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Has anyone had good results from methodone?

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Posted 11/5/2008 7:15 AM (GMT 0)
 Hello H.W.

Has anyone had sucsess with methodone? And if so how does it start, like do you increase gradually, or do you just start right away? Also do you get breakthru meds as well? I have tried everything under the sun, so this has made me curious on how it relieves massive chronic pain!!!!!!!

                                    Thank You All

                              idea               mike

Posted 11/5/2008 7:09 PM (GMT 0)
I tried methadone before. I know some people who have good results with it & some people who don't. I was originally scared to try oxycontin because of the media hype (which I swear by it now), so I decided to try methadone first. The first two months I wasn't allowed a BT med because they wanted to see how my real pain level was while on methadone. I personally didn't like it. You can ask for a 2 week trial..... see how it does. Then decide if you want to keep trying it or try something else. Can I ask whats wrong & what all have you tried? Thank & hope this helps, Shannon.
Posted 11/6/2008 6:59 AM (GMT 0)
It's pretty rough to start out on Methadone. It takes awhile to get
adjusted in your system. For me, Methadone has worked the best of
any Opiod for pain relief. Are you still around, crps?
I'll check in a few days. It doesn't
seem like many people use Methadone for pain relief ~
at least not on this forum.
Pamela :-)
Posted 11/6/2008 7:06 AM (GMT 0)
I agree w/ Pamela; it is a rough start to get on Methadone, especially if you are transitioning from another opiod.  It metabolizes in your body differently, so most docs like to start at a "low" dose.  The doctor I was going to at the time did not make the right calculations for me (I switched from morphine to methadone); it wasn't until I was dying a week later w/ withdrawal and severe pain, that it was determined I was started at the equivalent of 1/8 of my morphine dose.  Anyway, I've been on it two different times over the last five years.  It did not work well for me; in fact, out of all the meds I've been on, I'd rank it at the bottom.  But this is just my experience.  I know it works for others.  --Tina
Posted 11/7/2008 7:20 AM (GMT 0)

Hello H.W.

Thank You Shannon,pamela and tina for the eperiences.I have Complex Pegional Pain Syndrom(CRPS), its a nerve disease that is at this point uncurable. All this condition does is cause excrusiating throbbing,burning and stabbing pain 24 hours a day.The only time I dont has such bad pain is when I take my pain med, Or when I am sleeping, and even then I take ambien CR to sleep aprox 4 hours, BUT I'll take it. It is in my right foot, and I have tried every med possible along with aprox 15 surgeries along the way. I have used the whole percocett line,fentenall patches,oxycontin,amitriptilyne,morphine I cant remember them all but i Know when I visit my PM she is a little overwhelmed on what to do to help me next. Its been 4 years.

Sorry to go on, but some of you did not know who I was or what I had.

But anyway the methodone really does'nt sound that good by the experiences I have read?? It sounds like they have to give you less meds to verify its working accordingly, and then week by week bring up the dose. I am so not into that right now, but my PM said it's the only thing I have never tried, so I feel I owe it to myself to try it, but I hate going into it with low expections.

Right now I take cymbalta,lyrica,dillaudid,ambien cr,tizanadine and a cholesteral pill. All the oxy's and another long lasting starts with a p have made me feel sick. So I am back on dillaudid all day taking pills. I wish there was something that could last even part of the day so I am not taking pills all day so I dont start shooting up the pain scale to a 9 or 10!

         Thank You all For Donating Your experiences,

                  Hope I can do the same for you some day!!

                                    

                                             Kind Regards,

               

