I had an allergic reaction to a medicine that I was prescribed for migraines and on Easter of 2009 I literally died. I flat-lined 3 times and was in a coma for 18 days. Then out of the grace of god a doctor came into my room in the middle of the night and decided to try to Eckmo (sp:) machine on me. IT WORKED! Thank goodness I did wake up and although I had to learn to eat, walk, speak, etc. all over again. All of my organs are 100%. But I ended up with horrible drop foot on both feet and we don't know why, but also horrible bilateral neuropathy. I have been through so many surgeries just so that my feet would actually work so that I could walk again, however we can't seem to control the pain of the neuropathy, because we don't know how I got it. Anyway, I was on 50 mg of the Fentanyl Patch and taking 30 mg of Oxycodone every 4 hours since 2009. 2 weeks ago I was sent to a pain management doc and he switched me to subutex. I worked great for my addiction I don't want a Oxycodone, however the pain is still HORRIBLE...... I am taking 40mg a day of subutex and ZERO pain relief. My doctor wants me to come in tomorrow to switch me to Methadone. He says that will help with the pain. But I have heard soooo many bad things about Methadone and I am super scared. Isn't there anything that he can give me WITH the subutex for the pain? Please help!
Sorry for the long story, but it will help you understand : Well I did go to the doctor today and he prescribed me 40mg of Methadone once a day. I have been on 40 mg of Subutex for 2 weeks. He said to wait 24 hours to take the Methadone from the time I took my last Subutex. But the pharmacy said I only had to wait to hours. Hmmmm when can I take the methandone? Help please!
Welcome to the Pain Management Forum. I am glad that you found us and took the time to write a detailed post. I'm torn between expressing my happiness that you survived what could have been an allergic reaction that almost ended your life and telling you how sorry I am to to hear about your extreme pain. So I have said both. My family was told I would not survive the injuries of a MVA that I obviously did,.. but I too am left with extreme pain and some disabilities. I can relate to your situation.
My first question is the word you used "addiction". We you misusing your narcotics... running out too soon... taking too many, etc? Were you truly addicted ... OR just dependant on the opiates to control your pain? There is a huge difference. Is your "doctor" a Pain Management Specialist?
I wouldn't begin to suggest when you can take the Methadone. Obviously is your pharmacist and physician can't agree I certainly couldn't answer your question. Sorry. In my opinion the Pharmacist is the expert in medications.... but you don't want to go against the advice of your physician.
Methadone has some baggage attached to it's name. It was formerly thought of just a medication for addicts, not 100% true. It is successfully being used in pain management. There are many ppl that come to our forum and claim Methadone is the only thing that controls their pain. It was once prescribed for me when my physician began searching for a stronger opiate to control my pain. I had a reaction to the med and could not take it but thousands of ppl use it for pain management.
I am aware of any opiate that you can take with Subutex. The actions of Subutex interferes with the actions of opiates. It is usually prescribed for addiction. However it is one of those drugs that are now being used for pain management by some physicians... contrary to the literature and recommended uses of Subutex.
If you are not seeing a PMP I encourage you to do so. You might find this article of interest and I encourage you to read it.
I had the same questions on your post that Tuck did, as far as addiction versus dependency. I would think that if you are truly addicted versus dependent, than Subutex or methadone may be a good fit for you. My pain management team had discussed using methadone with me for pain management. I have some nerve pain that seems to be very difficult to treat with narcotics. But after doing a lot of research, I decided that methadone wouldn't be the right fit for me.
I have seen some articles recently regarding Subutex/Suboxone with regard to pain control. From what I've seen, it seems that some people are finding good pain relief with it and others are getting no relief with it. So, just like with most medications, it seems to depend on the person and how their body chemistry is as to whether it works or not.
I was not offered Subutex/Suboxone and when I asked about it, I was told my pain team don't use it for pain control and that if I was interested in it, I would have to do a 7 to 10 day inpatient program and then find a doctor that would treat me for pain with it.
My biggest concern with both Subutex/Suboxone and methadone is getting off it. Both have long half-lives and if stopped CT can have very difficult, drawn out withdrawals. Even with tapering off them, it can be very hard. It wouldn't be a concern if the plan is to stay on it for life. But personally, I am hoping to reduce my pain with other methods (probably wishful thinking on my part!)
In the research I did, it seems that methadone (if it's something you can tolerate) provides better pain control than Subuxone/Subutex. (Of course, this could be that there are more patients taking methadone for pain than are taking Suboxone/Subutex.)
It seems with most pain management patients it has taken some time to find the right medication or combination of medications to treat their pain adequately. Some people search years for the right physicians and/or medications. I was lucky in finding the right team to treat me, though it's been challenging finding the right combination of medications.
