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(Message started by: UN_SOLVED on Jun 2nd, 2004, 5:01pm)
Title: Narcotics question
Post by UN_SOLVED on Jun 2nd, 2004, 5:01pm
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 (http://www.actiq.com/default.htm)" 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

Unsolved
Title: Re: Narcotics question
Post by thomas on Jun 2nd, 2004, 5:07pm
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.......
Title: Re: Narcotics question
Post by Jimmy_B on Jun 2nd, 2004, 6:07pm
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
Title: Re: Narcotics question
Post by FZfan on Jun 2nd, 2004, 6:22pm
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.
Title: Re: Narcotics question
Post by forgetfulnot on Jun 2nd, 2004, 6:47pm
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
Title: Re: Narcotics question
Post by Karla on Jun 2nd, 2004, 7:13pm
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.
Title: Re: Narcotics question
Post by pubgirl on Jun 2nd, 2004, 7:16pm
Unsolved

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
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 2nd, 2004, 8:14pm

on 06/02/04 at 18:07:26, 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)...

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.

 [smiley=huh.gif] Feeling like it's almost decision time  [smiley=huh.gif]

Looking for relief
Unsolved
Title: Re: Narcotics question
Post by Alan on Jun 2nd, 2004, 9:15pm
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).  
Title: Re: Narcotics question
Post by miapet on Jun 3rd, 2004, 11:09pm
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
Title: Re: Narcotics question
Post by hdbngr on Jun 4th, 2004, 3:19pm
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.
Title: Re: Narcotics question
Post by Pinkfloyd on Jun 4th, 2004, 6:54pm

on 06/02/04 at 20:14:27, 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.


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
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 4th, 2004, 7:44pm
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

Unsolved
Title: Re: Narcotics question
Post by don on Jun 6th, 2004, 7:28pm
One word three times;

Rebounds
Rebounds
Rebounds
Title: Re: Narcotics question
Post by purpleydog on Jun 9th, 2004, 7:05pm
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

purpleydog
Title: Re: Narcotics question
Post by don on Jun 9th, 2004, 8:12pm
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;
rebounds
rebounds
rebounds
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 9th, 2004, 8:18pm

on 06/09/04 at 20:12:08, don wrote:
This fact still remains though;
rebounds
rebounds
rebounds

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.

Unsolved
Title: Re: Narcotics question
Post by don on Jun 9th, 2004, 8:52pm

Quote:
Narcotics or otherwise.


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.
Title: Re: Narcotics question
Post by Jimmy_B on Jun 9th, 2004, 10:15pm
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
Title: Re: Narcotics question
Post by Kevin_M on Jun 9th, 2004, 11:38pm
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


And peculiarly, I understand this statement:

Quote:
If I remember, I was a little disappointed when I began to feel better.  ::)


Sorry to here things aren't going well.  Glad your talking it out here.

Kevin M
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 10th, 2004, 12:20am
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.

Unsolved
Title: Re: Narcotics question
Post by kissmyglass on Jun 10th, 2004, 6:32pm
Lithium?
Title: Re: Narcotics question
Post by Roxy on Jun 10th, 2004, 7:56pm

on 06/09/04 at 23:38:33, Kevin_M wrote:
Unsolved,

when the cycles seemed prolonged by the heavy, constant imitrex use.  


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.
Title: Re: Narcotics question
Post by don on Jun 10th, 2004, 9:20pm
Just checked the Relpax site. They stae that the replax will abort in about thirty minutes. Is that the case ?
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 10th, 2004, 10:20pm
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 !

Unsolved
Title: Re: Narcotics question
Post by Roxy on Jun 10th, 2004, 10:40pm
The new Zomig nasal works faster than the trex shots.
Title: Re: Narcotics question
Post by Rock_Lobster on Jun 11th, 2004, 12:12am

on 06/10/04 at 22:40:30, Roxy wrote:
The new Zomig nasal works faster than the trex shots.


Really?  I have a pair of them the doc gave me out of the sample closet... will have to give one a try... mayhaps tonight!

Lobstah & Buttah
Title: Re: Narcotics question
Post by Gator on Jun 11th, 2004, 6:05pm

on 06/11/04 at 00:12:12, Rock_Lobster wrote:
Really?  I have a pair of them the doc gave me out of the sample closet... will have to give one a try... mayhaps tonight!