                                                     mike

Posted 11/7/2008 10:00 AM (GMT 0)
Mike,
You have some VERY serious pain issues! I thought mine were bad until
I read your post. Even though mine doesn't reach your severity, it is
still Intractible Pain. It's Always with me. I went to my Grandaughter's
second birthday party this evening and felt awful. At that joyous moment,
my pain was such that I didn't have a good time and had a difficult time
smiling for those ever- shooting dam cameras.
Methadone isn't the way to spend your pain time. I've read that it's one
of the most effective pain medications and it has been that for me for
quite a while.
Dilauded is STRONG. I think it would make my pain go away, but it
sure isn't helping you all that much.
What do you know about Pain Pumps? Supposidly they use just a tiny
bit of Opiod med and Baclofin or whatever. They deliver the medicine
to the part of the spine that suffers. The medicine doesn't go whizzing
through the kidneys and liver.
Try going to www.pumpsters.com. I haven't been there yet because I've
had some bad experiences trying to register at various places. Let me
and Momto6boys know what you find there. She has registered but has
not yet received her invitation. Maybe it takes awhile? I dunno.
It's late & I'm tired and Owww. I do hope I've made sense. If not, I'll
try again.
I think I'll go watch "The Office" I recorded it earlier this evening.
Pamela Neckpain

Post Edited (Pamela Neckpain) : 11/7/2008 3:08:52 AM (GMT-7)

Posted 11/8/2008 2:27 PM (GMT 0)

Hi Mike,

I think Pamela gave you best case scenario on Methadone. I know of several people personally on it and they have done very well. But, none of them had your problem. A few are on it for back pain, one is one it for severe migraines and some of the others various CP syndromes.

None of these people are on BT meds and the drs will not give BT meds with Methadone. Methadone builds up in your system over time and stays there. That is one reason drs start people off on a low dose and titrate the dose slowly. Methadone is one of the most dangerous drugs to accidently overdose on. Drs are generally pretty picky about what patients they will try Methadone on for that reason. It must be taken exactly as prescribed because of how it is metabolized by the body. The people that have accidently overdosed on it are the ones that did not take it as prescribed. They decided to take another pill or two too soon because they thought the first pill wasn't working. These folks get sleepy and lay down and go to sleep and do not wake up again. They actually suffocate in their sleep. Not trying to scare you by no means just wanted to let you know how Methadone works. Its also a drug to be taken for long term use not short term.  Methadone is a hard one to get off of too, it can be done but its along process since it builds up and stays in the system.

I too had tried every opioid coming down the pike. I either had a full blown allergic reaction or the side effects were intolerable. I ended with a Medtronic pain pump in June 05 and life is fairly decent for me. It was the best decision I could have ever made. I am functioning pretty good and thats the goal of a CP patient. I am not pain free but I can manage what I have now. No CP patient will ever be pain free unless they are a zombie per my pain dr.  I have four drugs in my pump with Dilaudid being the main drug. I also have oral Dilaudid to take for BT pain. My pain dr says Dilaudud is the strongest of all and it has fewer side effects.

I sure hope you get some relief soon. Susie 

Posted 11/9/2008 9:05 AM (GMT 0)

Hi Guys,

Thanks Pamala and suzie I really appreciate your help and support. Man, at this point I have had soooo many surgeries and am scared to death of them now. I used to not loose a blink of sleep, but after so many failed, and all the remaining scars and parts of your body that will never feel the same again I have kinda lost some of my nerve. My biggest recent past sugery was a spinal cord stimulator that they had12 wires in my back. 8 went upward and 4 went downward with the power pack under your skin pant level. You could recharge it by holding a recharger right over the skin were the power unit is. It just charges right thru the skin. Needless to say, it was the absolute worst thing i ever did. The electric wire were zapping me everywhere but in my foot.My ASS had a hell of a workout, because thats were most of the wires crossed!. So I got that removed ASAP which was 6 months! I still have an empty pocket in my side of my back with chronic spasms to go along withit. I dont know how long that will take to heal on the inside, man that was a lame piece of meat procedure.

   Anyway the methadone sounds a bit unerving......

I dont want to take 2-3 weeks before I find out what dose I can be on. I am very consious about withdrawals and in this case(the first one) worired about the initial dose being too strong. You said that there is no BT when taking methadone? what about a smaller version of it, or quick release tabs.

Sometimes I dont like the feeling of not being in control of my meds, like having to wait it out even the current dose is not working to well in the body at that time.

    Suzie, you have mentioned about your pain pump.If you dont mind,how and why did you get one.(im sure the why is becuause you have tried every opiod know to man!) I often think about that, can you walk and get around to the food shopping and drive etc.....

  Did you have any problems with the pump in the beggining with the procedure or first medication input??

