I really don't want to take morphine - please help weigh pros/cons

[[Re...]]

As many of you know, I am in a bad situation trying to taper the 28mg of Seroquel I was given for sleep during benzo withdrawal. I started on 75 mg last Oct and got down to 28 about 5-6 weeks ago. I have been in agonizing pain for months with more severe symptoms than benzo withdrawal. I try to hold the taper on this dirty drug because I get worse and not better as time passes. I am in a terrible Catch-22, and it sucks, and I am mourning the loss of my once colorful, wonderful life.

 

I am homebound with continuous symptoms 24/7 without relief: Akathisia, screeching bilateral tinnitus, hyperacusis, internal tremors, entire body electrical skin sensations, paresthesia, muscle pain, numbness, rigidity and stiffness, muscle twitches including in my face, and a constant metallic taste in my mouth.

 

Eating makes symptoms worse. I have tried different diets, and nothing seems to help, including Keto. I have tried 24 allopathic and naturopathic treatments nothing seems to help. (Avoiding medications but have taken some supplements like B6, which is supposed to help Aka.)

 

I cannot (and would not) CT it. At the rate I am tapering, it could take me 4.5 years to get off of this crap. I have tried Propranolol and tried a few doses of Mirtazapine, which made things worse.

 

Some of you may have seen my posts about trying morphine. I really want to be off of all drugs at this point. But my medical team wants me to try the morphine and see if it lets me taper the Seroquel.

 

This is all ridiculous and a comedy of errors, except IT IS MY LIFE, AND I HAVE LOST IT. And I do not see the path back.

 

I am reaching out for support.

 

I am lining up a strategy for compassionate care should things go South because this dirty drug is unpredictable, and the symptoms have been so severe. I am sure I am not the first person on this site to say this. My family, friends, and doctors all support me and get that I do not want to live in hell like this for years. It is an emergency plan -- getting affairs in order for a "what if" scenario. I keep asking my doctors if the morphine makes things worse, then what? And nobody has an answer, so...I need to protect myself with an emergency plan.

 

I really do not want to be stuck on an opioid for longer term and I also keep saying that. I know it worked for Jordan Peterson, but how does that give this total credibility? (https://liondiet.com/how-we-cured-treated-suicidal-akathisia/)

 

Also, did his Akathisia go away???

 

Also, I have already dealt with the stigma of Seroquel. Now I have to deal with the stigma of morphine. Etc.

 

This situation is lose/lose all around.

 

 

[[...]]

Hello Rebecca,

 

I understand your pain and what you are going through. I know it's hell and these are very personal decisions. That just getting through the next hour is already a challenge.

 

I just want you to know that I understand you. I can't give you advice but my support.

 

Sometimes when we are so desperate it is not good to make decisions. I was wrong many times.

 

Wishing you find a way and that you feel better soon.

 

If I find out anything that might help, I'll let you know.

[[Re...]]

Hello Rebecca,

 

I understand your pain and what you are going through. I know it's hell and these are very personal decisions. That just getting through the next hour is already a challenge.

 

I just want you to know that I understand you. I can't give you advice but my support.

 

Sometimes when we are so desperate it is not good to make decisions. I was wrong many times.

 

Wishing you find a way and that you feel better soon.

 

If I find out anything that might help, I'll let you know.

 

Thank you. I have been sitting on this decision and discussing it for many weeks now. I even tried a morphine dose and didn't like it. Yes, to what you say about getting through the next hour. This is no way to live. I spend my life trying to get through the next minute and, the next hour, then the next day because the physical pain is so extreme.

[[Co...]]

I don't have personal experience with them but I have heard good things about gut healing from Goulds in Australia about diets. I don't know if that works but that Estonian lady on Seroquel in these fb groups recommended it to heal the gut.

[Guest [...]]

If you tried the morphine and didn’t like it, then that’s your answer I would think.

 

I know of someone that tried what you are talking about with respect to Jordan Peterson’s protocol and it didn’t work out so well for them.

 

They were on the Akathisia Facebook group - his mom was the writer of a a TV series.

 

Can’t recall his name or anything.

 

Point is no one can tell you what will work. No one knows?

 

Have you reached out to Chris Paige at all?

 

He does coaching and had bad Akathisia for Years and Years.

 

Good luck

Winnie

[[Re...]]

If you tried the morphine and didn’t like it, then that’s your answer I would think.

 

I know of someone that tried what you are talking about with respect to Jordan Peterson’s protocol and it didn’t work out so well for them.

 

They were on the Akathisia Facebook group - his mom was the writer of a a TV series.

 

Can’t recall his name or anything.

 

Point is no one can tell you what will work. No one knows?

 

Have you reached out to Chris Paige at all?

 

He does coaching and had bad Akathisia for Years and Years.

