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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> The narcotics question revisited
(Message started by: unsolved1 on Mar 16th, 2006, 12:13am)

Title: The narcotics question revisited
Post by unsolved1 on Mar 16th, 2006, 12:13am
I know from experience that narcotics in general will not help with my major hits and that it is probably not a good idea to take narcotics on a long term basis. But what is wrong with taking narcotics on an occasional basis with (by definition) KIP 4's thru KIP 7's ? Is it such a sin to want to be as comfortable as possible. To try and live without so much pain.

UNsolved

Title: Re: The narcotics question revisited
Post by Lizzie2 on Mar 16th, 2006, 12:34am
It's not a sin to want to be without pain.  That's the principle behind pain management in medicine and nursing.  Lots of people don't really get it.  The only reason I've moved to pain management is because I went to the ER for my back in December, and I left feeling that my pain wasn't treated really.  I wouldn't have even thought twice about it, but my psychiatrist asked me if I feel, overall, that my pain is not being treated.  I said that it's definitely not - the headache pain was not being treated.  I was doing what they wanted, but since nothing was working, then the pain was most definitely not being treated.  He's the one that got me on the path I'm on now...

I've taken Ultracet during a CH before - I'll admit that.  Some people have used Stadol during a CH before, as well.  I think it all comes down to how often you use it.  You can't do what you do with the trex, I don't think.  Which is treat every single one that hits that range with a painkiller.  I don't think any doc will go for that, personally.  If you agreed to limit it to only doing that twice a week or on a limited basis, then maybe they'd be more ready and willing.  That's actually what I did with the ultracet.  I had it, but could only use it 2-3 times a week.  That's how I was allowed to continue using it.  If I'd started taking it every day, they would have taken it away from me.

Now I don't need it, fortunately.  I'm on MS Contin 3 times a day for the constant migraine, AVN, back pain.  The MS Contin dulls a CH from a kip 10 to a kip8 or 9, I'd say...but certainly not enough for that to be all I use.  I still take frova or amerge when I need to keep the beast at bay.  I use O2 for attacks that spring up when I'm at home.

It's complicated....but I think it all depends on just how much you're asking to use the narcotics - how many times a day?  how many days a week?  Would you be able to suffer some kip 4-7s without relying on it, because if you have to treat every one with a narcotic, I really doubt they'll go for that, but you'd have to ask your doc.

Take care!!
Carrie

Title: Re: The narcotics question revisited
Post by StressFree on Mar 16th, 2006, 12:45am
Not a sin at all. I see why the concern for those with our condition to end up addicted though. Also in my experience the strongest pain meds will help, but only for about 4 or 5 days. By then both tollerance begins to develope to the drug, but also the Beast finds it's way around the pain meds. Then, you expect it to work still and end up with KIP 10's instead. That is a really bad deal. Armed with a triptan that has worked in the past and alternating days of the triptan and pain drug has worked fairly well for me at times. I definately don't rule out use of pain meds, but I don't rely on them either. Alternate and Change-it-up is my motto! Rich

Modified to add:Oh yeah, and try zapping the crap out of the facial, temple, and cranial nerves with a TENS unit. It's bound to be much better than taking too much pain killler!!! PFDAN's to all.

Title: Re: The narcotics question revisited
Post by Linda_Howell on Mar 16th, 2006, 12:49am


  Unsolved,

   Your tag line says your're chronic.  Right?    So am I.

Lets say you get between a Kip 4 and 7...what,  several times a day?   Chronically.   That adds to one heck of a lot of Narcs, my friend.  Adding to that,  is that it takes at least 30 mins. for them to kick in.  

No.  It's not a sin to want to be as comfortable as you can...so are you,     when you take Vicodin, Percoset, or whatever you're referring to?

I suppose there are some people who have a very good tolerance against addiction and make no mistake, they are addicting...but most people do not.

Maybe you might be one who can take almost any narcotic for pain and not become addicted to it.  Only YOU know the answer to that.

Linda

Title: Re: The narcotics question revisited
Post by burnt-toast on Mar 16th, 2006, 3:58am
Folks easily/often become addicted to narcotics when treating non-recurring pain and in most cases pain levels nowhere near those that CH delivers.

To treat lower level/shorter attacks the narcotic would need to be already in your system.  How many times a day, week, month?  In my opinion this would only lead to two problems CH and a drug habit.  

For the real barn burners narcotics provide little relief and clearly do not protect suffers from attacks or recurring attacks.  What's the value in taking narcotics here?

Unfortunately I believe this is one recurring pain condition that isn't treatable with current pain medications.

