Can't do this another day -- please help me -- I've become a worst case

[[Ha...]]

You can’t possibly be stuck on morphine after a single dose! If it doesn’t help then at least you can cross that off your list.

Could you try codeine?

Hardy x

[[Jd...]]

There are lot of things you could try.  It’s just deciding to do it.  You seem paralyzed by fear for now.  Understandably as I remember those days of having akasthasia and the terror that goes with it.  But my opinion and take it as that is that doing NOTHING will just leave you with the same symptoms you gave now.  In my opinion you don’t “stabilize” your way off akasthasia.  This fear of the unknown is keeping you suffering.  You are worried about getting worse. There is no worse than akasthasia so you’re at a point where you have nothing to lose. 

Try an opioid try kava kava try blue lotus.  Try something though.  You are at a spot with nothing to lose

[[Re...]]

I hear you. I fear the Akathisia getting worse. You are correct. And I hear what you mean but I do think it can get worse in terms of the muscle spasms and time spent moving. I have gotten messages from people who walk 30 miles a day or for 23 hours a day for months or years.

[[Ca...]]

Hi Rebecca,

To answer your question... No It didn't really come back... just one day ...I made a little mess with trying to get off methylphenidate too soon while still in acute. .. you warned me... I reduced from 50mg to 20mg one day and then I got into severe panic and had a little mild akasthisia... then the other day I took full dose again and it then took one more day  for akasthisia and panic and Restless legs to go away... it came attack like... so I tried the Propanolol... it worked very well in me ... and now it's gone again... I didn't have it the last 2 days and needed no more Propanolol... but I have extreme fatigue though...

 

I really really Hope you get better soon!

[[Re...]]

Hi Rebecca,

To answer your question... No It didn't really come back... just one day ...I made a little mess with trying to get off methylphenidate too soon while still in acute. .. you warned me... I reduced from 50mg to 20mg one day and then I got into severe panic and had a little mild akasthisia... then the other day I took full dose again and it then took one more day  for akasthisia and panic and Restless legs to go away... it came attack like... so I tried the Propanolol... it worked very well in me ... and now it's gone again... I didn't have it the last 2 days and needed no more Propanolol... but I have extreme fatigue though...

 

I really really Hope you get better soon!

 

You keep dodging a bullet.

[[Re...]]

An update with questions for the group mind and additional thoughts.

 

Thank you for bearing with me; this is a long post. I am figuring a track off of Seroquel as Tinkered did with getting off of Abilify. (See the earlier post in this thread about it.)

 

I am asking for help with a solution that is the best solution of the worst choices. I understand what I am proposing is controversial for BB, and I hope you know this idea is not my preference. I hate the situation I am in, and I hate the options that I have.

 

I am in experimental territory, as there is no logical, scientific way out of this. Since we know no other medical possibilities with Akathisia, my medical team (PCP, psychiatrist, and pain management doc) all think I should try a test with morphine to see if it can help me taper the remaining  Seroquel. Tomorrow my doc can give me a shot in his office with low-dose (4mg) preservative-free morphine to see if it helps the symptoms. (Avoiding sodium metabisulfite as it can increase Akathisia. Maybe I will be spared the last minute with a window that doesn't close tomorrow morning, so I don't have to do this. Stranger things have happened...)

 

There is not a lot out there on Akathisia treatment and opioids:

https://pubmed.ncbi.nlm.nih.gov/2564626/

https://pubmed.ncbi.nlm.nih.gov/2904116/

 

I understand that opioids can make Akathisia worse. Most everything can. That is the problem. Coming off the opioid after tapering Seroquel could unmask the Akathisia as well, and I could get stuck on a low-dose opioid which I do not want. I also understand stopping the Seroquel that the Akathisia could get worse (or better). UGH. It is so hard to think positively when drugs are so scary.

 

Here are my thoughts/questions: 

 

1. Has anyone out there done this? (I am guessing not...)

2. Does anyone know which countries have more access to morphine and propofol than the US?

3. Does anyone have any ideas on a taper plan to avoid as much as possible a future problem with morphine if the test tomorrow works? Any creative ways to use it while tapering come to mind that could avoid dependence?

4. Should I consider anything else in making this decision? Any other ideas I may have missed?

 

I have spoken with MANY doctors all over the US, and here are their other ideas, which I have declined in favor of the morphine idea:

 

- 6-days of Phenobarbital, remove the Seroquel in that time and remove the pheno

- Coegentin

- Amantadine

- 10-week taper using a Clonidine patch

- Taper using benzos (no thanks)

- Taper using Remeron (Mirtazapine)

 

Doctors seem to know more about morphine than psych, anti-tremor meds, dopamine agonists, benzos, and APs, so if I had to withdraw; I would guess that at least I would have more understanding of an opioid than dopamine agonist withdrawal...I WISH I HAD A NATUROPATHIC OPTION!!!