 

Good luck

Winnie

 

Hi Winne. Thanks for the reply. His name is Marcello. His mom is Lisa Loomer the screenwriter. I know the story.

Not a fan of Chris Paige. No offense to him or anyone else but I do not resonate with him. And he is still on meds ten years later. That is just not a quality of life I want to sign up for. You know what I mean?

[Guest [...]]

Yes, that’s him name, forgot it.

 

No offence taken, I don’t know Chris Paige at all.

 

Good luck.

 

If you do the Lion diet, make sure you research very carefully etc.

 

Winnie

 

[[Re...]]

Yes, that’s him name, forgot it.

 

No offence taken, I don’t know Chris Paige at all.

 

Good luck.

 

If you do the Lion diet, make sure you research very carefully etc.

 

Winnie

 

I tried it and it made me worse :/

[[Le...]]

I can see that you are in hell Rebecca. But if seroquel is the offending drug, i see no other way around it than tapering off. We talked before, but as you said you have tried multiple things/drugs to ease some of your symptoms and nothing is workning. Hope you find a soloution to your problem at some point. All the best.

[[Be...]]

Was their anything you liked about the morphine? Didn't it give you some hours of relief? Other than the groggy feeling (which goes away as your body adapts), what didn't you like. You literally need to write morphine at the top of a sheet of paper, then make two columns and label them pros and cons. If the cons are outweighing the pros for you, then it may not be an option. Only you can decide.

 

I did read the link. It's unclear to me exactly what Peterson is doing at times, and whether anything has worked enough for him to not need any opioid. It is correct that morphine and hydromorphone (Dilaudid) are easier to get off of. And it is correct that longer-acting opiates are harder to get off of. More convenient because you get a steady supply of medicine, but more is involved in getting off. I was on fentanyl patches at my peak, I stepped down to time-release morphine sulfate, then finally hydromorphone, which I tapered off of. I had no w/d symptoms stepping down. I had none until I stepped off. Mostly random panic attacks (mild that occurred maybe once a week), and restless legs that would wake me up at night. Until I found an opiate detox blog online, and an OTC med, loperamide, that stopped it. I slept, but had constipation and needed MiraLAX. It all ended after a year. Panic attacks lessened by 6 months, went away at about 8 months. Only the restless legs hung around until a year had passed, and I no longer needed loperamide. I also took a low dose of clonidine during that time, which I weaned off of quickly after a year. My doctor put me back on my regular blood pressure med gradually, while reducing the clonidine. So, these things would go on your cons list. You may not want to have to wean off any more drugs. I don't think you'd need clonidine, I did because I was on narcotics for decades, and pretty high doses at one point. It took a year for my body to finally make enough of it's own opiates. I'd be surprised if you had much of anything getting off morphine. You're not going to be using it for years, let alone decades. Just long enough to get off the Seroquel and until the akathisia goes away.

 

You are considering Compassionate Care, you could test out the morphine again. If it seems to be helping, then consider it. Worry about getting off when that time comes. If I was thinking about an exit strategy, I would try every last thing first. It's how I ended up on fentanyl. And it was a neurosurgeon consultation that led to me getting off. He gave me the best advice on dealing with the pain. All followed a car accident with a drunk driver. Never thought I'd be such a mess from that. Then I got the great Physiatrist that treated my pain, and said his goal was to make it so I didn't need opiates. Opiate w/d, is nowhere as bad as benzos. It definitely wasn't for me.

 

Ultimately, only you can weigh the pros and cons and decide what is best for you. Unfortunately, none of us can answer the questions of whether you should do anything. If you don't want to take morphine, don't take it. Then you're left with tapering the Seroquel. You tried diet, that didn't help. Mirtazapine as a no-go. The only thing you haven't tried in more than the test dose of morphine. The only feedback I have gotten from Twitter is to hold the Seroquel until you recover from benzo injury, which some her also suggested. Or links to Chris Paige, who I know you already checked out.

[[Nu...]]

Was their anything you liked about the morphine? Didn't it give you some hours of relief? Other than the groggy feeling (which goes away as your body adapts), what didn't you like. You literally need to write morphine at the top of a sheet of paper, then make two columns and label them pros and cons. If the cons are outweighing the pros for you, then it may not be an option. Only you can decide.