After a chronic cycle lasting well over 3 years I've now been in remission going on 6 weeks.  It would take me a while to track back and tell you how many times I changed medications/dosages/scheudles or tried new medications with my base meds. to get here.  At first it  drove my current neurologist crazy but over time we established a working/experimental relationship in treating my condition.  It's a lot of work but so far I like the results.

Work closely with your doc(s)., maintain a good headache journal and work through the laundry list of abortive/preventative treatments until you find the med. dosages/mix and medication schedule the provides you with the best results.

Best Wishes,  


Tom    

Title: Re: The narcotics question revisited
Post by schinnen on Mar 16th, 2006, 4:48am
I am new here, but think that I must comment that what medication that a person takes is something to be decided between that person and his/her physician.  If the medications include narcotics, then so be it.  There is a great difference between "addiction" and "dependence" on a drug.  There are a number of drugs that cause one to become dependent upon them, meaning that they need the medication to control, in this case, pain, and once the need for the medication is over with, the doctor will gradually decrease the amount given until the person is off the drug without any withdrawal symptoms.  The addict, however, is usually someone who wants the drug for non-medical reasons, such as a heroin addict, and will do whatever is necessary to obtain the drug, legal or not.  While expressing opinions on the subject is fine, essentially it is a medical matter and we need to be careful not to give the opinion to others that those who use narcotics as part of their treatment regimen are doing something wrong.  What is good for he goose is not necessarily good for the gander.

Title: Re: The narcotics question revisited
Post by burnt-toast on Mar 16th, 2006, 6:48am

on 03/16/06 at 04:48:35, schinnen wrote:
I am new here, but think that I must comment that what medication that a person takes is something to be decided between that person and his/her physician.  If the medications include narcotics, then so be it.  There is a great difference between "addiction" and "dependence" on a drug.  There are a number of drugs that cause one to become dependent upon them, meaning that they need the medication to control, in this case, pain, and once the need for the medication is over with, the doctor will gradually decrease the amount given until the person is off the drug without any withdrawal symptoms.  The addict, however, is usually someone who wants the drug for non-medical reasons, such as a heroin addict, and will do whatever is necessary to obtain the drug, legal or not.  While expressing opinions on the subject is fine, essentially it is a medical matter and we need to be careful not to give the opinion to others that those who use narcotics as part of their treatment regimen are doing something wrong.  What is good for he goose is not necessarily good for the gander.


When Doctors start prescribing narcotics to treat CH it's an indication that they do not possess a clear understanding of the disorder.    The pain associated with CH is triggered by an underlying neurological condition.                    

In over a decade of researching this nightmare I have yet to find valid reference that lists Narcotics as effective in treating CH.  In fact most studies highlight the ineffectiveness of narcotics in treating the disorder.  

We need to maintain blood serum levels of any number of effective/semi-effective medications to stay ahead of this nightmare.  But maintaining blood serum levels of narcotics that provide little/if any relief?  It's attempting to treat symptoms while ignoring the problem and subjecting sufferers to unnecessary risk.

Tom

 

Title: Re: The narcotics question revisited
Post by chewy on Mar 16th, 2006, 7:39am

Quote:
But what is wrong with taking narcotics on an occasional basis


Nothing if it helps.

Title: Re: The narcotics question revisited
Post by dejay on Mar 16th, 2006, 2:00pm
 I know my doc first perscribed lortabs for the Headaches. At the begining of cycle they did ease the pain, in 20 minutes, enough to get back to sleep. Than I got a hit, and 2 of them didn't even touch it. I wolud have taken anything, herion, pot, a gun, just to relief the pain. That scared me. Right now I have imatrx inhalers and they stopped that beast a couple of times.

 I have never been in an episode this long before, a little over 2 months, so I never gave any thought about long term living with this, really sucks.

 dejay

Title: Re: The narcotics question revisited
Post by Karla on Mar 16th, 2006, 3:40pm
The insurance and drs limit the amount of imitrix you can use and oygen doesn't work for me.  I used to take oxycodone 40mg for pain.  It would at least make a kip 10 a kip 7 or 8 and keep me from blowing my brains out.  I don't think there is anything wrong with taking narcotics to dull the pain or stop it as long as you have done everything else in your power to try to prevent the ch without the narcotics first.  Which I know you have so...  Don't beat yourself up over anything that isn't worth it.  

Title: Re: The narcotics question revisited
Post by mynm156 on Mar 16th, 2006, 6:37pm

on 03/16/06 at 06:48:28, burnt-toast wrote:
 It's attempting to treat symptoms while ignoring the problem and subjecting sufferers to unnecessary risk.

