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UN_SOLVED
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Narcotics question
« on: Jun 2nd, 2004, 5:01pm » |
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I know that most all of us feel that narcotics will NOT help with CH pain. I have yet to find anything that will either, except when given in a mass dose via IV that completely knocks me out.
My question:
Does anyone think that "Actiq lollipops" will help ease the pain of a Kip 7 or less ? Has anyone else tried this or know anyone who has ?
I DON'T think that it will help me with a full-blown cluster, but i'm trying to figure out a way that I can get by without using as much Imitrex as I do now. I thought about asking my neuro on the 11th if he thinks this might help any at all.
Any and all comments welcomed
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thomas
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God, I remember a guy on the old board who used lollipops for his ch........ I will see if I can dig it up in the archives.......
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Jimmy_B
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Actiq "Lolli-pops" used to be Black-boxed warning'd for "Cancer Patients...Only". It is very rare that a Doc would write a script for it for any pain other then cancer & especially pain above the neck..(Head Pain)...that said it is also only to be used by patients that are already opioid tolorant or using at least 50mcg duragesic or the eguivalent of another opioid.
If you want to try a "stronger" drug...I would first ask your Doc about 25mcg Duragesic patch...that way, at least you will know if Fentanyl will help your clusters. A few people on this message board have had great luck with the patch...but you'll have to be real careful, as it is a narcotic. If you've had trouble with addictions before...I would stay away from it.
Jimmy
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| « Last Edit: Jun 2nd, 2004, 6:08pm by Jimmy_B » |
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FZfan
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Re: Narcotics question
« Reply #3 on: Jun 2nd, 2004, 6:22pm » |
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I remember the same post I think, thomas, but i thought it was a gal. Can't find it but I'm not a good searcher. I seem to recall the poster reporting success with them but I don't recall the details.
I don't believe it is wise to recommend narcotics. I will relate my experience with oxycontin. I used it during two cycles back in 2001. Used it sparingly, when I really felt I needed a break, maybe two or three times a week. It did provide the much needed relief, although it did so by buzzing me for several hours. Not that that is necessarily a bad thing. I personally had no problem with it.
Hope you find something that helps you soon. I know you've been suffering terribly.
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forgetfulnot
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It's a fairly simple deal, when nothing else works you can wallow in your pain or try the various narcs. Do I support that? No. Re read the first part.
Lee
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Karla
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Re: Narcotics question
« Reply #5 on: Jun 2nd, 2004, 7:13pm » |
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I agree with a prior poster. I would try the duragesic patch first. There are a handfull of us that it has helped perform miricles in blocking the pain. No buzz feeling either.
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Karla
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pubgirl
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I know you are in serious trouble, and desperation makes us want to try anything, but please think again about the Actiq and read up about it. It is serious shit. People have posted on here about it before, but mostly they were individuals who were using narcotics heavily already, and you know what most of us think about that road.
Wendy
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UN_SOLVED
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Re: Narcotics question
« Reply #7 on: Jun 2nd, 2004, 8:14pm » |
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on Jun 2nd, 2004, 6:07pm, Jimmy_B wrote:| It is very rare that a Doc would write a script for it for any pain other then cancer & especially pain above the neck..(Head Pain)... |
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I've already been offered this for a treatment. NOT from MHNI (They are anti-narcotic)...but from another Pain Manangement doctor. I turned it down and decided to stay w/ MHNI doctors. It's been a year and not much in the way of relief.
The pain management Dr. wanted to give me these "raspberry-flavored lozenge's" along with Methadone. (?) I've already been warned that the Methadone is a hard thing to get off of once you get started. Addiction would be a concern...BUT pain management is a MUST.
 Feeling like it's almost decision time
Looking for relief
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Alan
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Well, well, well. Back to this old question again.....
Simply put, if you need it, take it. Period. I can not over-agree that there are times when pain management outweighs the fear of addiction.