 

I did read the link. It's unclear to me exactly what Peterson is doing at times, and whether anything has worked enough for him to not need any opioid. It is correct that morphine and hydromorphone (Dilaudid) are easier to get off of. And it is correct that longer-acting opiates are harder to get off of. More convenient because you get a steady supply of medicine, but more is involved in getting off. I was on fentanyl patches at my peak, I stepped down to time-release morphine sulfate, then finally hydromorphone, which I tapered off of. I had no w/d symptoms stepping down. I had none until I stepped off. Mostly random panic attacks (mild that occurred maybe once a week), and restless legs that would wake me up at night. Until I found an opiate detox blog online, and an OTC med, loperamide, that stopped it. I slept, but had constipation and needed MiraLAX. It all ended after a year. Panic attacks lessened by 6 months, went away at about 8 months. Only the restless legs hung around until a year had passed, and I no longer needed loperamide. I also took a low dose of clonidine during that time, which I weaned off of quickly after a year. My doctor put me back on my regular blood pressure med gradually, while reducing the clonidine. So, these things would go on your cons list. You may not want to have to wean off any more drugs. I don't think you'd need clonidine, I did because I was on narcotics for decades, and pretty high doses at one point. It took a year for my body to finally make enough of it's own opiates. I'd be surprised if you had much of anything getting off morphine. You're not going to be using it for years, let alone decades. Just long enough to get off the Seroquel and until the akathisia goes away.

 

You are considering Compassionate Care, you could test out the morphine again. If it seems to be helping, then consider it. Worry about getting off when that time comes. If I was thinking about an exit strategy, I would try every last thing first. It's how I ended up on fentanyl. And it was a neurosurgeon consultation that led to me getting off. He gave me the best advice on dealing with the pain. All followed a car accident with a drunk driver. Never thought I'd be such a mess from that. Then I got the great Physiatrist that treated my pain, and said his goal was to make it so I didn't need opiates. Opiate w/d, is nowhere as bad as benzos. It definitely wasn't for me.

 

Ultimately, only you can weigh the pros and cons and decide what is best for you. Unfortunately, none of us can answer the questions of whether you should do anything. If you don't want to take morphine, don't take it. Then you're left with tapering the Seroquel. You tried diet, that didn't help. Mirtazapine as a no-go. The only thing you haven't tried in more than the test dose of morphine. The only feedback I have gotten from Twitter is to hold the Seroquel until you recover from benzo injury, which some her also suggested. Or links to Chris Paige, who I know you already checked out.

 

This is an excellent post. Well organized with a lot of good information and thoughts. Great support here -- thank you, Lottie.

[[Re...]]

Was their anything you liked about the morphine? Didn't it give you some hours of relief? Other than the groggy feeling (which goes away as your body adapts), what didn't you like. You literally need to write morphine at the top of a sheet of paper, then make two columns and label them pros and cons. If the cons are outweighing the pros for you, then it may not be an option. Only you can decide.

 

I did read the link. It's unclear to me exactly what Peterson is doing at times, and whether anything has worked enough for him to not need any opioid. It is correct that morphine and hydromorphone (Dilaudid) are easier to get off of. And it is correct that longer-acting opiates are harder to get off of. More convenient because you get a steady supply of medicine, but more is involved in getting off. I was on fentanyl patches at my peak, I stepped down to time-release morphine sulfate, then finally hydromorphone, which I tapered off of. I had no w/d symptoms stepping down. I had none until I stepped off. Mostly random panic attacks (mild that occurred maybe once a week), and restless legs that would wake me up at night. Until I found an opiate detox blog online, and an OTC med, loperamide, that stopped it. I slept, but had constipation and needed MiraLAX. It all ended after a year. Panic attacks lessened by 6 months, went away at about 8 months. Only the restless legs hung around until a year had passed, and I no longer needed loperamide. I also took a low dose of clonidine during that time, which I weaned off of quickly after a year. My doctor put me back on my regular blood pressure med gradually, while reducing the clonidine. So, these things would go on your cons list. You may not want to have to wean off any more drugs. I don't think you'd need clonidine, I did because I was on narcotics for decades, and pretty high doses at one point. It took a year for my body to finally make enough of it's own opiates. I'd be surprised if you had much of anything getting off morphine. You're not going to be using it for years, let alone decades. Just long enough to get off the Seroquel and until the akathisia goes away.

 

You are considering Compassionate Care, you could test out the morphine again. If it seems to be helping, then consider it. Worry about getting off when that time comes. If I was thinking about an exit strategy, I would try every last thing first. It's how I ended up on fentanyl. And it was a neurosurgeon consultation that led to me getting off. He gave me the best advice on dealing with the pain. All followed a car accident with a drunk driver. Never thought I'd be such a mess from that. Then I got the great Physiatrist that treated my pain, and said his goal was to make it so I didn't need opiates. Opiate w/d, is nowhere as bad as benzos. It definitely wasn't for me.

 

Ultimately, only you can weigh the pros and cons and decide what is best for you. Unfortunately, none of us can answer the questions of whether you should do anything. If you don't want to take morphine, don't take it. Then you're left with tapering the Seroquel. You tried diet, that didn't help. Mirtazapine as a no-go. The only thing you haven't tried in more than the test dose of morphine. The only feedback I have gotten from Twitter is to hold the Seroquel until you recover from benzo injury, which some her also suggested. Or links to Chris Paige, who I know you already checked out.