Tom

 

Treating the symptoms is 90+% of what medicine does.  There are not many CURES out there.  Furthermore,  what works for you probably wont work for me.  I have High Blood Pressure so I REALLY have to watch the Triptans,  I do use Stadol I have had two neuros perscribe it for me. (NOT AT THE SAME TIME) They and I understand that what relief I can get I should have access to.  I get one bottle a month sometimes it lasts 3 weeks sometimes it lasts 6 it just depends.  I agree you cant try to keep a theraputic level of Narcs in your system there is a chance of way too much trouble.  Be honest with yourself and demand that your pain be treated!  I was left too long by too many docs who just said oh well dont know what to do and thats not right.  Thats when people start thinking about drilling holes in thier heads or eating a bullet.  At one time or another we have all thought  said something along those lines.

Title: Re: The narcotics question revisited
Post by Kris_in_SJ on Mar 16th, 2006, 8:31pm
When I was first diagnosed, my doc prescribed Percodan (in addition to Trex) until I got in to see the neurologist.

The problem I had was that my clusters ramped up so fast, taking the Percodan did nothing but make me puke.  It certainly didn't help the pain - though it might have helped me sleep better once the cluster was over.

I think we do what we have to to make living with this condition bearable.  I'm not a proponent of narcotics because of the dependency problem and the rebound issue.  But, if you're finding some relief with them, Michael, no one here would tell you not to take them.  God knows, you've tried everything else possible.

Hugs,

Kris

Title: Re: The narcotics question revisited
Post by mynm156 on Mar 16th, 2006, 11:14pm

on 03/16/06 at 20:31:42, Kris_in_SJ wrote:
When I was first diagnosed, my doc prescribed Percodan (

The problem I had was that my clusters ramped up so fast, taking the Percodan did nothing but make me puke.  It certainly didn't help the pain - though it might have helped me sleep better once the cluster was over.


Exactly our meds have to be fast acting.  I have had doc throw pain pills at me my wife get to enjoy those most of the time but every so often they help with the shadows.  All we can do is dance and dance away with this demon.

Good Vibes to All

MYNM156

Title: Re: The narcotics question revisited
Post by fireball on Mar 17th, 2006, 5:56pm
My husband was episodic when he first started getting CH.  Med after med failed for him, and his primary care physician thought he was doing him a favor by prescribing narcotics.  It sounded like a great idea -- nothing else worked and this did take away his pain most of the time.  However, your body does build up a tolerance with narcotics and soon you have to increase the dosage or the amount to get the same effect.  
It wasn't long after he started the narcotics that he became chronic.  Unfortunately, it was after that happened that I read that research shows that narcotics can make episodic cluster sufferers become chronic.  Once chronic, they can prolong the cycle.

I agree that primary care physicians prescribe it because they don't know what else to do.  

We haven't found a neurologist yet that agrees with it.

Good luck with your decisions.  I know how difficult it is.  And wanting to be pain free is definitely not a sin.  I want that for my husband more than anything.

Title: Re: The narcotics question revisited
Post by JJA on Mar 17th, 2006, 8:13pm

on 03/17/06 at 17:56:44, fireball wrote:
I read that research shows that narcotics can make episodic cluster sufferers become chronic.

Do you remember where you read that? I never saw anything like that. Anyone?

Jesse

Title: Re: The narcotics question revisited
Post by Linda_Howell on Mar 17th, 2006, 8:52pm


 
Quote:
When Doctors start prescribing narcotics to treat CH it's an indication that they do not possess a clear understanding of the disorder



Thank you Tom.   No really.  I totally value your opinion on almost every subject including this one.  You are very well educated on every aspect of CH.


"Narcotics making episodics chronic"     is hogwash in my opinion.   Narcotics don't make anyone chronic and I would be happy to read a medical article anywhere that states that.

Narcotics are great after surgery for a few days while one is recovering....after that it's just an excuse.  

Hardly anyone here would ever say Narcotics helped them deal with CH.  The one's that do...are in denial, recovering addicts who use CH as a reason,  since we all know the pain is excruciating.


I, for one am done with this subject.  Narcotics are good on a short time basis only.  Everyone knows that CH is not short-time.   Especially the chronics. Of which I am one.

Linda

Title: Re: The narcotics question revisited
Post by BlueMeanie on Mar 17th, 2006, 10:12pm

on 03/17/06 at 20:52:25, Linda_Howell wrote:
Hardly anyone here would ever say Narcotics helped them deal with CH.


Does Stadol count ? Prior to Trex, the only thing that ever helped me was Stadol nasal spray. (Not sure if it's in the same class which you're referring to). It sucked, and would totally knock me out, but it definately helped me get through CH's. If Trex ever quit working, I'd definately go back to using it. It's a hard choice people have to make. We all know how bad CH's are.

