Hello all 
So I was going to use the profile to enter background info but ... those fields are tiny and low and behold here I find the intro forum. So I'll use this to link back to. Thanks.
(on the less thankful side of things, for registering, "Random Question: What is the middle name of the most famous Lucasian Professor of Mathematics? (use lower case only)" ... that's pretty seriously debatable. I picked Hawking ... which would have been William ... but did you want Newton? Anyway ... )
I've been an opioid user for awhile now, with many years between and usually only for a couple of years each stretch. Until the most recent one of 3 years where I've been cycling down after bungled surgery.
My current state as of writing this is almost day 6 (in 2 more hours) of nearly cold turkey off of buprenorphine. Yeah, I know. Subutex is child's play for most folks but for me it's been the hardest of all of them to get off of. Today's the first day since going off that I've been able to sit upright at the computer to type. I've only been on 8mg buprenorphine + .5mg clonazepam daily for about a year (along with some things like Alpha Lipoic Acid, Androgel, etc). Prior to that I was on (even less significant) 2mg Levorphanol + Diazepam. Switching from Diazepam to Clonazepam was amazingly helpful for my myoclonus. Switching from Levorphanol to Buprenorphine was ... terrible.
Here's my days so far (by days I'm starting at the beginning of when I would normally have taken a pill, which means around noon, rather than midnight):
A clue to my state is ... I'm high functioning autistic. As in what used to be termed Asperger's. Something I've only really been coming to grips with in the last year. And reading up on opioids in Autistic people (including it as a plausible cause in some) is part of what convinced me to get off of things. The other reason (which I'm sure is related) is my relationship with my wife. Which is rocky, and not specifically my fault, but I can't provide the level of emotional support I need to do while on opioids. They shut me down much farther than many, likely due to the Asperger's.
I actually think that the partial agonist/antagonist nature of bupe is what has made this situation much worse. Sadly I didn't go on it with the intent to curb off of pain killers. After my most recent bungled surgery (see below if curious) I had decided I was likely on them for good at this point. I just made a point of doing partial withdrawals multiple times per year (48-36 hours) to keep my tolerances low. That was 3 years ago and the fact that I was able to subsist on 2mg Levorphanol daily for 18 months of the last 2 years showed me it worked well enough that ... maybe ... my liver wouldn't hate me too badly in the end. It was the emotional shutdown (which was worst for me on bupe, and I think related to the Asperger's issue) that has me getting off.
And I -may- not be staying off for good. I have some serious pain conditions. But I'll get off for long enough to find out if some combination of low-dose Naltrexone (LDN) and other things like Alpha Lipoic Acid (which I use in place of Neurontin or Lyrica for neuropathy) allow me to get through things. If not, then I'll see if those combined with an occasional breakthrough med are enough. If not then, once the marital issues resolve (and, regardless of medication, those will resolve one way or the other ... I just want to be able to put the best foot forward with them), I'll end up back on the opioids. But I'm REALLY hoping on the LDN working for me. Because like many high functioning autistics I actually hate being high with a passion that had me delete a long string of curses in this post.
"but, Surgery" you say? Well, here's the quickest breakdown that is still relatively complete:
Since that time I have been on opioids. I started with 5mg Oxycodone every 6 hours with 1 extra every few days when flares hit. Later I switched to Butrans (Buprenorphine patch) but I developed a severe reaction to the solvent, which sucked since I responded decently to it. Then over to Levorphanol with Oxycodone for breakthroughs. Then just Levorphanol (well, and the diazepam throughout for myocolonus in my chest ... my right pec was paralyzed for close to a year after the C5-C7 fusion and my rib cage remains tense without some form of benzo). Then buprenorphine when some jackass decided to jack up the cost of Levorphanol and my insurance didn't like it anymore. Along with occasional lidocaine infusions but they never last long enough (a week or so of significant relief tops).
And that leads me to today.
I'm actually amazed that I typed that much without a break, so obviously Day 6 is a turning point. I hope. But I know I've had symptoms flood back without warning so ... we'll see.
PS. All of the above really IS just to explain where I'm at ... sorta needed the venting. I mainly came here to find any stories about LDNaltrexone + ask a question regarding hormone therapy.
So I was going to use the profile to enter background info but ... those fields are tiny and low and behold here I find the intro forum. So I'll use this to link back to. Thanks.
(on the less thankful side of things, for registering, "Random Question: What is the middle name of the most famous Lucasian Professor of Mathematics? (use lower case only)" ... that's pretty seriously debatable. I picked Hawking ... which would have been William ... but did you want Newton? Anyway ... )
I've been an opioid user for awhile now, with many years between and usually only for a couple of years each stretch. Until the most recent one of 3 years where I've been cycling down after bungled surgery.