 

Thank you, Lottie. I appreciate how much you care and how thoughtful you are. Yes, I have heard of holding the Seroquel from people in the community. I just don't see IF it is contributing to the akathisia how I would do that. How that makes any rational sense medically you know what I mean?

 

Everyone is different. So maybe one person can do this for three years but another cannot -- or doesn't want to. I get frustrated because I want autonomy over my body and my life and I feel up against that. I might have akathisia but as you can see, I am able to think and communicate. I am rational, with a sound mind and mental capacity. I believe that even in my pain that comes across.

 

Sometimes I feel like people are saying, "She has akathisia, that's the akathisia talking." But it is not. It is me and my intuition and I get SO FRUSTRATED that I am not completely understood because iatrogenic injury/illness is not a shared experience. So doctors really don't know HOW YOU FEEL and how much pain you are in. If it was flu or a migraine they would. And the providers in the community I think get desensitized to hearing the horror stories. So you become part of a collection and then compared to those clients. And then expected to do what those clients do when everyone is different.

 

I would like to never have to taper anything ever again. I wanted to be done with the benzo. This was a HORRIBLE mistake. Just HORRIBLE that gave me many more problems.

 

I am a kind, caring person. I would never want to hurt the ones I love and I have always had a good relationship with myself. So for me to even be thinking compassionate care should be an indicator of how bad things are.

 

Another issue -- the tinnitus. Over 200 meds can cause or exacerbate akathisia and the same goes for tinnitus. I feel damned if  I do and damned if I don't. I do not want louder tinnitus to be able to treat akathisia. THAT pisses me off. I found a pitch of what I hear on a daily basis today to play for my loved ones to understand what I am experiencing. Because, again, not necessarily a shared experience. They are all horrified and feel bad for me.

 

I have become that person -- the person suffering so many people feel bad for her. I used to be someone people looked up to and respected, I got awards for fashion and speaking languages.

 

Now I win the suffering Olympics in most circles that I run in. Even my friends with cancer are doing better than I have been. I am not kidding I have three friends with cancer who have recovered faster than I have. One is dying right now and she has less pain. It is crazy. Another had two surgeries in the last eight months and was back at work full-time months ago.

 

And the toxic positivity...I can't take it anymore. "You got this girl! Keep on the healing!" Seriously, here is my middle finger. I have tried writing "I am healthy" 100 times every night and everything else you can imagine being positive. And I am still here.

[[Be...]]

 

Thank you, Lottie. I appreciate how much you care and how thoughtful you are. Yes, I have heard of holding the Seroquel from people in the community. I just don't see IF it is contributing to the akathisia how I would do that. How that makes any rational sense medically you know what I mean?

 

The hardest thing, is figuring out what led to the aka. Your benzo detox most definitely did. The Seroquel is likely contributing. Personally, I'd want off the AP.

 

Everyone is different. So maybe one person can do this for three years but another cannot -- or doesn't want to. I get frustrated because I want autonomy over my body and my life and I feel up against that. I might have akathisia but as you can see, I am able to think and communicate. I am rational, with a sound mind and mental capacity. I believe that even in my pain that comes across.

 

Precisely. I admire those who micro-tapered their way off benzos, some went down to zero, others to the equivalent of .25 mg diazepam. I. Couldn't. Do. It.  Like you, I am rational. I had little cognitive issues during taper and w/d. My mind and mental state held up. I see so many have horrible mental and cognitive symptoms, I had mostly physical. I wanted to be in control of my destiny: not doctors, meds, years tapering and going through acute, post-acute. NAD+ is like training wheels on a bicycle. It gives me some control, but supports me as well. Morphine might be your training wheels. But only you know. I get you don't want to spend years tapering Seroquel and living with akathisia. I didn't want to spend anymore years tapering and waiting out post-acute. If NAD+ could shorten everything to 4 to 6 months, I was in. I'm glad I did it, I made it to post-acute, and I'm very rapidly improving now. I wish it would be even faster, but I see how much progress I've made, so I know I'm on target. So, on your list of pros and cons. Pro: I can taper faster off the AP. and once I'm off, the aka will gradually subside. Con: If I do nothing, and continue slow-tapering the AP, it could take me 4+ years. I don't think I can handle this for that long. I was doing a lot of weighing pros and cons before deciding on NAD+. The pros outnumbered the cons, though the cons were scary. A lot of 'what ifs.' Here's more. Con: I'll have to taper off morphine, which has it's own set of w/d symptoms. I don't know if morphine will work. I worry it might make things worse. The infamous 'two weeks of hell' that follows opiate cessation. Pro: It is easier to taper off morphine that benzos or AP's. I could do NAD+ to get off the morphine. The infamous 'two weeks of hell' that follows opiate cessation. It's only two weeks, I can handle two weeks of some sweating, nausea, maybe vomiting ( I actually vomited only twice during that period), diarrhea. I've dealt with worse on Seroquel.