Title: Re: The narcotics question revisited
Post by burnt-toast on Mar 17th, 2006, 10:23pm

on 03/17/06 at 20:13:18, JJA wrote:
Narcotics turning eposodics into chronics

Do you remember where you read that? I never saw anything like that. Anyone?

Jesse


Jessie, Linda,

Only found reference to this issue in one short UPMC article.  I've never come across this information anywhere else.  

Typical UPMC article - Brief do’s/don’ts and reference to abortive/preventative treatments for CH http://headache.upmc.com/ClusterHeadache/Treatment.htm



Here's some online documents that address the topic of narcotic use & chronic headache treatment.

Very well written/illustrated article apparently done privately by someone close to our little CH hearts http://www.miqel.com/clusterheadaches/clusterheadaches.html

Good article covering CH diagnosis/treatment/medications, etc.      
http://www.umm.edu/patiented/articles/what_treatments_cluster_attacks_00 0099_8.htm

Good general CH diagnostic/treatment/medications brief reference to opiates and valid uses http://www.emedicine.com/EMERG/topic229.htm

General headache descriptions/includes CH - briefly cover rebound headache/dependency issue and treatment options http://www.achenet.org/resources/headfact.php

CH specific reference diagnosis/treatments brief reference to little value in opiates
http://www.touchbriefings.com/pdf/1239/rozen.pdf

Good article on rebound headaches/causes, symptoms, prevention
http://www.cnn.com/HEALTH/library/DS/00613.html

Article on medication overuse/rebound headaches http://www.achenet.org/articles/38.php

Good general CH diagnostic/treatment information with links to good sources of CH specific information http://www.rnweb.com/rnweb/article/articleDetail.jsp?id=109931

Brief article CH symptoms/treatments  
http://www.dizziness-and-balance.com/disorders/central/migraine/cluster_ headache.htm

Not an article but in includes a user input 1-10 rating scale on the effectiveness of Vicodin etc. (Hydrocodone; Acetaminophen) in treating CH http://remedyfind.com/rem.asp?ID=16026

General headache article/includes CH, covers rebound H/A, Narcotics and the need to treat underlying causes http://www.milwaukeepain.com/headaches.html

Two very good online prescription drug reference sites to research the meds. from these articles
http://www.nlm.nih.gov/medlineplus/druginformation.html

http://www.drugs.com/

Hope these help someone make informed decisions.


Tom

Title: Re: The narcotics question revisited
Post by Linda_Howell on Mar 17th, 2006, 11:05pm


 
Quote:
Standard opiates, anxiety meds, marijuana, barbiturates, heroin, cocaine and sleeping pills have little or no effect, except to sap the willpower you need to keep your sanity .. i'm sure you know what i mean.


  Yep.

Oops, I did say I was done with the subject didn't I?  

  My bad.  ::)

Linda

Title: Re: The narcotics question revisited
Post by jon019 on Mar 17th, 2006, 11:29pm
THANK YOU Tom,

Some wonderful links. The first is incredible and should be read by all here.

Regards

Jon

Title: Re: The narcotics question revisited
Post by StressFree on Mar 18th, 2006, 12:03pm

Quote:
"Hardly anyone here would ever say Narcotics helped them deal with CH.  The one's that do...are in denial, recovering addicts who use CH as a reason,  since we all know the pain is excruciating."

I must agree with BlueMeanie and strongly disagree with Linda. Stadol nasal spray helped me out a lot. As I've stated before, I did have times that it was ineffective but overall it was well worth trying and having available.

Many here have stated that narcotics have helped when taken with care along with the standard medications. All of us who do use pain drugs are absolutely not "in denial/recovering addicts"! I can't believe someone would even say that. Talk about strereotyping. You sound like the uncompasionate physicians who treat us like druggies. By the way Linda, if you are unconsious from a strong drug, you are not in pain! I know we can't stay unconsious indefinately, but my point is there are narcotics that can give a person a break from constant pain. There are better ways to state that you oppose the use of narcotics than by calling everyone "addicts". Rich

Title: Re: The narcotics question revisited
Post by kcopelin on Mar 18th, 2006, 4:20pm
After 24 years of adamantly refusing narcotics and pain meds, this cycle I  finally asked for something.  I was suicidal.  No kidding.  So I take Verapamil, and vicodin when I need.  It dulls the headaches enough to keep me from headbanging.  O2 doesn't always work.  Also, I have tried varying doses, stopping totally for a couple of weeks, ect.  No rebound headaches.  I am not addicted to this-it is making my life tolerable.  And I'm not in denial-even though most people in denial say that ::)I was prescribed Xanax to deal with the anxiety caused by episodic cluster-you know-never knowing when you're gonna get hit....I am also not addicted to them but I know when this cycle ends I'll have to wean off them because of dependence.  Linda, you know I've tried everything except Topamax, and I am not a junkie.
I am, however, obnoxious. ;;D
kathy