Lobstah & Buttah


Whatever you do don't snort it deep like afrin or something.  You want it to de absorbed by the blood vessels in de schnozz.  Inhale too deep and it all goes down your throat and it is NASTY!!!  
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 11th, 2004, 11:26pm

on 06/10/04 at 22:40:30, Roxy wrote:
The new Zomig nasal works faster than the trex shots.

NO
(Maybe for you)

Unsolved
Title: Re: Narcotics question
Post by Lizzie2 on Jun 12th, 2004, 12:53am
Hey there,

Just read thru this thread, and I wanted to put in my .02 on a number of the things said here, even though you all probably know this already!  Being the nursing student that I am, issues such as this are of great interest to me.

First of all, it is known that the fastest drug effects come from nasal sprays where the drug is inhaled through the nasal mucosa.  That being said, imitrex and zomig are two different beasts, so while zomig NS may be fastest for one person, another person might find the trex injections to be the fastest route.  Differences in physiology play a big part in drug absorption.

I do believe that it is every person's right to have adequate pain relief.  This may not mean taking the pain completely away, but at least lowering it to a much more manageable level.

The incidence of addiction to prescribed pain killers is 0.001.  Rare!!!  There are 3 things that can happen when opoids are taken long term.  The first thing is tolerance.  Tolerance has to do with the idea that the longer you take the medication, the more you will need.  Signs of tolerance are inadequate pain relief with the same dose, requesting (or using) the drug more frequently, and needing a greater dose to achieve the same effect.  Tolerance happens to everyone who takes narcotics long term.

On the other end of the spectrum is Addiction.  Purpleydog made a very good description of this.  Addicts use the med for other reasons besides relief of pain symptoms.  They often use it for recreation and for gaining a euphoric feeling.  The issue of pain is not the point for people who are addicted.  The vast majority of people taking opoids for pain relief will not become addicted.

Now, the overlap of those two comes in with Dependence.  Dependence is going through withdrawal symptoms when the drug is stopped.  It has to do with stopping the drug and the effects felt from this.  People who are tolerant experience withdrawal, as do addicts.

I've learned a great deal about the PCA pump, and I do find this to be a great thing for people in temporary acute pain and people in certain types of chronic pain (ie. cancer or terminal pain).  This takes away the problem of as needed pain meds or scheduled pain meds.  In the past, patients had one of two scenerios.  In one instance, the pain meds were prescribed as needed, and patients had to request the med when they felt pain.  This meant that patients wound up feeling pain and then suffering in pain until they got a medication and waited for it to kick in.

With scheduled pain meds, they often were not scheduled frequently enough to prevent the patient from falling back into severe pain before another dose was allowed.

With PCA, there is a set amount of pain meds prescribed within a 4 hour period.  The patient pushes the button as needed, which..if done correctly...prevents the patient from falling back into severe pain.  There is a time window between doses that locks the patient from receiving too much at once.  The machine records the attempts to receive pain meds, and if a nurse sees the patient has pushed it way too many times, then obviously the dose is not adequate enough, and the doctor is consulted.

So that's the deal with PCA.  However, for headaches, it is a different story.  Low dose narcotic use has generally not been as effective as hoped.  And we all know as clusterheads that acute use of most narcotics has not been useful.  However, I would think that if you could drop a CH from a 9 to a 4, even this would be a welcome relief.  At least in my opinion!!

Then there's the issue of rebound.  My former neuro answered a question for me last night saying that rebound can occur with any type of analgesic.  It is known that rebound CAN occur from many types of triptans and ergotamines.  Also, everyone knew that it could occur from the use of OTC painkillers like excedrin, ibuprofin, aspirin, and acetaminophen.  But what he clarified was that yesterday during the American Headache Society conference, they had a presentation about how ALL analgesics can cause rebound.  It was previously disputed whether or not "pure" narcotics caused rebound, such as dilaudid and morphine.  Rebound can occur with even such a small use as 2-3 days a week.  Scary thought.

These are all choices that we have to look at and deal with.  I believe we all should be entitled to adequate pain relief, and if the pain can be brought down to a manageable level (even if it can't be removed), then that is something.  Just a case of having to weigh the risks vs. benefits.

Sorry this is so long.  I just wanted to share some of the things I have learned recently.

Unsolved, I really hope you get some pain relief soon.

Hugz,

Lizzie :)
Title: Re: Narcotics question
Post by Kevin_M on Jun 12th, 2004, 11:26am

on 06/12/04 at 00:53:38, Lizzie2 wrote:
I've learned a great deal about the PCA pump, and I do find this to be a great thing for people in temporary acute pain and people in certain types of chronic pain (ie. cancer or terminal pain).