 Sorry about all the personal questions, Its somthing I have been thinking about and usually you cant get honesst answers from the doctor or rep for the pump.

Well at least football is on tommorow(i mean today!) I live in Boston so its all Patriots,Red Sox and celtics around here. Its nice to sometimes forget your pain for just a little bit becuase your entertained by somthing else.

               Thanks again Pam and suzie and Tina

         Hope Everyone Has A Pain Free Day!!!!!

                       Kind Regards,

                             Mike


Posted 11/9/2008 10:02 PM (GMT 0)
Hello Mike

I too am living with CRPS(in my R. knee). Unfortunately I have been through a lot of similar situations. Although I do get some relief from the morphine and other drugs I'm on(almost the same regime u follow)...the pain never goes away. It's a struggle every day(had CRPS for 2 1/2 yrs, on set when I was 23.). I was wondering if you have heard of the success of medically induced ketamine coma? They are doing experimental treatment in LA (don't know where u live). Anyway I think that is where most of our hope lies for ppl like me and u.


As for the original subject of methadone, I have tried a lot of opiates however methadone did nothing for my pain and made me extremely sick. I would get sick from just the smell of food and the idea of eating did the same. I was miserable and don't think I'll ever go back to that. However as it's always stressed ppl react differently to the same med.

Anyhow I hope everyone is doing ok.


Peace
Posted 11/10/2008 1:52 AM (GMT 0)
Sometimes I read posts about surgeries for pain and I can't help but think that
some people get an additional whack from surgery. It's like PTSD. I wonder if
doctors think of that.

I wonder if I'd be a candidate for medically induced ketamine coma. I have a
pain level of 7 when I'm up. When I sleep I'm painfree. (I can't sleep more than
three hours and always prefer to sleep in the daytime.

Oh, I dread the night.

I hope we all feel better.

Pamela
Posted 11/10/2008 1:56 AM (GMT 0)
I'm near LA. It would be very hard for me to travel the 4 hours but I
could make it if it meant help for my pain situation.
Pamela
Posted 11/10/2008 2:39 AM (GMT 0)
You can certainly find all types of information for experimental treatments on the web but I'm almost sure that the people researching ketamine comas are only experimenting on people with CRPS(RSD). I myself went through experimental treatment at a major NYC hospital in which it was very hard just to be chosen as a candidate. They have extremely defined criteria for treatment.

You might just want to look up the major hospitals in LA and search for your diagnosis and see if they are doing research for something that might apply to you. They might even have a link for research projects. That's basically how I found my treatment. I too had to travel 4 hours to my Mom's then commute to the city every day which was another 3-4hrs. a day. It was hard but I felt I needed to do everything in my power to get better. Unfortunately the treatment worked somewhat temporarily and was not a good long term treatment.

Good luck in searching. Hope you find some answers and some relief.


Peace
Posted 11/10/2008 7:28 AM (GMT 0)

Hello H.W.,

Thanks for the reply BL , I live in Boston MA, and was going to the Beth Isreal Decones Medical Center. They have a pain management ward there that is very popular in this area. That is mostly where i have had alot of my surgeries. One of the last things I did there before moving on was having ketemine infusions. They last around 5 hours, because the med needs to go into the body slower than other infusions. I had 3 of them, the second one I told them to speed up the infusion to 3 hours instead of 5 and man was I completely out of it. Then after it was completed I felt so sick for a day when I got home. After that I went back to the 5 hours again.

I thought that they where somewhat helpful, thats why I had 3 of them, but after the third one I told them I did'nt want to do any more because I felt as though they really were not as helpful as I had hoped for. Not to mention I really was drained from them, I mean It's like having a 5 hour surgery every time you do it and we all know how we feel after some of those extended surgeries!!

So BL are there people being cured in those ketemine comas in LA?????? I am at the point that I will try ANYTHING within reason or should I say that has had success in the past. I just started looking into those hyperbarik chambrs(spelling i dont know!!!!) of just pure oxygen. I guess you can have like sleepovers or apptmts or somthing like that, but like I said, just looking into it for now,Im sure it would be one of those insurance hassles.

