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unsolved1
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The narcotics question revisited
« on: Mar 16th, 2006, 12:13am »
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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.  
 
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Re: The narcotics question revisited
« Reply #1 on: Mar 16th, 2006, 12:34am »
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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!!
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Re: The narcotics question revisited
« Reply #2 on: Mar 16th, 2006, 12:45am »
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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.
« Last Edit: Mar 16th, 2006, 12:49am by StressFree » IP Logged
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Re: The narcotics question revisited
« Reply #3 on: Mar 16th, 2006, 12:49am »
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   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.
 
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Re: The narcotics question revisited
« Reply #4 on: Mar 16th, 2006, 3:58am »
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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,  
 
 
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Re: The narcotics question revisited
« Reply #5 on: Mar 16th, 2006, 4:48am »
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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.
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Re: The narcotics question revisited
« Reply #6 on: Mar 16th, 2006, 6:48am »
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on Mar 16th, 2006, 4:48am, 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  
 
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Re: The narcotics question revisited
« Reply #7 on: Mar 16th, 2006, 7:39am »
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Quote:
But what is wrong with taking narcotics on an occasional basis

 
Nothing if it helps.
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Re: The narcotics question revisited
« Reply #8 on: Mar 16th, 2006, 2:00pm »
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 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.
 
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Re: The narcotics question revisited
« Reply #9 on: Mar 16th, 2006, 3:40pm »
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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.
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Re: The narcotics question revisited
« Reply #10 on: Mar 16th, 2006, 6:37pm »
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on Mar 16th, 2006, 6:48am, 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.
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Re: The narcotics question revisited
« Reply #11 on: Mar 16th, 2006, 8:31pm »
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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,
 
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Re: The narcotics question revisited
« Reply #12 on: Mar 16th, 2006, 11:14pm »
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on Mar 16th, 2006, 8:31pm, 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
 
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Re: The narcotics question revisited
« Reply #13 on: Mar 17th, 2006, 5:56pm »
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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.  
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Re: The narcotics question revisited
« Reply #14 on: Mar 17th, 2006, 8:13pm »
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on Mar 17th, 2006, 5:56pm, 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?
 
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Re: The narcotics question revisited
« Reply #15 on: Mar 17th, 2006, 8:52pm »
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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.
 
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Re: The narcotics question revisited
« Reply #16 on: Mar 17th, 2006, 10:12pm »
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on Mar 17th, 2006, 8:52pm, 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.
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Re: The narcotics question revisited
« Reply #17 on: Mar 17th, 2006, 10:23pm »
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on Mar 17th, 2006, 8:13pm, 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  
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Re: The narcotics question revisited
« Reply #18 on: Mar 17th, 2006, 11:05pm »
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    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.  Roll Eyes
 
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Re: The narcotics question revisited
« Reply #19 on: Mar 17th, 2006, 11:29pm »
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THANK YOU Tom,
 
Some wonderful links. The first is incredible and should be read by all here.
 
Regards
 
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Re: The narcotics question revisited
« Reply #20 on: Mar 18th, 2006, 12:03pm »
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"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
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Re: The narcotics question revisited
« Reply #21 on: Mar 18th, 2006, 4:20pm »
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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 Roll EyesI 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. Grin
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Re: The narcotics question revisited
« Reply #22 on: Mar 18th, 2006, 9:23pm »
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 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.
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Re: The narcotics question revisited
« Reply #23 on: Mar 19th, 2006, 1:50am »
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Roll Eyes 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 ShockedNow do what you want your going to anyway. LOL Grin
all the best  
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Re: The narcotics question revisited
« Reply #24 on: Mar 19th, 2006, 2:11pm »
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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.  
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