Tapering My taper journal

[ElleAZ]

Two days ago my pain doctor told me to drop my dosage of Oxy from 30 mg a day to 20. He does not believe w/d will be a problem.

Wrong . I felt panic, heat and cold flashes nonstop for the last two days. I’ve also been very dizzy because the clonidine dropping my blood pressure to 70/50. I dropped the clonidine by 25% and feel so much better.

My meds for this are zofran, clonidine, bentyl for stomach spasms, and I have .5 mg Ativan, 1mg Ativan, and 2mg Valium. I am extremely shaky because I haven’t been able to eat much. I had a banana yesterday for potassium and half of a health shake. My stomach has a knot in it all the time. The .5mg Ativan helped a lot with the panic but did not make me sleepy. It seems that every comfort med has a 50% chance of working.

So day 1 went like this:

10mg Oxy 2 x day
.05 clonidine half pill 3 x day
zofran 3 x day
bentyl 2 x a day
.5 mg Ativan

Day 2: the same but trying to avoid the benzo. I told myself I could use it every other day but only if I needed it.

i was able to sleep about five hours over three naps. The rest of the time I simply walked back-and-forth in the house trying to think of positive things and to tire myself out. I am not having any negative or fearful thoughts . I suspect hunger is my biggest problem right now but the clonidine makes my mouth so dry that I choke on food my mouth . I’m starting the morning with Carnation Instant Breakfast.

Right now at this very moment everything is peaceful. I had burning feet last night. I called my friend who I know went off many medications cold turkey and told her about it she told me to put my feet on ice so I guess we’ll see .

 

[ElleAZ]

In an unusual turn of events, I had no vexing withdrawal symptoms today even though I dropped my dose from 30 to 20 mg. Yesterday was pretty awful but I figured out that it was the clonidine overdose. My pain management doctor had never asked me if I had low blood pressure. I am enjoying every second that is not me walking around the house sitting in a seat and getting up and sitting in another seat then just pacing for an hour then trying to eat then going to the bathroom then pacing some more
.

 

[ElleAZ]

And the shits have arrived. OMG. Thank you Imodium.

My opinion that I was literally being made sick by the meds I was on is justified. As soon as I dropped both meds, the clonidine and Oxy, my health...improved? I had a weird thought. Since the side effects of these meds are similar to w/d (clonidine can cause nervousness, palpations, sore breasts, and insomnia and we know Oxy has awful side effects) perhaps I have been misunderstanding what is happening to me? I guess only time will tell.

My stomach has been churning for 24 hours despite zofran, bentyl, and Imodium. It's so loud. Yesterday was my first day eating more than one meal in a long time and I lost it all upon waking up.

So day 2 of the taper from 30mg to 20mg was relatively positive and Day 3 I wokeup to losing everything I ate hours ago.

One more thing, I took Advil PM last night and for the first time since being on these meds it was truly effective.

 

[ElleAZ]

I should also add that the respiratory depression symptoms are fading. I have impaired respiration on a good day because of my neuromuscular disease so this was very threatening to me. I am just now realizing how endangered I was while the clonidine lowered my blood pressure to 70/50 and the oxy making breathing harder. Clarity is coming slowly. This was a fucked up situation from the beginning when my doctors gave me meds without taking my actual HEALTH into consideration. I am so weak and tired ALL THE TIME. It was the meds.

 

[ElleAZ]

When I think about how much reading other peoples stories helped me, it inspires me to be as honest as I can. Last week my doctor and my husband ganged up on me and they both believe that my symptoms are a result of a panic disorder and have nothing to do with the chemicals in the medication that I’m taking. Even with my blood pressure at 70/50, it’s in my head. I felt humiliated . I know that dwelling on this too much at this point will not be good because I probably am too emotional, but even on a good day that would be pretty fucked up . I have a long good marriage that has suffered a lot of challenges recently. My husband has seen everything that I’ve been through and this just feels like the dirtiest betrayal . This time last year he was hospitalized for kidney stones had six operations over the course of two months and I had his back every step of the way . Maybe it’s fatigue, maybe he’s just tired of life being shitty but I find no comfort in his presence now . Yesterday he told me that I’m the only one who cares about Christmas as though I placed a burden on people for decorating . I had only the greatest thoughts about my marriage before this event and now I’m just disgusted . So for anyone reading if you aren’t yet hooked on an addictive substance, please, care about yourself, and put it down. Everything about this is ugly and you have no more control over it then I did .

