilaudid and Actiq that I was taking before my surgery. It is too bad that DBS surgery is still considered "experimental" in the US-it was worked well in Europe and although the initial cost is high, about $50,000, over a chronic CHers lifetime it will save the insurance companies money (120 Actiqs cost about $3000, which, at 4 a day, is a month's supply; successful DBS surgery would pay for itself in about 1.5 years by ending the need for Actiq and dildaudid and other narcotic pain meds, not to mention bringing relief to chronic CH people and they would be able to work and more productive).

Title: Re: Narcotic Pain Relief
Post by Karla on Jun 16^th, 2006, 9:16pm

I was on methadone for a year. I could function as long as I was awake which was long at all. lol I switched over to the duragesic fentanyl patch and I have been on it for years. It has keept me pain free and able to function and not be so tired. I can stay awake and do things yeah!!!

Title: Re: Narcotic Pain Relief
Post by purpleydog on Jun 22^nd, 2006, 2:49am

on 06/15/06 at 00:38:19, Pinkfloyd wrote:

The rule that "clusters don't last long enough for narcotics to work" conveniently forgets that clusters last from 30 minutes to 3 hours.

Still (and I know some of you hate to hear this but) less than 2% of people that use properly prescribed narcotics for legitimate pain relief, become addicted. Long term they almost all become either dependent or tolerant, but......not addicted.
Tolerance, always needing more to get the same results, is NOT the same as addiction, and if people don't know the difference, they shouldn't be giving medical advice.

I agree. There is a difference between addiction and tolerance. And quote the statistics all you want. They don't fit me or my experience, or many other's experience. Let me hear what you know, not what you read...

Title: Re: Narcotic Pain Relief
Post by unsolved1 on Jun 22^nd, 2006, 11:57am

stecky, your desrciptions of episode lengths are confusing. Using your own statements, I still can't tell if your chronic or episodic. [smiley=huh.gif] I'll just take your word for it.

The Diamond clinic also put me on Methadone before. I only took a few doses and felt no relief or effect at all. Now I use Stadol IM injections. The pain meds only work for certain headaches. If it's a major attack - forget it ! (for me)

Was wondering what dose Actiq you are using CHTom. Others thinking of using this should know it is a very powerful med that should only be used by opiod tolerant patients and should begin at a very low dose (200 - 600mg) to see it's potential affects. Actiq can/will kill if abused or mixed with certain other drugs.

After saying all that ... I still believe narcs have a very limited role in CH treatment.

Stecky ... be careful of what you may be getting yourself into.

Goodluck

UNsolved

Title: Re: Narcotic Pain Relief
Post by Pinkfloyd on Jun 23^rd, 2006, 2:55am

on 06/22/06 at 02:49:02, purpleydog wrote:

I know you shouldn't believe everything you read, but it's still a pretty good way of learning things.
What did I say that wasn't true?

Are you saying that because you and many others have had bad experiences with narcotics, no one else should ever try them?

Yes, 2% of the millions of people that use narcotics to treat pain, does add up to "many" not matching that experience. So? I'm not sure what you're trying to tell me.

Are you saying that 2% figure is not correct? Are you saying that because 2% do become addicted, the other 98% shouldn't use them?

I'm not, and never have, advocated using narcotics to treat clusters as a 1st, 2nd or even 3rd line of defense. All I know is that even if they only help 2% of cluster sufferers, then people shouldn't completely discount and demonize them.

Bobw

Title: Re: Narcotic Pain Relief
Post by CHTom on Jun 26^th, 2006, 4:45pm

on 06/22/06 at 11:57:22, unsolved1 wrote:

I use 600 microgram lozenges, 1-6 a day, depending on how my pain is doing. I've been virtually pain free for the past three weeks since I had the voltage in my DBS device increased to 5 volts-maybe I have hit the right number regarding electricity; this is the first time that I've had 3 pain free weeks since my chronic CH returned in April 2002; I think that the operation works!