Administered for certain forms of temporary acute pain.  Clusters can happen more than several times a day for months when episodic, meaning they are not temporary, and definitely not temporary in a chronic.  Tolerance and
dependency become a factor in a non-temporary illness.
 Administered for cancer and terminal pain.  The factors of tolerance and dependency are a mute point, making it of course beneficial. 


Quote:
However, for headaches, it is a different story.  Low dose narcotic use has generally not been as effective as hoped.  And we all know as clusterheads that acute use of most narcotics has not been useful.  However, I would think that if you could drop a CH from a 9 to a 4, even this would be a welcome relief

Hugz,

Lizzie :)


The only thing here is that dropping it from a 9 to a 4 six times a day for months again brings up tolerance and dependency and the temptation of overuse in a non-temporary situation.

Good info Liz, I was only considering the use of opiates as to their effectiveness in treating clusters as an alternative to the overuse of imitrex.  What's the thoughts on that?  That was basically the question being addressed.  Although being where Unsolved is at now, pain relief seems to be the foremost thought, which I can empathize with.

Kevin M
Title: Re: Narcotics question
Post by Lizzie2 on Jun 12th, 2004, 12:16pm
Hey Kevin,

Well, I definately agree with you that CH is not temporary, acute pain.  If it were that temporary, we all probably wouldn't be here! ;)  What I meant by that was, for example, after a surgery or trauma.  Cancer is by all means a good example of the chronic pain that PCA's are good for because quality of life becomes extremely important at end of life care.  The only reason I brought up PCA at all is because someone had mentioned (and forgive me, but I didn't reread the post to get this all 100% right) that their family member or friend had been only allowed one pain pill every 6 hours for something.  This is the old theory on how to dispense pain meds, and in some places it is probably still used.  However, PCA has been an excellent alternative to this problem.

As far as narcotic use for CH pain, I don't really know how that would work, exactly.  If a person were to take a narcotic after the first hit, but still was going to have 5 more that evening, the narc might still hold low the level of the next couple because most narcotics are pretty long acting.

I know that a few people here use the duragesic patch (fentanyl) and that this can help keep their pain at bay.  I only know much about narcotic use for maintenance of severe forms of chronic daily headache that don't respond to traditional therapies.  In those cases, often a lose dose of methadone or oxycontin are prescribed that the person takes daily to help keep the pain down.  Tolerance does become an issue and the dose often has to be increased, and then something would have to be done about breakthrough pain.  I don't know if this would work for CH or not.

Acute treatment of any type of head pain (other than trauma or something of organic nature) with narcotics is not preferred.  Often the narcotic does just serve as a mask but when it wears off, either the pain is still there or comes back full blast.

So I don't know how it would work in treatment for CH.  I do believe that it is something to consider in cases like Unsolved's where absolutely nothing else has brought him any relief, and he has given it all a fair trial.

Maybe the answer would be to alternate around with the different types of relief.  For instance, use the imitrex  as needed when it is felt to be necessary (at most 2 full injections a day), but then maybe use a narcotic like Actiq when you can't use the imitrex or don't want to.  I really don't know.  I'm sure some hits might have to just be treated without drugs, which is incredibly unfortunate, but they haven't designed a drug yet that we can take for as many hits a day as we sometimes get.  Oxygen is the saving grace in those instances for many of us, but it doesn't work for many either.

I guess only good planning with a good doctor will effectively be able to figure out a treatment plan involving both trex and narcotics.  I know that I have been offered the plan of low dose narcotics for the treatment of my NDPH, but I didn't want to do it at the time.  There are risks and benefits with any situation, but I still think it is worth considering in some cases.

Take care!
Lizzie
Title: Re: Narcotics question
Post by Kevin_M on Jun 12th, 2004, 2:04pm
Thank you Lizzie.  Good decision-making words.  

Kevin M
Title: Re: Narcotics question
Post by UN_SOLVED on Jun 12th, 2004, 5:21pm

on 06/12/04 at 00:53:38, Lizzie2 wrote:
I've learned a great deal about the PCA pump, and I do find this to be a great thing for people in temporary acute pain and people in certain types of chronic pain (ie. cancer or terminal pain).  :)

I don't understand this. WHO chooses who gets (or tries to get) pain relief ?


on 06/12/04 at 11:26:59, Kevin_M wrote:
Although being where Unsolved is at now, pain relief seems to be the foremost thought



on 06/12/04 at 12:16:06, Lizzie2 wrote:
Cancer is by all means a good example of the chronic pain that PCA's are good for because quality of life becomes extremely important at end of life care.