 

[Jabberwocky]

It sounds like you're really struggling with finding your own support in this Elle. Do you have a therapist or peer support folks who can help support you, at least emotionally? Often addiction related stuff is just too much for our partners or family members to accept or understand. It isn't necessarily right or fair, but it is often the way it is. But you need support with this stuff now, whether it's recovery specific or not.

Anyone in recovery needs people to talk to, to listen, see and hear you, folks you feel safe with, with whom you are able to be transparent and vulnerable, just like you are here, but IRL so you can co-regulate your mood with them. Co-regulating with (more or less) healthy people would be a useful priority for you to find for now I think, as would learning more ways you can regulate your own mood without just having to use drugs (although in the mean time learning how to self regulate in less harmful ways with drug use is a fine starting point).

 

[ElleAZ]

Yes. I thought my husband would understand because I saw him through his drug addiction, but I think that life has just been too relentless, and he has nothing left for me. Yes, I will start looking for support tomorrow. Thank you .

 

[ElleAZ]

The postsurgical pain is now coming back. My hip is stiff and it’s difficult to articulate. I took some ibuprofen and I’ll be applying heat . I think this is kind of exciting because it means that the Oxy is definitely leaving my system. So far my biggest complaint for this last taper has been upset stomach, diarrhea, restlessness on the first night, and the expected return of the pain that it had been handling for me. My next taper is this Friday when I will go from 20 to 10 mg and then off completely a week later, depending on my response. I have a wedding and my son’s college graduation in two weeks and I have to control the situation around those very big events . I might just jump after he graduates so that I am not too sick to attend.

 

[jalara]

Ella how long were you on 30mg Oxy before your taper and how are you doing now?

 

[ElleAZ]

This has been a pretty cool day. I have minor issues but otherwise getting off that clonidine has improved my life significantly. Now that I am getting my mind back, my balls are returning too. I have a situation where a doctor gave me meds incompatible with my health, endangered my life, and then declared that I was mentally ill. The difference between me then and now is staggering. I have no idea what I will do to him, but for now I am transferring my care to my family doc and speeding up the taper. That pill was messing me up, not the oxy. All of my oxy drops have been tolerable. My heart wasn't getting blood to my brain. What a fucking twist.

 

[Jabberwocky]

I caution you not to move too quickly with your taper. Taper's aren't like sprints, but marathons. The more time you can put into doing it to the best of your ability now, the easier it will be when you finally come off. Tapers are a great time to really slow down and build the kind of support networks that are so useful in recovery.

Sorry to hear about your partner OP, that sounds really uncomfortable. Hopefully you can get yourself setup with your own therapist (someone you work well with; I think I needed to see like nine therapists before I found one that worked well for me, so it can take a lot of effort to get someone better than just the bare minimum), some kind of wellness/recovery peer support, and integrate healthier habits into your routine (sleep hygiene, nutrition, exercise, stretching, self care, meditation, etc).

 

[ElleAZ]

Helloooo Bone Pain! Everybody put your hands together for Bone Pain who decided to have some fuckery at Elle's expense! So far 800mb ibuprofen has reined it in. I am expecting a visit from the PT today. My bitching resulted in private, at home PT. Squeaky wheel gets the grease. If everything else is on schedule, tomorrow should be emotional, then I have a day or two before doing it again.