 

If I had not taken anything for sleep during benzo wd, I guarantee you I would be back on my feet by now. All the benzo symptoms lifted for the most part. Akathisia worsened with Seroquel and brought so many more symptoms with it. So this has prolonged and increased unbearable suffering. Please take this as a warning if you are reading about Seroquel. Remeron (Mirtazapine) is also supposed to be terrible to get off of, even though there has been limited study of using it with Akathisia. Some people find benefits from these medications. You just won't know if you are lucky or not in getting off of them after benzo withdrawal.

 

My docs are educated about Akathisia, so they understand what is happening. I have the support of my close family and friends, who have also read this information and gotten the Catch-22 I am in. The reality of Akathisia is scary stuff. The American medical system treats Akathisia (usually misdiagnosed) with more psych and other meds that cause it and drives many patients to suicide or a life in an asylum. Those around me are trying to protect me.

 

I understand I can taper without adding anything in and deal with increasing Akathisia. People choose to do that. I don't know how at this rate, tapering two to five percent a month, housebound shuffling from room to room, I could keep this up for 2-4.5 years to finish a taper or even hold to taper and hope it resolves for months and months when it could stay the same, get worse or I could still be in this same situation or even worse...

 

If you got this far, thank you for reading and supporting me.

[[Pa...]]

Those articles are hopeful and hope is what you need.  I wouldn’t worry about becoming dependent on the morphine, I’ve come to the conclusion that nothing is as bad as benzodiazepines so tapering off of morphine should be manageable. 

 

As far as it being controversial, desperate times calls for desperate measures and you, your family and your doctors are fully informed and going into this with your eyes wide open.  I hope it works Rebecca29, I want this for you so badly.  You’re a trailblazer, and if it helps you, it could help others who have been harmed by these terrible drugs. I’m in awe of your courage.

[[Re...]]

Those articles are hopeful and hope is what you need.  I wouldn’t worry about becoming dependent on the morphine, I’ve come to the conclusion that nothing is as bad as benzodiazepines so tapering off of morphine should be manageable. 

 

As far as it being controversial, desperate times calls for desperate measures and you, your family and your doctors are fully informed and going into this with your eyes wide open.  I hope it works Rebecca29, I want this for you so badly.  You’re a trailblazer, and if it helps you, it could help others who have been harmed by these terrible drugs. I’m in awe of your courage.

 

Pamster, Your message brings tears to my eyes. You have been so kind to me throughout this process. And your experience has helped so much because of the tremendous insights that you have on this subject matter. You are correct; desperate times call for desperate measures. I cannot take credit for the morphine idea; Jordan Peterson did it first. And it seems like the credit really goes to his daughter, Mikhaila, who ran around the world to help her father heal from his benzo injury. I am aware of another longer-term Akathisia sufferer who I met who utilizes a different opioid for relief. So I know of two other cases. Peterson, according to what I read on Mikhaila's blog, was able to taper off the opioid after removing the offending medications within, I think, 3-6 months. Something like that. I believe that he was on Mirtazapine, also from what she wrote. But I listened to a podcast where they discussed it, and this was after being put on other medications that did not work and made him worse, plus the medical coma, etc. So he had a terrible journey, and I think he is lucky he had his daughter advocating for his healing. Plus he got Covid and pneumonia during treatment for the benzo and Akathisia. His nervous system was really shot. But he also follows a strict diet which she says is the foundation. I could not do the same diet as him, but I am close to it. I think the point is -- GET OFF THE PSYCH MEDS. Anything but psych meds from now on. Here is Mikhaila in a short clip talking about it:

 

 

[Guest [...]]

Rebecca

 

I’ve had bad Akathisia at times. It’s just terrible.

 

I also know that cyproheptadine is given for Akathisia

 

I was prescribed it for migraines, but haven’t taken it as it’s another drug.

 

Good luck

 

Winnie

[[Re...]]

Rebecca

 

I’ve had bad Akathisia at times. It’s just terrible.

 

I also know that cyproheptadine is given for Akathisia

 

I was prescribed it for migraines, but haven’t taken it as it’s another drug.

 

Good luck

 

Winnie

 

Yes, an anticholinergic. Thank you so much for this information. I have gone to med school now, it seems! It blows my mind that science has not solved the issue of Akathisia. Along with tinnitus.

[[Th...]]

Those articles are hopeful and hope is what you need.  I wouldn’t worry about becoming dependent on the morphine, I’ve come to the conclusion that nothing is as bad as benzodiazepines so tapering off of morphine should be manageable. 

 

As far as it being controversial, desperate times calls for desperate measures and you, your family and your doctors are fully informed and going into this with your eyes wide open.  I hope it works Rebecca29, I want this for you so badly.  You’re a trailblazer, and if it helps you, it could help others who have been harmed by these terrible drugs. I’m in awe of your courage.