I myself did wrestle with this same dilema about three years ago. I did my reseach, and asked my Neuro to put me on Oxycontin - which he did, and had no issues with it. He also perscribed me the Fentanyl (Actiq) lolli pops to those extreme flare ups. I continue to use both of these narcotics to this day.
So do they help? Well, hell yes they do, or I wouldnt be taking them. Duh. Do they make a Kip 10 go away? Nope. But they do sure take the edge off all of the headaches - to the point where they are worth taking them.
I have been an intractable chronic for eight years now. Everyone that goes through through the clusterheadache plague from hell will hit a "breaking point" sooner or later. I hit mine, and am not so macho to admit it. In fact, narcotics are the thing that have mainly contributed to me "getting my life back".
There are also several papers written on the topic of using narcotics from a CNS (Central Nervous System) perspective in that they can 'surpress' mass surges of serotonin from the gut. As I recall, Diamond Headache Clicic did quite an extensive research into this.....
In short, if you need it - take it! That is what it is for (when in pain).
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miapet
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Re: Narcotics question
« Reply #9 on: Jun 3rd, 2004, 11:09pm » |
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I have no words of advice or wisdom to offer on this . . .I just want you to know that we are thinking about you . . .and sending LOTS of *positive light and energy*
miapet and D
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hdbngr
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Re: Narcotics question
« Reply #10 on: Jun 4th, 2004, 3:19pm » |
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As you are chronic round the clock, you should try it. I think the Duragesic patch is a very good alternative for chronic sufferers. You always start at 25, then might go to 50 if the 25 mg doesn't help.
50-75 seemed to be a good level for clusters. I tried it for 6 months, then took a three month break when things eased up, then again a year later for 11 months.
Docs like this one as it is difficult to abuse (although there is always some nimrod who sticks three on himself at once and ends up in the ER). You get exactly enough patches for one month, period. Each patch last three days. They are on a special script, and you usually have to show ID when picking up the med at the pharmacy.
It won't "cure" a cluster headache, but it does take a lot of the edge off the pain and makes life "possible". Patches may dry up more quickly in hot weather or with physical activity, so you have to be careful.
Best of luck, whatever you decide.
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| « Last Edit: Jun 4th, 2004, 3:20pm by hdbngr » |
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Pinkfloyd
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Re: Narcotics question
« Reply #11 on: Jun 4th, 2004, 6:54pm » |
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on Jun 2nd, 2004, 8:14pm, UN_SOLVED wrote:
The pain management Dr. wanted to give me these "raspberry-flavored lozenge's" along with Methadone. (?) I've already been warned that the Methadone is a hard thing to get off of once you get started. Addiction would be a concern...BUT pain management is a MUST.
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Personally, for clusters, I'd suggest the actiq over the patches. Why dose high enough to dull the pain all day when the same level of pain relief could be taken several times a day instead of constantly. JMHO
If you use a patch that will bring you from a #10 to a #3 as an example, you are that medicated all day instead of medicating each time to that same level.
The methadone may help to bring down the initial pain level so not as much actiq qould be required to reach the same pain relief. But then, you are constantly dulled. I presume the methadone level he was talking about would have been rather low though. Just enough to bring down your baseline pain so the actiq would provide a more adequate relief.
As to coming off of methadone, I cold turkey'd off 20mg/day when I detoxed for 5 days prior to shrooms. I wouldn't suggest THAT for anyone. Actually, I didn't know why I was feeling the way I was until the withdrawls were over. Had never been through them before. Just thought I was going to die and since my clusters were so bad anyway, it didn't seem like a bad thing. If I remember, I was a little disappointed when I began to feel better. 
It should be tapered just like many medications. Cold turkey off high dose prednisone isn't a treat either.
It is not all that unusal to find a pain specialist that deals with "severe headpain" to prescribe actiq, such as I'm sure you described to him. Most of the time, there aren't many options that haven't already been tried, when people knock on their doors.
Generally, headache clinics stay away from prescribing narcotics because many of their patients come though their doors in need of detoxing from narcotics that are not only ineffective, but making things worse. Those people that they (narcotics) work for, usually don't walk into their offices begging for help, so for the largest majority of the people they see, detox is the right way to proceed.
