Pain management/ Suboxone?

HELP! I have a question that I hope someone can answer. I have been referred to a pain management/ addiction specialist here in Ann Arbor, MI. I am currently taking 600mg of Tegretol a day and it kind of works. Still in pain and i just worry that i know it won't really help me when I have an attack. I also take when needed, 1 to 4 Vicodin a day depending on the pain. I have been diagnosed with Atypical Facial pain or Type 2. I have now seen 3 neurologists and 1 neurosurgeon and i wont even tell you how many others. About 12 in all right now.

Anyway these pain people only deal with addicts! I am not an addict yet. The Vicodin works but is not a long term solution, that I understand. I would like some other form of treatment. They want me to come in on Thursday and take a drug called SUBOXONE (buprenorphine). This is used in long term pain management for a variety of pains. Primarily it is used for herion and morphine addicts. Again I am not an addict. This is also another form of opiod (sp?). Trading one for the other. I am not a candidate for surgery because my pain moves around. I just hope that there is something else. I have come to terms with all of this, but I am still hopeful I can win somewhat. IS taking a drug from heroin addicts the solution???? Does any one have any advice or comments ??? :)

Stef who is one of the moderatiors here has done a great write-up on her experience with pain medications, both the good and the bad .

Thanks I will take a peak again. I must be doing something wrong here. Thankfully you answered me
Haven’t gotten any help from anyone else. Just haven’t heard of anyone using this drug yet. I’m going to postpone the apt. Feeling railroaded by them. Don’t like it.

Ann, sooo sorry you are having such a hard time.I hope you find answers soon! Let me tell you what I know from my own experience with suboxone.I ended up physically addicted from being on opiods for at least 15yrs.I decided to come off the opiods to see just excatly how bad my tn was and if any of my pain was from the opiods.My only backup plan was to get on suboxone not just for the opiods addiction but was told by the Dr. that it would hopefully help with the tn pain.WRONG, WRONG, WRONG! I was SO sick from the withdrawals even had a couple of mini strokes.I was SO sick for the 1st 2 months and in SO much pain from tn1 and2.I did not realize how much the pain meds were really helping! The suboxone did nothing for my pain. I also did not know that by being on suboxone the medical field automaticlly looks at your records and sees suboxone and says ah ha must be a druggie! At least that's the trouble I am having trying to find a new pain Dr. here in mi.This just angers me, it is just WRONG in so many ways. So I am sitting here in constant pain knowing diludid will stop this HORRIBLE pain and no Dr. at this point that can or will help.Ann I 'm sorry I have went on and on, hopes this helps some. Wishing you a beautiful and painfree day! Soft Hugs, Dawn

Ann, I 'm sorry but I don't know how it works in other States but here you are on suboxone for long term, at least a yr. or better, you also have to be active in counseling, at least once a month. you also have to go to the lab a hour before your suboxone app. to peer in a cup to make sure you have no opiods, no norcos, vicodin, klonapin, etc. in your system that will get you cut right off of the suboxone.Then there's what everyone familiar with suboxone calls it the suboxone mouth.It takes 20mis. or so whether it be a pill or the strips you Have to dissolve them totally xunder your tongue. If your tn pain makes you sick to your stomach adding the suboxone only made me so sick I had trouble keeping anything down, but that's just how my body acted.One more thing suboxone is very expensive! Hope this helps! Soft Hugs, dawn

Thanks so much Dawn. So very sorry to here how bad it is for you. Hugs :) I am going to give the Suboxone a try tomorrow. I will still stay on the Tegretol also. BUT i am so excited i just called Dr Casey this morning and I got an appointment with him in 2 weeks. I hope that he has all the answers. Hopefully there is something else. Thank you and good luck to you!!

Hello Ann,

I have been apologetically absent from site activity for a long spell due to the demands of work. This is only my personal experience, but if you check out the progression of my posts here on the site, you'll see that I swore by many pain medications, at first, but each would lose it's effectiveness. Although Neurontin and Lyrica may have brought some relief, the only thing that really worked, for me, for a long time, were standard issue opiods. I started with Hydrocodone, followed by Oxycodone, Fentanyl, Methadone, Oxycontin, or those medications in various combinations. Every time I had thought I had found the "silver bullet", I was proven wrong. My body would adjust to the medication, any my pain level would rise to meet the level of pain medication I was taking, until in November of 2012, I realized that the cure had become worse than the disease to me. At least the disease was not killing me professionally and physically. Red, a top contributer of content and advocate for facial pain patients for a number of years, once shared with me that he only knew of one person who had been able to manage taking opiates of chronic pain for 20 years. Since Trigeminal Neuralgia is chronic and debilitating, yet not fatal, I realized that I would either let the medications slowly kill me, or fight for life with pain. My Pain Management doctor was prescribing me 40 mg. Methadone and 90 mg. Oxycodoe daily when I checked myself into a dual diagnosis unit for detox, as I did not want my family to see me go through suddenly withdrawing that medication from my opiod dependent body. By that time, I was experiencing horrible stomach pain on a daily basis, waking up in the night almost every two hours, having to lie down at lunch in my car at work because I felt so poorly, and nodding off in meetings. My eldest daughter had told me that I was not "really alive, just less dead". So, something had begun to click inside of me.