 

Sometimes I feel like people are saying, "She has akathisia, that's the akathisia talking." But it is not. It is me and my intuition and I get SO FRUSTRATED that I am not completely understood because iatrogenic injury/illness is not a shared experience. So doctors really don't know HOW YOU FEEL and how much pain you are in. If it was flu or a migraine they would. And the providers in the community I think get desensitized to hearing the horror stories. So you become part of a collection and then compared to those clients. And then expected to do what those clients do when everyone is different.

 

I see this sentiment a lot on Twitter from #prescribedharm. The doctors don't know how to handle individual cases. They often deny us and our experiences, because it doesn't fit what they were taught in medical school. It doesn't fit what they know about a drug. It doesn't fit how other patients respond. Worse, they diagnose iatrogenic harm as another illness, that you need medication for. SSRI goes awry, patient has anxiety they didn't have prior. We'll give them a benzo! Patient develops more issue from the benzo on top of the SSRI. We'll give them an AP! Unfortunately, they don't know how to think outside the box. They only know what they have been told. They medicate symptoms, not treat the underlying cause. I've learned to fire them until I find an unconventional one. The unconventional GI doc listened to me, and helped me get the Orphan Drug that would help with my suspected cause of hypomagnesemia. He and my long-term Endo agreed that I likely figured out the cause. I turned out to be right. The drug worked. After being denied and gaslit by so many other providers, that I happily fired. 1) The GI doc said he would never forget me as a patient. 2) He would look into getting this drug for some of his other patients, even enroll some in upcoming clinical trials. He consulted with my Endo, she was impressed with him. Most doctors wouldn't listen to me. He and my Endo did. It's hard to get doctors to stop relying solely on education and experience, 

 

I would like to never have to taper anything ever again. I wanted to be done with the benzo. This was a HORRIBLE mistake. Just HORRIBLE that gave me many more problems.

 

And that should be on your con list. 

 

I am a kind, caring person. I would never want to hurt the ones I love and I have always had a good relationship with myself. So for me to even be thinking compassionate care should be an indicator of how bad things are.

 

I don't think anybody ever imagines themselves in a situation where they are putting in place an exit plan. It's the furthest thing from anybody's mind. What we really want is to be restored to some level of normal living. Nobody signs up for iatrogenic harm. 

 

Another issue -- the tinnitus. Over 200 meds can cause or exacerbate akathisia and the same goes for tinnitus. I feel damned if  I do and damned if I don't. I do not want louder tinnitus to be able to treat akathisia. THAT pisses me off. I found a pitch of what I hear on a daily basis today to play for my loved ones to understand what I am experiencing. Because, again, not necessarily a shared experience. They are all horrified and feel bad for me.

 

Well, you know the AP is likely making the aka from a benzo medical detox worse. The benzo induced aka would have eased up over time, but for the AP aggravating and prolonging it.  Restless legs drove me nuts, Akathisia I fortunately never had. I have had some restlessness during acute benzo w/d, along with some inner vibrations. Tinnitus rarely showed up during tapering, it has been constant since I jumped with NAD+. It stayed through acute, and I still have it post-acute. It has lessened considerably, it wasn't extreme at all. I can now listen to, and enjoy, music. I only notice it when it's really quiet. I was worried about it at first, as I almost never had it before, and now it was constant. And, yes, a lot of meds can cause it. I was on NSAIDS for years, they can cause tinnitus. I did have random bouts of it then. Opiates never caused that for me. I honestly don't know if they can cause it or not. 

 

I have become that person -- the person suffering so many people feel bad for her. I used to be someone people looked up to and respected, I got awards for fashion and speaking languages.

 

Now I win the suffering Olympics in most circles that I run in. Even my friends with cancer are doing better than I have been. I am not kidding I have three friends with cancer who have recovered faster than I have. One is dying right now and she has less pain. It is crazy. Another had two surgeries in the last eight months and was back at work full-time months ago.

 

Yeah, I feel that way with tapering 2.5 years. Life was just passing me buy. Others get sick, recover, here I am still suffering.

 

And the toxic positivity...I can't take it anymore. "You got this girl! Keep on the healing!" Seriously, here is my middle finger. I have tried writing "I am healthy" 100 times every night and everything else you can imagine being positive. And I am still here.

 

That's why I have mostly avoided the benzo coaches. My telehealth Peer was free for me, and she didn't do that with me. Maybe they help some, but I just never bothered. My Peer delved in reality, and encouraged without being patronizing. She got her Masters and left the Peer program. I know she will be great wherever she is working now. I didn't feel hopeful and positive until doing NAD+. 