Just thought I'd pass along a couple thoughts for whatever they are worth.
Good luck finding some relief
PF
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Re: Narcotics question
« Reply #12 on: Jun 4th, 2004, 7:44pm » |
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Bob, I agree with many things you said.
Many people entering MHNI are in need of detoxing. I, on the other hand, have had little or no experience with narcotics (at home) for CH or anything else. Detox is not what I needed (unless it was from the Imitrex).
I'd also rather not be 'under the influence' of narcotics 24/7. I wish I had something that would take away (or ease) the pain quickly, effectively, and would not last all day. I was told that the lollipops might be worth a try.
The Methadone dosage he suggested would begin at 10mg. I know nothing about this dose (high or low). I've never taken Methadone before.
My next appointment is on the 11th. We talk more then about the 'next option'. Neuro's from Southern Indiana and MHNI are working together for me. I hope they can come up with something and soon. I hate spending so much time in the hospitals getting DHE / SoluMedrol and doing so much steriods.
Thanks all for your input
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don
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One word three times;
Rebounds
Rebounds
Rebounds
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purpleydog
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Re: Narcotics question
« Reply #14 on: Jun 9th, 2004, 7:05pm » |
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You are a chronic CH sufferer. It is not unusual at all for docs to prescribe more than one painkiller for people who are in chronic pain. If you take the meds as prescribed, you cannot become addicted. After taking said drugs as prescribed, it is possible your body will develop a dependency to them. All this means is that if and when your doc wants you to stop taking them, you will be weaned off them.
This does NOT make you an addict.
I think people have it drilled into their heads that if you take opioid pain meds, you must be an addict. An addict is someone who NEEDS drugs and actively searches for them in maybe illegal ways to satisfy his/her craving. They may doctor shop. They may buy drugs off the street. They will get them wherever they can to feed their habit, which in addition to being physical, is also psychological.
This doesn't mean you will become one.
Even previous drug addicts can take pain meds as prescribed and not have an addiction problem again. I believe some addicts are actually people in chronic pain that weren't being treated correctly by their docs, or not referred to docs that could help them.
You need relief from chronic pain. Talk to your doc openly of the issue with depedency. You may choose to try the duragesic patch, the actiq lollipop, or both. Try them, and if you find yourself having a problem, talk to your doc again.
I am reminded of a dear friend who was hospitalized with complications from cancer. He was prescribed Stadol nasal spray, a strong pain med, like morphine (I also took it for a few years for my migraines). He had about 4-6 weeks to live and the nurse would bring him his spray bottle and only let him have one dose (one spray) every 6 hours. They wouldn't let him have any more (can use 2 sprays if directed) because they didn't want him to get ADDICTED. How fucked up is that?
Anyway, try to work with the doc, if the narcs help you, it's not the end of the world. It may be a new beginning.
PFDAN
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don
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Puple is right. Case in point.
I am a recovered addict. Class A narcotics, only the best. 10 years sober now. Last month my appendix exploded. Little WMD it is. For 3 days My thumb was planted firmly on the morphine pump. Plus a little Diluadid and some percocets for chasers.
It took a couple of days to get through the nacartic physical withdrawals but my addict psyche did not kick in. No obsession.
This fact still remains though;
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Re: Narcotics question
« Reply #16 on: Jun 9th, 2004, 8:18pm » |
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on Jun 9th, 2004, 8:12pm, don wrote:This fact still remains though;
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The fact still remains the same though. Many Imitrex injections everyday. The pain is still NOT controlled. Something has to change. Must look for other means. Narcotics or otherwise.
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don
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Quote:
I dont argue that. When the quality of life becomes so diminished, you have become physically and emotionally drained, and nothing available has worked then narcs are a viable option.