I was taking morphing for about two years or so and right after my SCS was put in the pain was excrusiating so I ended up being like 5-6 days early on my monthly prescription, so I called for another script and the doctor denied it. And I was taking alot of morphine along with the usuall musscle relaxers so within 1 day I started to withdraw and by the second day I was literally climbing the walls and flipping out like no other time in my or anyone elses life I had seen. My wife had to hide me from the kinds to go to school and right after, we went strait to the ER. I lay on the floor there for about three hours then some guy picks me up and drags me to the info center. They end up putting me in a bed in back and called my PMD docror again (who buy the way, he just put the darn SCS in me!!!) He just denies the script again! (if i abused scripts from him before i could understand but this guy just turned anal on me)So to end this horror, They give me a shot of dillaudid and called up for a detox center. I literally wait there for more than nine hours more, inbetwen they gave me another mercy shot of dillaudid and kept telling me that there not equipt to handle people like me...............

The taxi finally came dropped me off at happy houe and I just about died there for 6 days, because not only was i withdrawing of morphine, I still had  lyrica,cymbalta and musscle spasm meds. I ate 1 piece of toast with some peanut butter on it and a smal drink the entire time I was there. It was by far the most satonistic death hell experience I have ever had to go thru.

Then as soon as i walk in the door I have to explain where daddys been for the last week.Sorry for going off on this mess,I think I have wrote about this once before, but I would not wish it upon anyone I know!!!!

Hows the weather in LA? do any MX riding out there?

              Keep Safe,

                           Hope Everyone Has A pain Free Day

                                            Kind Regards

                                                       Mike

Posted 11/11/2008 1:49 AM (GMT 0)
I'm so sorry to hear about your horrendous experience with morphine. I have been in your shoes as well. Because my PM doc. wants me to use as little meds as possible I only have 20mg Kadian every 12hrs. and Morphine sulfate 15mg 2x's a day(because I'm so young). I used to be on 150mg of morphine a day so this is a big change for me. Some days are unbearable especially with the weather changing here in NY. I'm sorry if I misled you but I only read about the clinical trials in LA online. I was in an experimental study in NYC at Beth Israel(how ironic) I tried electric stimulation of the brain to try and stop the pain signals. The only thing that happened for me was a decrease in sensitivity but only for 8hrs or so. I was wondering if you could share more about your experience with the ketamine fusions. I'm curious if that's something I could possibly try. Anyways I'm sorry if I'm babbling I'm not thinking straight right now. Hope you had a lpd.

Peace
Posted 11/19/2008 5:29 AM (GMT 0)

I personally know many people that get methadone from a pain doc here in Nashville..and everyone of them get Lortab 10 or Oxycontin 80 for BT pain....As a matter of fact I was getting Lortab 10 myself for BT.  Of course I don't know how good of a doc this one is..I have heard that he is only in it for the money (he doesn't take insurance).  Now, the doc I was seeing wasn't like that at all and he die give me BT meds as well as methadone..

Posted 11/19/2008 6:38 AM (GMT 0)

Hello BlizzardLizzard,

Yes the ketemine infusions where the new hot thing at the Beth Isreal Boston. Might still be, I was only the second person they ever tried it on. Like I said they take like almost 5 hours for completion, and keep you for another half hour or so to make sure your not too woozy when you leave. They will ask you if you felt any better the day or two after the infusions and then book you for another.(usually it takes a couple of times to see if it actually works for you or not).After the next one you should kind of have an idea if you think that these work for you or not. I opted for a third infusion, just to make sure(i really couldnt tell yet) After the third I could tell that I was not getting better to the percentages that they were looking for. So I stopped.

  I did see some people that did like it(so they said) and had recieved some good decent relief.

  Thats when I had just about used up everything that the BI had to offer. One thing before I go, was lidocain infusions. I had one with no effects so that was that. I use lidocain patches every day at home anyway.

  At this point in time Just started methadone with some dillaudid for breakthru.I have been only taking it for 3 days so far and will be having the mg's increased on friday. They started me out on 5mg 3x daily.At this point of crps the dillaudid definatly was not working enough. it was time for another change. Hopfully this will be the one to actually take away some miserable pain,just enough so I can actually partisipate in thanksgiving!!!