My current state as of writing this is almost day 6 (in 2 more hours) of nearly cold turkey off of buprenorphine. Yeah, I know. Subutex is child's play for most folks but for me it's been the hardest of all of them to get off of. Today's the first day since going off that I've been able to sit upright at the computer to type. I've only been on 8mg buprenorphine + .5mg clonazepam daily for about a year (along with some things like Alpha Lipoic Acid, Androgel, etc). Prior to that I was on (even less significant) 2mg Levorphanol + Diazepam. Switching from Diazepam to Clonazepam was amazingly helpful for my myoclonus. Switching from Levorphanol to Buprenorphine was ... terrible.
Here's my days so far (by days I'm starting at the beginning of when I would normally have taken a pill, which means around noon, rather than midnight):
- Day 1 ... NEVER a problem. In fact I regularly would forget to take my pill on days where I felt decently pain-wise and hadn't over-exerted.
- Day 2 ... early into the first 24 hours an on-going argument between my spouse and I had me pack a bag and go stay in a motel on the coast to clear my head (actually, didn't make it to the motel, slept in the car on a cliff over the ocean, which didn't suck). During the texting with her while getting my head clear I decided that this was the time to get off of them because otherwise I was never going to be able to deal with the emotional baggage that had built up between us.
- Day 3 ... made it to a motel. Ate enough to not get weak but couldn't each much. Started to finally get tired (bupe lasts sooooooo damned long) and RLS. Spent the night tossing the bed like a tornado. TMI: jerked off 3 times in 3 hours ... which is more than in the 3 months prior even with hormone therapy. Drove back home. Sang my throat out to various artists (another thing I hadn't done in a couple of years, and at one point I was a vocalist) and felt great. Made lots of (realistic) plans. Got home. Crashed.
- Day 4 ... oh man. All of my prior attempts to get off of opioids were ending on day 4. This day 4? Continually getting worse. Did everything I could to feel less like death. Diazepam from my reserve from a year earlier. Compounded ketamine/gabapentin/lidocaine/baclo/cyclo cream right up the bum. Loperamide. Alleve. Zyrtec. SUGAR. Medical marijuana edibles (sadly never help my pain levels but they make me more complacent). Tossed and turned so bad my wife voluntarily got up and went to the couch without a word (and that folks, that just doesn't happen, I'm usually the one heading to the couch to avoid the snoring). EVERY SOUND that wasn't anticipated (ie, TV ok, talking bad) made my body spasm. ALL of my back pain came back.
- Day 5 ... Day 4 but worse. Felt OK for about 45 minutes there then ... all back to Day 4 again. Night comes (which is only 6 hours into my Day 5 due to my starting days at noon). Argument with wife. Horrible. Not the worst ever but bad enough that even feeling like I do I pack bags. Eventually we both talk each other down. Things end peacefully. I slept -most- of the night but woke WAY earlier than usual. Felt good for the first 20 minutes or so, then progressively back downhill.
- Day 6 ... just started it about 3 hours ago. Feeling a bit better ... "withdrawal is like a bad flu" my butt. 1 week after is like a bad flu, yes, but not 1 week. At least for me and bupe.
A clue to my state is ... I'm high functioning autistic. As in what used to be termed Asperger's. Something I've only really been coming to grips with in the last year. And reading up on opioids in Autistic people (including it as a plausible cause in some) is part of what convinced me to get off of things. The other reason (which I'm sure is related) is my relationship with my wife. Which is rocky, and not specifically my fault, but I can't provide the level of emotional support I need to do while on opioids. They shut me down much farther than many, likely due to the Asperger's.
I actually think that the partial agonist/antagonist nature of bupe is what has made this situation much worse. Sadly I didn't go on it with the intent to curb off of pain killers. After my most recent bungled surgery (see below if curious) I had decided I was likely on them for good at this point. I just made a point of doing partial withdrawals multiple times per year (48-36 hours) to keep my tolerances low. That was 3 years ago and the fact that I was able to subsist on 2mg Levorphanol daily for 18 months of the last 2 years showed me it worked well enough that ... maybe ... my liver wouldn't hate me too badly in the end. It was the emotional shutdown (which was worst for me on bupe, and I think related to the Asperger's issue) that has me getting off.