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Jimmy_B
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I am definitely not anti-narcotic. It has a definite place and I believe the risk of addiction (though a slight possibility) is over-blown. But I'm a little concerned with an opioid naive patient (you said "I, on the other hand, have had little or no experience with narcotics" ...taking a potent narcotic like Actiq. Although I'm not experienced with this certain medication, I do know it is "Black-Boxed" for patients taking 50 mcg/hr of fentanyl or the eqiuvalent. & am afraid you would be taking something too strong at first, which can lead to breathing problems & other side effects that you may not enjoy or could be life threatening.
Pinkfloyd did make a powerful argument over using immediate release narcotics over extended release narcotics like duragesic or oxycontin. But there are less-powerful immediate release narcs for opioid naive patients. (Oxycodone, Hydromorphone, levorphanol,) but...This is a decision that you and your Doctor need to make.
Good luck & whatever keeps you pain-free & safe. Keep us posted.
Jimmy
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Kevin_M
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Re: Narcotics question
« Reply #19 on: Jun 9th, 2004, 11:38pm » |
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Unsolved,
I take it the search for an adequate prevent has been exhausted or not gone well. I was on the six imitrexes a day thread of sanity when the gp and neuro couldn't hit the prevent board with their darts. Got another new neuro when the cycles seemed prolonged by the heavy, constant imitrex use. Last cycle just ended that started in October, too long. However, just as a thought, using many imitrexes a day and replacing that regimen with a regimen of opiates. What do you think could happen?
I know, I had to do something too to change from the daily constant imitrex. This last cycle just ended so I will have to wait to see if the prevents I took this time with the new neuro will work next time.
Pinkfloyd said a couple things but, being a former addict myself, certain statements stood out:
Quote:| Generally, headache clinics stay away from prescribing narcotics because many of their patients come though their doors in need of detoxing from narcotics that are not only ineffective, but making things worse |
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And peculiarly, I understand this statement:
Quote:| If I remember, I was a little disappointed when I began to feel better. |
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Sorry to here things aren't going well. Glad your talking it out here.
Kevin M
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Re: Narcotics question
« Reply #20 on: Jun 10th, 2004, 12:20am » |
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When I said I have had little or no experience with narcotics, I mean that I don't and haven't taken narcotics at home for CH or anything else. I have taken my fair share of narcotics while in the hospitals getting detoxed from the Imitrex so I can have DHE. I usually get Stadol 2 - 3 mg via IV. (which has been alot in the past year with the number of times i've been hospitalized.) I don't think that the Actiq lollipops would be too strong ... but I don't know if it would help anything either. Still searching for options.
Will know more this weekend.
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kissmyglass
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Re: Narcotics question
« Reply #21 on: Jun 10th, 2004, 6:32pm » |
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Lithium?
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Roxy
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Re: Narcotics question
« Reply #22 on: Jun 10th, 2004, 7:56pm » |
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on Jun 9th, 2004, 11:38pm, Kevin_M wrote:Unsolved,
when the cycles seemed prolonged by the heavy, constant imitrex use. |
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What Kevin says.
I know you don't have cycles, but I'm chronic too....and I promise you, I was the imitrex queen. It's a bad, bad cycle with trex, the more you take the more you get hit. I never had rebounds.....just more bloody hits.
Have you tried any other triptans. They don't seem to have the nasty effects of trex. I have used Relpax a few times in the last couple of months......not even remotely the same problem as with trex, plus Relpax will keep you good for around 6 hours after you take it.
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don
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Just checked the Relpax site. They stae that the replax will abort in about thirty minutes. Is that the case ?
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Re: Narcotics question
« Reply #24 on: Jun 10th, 2004, 10:20pm » |
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I tried Lithium twice, both for an extended period with no relief. Relpax is yet another Triptan. I've done all the others (almotriptan (Axert®), frovatriptan ( Frova™), naratriptan (Amerge®), rizatriptan (Maxalt®), sumatriptan (Imitrex®), zolmitriptan (Zomig®) ). Imitrex (injections) is much quicker. Sometimes I do feel that the more I use, the more I require though. It's a nasty cycle !
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