Had it out with my guy. I informed him that I felt ganged up on. I noticed that as soon as the doc mentioned anxiety, he related to it. He had confirmation of what he had been thinking, and telling the kids, "She's reading horror stories all night and working herself up!" I informed him that not a single person associated with this surgery discussed medication management with me. It was never a conversation. I reminded him that the night I went into benzo w/d and locked up and he took me to the ER, even though they had a list of my meds and they knew that I was five weeks post op and taking Valium, the dx was anxiety. ANXIETY. Not "reaction to medication" or "withdrawal", but a fucking failure of ability to cope. ER never discussed the Valium with me. I went home as ignorant as when I arrived. And two days after that, I was given blood pressure medication that made my heart work harder to get blood to my brain. The dizziness, lightheaded-ness, pounding chest, and flushed skin followed, all while I was coming off the Valium. And then, when I tell the doctor that I am afraid of the withdrawals from Oxy based upon how it felt when I was supposedly correctly dosed, he declared me emotionally unstable. My blood pressure at that moment was 71/50 and he didn't even read my chart. I had to inform him, and his response was "that's not good". I called him the next day to ask if the Clonidine could be the cause of my anxiety and he never returned my call.

My guy said that he expected that this is how it would be and that I was acting irrational but he was wasn't going anywhere. He said he knew he would be the focus of my anger. I had no idea how to respond to this. I'm mad at the doctors for fucking up and at him for not believing me. That's pretty rational. I told him that I had every right to research Oxy addiction and recovery because I was the ONLY ONE in my corner. I am the one who has had to fill in the gaps about what I was going through because the multiple medical personnel I had entrusted with my health failed me. THERE IS NO CONVERSATION OUT THERE REGARDING THESE DRUGS for people in my situation.

I showed him how the supplements that I bought were intended to address the depression that follows w/d. I came off of Lyrica CT and I wanted to die. I knew what was coming and was educating myself and being proactive. I wasn't dwelling on horror stories and ramping myself up. I solved the mystery of the benzo w/d. I determined that the clonidine was at fault for these panic-like experiences. I am a fucking superhero. I figured this shit out WHILE I WAS ON THE SHIT. So no, I accept no shame and reject the accusation that I was behaving in a self-indulgent manner. I also got pretty good at Rummy 500 and Yahtzee because that's what I mostly did at night.

His interpretation of my behavior and motives was inaccurate. He shuts down in confrontation and didn't communicate with me about his feelings. Once that was accepted, we apologized. It was then that he acknowledged how horrific this has been for me from the unexpected brutality of the surgery; to the failure of the surgeon to provide any follow up care including medication counseling, PT, and even just inquiring about my recovery; to the decision of the pain management doctor to give me poison and call me hysterical. We also had a family breakdown at this time because my kids acted like I wasn't home when he went to work and didn't check on me at all. My kids didn't cook, clean, care for the pets, or show an interest in me because they are on video games constantly. They are 16, 18, 20, 21, and 24. I heartily admit that they have been coddled by me for most of their lives and it resulted in an emotional laziness. They figured I was fine because I'm always fine. I could have fallen and they couldn't hear me. So this entire experience was heartbreaking and awful.

He tried to rub my legs but the bone pain responded. He rubbed my head. At this time, the fever came over me and I feel very hot. Not sweaty (clonidine) but HOT. He told me we were right on time for that. Then he left for work.

In the aftermath, I had a stunning revelation. The response of the ER and the Pain doc to my medication induced side effects was ANXIETY. Neither party called it for what it was. There was one interpretation and apparently we are in the middle ages and my uterus is traveling throughout my body (hysteria). Is it because I am a female? I don't dwell on feminism. I'm a fighter and I don't feel limited, denied, or whathaveyou very often. But this is very interesting. I am sure these diagnoses get collected in a great big database somewhere and NO ONE is calling out the medication. I must have some inadequacy for what I am going through. I am still deciding how to respond to this. I think the hysteria hook is pretty solidly established and I may go forward with exposing misogyny in medicine. Or maybe it isn't my plumbing but that they are protecting Big Pharma. But there's something going on that had silenced the reality of what I am going through.