"at the end of life care." ?? These headaches are called "suicide headaches" too. I'd like the avoid this.  ;;D

on 06/12/04 at 12:16:06, Lizzie2 wrote:
Maybe the answer would be to alternate around with the different types of relief.  For instance, use the imitrex  as needed when it is felt to be necessary (at most 2 full injections a day), but then maybe use a narcotic like Actiq when you can't use the imitrex or don't want to.  I really don't know.  I'm sure some hits might have to just be treated without drugs, which is incredibly unfortunate, but they haven't designed a drug yet that we can take for as many hits a day as we sometimes get.  Oxygen is the saving grace in those instances for many of us, but it doesn't work for many either.


I was offered Methadone 10 mg + Actiq lolli pops (which I haven't gotten yet) BUT I still couldn't completely give up the Trex. Right now .. 2 injections per day is NOT enough. My neuro here is working with docs at MHNI and I think they've about tried all the options. They're going to conference again on Monday to consider sending to the 'pain management doc" (again) who'll prescribe these narcotics. (Neither of my docs want to, I guess). Like I told them, It might not help but i'm ready to try something different, anything.

Unsolved
Title: Re: Narcotics question
Post by Kevin_M on Jun 12th, 2004, 5:46pm

Quote:
My neuro here is working with docs at MHNI and I think they've about tried all the options. They're going to conference again on Monday to consider sending to the 'pain management doc" (again)


You sound like you are in good hands Unsolved.  Hope they come up with something soon for you.  Good luck.

Kevin M

*edit*

Quote:
I do find this to be a great thing for people in temporary acute pain and people in certain types of chronic pain (ie. cancer or terminal pain).

I believe here Lizzie was relating what would be perhaps clearcut textbook reasons for narcotics.  Apparently the grey areas are not so well defined and are up to a doctor's decision making.  It is a difficult decision even for the best of doctors.  Most, as you have commented may avoid the decision or refer to a pain specialist.
Title: Re: Narcotics question
Post by alleyoop49 on Jun 12th, 2004, 10:47pm
I, too just read through this thread and felt a need to throw my two cents in. I wish I could offer you a solution but all I can do is relate my own experiences.

I have tried the Actiq suckers. For me, they weren't the answer mainly because of the nausea incurred when I used them. Other than that, they really didn't seem to do anything as far as pain relief goes. But that doesn't mean that they won't work for you. Without going into a lot of detail, suffice it to say that I have an extremely high tolerance to narcs. Almost 30 yrs ago, I was a heroin addict with a habit of over $200 a day. That was then, this is now. Sometimes I think the Big Guy upstairs is paying me back for those yrs. with these CHs. It's like He's saying, "You like sticking needles in your arm, well here's some Imitrex." Even the way you have to peel labels off and use a Q-tip for a plunger smacks of doing something covertly.

Anyway since being diagnosed as you have,  with chronic CH, aside from the Actiq, I have tried both Demerol and Dilaudid for the pain. I had too much naseua with the Dilaudid(although I'll take puking over Ch pain anyday). The Demerol did pretty good for a while. The problem with it was the same as with any pill- by the time it kicks in, you're already full-blown. Still, it definitely took the edge off. The reason that I discontinued it- REBOUNDS!

As I read through this thread, I couldn't help but be awed by the sageness of the advice given to you- at least in my opinion. Although I'm not using quite as much trex as you are(avg. a little over 1 vial a day), I'm anxious to see in which direction the MDs go with you. Please keep me posted, I would really appreciate it.

Unsolved, I think it is healthy to be afraid of addiction, but as Alan said, "If you need it, take it." As we all know, anything can be abused- from food to alcohol to drugs. But I believe all of these things have a legitimate place in our lives, even alcohol. These pain-killing drugs were meant for one thing- killing pain. Some work better for some people and others work better for others. The trick is finding what works best for you! If it turns out that a narcotic is your answer, as long as you use it to address the pain in the manner prescribed, you won't have any problem with addiction. As Purply said, tolerance is another story. Just watch out for those rebounds!

Praying for you,

BobB
Title: Re: Narcotics question
Post by don on Jun 15th, 2004, 9:30am
There is also a new phenomenon the medical worls looking at. I dont know the correct terminology but the explanation is simple.

