Health Organization for Pudendal Education

OK everyone, I have been away again.. .sorry... but I want to say hi and let you know what has been going on. As some of you who know me, you know that I have been medically managing my PN/PFD and for a while I was on Cymbalta which I tapered off of several months ago and then I was on Kadian for a bit, MS Contin for a bit, and then finally Methadone. None were ever at very high doses and I did have trouble with constipation, and was hospitalized once with diverticulitis. So, just for some perspective, my Kadian dose was 20 mg bid, and then my Methadone dose was a total of 20 mg a day. I got excellent pain relief especially from the Methadone. I mean it was usually 0-2. However, and this is the big however, I was always afraid of going down the road of tolerance and increasing doses due to my GI history and also I am just afraid of the high doses. So, I had this pact with myself that I would only increase my dose if my pelvic pain flared and if so, then I'd ask for a dose increases. So, I've been on one form of opiate for 4 years now, either short acting vicodin, then up to the long acting. Well, the past year and a half, even with my pelvic pain controlled, I was suffering from some other symptoms that were really disturbing my quality of life. It really puzzled my doctors. Each night mostly, I would have terrible insomnia, sweating, ringing in my ears, and searing bone pain. My dr. sent me to see neurologists to see if I had fibro...they wondered if I was developing hyper algesia from the Methadone... maybe it was some weird menopause. So I had been all around the block. Well, I finally figured it out over time. And what I figured out is that I was experiencing low grade chronic opiate withdrawal. I brought it to the attention of my pain dr. and she said it was highly likely. We had a long talk and I just told her that I really want to do a holiday from opiates and see what my baseline pain is like. I mean, maybe now, for me, a nortryptiline, or some other gaba drug might be just fine. So, here comes the party- My pain dr gave me a tapering schedule for the Methadone and it was way too quick ( I should have known better, but I was so hopeful. I sure wish my body would read what the dr's write and just do what they say on that rx pad Soo... oh boy.. I threw myself into a major withdrawal syndrome and I do not ever ever recommend this to anyone. I did not sleep for 3 nights! They have given me some Clonidine and Baclofen and that was supposed to help but I was completely and utterly wasted and it was not the fun kind. I felt like an overcooked noodle that had been thrown on the ceiling. So, luckily, on that Friday, 3 days into it, I told my husband no way can I do another day and he got me in with this great doctor, my new primary doctor now.. who also prescribes suboxone which is used as an opiate taper. The main drug in there is called buprenorphine which is a unique opiate which I'll tell you more about. Anyway, so obviously my body has developed tolerance which we knew of course, and that taper was too quick. So, the suboxone is used to help people - pain patients, cancer patients, people with addiction history, taper gently, slowly and humanely. My dr. said it will take about 8 months but in the meantime I have great pain management. IT's at 0 most of the time! Think of the taper like one uses a nicotine patch to stop smoking. I'll probably decrease it evey 2-3 weeks, at very slow increments and that way I won't feel uncomfortable. Now, what I wanted to say about the ingredient buprenorphine, is that it is now out in a patch form and it has different properties in the way it only partially attaches to opiate receptors and I guess that means for us that there is less tolerance and escalating doses. Frankly, that is what I was looking for. So, at the end of all of this, if my pain is so so so bad.. and I can't do something like Nortryptiline, or a Lyrica drug at least I know this is an option. SO, I just wanted to share my experience so no one else has to go through this. As my husband reminds me "This is NOT a RACE!" So, for about 10 days I was a mess- like the worst flu of your life on steroids and your brain is all confused! That kind of mess. I do not recommend it. Well, that's my story. And, this is important, I would really like to know if anyone else is taking buprenorphine and is so could they comment. Best to all of you, Cora. I'll keep you posted on the taper

Cora,
Thanks for sharing this info and your experience. Pain pills have made it possible for me to have a reasonably decent quality of life but I am looking forward to the day when I can toss them away. I know, however, that withdrawal can be a nasty business as you describe. This drug sounds like a way to make it less miserable.Keep us posted on your progress