[[Ho...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

[[Re...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

 

Thank you. So you are tapering while on the opioid? Does it help the taper at all?

[[Be...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

 

The link Rebecca posted about Jordan Peterson mentions testing out with Tylenol #3. Also mentions avoiding sodium metabisulfite, which is present in many narcotics. I get the impression, that  the additive is the culprit for only selective opiates working. Tylenol #3 does not contain sodium metabisulfite, neither does morphine, or hydromorphone in Canada at least. It may be possible to find hydromorphone in the US without sodium metabisulfite. The downside of using Tylenol #3 is using it consistently isn't good, because of the Tylenol. Tylenol #3 is OTC in Canada, as it's fairly weak in codeine, so it has a very low potential for abuse. Tylenol overdose would be far bigger that any codeine. I wonder how you'd do with straight codeine? I guess Peterson and his daughter narrowed down the choice of opiates through trial and error.

[[Re...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

 

The link Rebecca posted about Jordan Peterson mentions testing out with Tylenol #3. Also mentions avoiding sodium metabisulfite, which is present in many narcotics. I get the impression, that  the additive is the culprit for only selective opiates working. Tylenol #3 does not contain sodium metabisulfite, neither does morphine, or hydromorphone in Canada at least. It may be possible to find hydromorphone in the US without sodium metabisulfite. The downside of using Tylenol #3 is using it consistently isn't good, because of the Tylenol. Tylenol #3 is OTC in Canada, as it's fairly weak in codeine, so it has a very low potential for abuse. Tylenol overdose would be far bigger that any codeine. I wonder how you'd do with straight codeine? I guess Peterson and his daughter narrowed down the choice of opiates through trial and error.

 

Pharmacists here don't know about sodium metabisulfite. I called 12 (I am not kidding) 12 pharmacies to find morphine in the first place. And I am in a metropolitan city. I asked so many pharmacists about sodium metabisulfite and they had never heard of it. I found a pharmacist who knows about additive-free morphine FINALLY and she has been great. She ordered me shots which pose problems because I cannot inject on my own.

 

I am also dealing with tinnitus which makes things much much worse in terms of taking anything. FML, really guys. FML.

 

Have you seen the founder of Akathisia Alliance, Jill Nickens's story about opioids and Akathisia? Have a look. Opioids can cause it so maybe Peterson got lucky. Plus, I think he may still take it. Someone said he mentioned he had akathisia on another podcast and I saw comments online about him still being on meds.

 

https://www.madinamerica.com/2021/02/jill-nickens-akathisia-alliance-education-research/

[[Co...]]

Benzolottie, thanks for all your contributions everywhere on the science and meds. You really have earned a degree in pharmacology through this whole ordeal. 

 

Good luck, Rebecca! I hope you can make a sound decision based on everyone's help here.

[[Re...]]

Benzolottie, thanks for all your contributions everywhere on the science and meds. You really have earned a degree in pharmacology through this whole ordeal. 

 

Good luck, Rebecca! I hope you can make a sound decision based on everyone's help here.

 

Yeah, seriously, BLottie is better than an MD.

[[Co...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

 

The link Rebecca posted about Jordan Peterson mentions testing out with Tylenol #3. Also mentions avoiding sodium metabisulfite, which is present in many narcotics. I get the impression, that  the additive is the culprit for only selective opiates working. Tylenol #3 does not contain sodium metabisulfite, neither does morphine, or hydromorphone in Canada at least. It may be possible to find hydromorphone in the US without sodium metabisulfite. The downside of using Tylenol #3 is using it consistently isn't good, because of the Tylenol. Tylenol #3 is OTC in Canada, as it's fairly weak in codeine, so it has a very low potential for abuse. Tylenol overdose would be far bigger that any codeine. I wonder how you'd do with straight codeine? I guess Peterson and his daughter narrowed down the choice of opiates through trial and error.

 

Pharmacists here don't know about sodium metabisulfite. I called 12 (I am not kidding) 12 pharmacies to find morphine in the first place. And I am in a metropolitan city. I asked so many pharmacists about sodium metabisulfite and they had never heard of it. I found a pharmacist who knows about additive-free morphine FINALLY and she has been great. She ordered me shots which pose problems because I cannot inject on my own.

 

I am also dealing with tinnitus which makes things much much worse in terms of taking anything. FML, really guys. FML.

 

Have you seen the founder of Akathisia Alliance, Jill Nickens's story about opioids and Akathisia? Have a look. Opioids can cause it so maybe Peterson got lucky. Plus, I think he may still take it. Someone said he mentioned he had akathisia on another podcast and I saw comments online about him still being on meds.