Title: Re: Narcotic Pain Relief
Post by LeLimey on Jun 26^th, 2006, 5:22pm

You're using narcotics every day but you aren't in pain?
WHY???

Title: Re: Narcotic Pain Relief
Post by unsolved1 on Jun 26^th, 2006, 7:48pm

I tried the 600's (Actiq) but they made me itch with little to no relief.

Bob brings up many good points. The more Morphine, Demerol, Stadol, and other narcotics that I use, the less it helps. They couldn't knock me out before I had my port implanted and I think I had 200mg of Fenatyl and a dose of Verset (sp). I was wide awake, like I took nothing at all. 100mg of Demerol IV used to knock me out ... now it's like an aspirin. :-/

UNsolved

Title: Re: Narcotic Pain Relief
Post by chewy on Jun 27^th, 2006, 7:44am

Quote:

You're using narcotics every day but you aren't in pain?
WHY???

That answer is pretty obvious.

Title: Re: Narcotic Pain Relief
Post by LeLimey on Jun 27^th, 2006, 7:48am

Yeah Chewy I know.. but I wanted to make him say it! ::)

Title: Re: Narcotic Pain Relief
Post by Pinkfloyd on Jun 30^th, 2006, 11:52pm

Not looking to reopen this can of worms. Just thought this should be in the record on this thread. Especially since its information taken directly from cluster sufferers..and not from those that that treat them or have hidden agendas.

From the medications survey on this site: Click the medication survey tab on the left and scroll down to the "view results" icon.

Narcotics (abortive)
Haven't tried narcotics 1596 44%
Works every time 193 5%
90-100% effective 205 5%
70-90% effective 320 8%
1-70% effective 386 10%
Worked, then stopped 263 7%
Did NOT work 613 17%

Now, although this survey was set up to show percentages that don't mean anything, (who designed this anyway?) you can look at the numbers and recalculate interesting results.
If you remove the people that never tried narcotics and calculate their effectiveness based on results from only people that DID try them, you get these results:
(Since 1596 people did not try them, why put them into the calculations of how effective they are/aren't?)
So, removing these 1596 people, a total of 1980 people tried them.
Of these, 718 people found them to be at least 70% effective. Thats 36% of the respondents that found them at least 70% effective.

613 out of the 1980 found them completely useless. thats 31%.

More people found them at least 70% effective than people that found "no place for narcotics in the treatment of clusters"

If the 2% figure is correct about how many would have trouble with addiction, that would be about 40 people out of the 1980 had trouble. I'm not sure if that would be the case since cluster people usually give up on things that don't work, pretty quickly, but let's assume that 2% is still accurate.

Are the 40 addictions are worth it to have 718 people find relief. I guess the risks vs benefits equations come into play. The people that say narcotics have no role, probably say the risks outweigh the benefits. I'm sure the 40 would agree, and the 718 wouldn't.
OTOH, I'm not sure the 40 and 718 are totally separate numbers. The 40 addictions might partly fall into the 718 that found relief. "I may be addicted but I am getting relief" scenario. I've seen quite a few people say they had to stop when they felt they were beginning to see signs of trouble ahead, addiction-wise. These 40 hypothetical addictions aren't all sleeping in refrigerator boxes under a bridge. Hopefully none of them are.

Lots of questions with an assortment of answers.
Learn as much as you can, and choose your weapon.

Bobw

Title: Re: Narcotic Pain Relief
Post by mynm156 on Jul 1^st, 2006, 5:06am

Nice post Bob!! Very Nice Post!! [smiley=bow.gif]

Title: Re: Narcotic Pain Relief
Post by unsolved1 on Jul 1^st, 2006, 5:26am

Yes, another great post from Bob ;)

Thanks ! It was a good read !