After long term opiate use and co-inciding with the phenomenon of tolerance there is a phenomenon of perception. The long term opiate user will percieve the pain to be much greater than it actually is and look to increased dosage to address what they believe is increased pain.


Quote:
First of all, it is known that the fastest drug effects come from nasal sprays where the drug is inhaled through the nasal mucosa.  


Zomig nasal spray, approx. 10-30 minutes to relieve.
Imitrex injections, 3-5 minutes.
Title: Re: Narcotics question
Post by mikeslieber on Aug 8th, 2004, 6:37am
    I have been suffering Ch for about 14 years. I have been chronic for about 11 years. At my worst I was getting 4-6 3hour attacks daily.  I found a great Neuro who kept very detailed records and tried most of the treatments either one of us knew or heard about. He also tried endless combinations of treatments. I even tried a 4 week inpatient at Diamond Headache Cinic. (Diamond Clinic told me that because of suffering Cluster Attacks and migraines that I could at best expect a 50% reduction in CH Attacks.)

    My Neuro suggested that some form of Pain Management (Which he felt he was not the most qualified to perform, other then a small amount of narcotic meds  to help a little).

    After the Dr. (An anesthesiologist specializing in long term pain management) carefully review my Med. records suggested some of his own theories on Cluster Headaches. He suggested my using methadone daily and told me that if I would give him a year of closely following his treatment He would do all he could to help. I resisted some because of fear of Narcotics turning me into a Drug Crazed addict. He gave me some great literature on pain management including some of his own articles. After realizing some of the dangerous and scary side effects I had from other meds and studying everything I could on narcotics I felt that if I followed his treatment there would be little risk of harm.

    After 6 6 months of titrating up my dosage of methadone I was surprized to find that my occurances of attacks suddenly went from 4-6 a day to less the 10 a week. I was also able to work several hours a week and even drive again. Then it got even better. He gave me a script for Actiq (fentynal) suckers. As an Attack came on I could reduce the pain from 8-10 down to 3-4 in about 20 minutes. All of a sudden I had a life again. After staying on this treatment with ocaisional dosage changes (The last change reducing my methadone 10%) I can work 40 hour weeks much of the time. As far as addiction or craving Narcotics I find at the end of the month I have usually forgotten several doses of methadone.  Twice while being very busy after 3 days or so of forgetting to take any or most of my methadone the only reminder I had was that I started getting 2 attacks a day.

 Since Day 1 I have had my reflexes and cognitive skills tested by random various tests to find I respond mentally and physically much faster then When I started this therapy. I am a Goaltender in Ice Hockey and perform as I did before even having Clusters.

  Anyway If you use methadone or any other narcotic daily be sure that the Dr.  really knows his/her stuff. My Dr. said that one of the biggest causes of improper use of opiate type therapy is "Undermedicating" When Opiate type meds help your body knows it and a craving occurs. He said this craving is VERY OFTEN seen as "Drug Seeking" when in reality it is the bodies natural way "Relief of Pain Seeking".

 Yes I feel that narcotic use can cause serious problems, However When well supervised and the trreatment plan is religously followed, It can be very safe, effective and even far less harmful then many of the commonly used meds for CH.

        May we all find a cure! Mike L
Title: Re: Narcotics question
Post by IndianaJohn on Aug 8th, 2004, 8:44am
Vibes and prayers for ya Un_Solved!  Hope you find the relief you need!
Title: Re: Narcotics question
Post by ex_pat_asia on Aug 9th, 2004, 5:37am

on 06/10/04 at 21:20:28, don wrote:
Just checked the Relpax site. They stae that the replax will abort in about thirty minutes. Is that the case ?


Don, I think triptan efficacy is related to where you are when you take them, and where you are in the cycle (if episodic). From my recent experience, Relpax has had an edge in the fast relief column over Immigram, the pill form of summatriptan. I am not able to get injectable trex in the country where I live and, in fact, must buy the Relpax in another country nearby. But I will probably keep buying them just for the slight advantage they have over the Immigram so far.

Just checking the log and here is a sample from the last 8 days using Relpax.(in all cases Relpax - 80MG taken at the onset and before a measurable KIP.
Time to abort                 KIP at peak
 17 min                           7
 34 min                           7
 16 min                           3
 23 min                           7
124 min                           9
 43 min                           9
 50 min                           8-9
 18 min                             7
 
As you can see its pretty much all over the map. The two hour event was unaffected by the Relpax in my opinion and simply wound itself down.
FYI: I use relpax when I am away from home/office and Oxy not available.

Cheers and PFDAN


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