 

https://www.madinamerica.com/2021/02/jill-nickens-akathisia-alliance-education-research/

 

I think you need to let go of the tinnitus thinking. Yes, many meds can make that worse and one should be careful when having tinnitus but in the end it is a CNS withdrawal symptom just like any of the others. So meds can make it all worse or not. How well you hear vs how intrusive your tinnitus is is a brain thing, not an ototoxicity thing. I really mean this as encouragement.

 

I also think Jordan Peterson is still taking meds yes.

[[Ho...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

 

Thank you. So you are tapering while on the opioid? Does it help the taper at all?

 

No, not tapering. I jumped about nine months ago. Many things are a lot better but I understand the Waves/Window thing now. Still have a lot of waves and few windows, so there are days in a row when things are just awful. When I was tapering I honestly didn't know what was going on. I was told to taper so I could take the low-dose opioid. So I did and my life turned upside down. I dropped .25 mg of clonazepam at a time. I went from 1 mg Clonazepan to .25 in about seven weeks. Lost 40 lbs and my business and my life, basically. So I didn't have the wherewithal to compare anything. Plus I was sent to a psych dr who was trying AD's on me like a revolving door.

 

I just noticed that the Tylenol #3 hits the akethesia. Oxycodone seems not to!

[[Ho...]]

This is crazy but I take low-dose oxycodone for something else. It does nothing to akathasia, at least, not for me. Weirdly, Tylenol #3 with codeine helps. I did a pharmacy gene workup and codeine isn't supposed to work on me as a pain killer. But it works with lowering the akathisia.

 

It's such a low-dose opioid that it doesn't seem to bother me when I stop taking it. I was on four a day, then three, then two, and now 1 and a half. Sometimes only a half.

 

The akathisia is brutal. It kicked in a week ago and almost took me down. I'm not into taking more meds than I need, so I don't take it unless I have to be present, i.e. people are coming over, I have a responsibility to follow through on something, etc.

 

Just a thought.

 

The link Rebecca posted about Jordan Peterson mentions testing out with Tylenol #3. Also mentions avoiding sodium metabisulfite, which is present in many narcotics. I get the impression, that  the additive is the culprit for only selective opiates working. Tylenol #3 does not contain sodium metabisulfite, neither does morphine, or hydromorphone in Canada at least. It may be possible to find hydromorphone in the US without sodium metabisulfite. The downside of using Tylenol #3 is using it consistently isn't good, because of the Tylenol. Tylenol #3 is OTC in Canada, as it's fairly weak in codeine, so it has a very low potential for abuse. Tylenol overdose would be far bigger that any codeine. I wonder how you'd do with straight codeine? I guess Peterson and his daughter narrowed down the choice of opiates through trial and error.

 

Hi BL, I don't know anything about sodium metabisulfite but now I'd like to! I was VERY concerned about taking so much Tylenol! But I recently got all my levels checked and everything is A-ok. No liver or thyroid or any other issue, which surprised me but I'll take it.  One thing I understand is that Tylenol #3 in Canada contains caffeine, while in the US it does not. So if someone is getting Tylenol #3 in Canada, best not! (I had no idea it was OTC in Canada!!)

[[Be...]]

 

Pharmacists here don't know about sodium metabisulfite. I called 12 (I am not kidding) 12 pharmacies to find morphine in the first place. And I am in a metropolitan city. I asked so many pharmacists about sodium metabisulfite and they had never heard of it. I found a pharmacist who knows about additive-free morphine FINALLY and she has been great. She ordered me shots which pose problems because I cannot inject on my own.

 

I am also dealing with tinnitus which makes things much much worse in terms of taking anything. FML, really guys. FML.

 

Have you seen the founder of Akathisia Alliance, Jill Nickens's story about opioids and Akathisia? Have a look. Opioids can cause it so maybe Peterson got lucky. Plus, I think he may still take it. Someone said he mentioned he had akathisia on another podcast and I saw comments online about him still being on meds.

 

https://www.madinamerica.com/2021/02/jill-nickens-akathisia-alliance-education-research/

 

Well, it's not supposed to be in morphine, which is why the Lion website you linked to said it was okay. But I'm not a pharmacologist either.

 

I don't know how opiates would act on tinnitus, as in making it worse. NAIDs would. That would be another question to ask.

 

I never had akathisia from opiates, I've taken codeine, percocet, morphine sulfate, fentanyl, and hydromorphone. Stopped some of these outright after short-term use,  tapered down to lesser ones from stronger, tapered off completely. No akathisia. Restless legs is more likely, but I imagine some people can get akathisia instead of restless legs. I really wonder if she had a pre-existing issue with dopamine that wasn't a problem until she took opiates, which increase dopamine levels. It's like the opiate wore off, but her body couldn't compensate for the lowered dopamine. Have you visited the Facebook group she mentioned?