And I -may- not be staying off for good. I have some serious pain conditions. But I'll get off for long enough to find out if some combination of low-dose Naltrexone (LDN) and other things like Alpha Lipoic Acid (which I use in place of Neurontin or Lyrica for neuropathy) allow me to get through things. If not, then I'll see if those combined with an occasional breakthrough med are enough. If not then, once the marital issues resolve (and, regardless of medication, those will resolve one way or the other ... I just want to be able to put the best foot forward with them), I'll end up back on the opioids. But I'm REALLY hoping on the LDN working for me. Because like many high functioning autistics I actually hate being high with a passion that had me delete a long string of curses in this post.
"but, Surgery" you say? Well, here's the quickest breakdown that is still relatively complete:
- 1989 - Herniated L4/L5 at the age of 18 lifting a massive TV (tube-style, kids today just don't know)
- 1991 - found out my back pains from pre-teens on were from spinal stenosis ... the herniation that doctors kept trying to treat was actually healed ... took until age 21 before a doctor thought to look for it. He apologized profusely, I thanked him greatly, I'd seen plenty that did no good at all.
- 2002 - First round of opioids. STARTED on Fentanyl 300mcg. Back in "the day" when treating pain was a bit less ... nuanced ... and ramped up to 1200mcg before ...
- 2003 - Laminectomy L4-S1 as I couldn't bear it any longer, FAILED, scar tissue invasion made things worse than ever before, but I managed to wean myself off of all pre and post-op prescriptions except Neurontin (to hell with Neurontin btw). And honestly, I don't remember -any- withdrawal so I was obviously hurting bad those days
- 2004 - Fusion L4-S1 to stabilize the failed Laminectomy and remove scar tissue that was impinging my right sciatic cluster so badly that my leg never really recovered ... but at least stopped progressing. Went back on opioids for post-op (hmm, think at that time it was Percs but might have been Oxycodone). Weaned myself off of them before the doctor even brought it up during the 3 month post-op period.
- 2005-2012 - Did "ok". Lots of pain (24/7 migraines by the end). No opiods. But ... by the end of 2012 I had severe C4-C7 Kyphosis -and- severe L3/L4 stenosis (stenosis expected as I have system central canal stenosis to begin with, along with the years-earlier fusion putting pressure on L3/L4 ... but ... the Kyphosis was a surprise)
- Jan 2013 - C5-C7 fusion. Did great. Healed the bone so fast that ...
- Mar 2013 - L3/L4 fusion. Did NOT do great. Made the GIGANTIC mistake of asking them to take the muscle-spasm-inducing hardware out from my L4-S1 fusion in 2004. The doctor didn't recognize how compromised my dura was, and that the blood patch he applied didn't work. Right after being discharged I had the worst spinal headache of my life. And stupid me I sucked it out for a week before going to see him and ... next morning I was in for emergency dura repair of a 4cm hole in my lumbar (and about 1.5L of CSF -outside- of the spinal cord). During that repair, while able to see all of the exposed cord, the surgeon noted an internal pseudomeningocele that was larger than anything he'd seen (I have the polaroids to prove it, he was that amazed). The repair was mostly successful at the basic level but left me with 2 things ... a massive communicating external pseudomeningocele (about .25L worth of CSF that is exchanging fluid with the cord and putting pressure on the cord from outside) and a lovely thing known as Adhesive Arachnoiditis from L2 through S1 (basically, the lumbar cord is filled with scar tissue and mashing the nerves up against the wall of the cord).
(and of note ... adhesive arachnoiditis pretty much contra-indicates a spinal cord stimulator ... I'd have done it if I didn't have this ridiculous scarring reflex and didn't end up with the arach).
Since that time I have been on opioids. I started with 5mg Oxycodone every 6 hours with 1 extra every few days when flares hit. Later I switched to Butrans (Buprenorphine patch) but I developed a severe reaction to the solvent, which sucked since I responded decently to it. Then over to Levorphanol with Oxycodone for breakthroughs. Then just Levorphanol (well, and the diazepam throughout for myocolonus in my chest ... my right pec was paralyzed for close to a year after the C5-C7 fusion and my rib cage remains tense without some form of benzo). Then buprenorphine when some jackass decided to jack up the cost of Levorphanol and my insurance didn't like it anymore. Along with occasional lidocaine infusions but they never last long enough (a week or so of significant relief tops).
And that leads me to today.
I'm actually amazed that I typed that much without a break, so obviously Day 6 is a turning point. I hope. But I know I've had symptoms flood back without warning so ... we'll see.
PS. All of the above really IS just to explain where I'm at ... sorta needed the venting. I mainly came here to find any stories about LDNaltrexone + ask a question regarding hormone therapy.