Title: Re: The narcotics question revisited
Post by dejay on Mar 18th, 2006, 9:23pm
 This seems to be a "touchy" subject here. I'm not trying to get anyone pissed off, but as an epoisdiac, when the pain comes, the last thing I'm worried about is dependence on a drug. In the past 2 months I'd say lortabs have just about eliminated 70% of my attacks, the ones I get in the afternoons, I can feel them coming and since steriods and verapamil they don't come on as fast and aren't as strong. Before that, they were worthless in the middle of the night, for the 10's. Thank God I got imitrex inhalers, but at $377.00 for 12 inhalers, if it weren't for insurance I'd use the drugs.

 And Kathy, I know how you feel about the anxiety attacks. I got a lot of help here and yesterday, I drove a FEMA trailer with my son to New Orleans. I had read a lot here, packed a cooler with some Red Bull, and brought a little med kit, verapamil, imitrex, . I felt so good finally getting out all day and not having anxiety about it. This is my longest cycle, 2 1/2 months now, so I have to try to get on with my life.

 Thanks to all for your suggestions.

Title: Re: The narcotics question revisited
Post by thebbz on Mar 19th, 2006, 1:50am
::) Remember this is just me....Narcotics make the beast angry and just aggrivates the bastard. I have however had abortives fail and begged for 150 mg demerol in the  a$$ just to breathe. That being said for the most part they are nothing more than a trigger.
But that is just me. The wifey uses them for the cramps. LOL :oNow do what you want your going to anyway. LOL ;;D
all the best
jb

Title: Re: The narcotics question revisited
Post by fireball on Mar 19th, 2006, 2:11pm
Re: where I read about narcotics making episodics sufferers chronic, I really have no idea now.  That was 5 or more years ago, and I have so much information saved that I wouldn't know where to begin looking.  I did find the following article by doing a google search, but as Tom mentioned, is just one sentence stating that it is possible.
http://headache.upmc.com/ClusterHeadache/Treatment.htm
All I know is that my husband was very much episodic.  There is no way to know if he would have become chronic or not, but I do know that before he took narcotics, the cycle would end and he would have months of PF time.  After he started taking narcotics, the cycles got longer and longer and he was soon chronic.  I guess I just wanted to share it b/c if we had known years ago that there was even a possibility that narcotics could have caused  him to be chronic, I don't think he would have gone that route.  

Title: Re: The narcotics question revisited
Post by burnt-toast on Mar 19th, 2006, 8:26pm
The real kicker in all this is the fact that we're too small of a percentage of the population to drive research dollars into CH specific treatments.

Until something improves and some CH specific treatments are developed - I guess pain meds. will always be an issue.  

I still remember the words my first Neuro. used.  "You may never get a diagnosis -  but if I can get rid of the pain that will work for you - right?"  I answered yes.  
 
I went chronic/undiagnosed for two years.  Every time I tried a new doc. and explained my symptoms - that old, where did I leave those keys to the med. cabinet look would cross their face.

I didn't want more pain medication, I wanted relief from the recurring and  unbearable headaches that never allowed me to sleep or rest.  

I took boatloads of pain meds. for years before realizing I would never get better.  Finally I started doing my own research.  Also found a Neuro. at a headache clinic who was familiar with CH and willing to work with me.  

With the Lithium, Verapamil, Melatonin and Prednisone combinations I take now - I'm far from perfect - but it's heaven compared to those first few years of battling this nightmare with pain meds.

I pray everyone finds some relief from this nightmare because only sufferer's and their close supporter's know how devistating this condition can be.  My experience is that we won't find it in pain meds.    

Tom          





     

Title: Re: The narcotics question revisited
Post by Beastfodder on Mar 22nd, 2006, 12:33pm
Never found a narcotic to help shift the pain - but never looked too hard either.

Do remember getting paracetamol poisoning in the early days (sure sign you're overdoing things) and trying some far heavier painkillers that you'd only notice once the beast has gone leaving you too stoned and spaced to function properly.

Even as episodic on 2/3 hits per day over 10 weeks that's a lot of opportunities to abuse narcotics - simply ain't worth it.

Not saying I'd want to give birth without an epidural tho' !