 

I don't think Peterson got lucky so much as this just isn't common with narcotics. I think she's the exception rather than the rule. Take away the opiate, the body has to make dopamine. Not enough dopamine causes restlessness and agitation. AP"s block dopamine from getting to receptors. Opiate detoxes rapidly take one off the drug, and replace it with methadone or suboxone. So they don't suffer restlessness or agitation. Why are we better at treating opiate w/d then SSRI/SSNRI, benzo and AP w/d? They literally shove opiates at you to treat narcotic w/d. I refused them. Still have random doctors look at me and at my records and ask me which one, because it's not listed on my meds list. My former Peer, Suzie has had the same thing, as had my most recent Peer, Richard. He quit Heroin and refused suboxone. He said he didn't want to be an addict anymore, suboxone would keep him addicted. When I tell doctors neither, they look at me confused. They seem dumbfounded. I know some people are stuck on really low doses of benzos, they just can't get off that last bit. They can only function with a mg or two of Valium. SSRI/SSNRI's can mess with dopamine too, which is why those taken off too quickly frequently develop akathisia.

[[Be...]]

 

Hi BL, I don't know anything about sodium metabisulfite but now I'd like to! I was VERY concerned about taking so much Tylenol! But I recently got all my levels checked and everything is A-ok. No liver or thyroid or any other issue, which surprised me but I'll take it.  One thing I understand is that Tylenol #3 in Canada contains caffeine, while in the US it does not. So if someone is getting Tylenol #3 in Canada, best not! (I had no idea it was OTC in Canada!!)

 

Some people can handle Tylenol just fine. I'm one of those unlucky few who can't. I can take it one off here and there. But consistently. my liver enzymes go whacko. I started with Percocet for pain after the car accident. My doctor ran routine lab work and became concerned, suspected the Percocet. I was switched to morphine. I knew Tylenol #3 was OTC in Canada, there have been efforts to get it OTC here in the US. The only opioid OTC in the US is loperamide (Immodium). And that's because it was assumed nobody would abuse it. Until people started abusing it. Now it is in blister packs you have to open with scissors. And it has warnings on the label about Torsades. To get high off of it, you'd need at least 200 mg! ER's get these people coming in with Torsades from ingesting loperamide to get high. Not that many people can be shocked out of Torsades. It's usually fatal. loperamide is an incredibly weak opiate that is supposed to only affect the digestive system. Well, addicts found out you could get high off of one or two big bottles from the local warehouse store (Sam's, BJ's, Costco). Hence the change to scissors only blister packs. 4 mg every other day stopped my restless legs from opiate w/d, and stopped up my bowels too. Apparently, a very tiny amount does cross the blood brain barrier. Can't even imagine taking 200 mg. I think the FDA and DEA think Americans are too stupid to handle Tylenol #3 OTC. 

[[Ho...]]

 

Hi BL, I don't know anything about sodium metabisulfite but now I'd like to! I was VERY concerned about taking so much Tylenol! But I recently got all my levels checked and everything is A-ok. No liver or thyroid or any other issue, which surprised me but I'll take it.  One thing I understand is that Tylenol #3 in Canada contains caffeine, while in the US it does not. So if someone is getting Tylenol #3 in Canada, best not! (I had no idea it was OTC in Canada!!)

 

Some people can handle Tylenol just fine. I'm one of those unlucky few who can't. I can take it one off here and there. But consistently. my liver enzymes go whacko. I started with Percocet for pain after the car accident. My doctor ran routine lab work and became concerned, suspected the Percocet. I was switched to morphine. I knew Tylenol #3 was OTC in Canada, there have been efforts to get it OTC here in the US. The only opioid OTC in the US is loperamide (Immodium). And that's because it was assumed nobody would abuse it. Until people started abusing it. Now it is in blister packs you have to open with scissors. And it has warnings on the label about Torsades. To get high off of it, you'd need at least 200 mg! ER's get these people coming in with Torsades from ingesting loperamide to get high. Not that many people can be shocked out of Torsades. It's usually fatal. loperamide is an incredibly weak opiate that is supposed to only affect the digestive system. Well, addicts found out you could get high off of one or two big bottles from the local warehouse store (Sam's, BJ's, Costco). Hence the change to scissors only blister packs. 4 mg every other day stopped my restless legs from opiate w/d, and stopped up my bowels too. Apparently, a very tiny amount does cross the blood brain barrier. Can't even imagine taking 200 mg. I think the FDA and DEA think Americans are too stupid to handle Tylenol #3 OTC. 

 

Interesting! Never knew any of that. If I ever have to withdraw from opiates, now I have an idea on how to address restless leg, which I have had for 18 years already. 

 

Sorry R29, don't mean to hijack your string! Just hoping you get relief soon. I can't stand akethesia; it's been driving me up a wall. All of a sudden, today, it isn't there. I'm so glad but shell-shocked and nervous it will come back. (Breathe. Breathe.) You need relief!!