It seems as though you've already been on the big stuff ... both in terms of medication as well as dosages. (I was on similar dosages and still wasn't getting great pain control.) It may be that methadone would be a good fit for you.
One thing I'm curious about is how do they treat your breakthrough pain, if any? Is it hoped that if you're on methadone you won't need any BT meds? (My understanding had always been that if you're on methadone, other narcotics don't work. Though I'm unclear on whether that means they don't work if you're looking to get high and may work if you're taking them for pain control. I guess the same would hold true for Suboxone/Subutex. Though I have heard of people who do take narcotics (for purposes of getting high) while on methadone.)
It must have been a very frightening time for you going through all you did. I'm glad you recovered as well as have!! Though it sounds as though your pain is pretty bad. I know nerve pain can be very difficult to treat. I hope you soon find adequate pain control with whatever medications you take.
I guess the best thing to do is to research everything as thoroughly as possible before making any decisions. I hope you will update us with how things go.
As far as when to start the Subutex, it sounds like you've been giving conflicting advice on that. I, too, always think the pharmacist is the expert as far as medications go, and I very often go to my pharmacist with questions. I know that to start Suboxone/Subutex you are supposed to be in at least moderate withdrawals or you can go into precipitated withdrawals, and from what I understand, those are really bad. But I have heard different timeframes as far as how many hours you need to stop taking narcotics before starting. But what is a little unclear to me is the reverse, taking something while you have Suboxone/Subutex in your system and then swtiching. Suboxone/Subutex also has a long half life. But, again, I've heard of people that take the Sub before the recommended time has gone by.
I think I'd talk to the pharmacist again and also talk to my doctor again and explain the conflicting information. Better safe than sorry.
You are correct and I am sorry that I did not property write that. I had become dependent not addicted. My pain management specialist sent me to a dependency specialist for opiod tolerance. The new doctor has explained to me that he did not believe that I was addicted, as you stated Tuckamore I do not ever run out of pills early, I was not taking to many, my body was just not responding to the large amount that I was taking anymore I have been on the Methadone for two days now and I can't believe how much better my pain is already! Although my doctor and I discuss my NOT telling ANYONE (besides my immediate family) that I was on Methadone because although it is used widely for pain. People have it set in their minds that Methadone is used solely for addicts. I take 40mg of Methadone before I go to bed at night and I am still trying to deal with not HAVING to take anything during the day. But that is mental, I just hope that the Methadone will continue to make the pain better. Do you know how long that usually takes? Also I have included a video took of my hospital stay. You are welcome to look at it, but if you can't stomach stuff like that i wouldn't. I look forward to hearing from both you of soon!
I had a feeling you weren't addicted. You don't sound like someone that is just drug seeking.
Are you asking how long the Methadone will work? I would guess years.... as I have taken the same opiate for years and it continues to be effective. I believe, as does my physician, that rather then becoming tolerant to medications or condition tends to deteriorate over the years. ......Hence we require more medications or a change in medications.
It sounds like you have a wise physician. I agree that no one needs to know what medications you are taking...even immediate family members. The ONLY person that knows what I take is my husband. However my sister, also an RN has a general idea. Otherwise I share nothing with anyone else. It's my business, just as it's yours. It stops rumors and most ppl are not educated in chronic pain management.
I hope you'll be active in our community.... and continue to post and keep us updated. I am delighted to hear that the Methadone is effective for you. It's a great feeling to have good pain control. No one but we Chronic Pain sufferers can understand the importance of good pain management.
I wish you continued success and will also look forward to hearing from you often.
I'm glad to hear you are getting good pain relief from the methadone. And you're right, society has a huge taboo about methadone. I believe more people than we know use it for pain control.
I found out the hard way about giving too much information to people about what I take for my pain. I have always been a very open and honest person with everything. I didn't realize how people would react. I have had huge problems with my family regarding this. It's mostly my family that I have shared the information with. None of them really understands (and they don't understand about chronic pain either!) But my sister, in particular, has caused a lot of problems for me. She is constantly telling my dad, my kids, whoever will listen that I'm an addict. It makes no difference that I have offered to let her come to my pain management appointments; she chooses not to come and not get educated about it. At this point, we essentially have no relationship.
The worst of it is that she actually had me doubting myself and my physicians. It has taught me a huge, though painful, lesson. I will never again share this information with anyone. It is between me and my doctors and that's it.
Hope to hear that the methadone is continuing to work for you!!! I think as long as we educate ourselves, it doesn't really matter what works for us. As long as you and your doctor agree on things, that's all that matters.
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