Title: Re: The narcotics question revisited
Post by Bob P on Mar 23rd, 2006, 9:39am
I think that if it helps you deal with your attacks, go for it.

I've tried painkillers on 3 occasions, all with terrible results.  Each time it has hidden or dulled the onset of the attack but it eventually hits K10 and the pian med is no good.  By then it's too late for most of my other treatments to be effective.  I've suffered a major K10 each time I've tried pain meds.

Title: Re: The narcotics question revisited
Post by gore2424 on Mar 23rd, 2006, 1:57pm
Hello everyone Terry here thought about writting this for many days so first off let me make a statement that everyone is different on how they fight off the pain from the beast so ok here is what I would like to add to this post:
I have been chronic since Nov. 1999 spring and fall for 17 years before that  I have a right side cluster 3-4 pain level 24/7 some days its worse I even had the right trigeminal nerve cut in May 2002 and didnt have h/a for almost 4 months then clusters back full force and even tho right side of face is numb forever I have that demon pounding chipping cutting away inside my skull . from 1995 thur 1999 I have tried 67 different meds in many combos some worked for awile then farted out on me O2 worked great for a few years then I got no relief at all but my neuro and I have gotten a good combo to keep beast at bay most of the time for the last 15 months I wear a fentanyl 75MCG/HR pain patch I change every 72 hours plus take 60mg Remaron at nite to help sleep plus take 60mg citalopam hydromide anti-depression med in AM and take 0.5 clonazepam when I get panick attacks and for the last 4 months now I am allowed 12 per month 10mg morphine shots which I can take 3 in a 24 hour time frame if need which I have used only 2 in a 24 hour period twice but what I am using now keeps the demon in check.  thats the way my life is and I have come to terms with it and I can even drive after 1 hour of getting a shot with no problems. plus I was granted SSD in 2003 after getting layed off due to a staff reduction (yeah right after 20 years of selling auto parts and equipment) Now I want to say again to all that everyone is different with clusters and I have found out that pain meds do work for me with these fö¦«ôµg clusters  well I have rambled on too much again pfdan's to all Terry (still in Davcon Iowa )

Title: Re: The narcotics question revisited
Post by mynm156 on Mar 24th, 2006, 3:17am
Hey Gore 2424,

Thats alot of pain meds.  I am chronic and do get some relief from pain meds but nothing near what they have you on.  Have you tried Stadol?  It is the same dosage as your MS.  I dont know what the MS is costing you but you might give it a try.  

I am glad something is helping.

GOODVIBES

MYNM156

Title: Re: The narcotics question revisited
Post by gore2424 on Mar 24th, 2006, 9:42pm
Yes I did try stadol and I used it too much I was working at the time and I was abusing it I loved the high it gave me and first time I used a bottle in a week then next bottle I would fill it half water so I could use it more and longer I lied 3 times to get more than I really needed so I requested that I be taken off it and will not get on that joy ride again. I can function with no problem on current meds just to be safe I wont drive car til after 1 hour of getting a shot. And in summer time I just have to stay out of the direct sunlight cause it will put too much med into system too quick . I was on the 100MGC/HR pain patch for 2 months but I couldnt function at all was too doped up to even get out of bed to feed myself so we went down a dose and it works good enough for me to have a life. I am a VA vet so all meds but the shots cost me only $8.00 a month and I only pay $12.44 for the 12 shots. And I can have instead of the shots 14 per month of the morphine pills instead that are 30mg immediate release but they take too long and are stronger med the shots in about 5-10 minutes I can feel the 7-9 pain level go down to my base pain level of 3-4 and sometimes 1-2. hope I answered your ? pf vibes to all Terry

Title: Re: The narcotics question revisited
Post by StressFree on Mar 25th, 2006, 12:08pm
Hi Terry,
What you describe is basically 'pain management'. It is a legitimate treatment for many extreme chronic pain conditions. I'm very glad it works for you without too many side effects. It also sounds like you are aware of and careful about the addiction/dependence issues. Unfortunately most people on this site and most physicians don't recognize such treatment as you are receiving. For many the cluster attacks break through regardless of pain management efforts. We are all different though, and I think pain management does work for quite a few folks. Many won't bother to post about it due to the controversy and of course attacks from others on the board. Best of luck to you. Hoping and praying we can all have a cure in the near future, Rich

Title: Re: The narcotics question revisited
Post by Radha on Mar 31st, 2006, 12:16am
before i ask my question, i want to say i am not an addict, but just in severe pain, i also have lyme and other health problems, and doc wont give me anything other than vicodin, i mean no other drugs with the vicodin and i like to rotate and take different stuff, and i wanted to know if any of you know of any websites that sell drugs like MS Contin or oxycodone, without a prescription, i say again, i dont like to take any pain meds at all, and am not an addict! just want some relief!! so if any of you know how to get these kind of meds with rx, please be open and let me know,  imitrex works, but not all the time,
radha