Best Wishes,

Don

Absolutely Don, and we all deserve that quality of life and I would have stayed on them if I wasn't running into trouble, you know? But, what I wanted to share is that I don't think pain dr.'s at least mine never did, nor my other primary care dr did.. tell me that a normal taper like I did off Cymbalta might not work.... so again.. I just want everyone to know that you don't have to feel anxious about the process if there is a day that you choose to taper- keep in mind there is a humane, compassionate method out there. This information is really really hard to find and it should not be.
My best,
Cora

Hi Cora,
I am glad you found a better way to do the withdrawl thing! How are your pain levelss at this time, or is it hard to discern with all the other stuff your body has been doing to you?

Oh, Cora. This has just been a horrid process for you! I am so so sorry for this nightmare. You are so kind to put all this information out there for the forum, because you're right, people need to know there is a humane and dignified way to do this. I'm glad you've got a glimmer of hope with this suboxone.

We'll chat more later.

lots of love,
Lauren

Her Majesty, the most amazing thing is that my pain levels are very low- like 0-2 . And that is the bind I was in... the brief period that I was on the Methadone.. my pain was completely controlled- there are pain receptors, I think called NMDA ? that the Methadone attaches too and it completely interfered with my PN pain. Completely. That is why I was in such a bind... and that is why I refused to increase my doses. Even with the chaos of late, my pain levels have been pretty low and now that I have slept a few nights.. and this Suboxone which is made up of buprenorphine, it is completely covering my pain. But that is with the usual precautions I take.. I mean I can't go sit through a movie or anything like that.. all though I did go recently and I sat in the aisle and then stood up in the hallway to watch a movie. So, now.. on this suboxone, the buprenorphine is covering my pain and it is covering my withdrawal, and I am rested and I feel great. I have to really keep my mind in a good place and not go to a resentful or angry place that I could not get these doctors to truly listen to me.. although I think they listened.. I think they were just ignorant. And then, when I saw the pain dr... she got it.. but the taper she prescribed was quite naive. However, I don't want to waste another joyful minute,... so I am moving forward. My hope is that some of the centralized pain will be toned down.. and my goal is to try other meds like Nortryptiline , Gaba... something like that. I so apologize for not being around much. I was just so low on fuel and now I understand how and why.

Cora

Cora, this is good news that you have found a medication that will help you taper off without feeling so dreadful. Your husband is absolutely right about it not being a race! When I went off lexapro I was a bit worried because I had heard some withdrawal horror stories but I took over a YEAR tapering off of it and had very few problems. So take it slow and easy - you'll get there eventually.

Violet

Cora, yes Methadone blocks the NMDA receptor. Some CRPS/RSD dr.'s are using it because they get better pain control. Glad you are able to taper off of your drugs, even with the blip along the way trying to figure out the best way to do it and I'm glad it is going well now. Keep up your spirit. As you know negative thoughts will just drag you down, can't have that. Keep us posted on your progress and I'm so happy for you.

Cora,
Fow what it's worth, I have found Lyrica to be incredibly helpful with none of the draggy somnolent side effects of the opiates. I found it much beter than the gabapentin. You have to fight with the insurance to get them to pay for it but it was well worth it for me. Some people have intolerable side effects on Lyrica but you don't know till you try it. It is a little spacy right after I take it but nothing dangerous and I can work on it. I am also of course completely addicted to the hydrocodone I am also taking and know I will have to get off it when I resolve my PN. It hasn't really cut into my quality of life as much as you describe so I am fortunate in that respect. If I am having a really good day and forget to take it, my nose starts running and my eyes get watery by dinnertime so it is definitely a two edged sword. Thanks again for posting this valuable info, Good luck.

Best Wishes,

Don

Cora,

I'm glad to hear that you're doing so well. Thank you so much for sharing your story, it is a true cautionary tale for the rest of us. That your pain levels are so low is wonderful. Keep it up!