UNsolved

Title: Re: Narcotic Pain Relief
Post by Summerbabe on Jul 19^th, 2006, 10:06am

:D hi there Stecky, I am an episodic sufferer, I have been prescribed it all as well. As of now, I am on verap, Immitrex, and o2. I was prescribed Fentanyl in a lollipop form, for when I get hit on a kip10 , well now here is the awkward part of these things, hard to suck on these things during an attack however they did abort the devil!!. They are sweet in taste and very potent, I personally think too strong and I was banging into walls and shit. I WAS LOOPED OUT OF MY TREE ! I told my neuro , no thanks, When I went to pick up the script the pharmacy tech pulled me aside for a " consult" on the pops. Ok so she scared the shit outta me with her words and all. So what I am geting at is , fentanyl can be prescibed for ch sufferers and according to myself and a few others it works for the pain on kip10 ,9,8. They do have patch form for 72 hours,not as strong as pops and works!,and is also an option, it is trial and error in this battle to see what works for you during this terrible ordeal. You will find it though and then next cycle maybe different and treatments may need to change . I think my neuro just prescribed a strong dose for me personally. We are all different , there are doses of fentanyl out there that are in patch form and gradually enter your system and can work. Print out may articles on different meds and bring to next visit or schedule a consult with neuro for meds. Good luck and I hope you find something to help you. I am wishing pfdan, [smiley=hug.gif] All my best, 8) Summer

Title: Re: Narcotic Pain Relief
Post by Summerbabe on Jul 19^th, 2006, 10:22am

:D Great article you posted "PinkFloyd" Bob, amen ....you are a smart man. :-*

Title: Re: Narcotic Pain Relief
Post by Berbank on Jul 19^th, 2006, 1:04pm

Narcotics work for some people and not for others and the odds are greatly against you becoming a junkie if they do work and are administered under medical supervision, preferably at a pain clinic. You seem to have tried most of the conventional drugs without success, so if you find a neurologist or pain clinic that is willing to try narcotics for you, then do it. You won't become a junkie overnight and you might get some relief-you have everything to gain and nothing to lose. Some of the same people who tell you not to try narcotics under medical supervision will tell you to try hallucinogenic mushrooms and other such illegal substances without medical supervision-a strange way of treating a serious medical condition. Good luck and TTFN :)!

Title: Re: Narcotic Pain Relief
Post by tommyD on Jul 19^th, 2006, 5:30pm

Berbank -

The odds are greatly against narcotics working to relieve cluster headache, but they do seem to work for some.

The odds are greatly in favor of tryptamines such as psilocybin working to relieve cluster headache, tho for a few, they seem not to work.

The odds of opiates and opiods causing addiction when used for chronic pain under supervision is low, but it is still there - about 10 to 15 percent, if I recall.

The odds of being addicvted to tryptamines is nil - zero - nada - zip.

The odds of accidentally overdosing fatally on opiates, if you stick to the prescription, are low.

To overdose on psilocybe muchrooms would require eating your body weight in dried shrooms - in other words, it is virtually impossible.

And so you see tryptamines are not such a strange way of treating vascular headaches after all. In fact, it could very well be the best way yet known.

Call me strange, but I would say this: If you suffer from a psychosis, avoid tryptamines. If not, try the tryptamines first. If they fail - and they sometimes do - and all else has failed, then give the opiates a shot.

I don't see narcotics use as somehow immoral or some kind of sin because some drug warrior said so. Drugs are drugs - no sin involved. If it works, go for it. It's just that there are better ways to get pain free.

-tommyD

Title: Re: Narcotic Pain Relief
Post by trisha on Jul 19^th, 2006, 8:44pm

Was just wondering what meds people take?
how much?

i have had ch for about 4 years. i finally (thanks to this site!!) found 02 and got that about 2 years ago and at 8lpm i "usually" get relief it 5-10 minutes. sometimes it reoccurs again.

I also have migraines (lucky me) so i save my trex for that but they haven't been working either.

I have NEVER been to the ER for a headache cause for 1 i live about an hour drive away and i just wouldn't want stadol or whatever other stuffs they'd give you.