Title: Re: The narcotics question revisited
Post by LeLimey on Mar 31st, 2006, 6:59am
radha you say imitrex works but not all the time? Is that possibly because sometimes you leave it too late before taking it? I know I've done that myself with various meds in the past hoping I won't need to use them, afraid of needing them more later in the day and having used up all my bullets..
Have you ever tried O2 at a high flow rate through a non rebreather mask? It works in the same way as imitrex, basically it constricts the blood vessels in your brain thus reducing the pain. I find it fantastic and very fast working. If you haven't tried it, or haven't tried it in the way I've mentioned I'd highly recommend giving it a whirl if, for no other reason than it's alot less toxic on your poor old body than tons' of other muck bunged down it daily.
Wishing you some pain free time,
Helen

Title: Re: The narcotics question revisited
Post by Radha on Mar 31st, 2006, 11:26pm
yes i do think i wait too long to use the imitrex, since i hate using it, and i am scared i am using it too often, how often is too often?? and i do use the O2, but i dont think i am using at high enough liters. but still if anyone knows of any website, please let me know, i cannot travel to any doc, am too weak and bedridden, cannot leave home at all, so i am stuck with GP i have, and he isnt that cooperative about prescribing stuff, scared i will get addicted, but he doesnt know how careful i am, and how infrequently i take meds, still docs dont trust our word!!
radha

Title: Re: The narcotics question revisited
Post by zuesthedog on Apr 3rd, 2006, 8:05am
I,ve sat and read all of the replys to this thread, and found the different view points jus asstounding.Been chronic several years,and down right sucidal. After pleading with Dr. for anything, was givin demerol IM for abortive use. The real problem came with the amounts of attacks [3-4 a day] . That would =300-400 mg a day of demerol. Yes tolarance did increase a demerol levels went even higher. Then they even added oxycontin to the mix. Addiction deffinitly took over. Finally once I got the trigen. nerve stim. and the pain was gone started the long battle to right myself. the road isnt easy but going pretty well. The bottom line the drugs arent good but the pain is much worse you have to do what you have to do to keep from killing yourself.  If anyone is truly that desparate stimulating the nerve is the key for me . PF 2.5 months and smilling on. pF days to all.

Title: Re: The narcotics question revisited
Post by mynm156 on Apr 4th, 2006, 12:16am

on 03/17/06 at 20:52:25, Linda_Howell wrote:
 
Hardly anyone here would ever say Narcotics helped them deal with CH.  The one's that do...are in denial, recovering addicts who use CH as a reason,  since we all know the pain is excruciating.


Linda

WTF? Done or not BAD FORM!

Let me see if I have got this straight.  I as a chronic who have been prescribed narcotics to help deal with the beast am nothing more than an in denial addict?!  Sorry Linda but would you not agree that most of us are on a different treatment regiments and what works for you might not work for me?  What bothers me is that anybody who tried shrooms, LSD or some other illegal substance doesnt get a second glance but if you are one who uses opiates you are an addict who's facking it?  It maybe true of some Linda but not all. I for one dont get OFF on the drugs. I have tried everything under the sun sometimes some work sometimes some dont but it has been shown that SOME clusterheads do get some relief from opiate meds.  Its listed on the OUCH site.  Just because you or some others may not have had any success doesnt mean that others can not.

I say here's to gore2424 for being able to see what was going on with the Stadol.  I have no insurance and it is too expensive to get addicted too.  Shit COCAINE whould be cheaper!!  

PF DAYS AHEAD FOR US ALL!!!

GOOD VIBES ALL

MYNM156

Title: Re: The narcotics question revisited
Post by miapet on Apr 4th, 2006, 12:56pm
just my 2-cents here . . .people's choice on chancing addiction is exactly that, their choice . . .I'm not touching that part of the issue . .. .
but, what about rebound h/as?  most of that stuff always whacked D with rebounds . . .(which might be where someone read about ech becoming cch?)  
anyway, whatever your choice of battle is . .. we hope it works for you!
*positive light and energy*
miapet

Title: Re: The narcotics question revisited
Post by kcopelin on Apr 5th, 2006, 12:19am
See, this really is a double-edged sword....many Drs are more than willing-in fact prefer to, Rx pain meds-which should not be the first line of defense.  In my case it was about the 567th line of defense.  Listen, whatever gets you through the night, and the days, and keeps you from desperation-as long as you are aware of the possible consequences-I say go for it.
PFDAN to y'all
kathy

