Hi i am recently diagnosed with cluster headaches. I live in uk. Have been put on amitriptyline and pregabilin and oxycontin and oxynorm. I believe in america oxycontin is known as hillbilly herion and lots of problems with it . The pain i suffer is horrific nothing is working. Is it worth continuing with oxycontin?

Narcotics, over the long term, will only worsen the CH condition by causing rebound headaches that could have been avoided, not to mention the addiction issues that will set in. They are not the way to treat this condition for the vast majority of sufferers.

Go back to your doc - the first thing I would insist upon is high-flow oxygen (15 litres per minute or greater) through a non-rebreather mask to abort the hits (see the oxygen info link to the left).

Please give us a list of meds you have used, using the generic names--NOT your brand names.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)

Bob - the names she used here are generic...

GENERIC NAME: pregabalin
BRAND NAME: Lyrica

this is like gabapentin

--

GENERIC NAME: (amitriptyline HCI)
BRAND NAME: Elavil  

only one exception - oxynorm is not sold in the US - it is simply oxycodone.  So she was prescribed both oxycontin and oxycodone.

- - - - - - - - - - - - - - - - - - - - - -

Shoegirl - I agree with Brew - oxygen takes the pain away much better than heavy drugs like oxycontin and oxycodone... no side effects either!!   ;)  No chance of addiction, and rebounds - eh, not likely.  Not like those narcotic pain killers.  

Read the link on Oxygen to the left in yellow!!  oxygen info   :)  Has lots of info!  AND Yes they do prescribe it in the UK!

Val

In my humble opinion you need a new Dr.  You need someone who is knowledgeable in HA treatment, not a drug pusher.

I agree fully with the others.  Oxygen is your best bet, and it is safe.  There are those here who have gone the oxycontin and the oxycodone route.  I would touch neither of those until just prior to suicide.

Just my opinion.  Your mileage may vary.

Jerry

shoegirl wrote on Jul 7^th, 2009 at 6:51am:

The pain i suffer is horrific nothing is working. Is it worth continuing with oxycontin?

If the oxycontin isn't helping...then No! It's not a drug that is going to eventually suddenly start working, at least not in my experience.

When I was on it for chronic pain, it helped immidiately. Not after a few weeks. If it hadn't worked on the pain right away, they would have switched me.

If you're on a high dose, you need to be tapered off. Be aware of that, so I suggest you call your doctor, insist on getting to try oxygen, and request to be taken off of the oxycontin as it is not benefitting you.

PFDAN
Mystina

oxycontin is dangerously addictive, in fact, i have my drug addicted brother in law living with me right now.  He lost his wife, kids, house job, everyting.   He started taking it for an injured back, and that was the end of everything for him.  Please, Please, Please be careful with that stuff.

Try the oxygen,  if you get addicted to that, there arent any problems.  ha ha.

good luck
Christine ;D

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Let me first say that I agree with about 90% of what is being said about OXYCONTIN   But I think that there are one or two people that have managed to take Oxycontin without becoming addicted and abusing the drug!!!!

   Do not get me wrong it should only be a drug of last choice because there are a lot of safer treatments out there that should be tried first. I just think that you should not dismiss any DR. approved treatments.

    But they are right your Dr. should not have gone to the narcotics before trying other form of treatment first. Many others before the use of narcotics!!!

     I hope you find something that works for you!!!

Painkillers are not a treatment for CH. Treat the ailment not the symptoms.
all the best
the BB

Your doc will appreciate the source of this abstract. Print and give to him.
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Cochrane Database Syst Rev. 2009 Jul 8;(3):CD007076.
Pregabalin for acute and chronic pain in adults.

Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ.

Pain Research and Nuffield Department of Anaesthetics, University of Oxford, West Wing (Level 6), John Radcliffe Hospital, Oxford, Oxfordshire, UK, OX3 9DU.

BACKGROUND: Antiepileptic drugs have been used in pain management since the 1960s. Pregabalin is a recently developed antiepileptic drug also used in management of chronic neuropathic pain conditions. OBJECTIVES: To assess analgesic efficacy and associated adverse events of pregabalin in acute and chronic pain.

[edited for length. Technical data deleted.]

THERE IS NO EVIDENCE TO SUPPORT THE USE OF PREGABALIN IN ACUTE PAIN SCENARIOS.

PMID: 19588419

arnycay wrote on Jul 13^th, 2009 at 12:29am:

Let me first say that I agree with about 90% of what is being said about OXYCONTIN   But I think that there are one or two people that have managed to take Oxycontin without becoming addicted and abusing the drug!!!!    Do not get me wrong it should only be a drug of last choice because there are a lot of safer treatments out there that should be tried first. I just think that you should not dismiss any DR. approved treatments.     But they are right your Dr. should not have gone to the narcotics before trying other form of treatment first. Many others before the use of narcotics!!!      I hope you find something that works for you!!!

I'm one of those who took it without getting addicted to it years ago. It helped my back pain immidiately. But like I said, if it isn't working after the first dose? It probably ISN'T gonna work... And the risk is WAY too high for addiction to keep taking it with our condition.

arnycay wrote on Jul 13^th, 2009 at 12:29am:

Let me first say that I agree with about 90% of what is being said about OXYCONTIN   But I think that there are one or two people that have managed to take Oxycontin without becoming addicted and abusing the drug!!!!    Do not get me wrong it should only be a drug of last choice because there are a lot of safer treatments out there that should be tried first. I just think that you should not dismiss any DR. approved treatments.     But they are right your Dr. should not have gone to the narcotics before trying other form of treatment first. Many others before the use of narcotics!!!      I hope you find something that works for you!!!

Arnycay,

This is not intended as an attack, so please don't take it as one.  If I am not dealing with an headache specialist who has treated more than one other clusterhead I am going to discount 90% of what he says until I have had the opportunity to run it by some of my other clusterhead friends here who have experienced such poorly considered, mis-prescribed, uneducated medical practice to find out what they have experienced by those who think M.D. behind their name equals God.  All he would have had to do is to do a quick computer search and he would have found out that opiates do NOT work for clusters.  Going for the strongest possible drug available at the first diagnosis of CH is less than intelligent in my humble, but correct, opinion, but then I don't have those funny initials for God behind my name.

I understand you are new, but after you have been here for a while and seen some of the stupidity and ignorance we have had to deal with from the medical profession you will perhaps have a slightly different opinion.

Bear in mind that I am not trying to tar the whole profession with a broad brush as there are many caring Drs out there who really work with us to try to find something that will help.  I have been fortunate in having had three such, but for the three that I had that were willing to learn or knew something I also had to deal with others who tried to get me hooked on opiods early on, and I spent several miserable months getting myself off, to others who would only prescribe drugs that I had already shown bad reactions to.

My point in this long diatribe is simply this, You have to take the responsibility to learn as much about this malady as you can so that you can work WITH your Dr from a position of knowledge because unless you are a rare and very fortunate person you will be dealing with a Dr that knows as little or less than you do about CH.

Jerry