I realize, at this point, what I am saying does not pertain to you, being on Vicoden. As a Mother, I had been chasing a way to get rid of the pain and be myself again, taking good care of my children. Opiates had been the only thing which had ever worked, but always, for me, needed in ever higher doses, to control my ATN pain.

A dual diagnosis unit - I do not know if I recommend this, or not. I was thrown in with street drug abusers, and people with severe emotional disorders for a week. When they told me their stories of craving a drug, or having deep seated traumatic scarring, it was hard for me to relate. I had lost a husband young, and have suffered many traumatic events in my life, but it did not make me unable to function. The doctor did not recognize that Methadone is different to withdraw from because it is a synthetic opiate, etc. Overall, a horrifying experience. However, I emerged leaving Methadone, at least, in the dust. My body needed something when I came out to be able to work, as I was still in horrible withdrawal. I took my Oxycodone and Diazepam. Finally, I had had enough. My pain always reached up for more Oxycodone. I was DONE!!

Now, here is the part which may pertain to you, and I would really like to know what your experience has been if you've tried Suboxone. I began Subutex (Suboxone without Naloxone) treatment in April 2013. The pain control is not as perfect as it was taking traditonal pain killers, yet it definitely exists and is consistent. My pain does not always rise to meet and exceed the leve of Subutex that I take, either. After almost a year of being more life myself, able to work, and to go places with and take care of my daugters the way that I did before ATN, I feel safe in saying, it was a good bet for me, someone who needed pain control and was also opiod dependent as a result.

In my minds-eye, you have three options. 1) You could find another doctor who woud allow you to stay on the Vicoden, hoping that your pain levels do not "rise to meet" the level of the medication. If you are doing all of the things you normally do and without many side-effects, this could make sense, 2) You could wean yourself off of the Vicoden, of you do not wish to be opioid dependent. This would be the most idea thing, although difficult, and without the pain control that leading an active life may require, or 3) You could try the suboxone, as I read, it is easier to taper off of than most other pain killers. Simply speaking from personal experience (everyone is different, and this is not to be taken as a recommendation for any medication), this has been the best solution for me.

I take the kind that dissolves under my tongue. It works for my pain. I do have to watch my dosage, as it can make one drowsy, but nowhere near to the level that the other medications which I took! I do not have the gastric problems which eventually started with the other medicatios. I have clearer thought processes than I did even when I was only taking Hydrocodone for pain. Honestly, I pretty much feel the same, mentally and physically, as I did prior to ATN, or to taking other opiods. Another benefit, is that I can go a long time without a dose, if I am not in pain, and feel no withdrawal symptoms. I can only take them when I really need to, if I want, because of the long half-life.

I feel that Subutex (Buprenorphine) saved my life! I've had ATN for 11 years now, and have run the gauntlet of options, both with opiods, and with many other medications used for pain control (almost - you name it, I've tried it). That's me, though. I hope you do not let the doctors push you around into ANY method of treatment that you feel uncomfortable with.

I'm interested to know what you decided and what the outcome is.

Please excuse any typo's here. I don't have time to proof prior to posting, as it is time to pick my youngest up from ballet! :-)

Please update us when you have the chance.

Best,

Stef

Oh, one more piece of advice, Ann.

If I were you, I would request to be placed on Subutex, rather than Suboxone. If you're not an addict, only a dependent, you really don't need that extra ingredient Naloxone which is purposefully combined with Buprenorphine designed to prevent addicts from using opiods/opiates. I'm now of the mind, the less medicine, the better. I do not like t he idea of Naloxone. Once again, this is opinion, not a recommendation, which isn't allowed here on LWTN. It is just an, "if I were you, I would" statement.

I wish you the best of luck, honestly.

Stef

Going to a new Pain doctor tomorrow I have a St Jude PENS implanted in 2011, cannot find any st jude rep to work on programming so going to ask for suboxone for pain, anybody with any recent advice? Thanks in advance