Title: Re: The narcotics question revisited
Post by pfunk on Apr 5th, 2006, 12:48am
Over the last three or so decades I have tried just about every narcotic that any doctor gave.  Demorol in high doses doped me up pretty good but just masked the pain until it wore off and the beast roared and kicked my ass.  Morphine seemed to work quite well.  It was the only on that left me feeling completely symptom free but I didn't want to be doped up all time.  After all, I am finishing my degree to become a teacher.  You wouldn't want me teaching your kids while I was all drugged up would you?  That's one reason I've sworn off painkillers.  he other is that if they are not direst triggers for me, they pretty much cause me to get REBOUNDS.  Pain killers may help some and if they do more power to you.  Much luv and good luck

Pfunk

Title: Re: The narcotics question revisited
Post by burnt-toast on Apr 5th, 2006, 10:37am
I have to ask a basic question here, one that my first good Neuro. asked me.

Pain management of what?  This isn't a knee or back injury that delivers constant pain that needs to be managed or has a limited time frame in which narcotics will be used.    

This is an on-again/off-again or possibly always-on pain syndrone that - comes and goes - lasts minutes or hours - hits once or multiple times daily/nightly - ramps up to full intensity and/or stops before getting there, etc., etc., etc., seemingly of it's own will.

Chronic or Eposidic the pain/attributes of this nightmare are impossible to manage with narcotics - without serious risk of addiction.  I'm not calling anyone an addict but honestly - what are you managing with narcotics?  

As previously stated, over 10 years ago I went the narcotics route for about two years before finding a Neuro. who focused on the underlying problem and helped me move away from treating symptoms.  

Luckily, I'm now a former Chronic that's been pain free for just over two months - following years of Chronic CH.
More importantly over the last decade my Chronic condition was made more liveable (not perfect) by proper treatments.

I belive I got here by contineously attacking the problem and tracking the effectiveness of treatments and experimenting with new ones - not focusing on pain management.  Many of these drugs are clearly not as user friendly as I would prefer but at least they attacked the underlying problem causing the pain.

I believe narcotics are a dangerous trap that may keep many from finding true relief.  But as some here have said - it's your choice to make.  

Tom

 

 

Title: Re: The narcotics question revisited
Post by Garys_Girl on Apr 5th, 2006, 2:23pm
With the pain CH sufferers experience, my first response is to think I can't believe you're not all addicts.  !!  Hubby has had back problems and knee problems for years (airborne infantry with 385 jumps - one knee has no cartiledge left in it).  He's been through pain management routines and has, as each docter we have seen says, one of the highest thresholds for pain in anyone they've ever seen.  

With various narcs prescribed at various times for these other problems, he's tried using them when the beast attacks.  They've helped bring the peak down to maybe a Kip 7 or 8, but the beast always reappears with a vengeance, and within just 2 or 3 days he's had to significantly up the dosages for there to be any effect.

Because the side effects are so great, the possibility of addition is so great (and as a teen he had addiction problems), and the efficacy drops so rapidly, he stopped bothering with narcs for CH.

Some people don't have addiction problems.  I know plenty of people who smoke 2 or 3 cigarettes with a drink on a Saturday night and that's it.  Me?  I'm either a pack a day or none at all.  

So if the narcs work for you - great.  But they are very hard on your body, addiction and functionality impairment considerations aside.  Morphine blocks the production of endorphins, and depending upon your length of use, it can take up to six months before your body will naturally produce them again.  And all of them destroy your liver rather rapidly.  They didn't work well enough for Gary to bother continuing.  

Title: Re: The narcotics question revisited
Post by mynm156 on Apr 5th, 2006, 9:27pm
Your right this isnt something that can be managed BY ANYTHING!  There is nothing that we take that does ANYTHING but either knock it down a peg or just try to contain it a little.  I have found that when I am at my worst and I am going DAYS without relief from shadow or Cluster that the narcotic THEN help provide me with a little respit.  I have found and it has been posted here though that when we are dealing with another pain and I have been on say Vicodine for Kidney Stones (BY THE WAY I'D LIKE TO TAKE THIS OPPORTUNITY TO THANK THE PEOPLE WHO MAKE ZONAGRAN FOR THESE LITTLE GEMS)  That the beast seems to stay away more not sure why that is but several people have reported the same thing.  Not that I am saying that 5mg of hydrocodone is really doing anything but something is.  Narcotics make me cranky and constipated I dont get how ANYBODY could get hooked on that.  Oh well.  GOOD VIBES
MYNM156



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