I hated abortitives (too many side effect and didn't seem to work anyway. anyone else have that?

My DR (i only have 1) gave me fioricet w/codeine and 3 scripts of 30 each last me about 6 months. i take about 4 a week. Just wondering if that is too much?

If i'm not home I have no 02 and take the script which works. i don't believe in saying narcs dont work for them when w/out my 02 i'm down for 2 hours??

wishing pf days (and nights)
and if anyone knew has not tried 02 please please go get it. it's not as scary as it first seemed to me.

Title: Re: Narcotic Pain Relief
Post by stevemor909 on Jul 30^th, 2006, 3:32am

I've been a Chronic headache suffered since age 10. Headaches have dominated my life almost daily, and there has never been a known cause. I have had every test in the book. I have tried ever known medication with little relief. About 10 years ago I was taking so much Aleve, Advil, etc over the counter, I was eating away my stomach lining. Then I was given a prescription for Fioricet with Codeine. I had actually tried Fiorinal before (but I had to take too much of it, and it caused rebound headaches). I had also taken Codeine, but it only relieved part of the pain. The Fioricet with Codeine is the best medication I have ever taken, it really does the job. The last 10 years, I have finally been able to partipate in life again without missing so many days of work, events, spend my time being sick, and being miserable and unproductive. The only thing you have to be careful with is never to take the medication for the affect or to increase the dosage. This will not only not be effective but will form physical dependence and give rebound headaches (which has thus defeated the purpose). But if you use it ONLY for the headaches and take the lowest possible dose, it is very effective. I cringe to think of doing without it, and going back to life the way it was. Fortunatly I have had a good doctor who knows my history and believes it's helping me (rather than hurting, weighing the pros and cons of the situation). Although many things agervate my problem (such as sleep inconsistancies, hitting my head, loud music, stress, etc) if I watch the triggers that make the headaches worse and take the medication, I can live with it and be productive. I have no idea why I get constant headaches and why they are so severe, but at least I can live a normal life and overcome the problem (and not let it keep me from living a productive life).

Title: Re: Narcotic Pain Relief
Post by Weatherman on Jul 31^st, 2006, 12:51am

I'm one of those that narcs have never worked for. I've tried them all and I just end up all doped up and still in pain. Pred. taper, varapamil, kudzu, taurin melatonin method has worked very well for me for my last 2 cycles.

One interesting note...my doc is pretty keen about ch and knows me well enough to be quite frank with me. A few weeks ago when I was getting hit hard, I went to see him so I could get started on a pred taper. At the end of our meeting he asked me "do you want anything else for the pain? Percocet, imitrex, oxycontin or whatever?" When I told him "no, that stuff never works for me" he responded with "that's the right answer. I was just testing you to make sure you weren't just trying to get drugs because narcs don't work on ch". Now I know that's not true for everyone. Just thought you might find that interesting coming from a doc. I guess he like most docs have to deal with people that will do or say anything to get drugs. He was pleased that I was not one of them and labled me as a "true cluster case" because I refused those drugs.
Just goes to show that docs opinions differ quite a bit.

My doc has been a blessing for me and his feelings about narcs are fine with me because they don't work for me anyway. But for those of you where narcs work, a doc like mine could be a problem.

Well, here's hoping you ALL are either with a doc or can find a doc that will provide you with the approach that works best for YOU.

Good luck all and God Bless!

Doug

Title: Re: Narcotic Pain Relief
Post by LeLimey on Jul 31^st, 2006, 5:16am

Just wanted to point out that imitrex isn't a narcotic, its a triptan and as such one of the few drugs that does provide almost immediate relief for CH!
I can see how you made the mistake Doug, I'm not getting at you, just pointing out that Imitrex is not a narcotic for the benefit of those who read but never post
Take care
Helen

Title: Re: Narcotic Pain Relief
Post by Pinkfloyd on Aug 1^st, 2006, 1:06am

on 07/31/06 at 05:16:44, LeLimey wrote:

for the benefit of those who read but never post

Helen

As opposed to those that post but never read. ;;D

I've noticed a few of those around 8) Tough to make a point with them.