 

[ElleAZ]

I caution you to move to quickly with your taper. Taper's aren't like sprints, but marathons. The more time you can put into doing it to the best of your ability now, the easier it will be when you finally come off. Tapers are a great time to really slow down and build the kind of support networks that are so useful in recovery.

Sorry to hear about your partner OP, that sounds really uncomfortable. Hopefully you can get yourself setup with your own therapist (someone you work well with; I think I needed to see like nine therapists before I found one that worked well for me, so it can take a lot of effort to get someone better than just the bare minimum), some kind of wellness/recovery peer support, and integrate healthier habits into your routine (sleep hygiene, nutrition, exercise, stretching, self care, meditation, etc).

Thank you. I do believe that I will find some type of counseling because these have been some wicked years. I still am not sure about the taper because this bone pain, if it were doubled, I would have nothing to treat it with. So I am truly taking it day by day. I haven't slept in 30 hours and I know that is worsening it. But I won't take the benzos again unless it is a panic attack. So, I sleep every other day with Advil PM. Tonight will be sweet. I have been listening to binaural beats as I think someone here shared. It's odd but relaxing. My husband put in a jetted walk in tub before the surgery so I have been getting hydrotherapy daily. I was avoiding the tub because I panicked in it and it doesn't drain like normal tubs. If you open the door, the room floods. But when I realized that I am not panicking randomly, I wasn't afraid anymore.

 

[simco]

As you mentioned in your last post, taking it day-by-day is one of the best favors you can do for yourself right now. One of the worst things about acute WD and recovery in general is that our own headspaces can get really dark. Often this involves various forms of fear, regret, anger, etc... in general it's good to explore these kinds of feelings. But when we're at our most vulnerable (e.g. During WD), I find it's best to focus on the here-and-now. To the extent that you're able to (it's fucking hard to do), I encourage you to tend to what you're feeling today, at least for a while.

As mixed as my feelings are about 12-step recovery programs, their old saying 'one day at a time' is spot on.

 

[Jabberwocky]

^meh, I have no doubt they co-opted that from somewhere else too

It is a damn fine saying regardless though.

 

[ElleAZ]

I had my first physical therapy appointment today. The assessment revealed that I have developed a great deal of adhesions and scar tissue in my surgery site because I was on bedrest for six weeks and did not receive physical therapy until nine weeks. She was appalled at the neglect of my doctors.

The heat left and now I am freezing . This is actually taking on a comic tone .

Tonight while I was doing my PT exercises my 16-year-old son turned to face me and held out his hands and I placed my hands on top of his and was able to squat deeper and more effectively. I started to cry because I was so happy. So I guess emotional instability has just gotten in line. Bring on day five.

 

[Jabberwocky]

Being able to feel your feelings is not a bad thing though. Sure it can be overwhelming sometimes, but it also allows for so, so much growth. Sounds like all things considered you're doing quite well. Keep your head up please

 

[ElleAZ]

Being able to feel your feelings is not a bad thing though. Sure it can be overwhelming sometimes, but it also allows for so, so much growth. Sounds like all things considered you're doing quite well. Keep your head up please

Thank you it was such a beautiful moment to have that connection after all that we’ve been through. I was crying for joy and I swear those tears are the rarest things on earth. My husband told me that he informed the kids that this is unlike the other situations where I could just walk away. The PT is making me hurt so bad as the Oxy leaves my system that I am now back in bed. It looks like we’re going backwards, but this is actually the most progress I’ve had.

 

[ElleAZ]

Last night was hard. The pain is increasing and new therapy is adding more stress. I struggled to sleep even though I was at the 48 hour mark. It finally arrived in hour increments.

My physical therapist said that the pain management doctor is behind the physical therapy. This was news to me. He approved her for two weeks of three times a week and then two weeks of two times a week and then I should be driving to outpatient. So I won’t be making any sweeping gestures of discontentment about the Clonidine before my physical therapy is over .

 

[Jabberwocky]

If your PT doesn't improve, would you look into finding a different provider? I've heard people have radically different results from PT depending on the quality/skill of their therapist.