  Well BL I hope this helps as far as some experience, but only one persons view. It may have better results when you try it.

  Hope Everyone Has A Pain Free Day!!!!

                             Kind Regards,

                                   Michael

Posted 11/19/2008 6:46 AM (GMT 0)

Pamalaneckpain,

I remember you saying you took methadone. What dose are you on, now that it's been a while. (sorry if it is too personal)

Also do they approve medical marijuana in LA? tongue

Just a few thoughts!!!!! idea

Hope Your Having A Pain Free Day!!!

Kind Regards

Michael

Posted 11/19/2008 7:09 AM (GMT 0)
Hi Mike, yes, I remember when you tried the SCS and I remember you being hauled off to detox. Jeez, I had totally forgotten about that. That was plain barbaric as far as I am concerned.

I am asuming you are with a new pain mgt dr, correct? Now, something I would want to know is if anyone has had success with Methadone for your type of pain, meaning RSD or the newer name they have given it. I do know on Methadone you are started out on a low dose and gradually get titrated up to a therapeutic level. Talk to your dr about seeing you every week or every two weeks for adjustments that may be needed in the doseage. That way you are not hung to far apart on appts and possibly having to wait.  I was working for an atty when RSD was first being dx'd by drs and I remember ins companies laughing saying it was a crock of doo doo, that is was not an illness. Which meant these poor people got no care or treatment. Th drs back then did not have a clue either on how to handle it. They were always being sent to a pain dr cause the others wanted no part of it because they had ni idea what to do for the patient.

You asked about my pump. I have had chronic pain for years. Short of surgery I have done the gambit. My facet joints are bad at the bottom level L5/S1 and let me tell you they will cause some heavy duty pain and a fairly large bulging disc at the same level. I have disc herniations in my neck at two levels, ( refused surgery) right shoulder impingement, permanent nerve damage in both arms due to needing ulnar nerve transpositions in both arms, (refused surgery this surgery does not have that much of a good result) due to a fall off of a motorcycle, OA in all my major joints, neuropathy in my feet & hands, 4 knee surgeries on the left and 1 on the right and good ole crohns arthritis. I do not tolerate medications well at all. This is all meds not just pain meds. What meds I could take were very short lived. My dr said because of the medication problems and pain being in so many different places no pill could ever cover the pain that my best option was the pump. At least with the pump I did have options of different meds.Receing  medication this way is totally different than oral meds. It took a year to get me at the correct level of meds with my pump. However, this was because of other health problems, instead of getting 20% increases I got 10% for a long time. I do have BT meds for it. To me once we got my meds up, life was good. I still have pain but nothing like before. In fact most of my pain is from over doing things because I feel good on alot of days I can do pretty much anything. But, walking, shopping, driving a car, planting flower beds, no highs, no lows, no clock watching waiting on when its time again for more pills. I love it, its been a life saver for me. I have a three yr old grandson that relies on his Granny to be his playmate when I have him. I know the pump is not for everyone, people have had bad experiences with them, but I am a success story. Its implanted in my stomach on the right above the beltline and I don't know its there anymore, unless I were to bump it. Ask away any questions you have  and I will do my best to answer. Susie

Posted 11/19/2008 7:35 AM (GMT 0)

Hi Straydog,

Its great to here someone that has a good resolvment from ungodly amounts of injuries. Sounds like you can have a little taste of freedom when shopping and doing the things that you have wanted to do for a long time.Sounded like a tough road to get there, but It's kind of nice to hear somone talk about some good things instead of hardship all the time.

This methadone I'm starting seems to have no bad effects on me so far and looking forwaed to raising the mg's because I get the feeling a little more and I might be in the right ballpark myself(hopefully!)

Than You very much for your input,in my mind the only way to get an honest answer for some kind of procedure is expeience from legitamet people who have been there. Good or bad the answer will be truthfull.