Bobw

Title: Re: Narcotic Pain Relief
Post by CrazyDog on Aug 1^st, 2006, 4:14am

Each of us is different!

For myself right now I have a three step plan:

1) First I need to be properly prevented (as of right now VERAPAMIL and DEPAKOTE).

2) I also need to have an abortive (as of right now ZOMIG ZMT seems to be working).

3) Lastly I need to have something for pain management; anything with Tylenol has a tendency for rebound or MOH, recently switched to VICOPROFEN and is working well.

So preventative, abortive, and pain management are all necessary components in my treatment.

The pain management can be difficult to discuss both with doctors and other headache suffers. But if that’s what works for you then you need to be clear about it, it’s you that will suffer, so don’t let others stop you from getting the treatment you need.

Title: Re: Narcotic Pain Relief
Post by purpleydog on Aug 2^nd, 2006, 6:57pm

on 06/23/06 at 02:55:24, Pinkfloyd wrote:

Sorry Bob, I posted, then never came back to this thread...

What I meant by my post was... I am agreeing with you. Becoming dependent and tolerant to narcotics has nothing to do with addiction. They are two different things. And my experience is different from anyone else's, just as everyone else's experience is different from mine. I don't understand why we all understand how different we all are when it comes to meds for CH, but when the subject of narcotics comes up, everyone is an expert, whether they have tried them to control CH or not.

Therefore, don't tell me what you read... tell me what you know... from your personal experience. Just because you read that narcotics doesn't work for CH doesn't mean it's true.

To quote Kris_in_SJ...

Quote:

Why take something that probably won't help and will possibly make things worse?

This can be said for many drugs tried for CH, wouldn't you say?

Title: Re: Narcotic Pain Relief
Post by rickyshot on Aug 4^th, 2006, 9:49am

Another good thread with good posts from all sides. I am glad it did not reduce to flaming and war.

I am not interested in debate but facts as one knows it and personal experiences to make my choices for treating my ch. and chronic migraines.

Pink Floyd you are the bomb.

My experience with narcotics is this. I have tried, Morpinine, Stadol, Perodan, Percaset, Fiorinal and others I cannot remember in ER and outpatient. I have had some relief with a long duration of a kip 8 or higher ch with them but get stoned, and bad paranoid dreams which I did not enjoy. I also had trouble functionning for two days. The only one I have success with is Fiorinal sometimes. The rest were nightmares for me. Now Fiorinal helps some of my migraines but nothing for aborting CH.

The biggest success I have had was non narcotics as in DHE, Prednisone and oxygen. Preventative Calcium channel blocker as in Sibeillum.

I have always made the comment in saying I would use liquid Drano if that helped. WE all know the feeling of desperation here so please let us not judge other peoples method of treating this. Like it has been said what works for one does not work for the other.

To the poster who is considering narcotics, do your homework, read, read read and good luck to you. I hope your experiences will be better than mine.

I for one am going the clusterbuster route and will let y'all know how that works for me. Save your moralizing cause I am a believer in Jesus and never even smoked a joint but years of ch and chroinic migriaines has led me down the path of far more dangerous substances IMO all perfectly legal.

I won't get into law and governement because as far as I am concerned government has no morals and what that say is illegal and immoral one day is fine the next as long as they control it.

ANYTHING can be abused. The problem is usually not the substance. The problem usually lies in the complex character of people. I work in the medical field and have for years. You would not believe the abuse of OTC drugs alone and the deaths from that. And these things are perfectly legal and "moral". Most things are two edged swords in life. Drugs natural, narcotic and man made have great potential for helping mankind. The other side of the coin is that there are those who have and will seek them for recreational purposes and abuse. We can't throw out the babies with the bath water. Most of the people who post here are intelligent and have been going through this a long long time. I pray each of us finds our own answer.