Thanks Again Susie I apreciate it, smilewinkgrin

Hope everyone Has A Pain Free Day

               Kind Regards,

                         Michael

P.S. sounds like you had a very outgoing lifestyle before all this mess came up! scool

 

Posted 11/19/2008 5:42 PM (GMT 0)
crps:
i am offered 120 mg a day of Methadone from my pain Dr. I take 100
mg. a day. I need the full amount but I'm so afraid of something happening
and not being able to get my prescription anymore.
MJ is an ok thing in LA. Anywhere in CA, actually. I've tried it and it
makes me tremendously aware of my pain. A lot of people swear by it.
You need a license to get it.
Pamela
Posted 11/19/2008 10:54 PM (GMT 0)
Hiya CPRS

Thanks for your own story. It seems like you've been through a lot at BI. Wow I didn't even know you could get lydocaine infusions(I use the patches everyday). My experience at BI was quite stressful to say the least. I've found out that patients in waiting rooms don't always give you an honest answer about procedures. Anyways I just came home from seeing my PM and he adjusted my back and gave me trigger point shots in the shoulder. Believe it or not this is the best I've felt in a week. Now I can actually move my neck.


Do you go to any support groups? I'm sorry if that's too personal but, I felt great relief going to one for the first year that I was in chronic pain. I guess in a way this site is a support group however sometimes it's more helpful in person.


Hope everyone had a good day. If you didn't just remember things might be different tomorrow.




Peace
Posted 11/20/2008 7:54 AM (GMT 0)
Hello B.L.

Glad to hear the shots are giving you some relief!

I have never went to any support groups or anything like them. I'm just not a people person in that respect of group therapy. I had tried it one or twice when mandatory requirment at the time made me, but even that was a one shot type deal and I did'nt even say anything.

 

I think I would be more truthfull and helpfull right here where we are at H,W. and somtime I go over to a CRPS site and mostly listen in.

 

Well, I guess that's about it for tonight but If anyone has questions about procedures and operations,Pysical Therapy or anything else on CRPS I would be glad to share the good the bad and the ugly! with you(just a little clint humor).

 

Pam I am taking 5mg of methadone 3x per day. My Pain Doctor said she will increase it by friday,(how much i dont know) I do like this starting off slow because I dont want to just overmedicate myself right rom the begining. I she her on a weekly basis.I also can continue with my dillaudid 4mg's 5x per day if needed.

 

If I missed anyone or any topic, I apologize I'm getting really tired about now. The ambien cr is kicking in about now. I will try to stay in touch with everyone and hopfully together, we will all have positive results mentally and phisically.

 

            Hope Everyone Has A Pain Free Day!!!!!!

                              Kind Regards,

 

                                         Michael

Posted 11/20/2008 10:26 AM (GMT 0)
Michael,
I'm glad to know that Methadone is treating you ok so far.
I'm also glad to know that you have awareness of Methadone and how careful you
have to be. It will be fine just as long as you abide by its rules. Treat it right
and it will treat you right.
I made quite a few hysterical phone calls to my Pain doctor as I was tapering upward
with Methadone. He kept saying, "Give it time. Give it time."
So I did. And the doctor was right.
Pamela
Posted 11/20/2008 10:55 AM (GMT 0)
Mike will be praying that the Methadone is the way for you to go. It can be a great pain reliever no doubt. As Pam said it can be good to you if you are good to it. I am glad you are getting BT meds as alot of drs will not give BT meds with Methadone. Like you say, starting out low can be a pain but we don't, want to walk around over medicated either to the point of being loopy. I hated that feeling. I remember once my pain dr put me on something called Norco, they worked great if I took ten a day, which was way more than I was suppose to have. I went in and told my pain dr how many it took, he said "oh thats way too many" so he gave me something else. lol. Yes for some people the pump can be a great life giver. Oh, I don't have my old life back by a stretch of the imagination, but it a new different life. I have often wonder how the pump would help someome such as yourself. Your condition is still one the drs are still out there punting trying to figure out what to do next. So little is known no matter how much they research it, they just don't know that much about it. Lets hope for a LPD. Susie
Posted 11/20/2008 11:07 AM (GMT 0)
Susie,
I think Norco is pretty much just anti-anxiety medication. When it's mixed with
Tyleonol it's called Vicoden. Oh, I remember the days when Vicoden worked.
Those were the good ole' days.
Everybody is up! I haven't been to bed yet.
Pamela
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