 

I couldn't agree with this more.  I really want you to heal so much Rebecca.  You are a great woman and you need healing and you have been so positive and supportive on my posts. I don't think there will be one perfect path to get off of these medications for anyone. Everyone's needs are specific to their bodies.  One suggestion I have if you haven't already is possibly speak to Chris Paige, maybe just for one session.  He has been through a difficult taper and he may be able to offer you some guidance here, especially in light of his experience with akathasia and working on building up training materials for medical professionals to better understand it. 

 

 

[[hi...]]

Rebecca29 I'm so pleased to read you have found a possible solution to ease your pain. Your situation broke my heart when I read your post. You replied with to one of my posts with some advice a week or so ago when my husband was in the throes of withdrawal while tapering Clonazepam.  His journey started as a result of trying to taper off Mirtazapine and it proved to be extremely difficult. Subsequently he was prescribed Lexapro and Seroquel.  He only took 125mg of Seroquel for about 10 days but had such an adverse reaction that he tapered off it immediately.  Then came the prescription for Clonazepam.  He's now at day 5 after jumping off Clonazepam at .031 mg.  He's had some severe anxiety, nausea and trembling starting on day 3 after jumping but it has been getting better every day.  We feel so blessed to be coming out of this mess relatively unscathed compared to so many.  I know he's not out of the woods yet as symptoms can pop up weeks or months after stopping drugs like Mirtazapine, Seroquel, and Clonazepam.  but I'm hopeful things will work out well.  I wanted to thank you for taking the time to give advice when you were in such terrible pain yourself.  I will continue to follow your journey of healing and hope that your chosen path, while not the ideal one you wanted, will result in the healing you need.

[[Re...]]

Rebecca29 I'm so pleased to read you have found a possible solution to ease your pain. Your situation broke my heart when I read your post. You replied with to one of my posts with some advice a week or so ago when my husband was in the throes of withdrawal while tapering Clonazepam.  His journey started as a result of trying to taper off Mirtazapine and it proved to be extremely difficult. Subsequently he was prescribed Lexapro and Seroquel.  He only took 125mg of Seroquel for about 10 days but had such an adverse reaction that he tapered off it immediately.  Then came the prescription for Clonazepam.  He's now at day 5 after jumping off Clonazepam at .031 mg.  He's had some severe anxiety, nausea and trembling starting on day 3 after jumping but it has been getting better every day.  We feel so blessed to be coming out of this mess relatively unscathed compared to so many.  I know he's not out of the woods yet as symptoms can pop up weeks or months after stopping drugs like Mirtazapine, Seroquel, and Clonazepam.  but I'm hopeful things will work out well.  I wanted to thank you for taking the time to give advice when you were in such terrible pain yourself.  I will continue to follow your journey of healing and hope that your chosen path, while not the ideal one you wanted, will result in the healing you need.

 

Thank you so much. I can only hope to make it out of this with health and healing to try to help others not have to suffer the way that I have. I hope the best for your husband, and I am glad he is off of everything. If something comes up, whatever you do, do not panic. Any symptoms will go if they come. If you need help, please message me. I will help you in whatever way that I can. Angela Peacock is also great to speak with. She is a withdrawal coach who speaks with hundreds of people and knows practically everything about withdrawal and drugs. She has been on and off over fifty herself! Here is her site should you need it: https://www.apeacockconsulting.com/ I hope that you do not but at least you have it.

[[Re...]]

Those articles are hopeful and hope is what you need.  I wouldn’t worry about becoming dependent on the morphine, I’ve come to the conclusion that nothing is as bad as benzodiazepines so tapering off of morphine should be manageable. 

 

As far as it being controversial, desperate times calls for desperate measures and you, your family and your doctors are fully informed and going into this with your eyes wide open.  I hope it works Rebecca29, I want this for you so badly.  You’re a trailblazer, and if it helps you, it could help others who have been harmed by these terrible drugs. I’m in awe of your courage.

 

I couldn't agree with this more.  I really want you to heal so much Rebecca.  You are a great woman and you need healing and you have been so positive and supportive on my posts. I don't think there will be one perfect path to get off of these medications for anyone. Everyone's needs are specific to their bodies.  One suggestion I have if you haven't already is possibly speak to Chris Paige, maybe just for one session.  He has been through a difficult taper and he may be able to offer you some guidance here, especially in light of his experience with akathasia and working on building up training materials for medical professionals to better understand it.

 

Thank you so much. Please keep me in your prayers. You are absolutely right that everyone is different. I don't know how Chris Paige did this for three years. I did go over his story (His username was Satch on BB) and he had some complicating factors like he tried marijuana, took an antibiotic during the time he had Akathisia and he also was on a hormone. So I do not know if these factors prolonged his recovery from it. Poor guy. I don't know how he lived through that and nobody deserves to have to experience that. It is a miracle that he stayed alive. I know that he is still on Seroquel and Mirtazepine from his YouTube content. I have heard him say he doesn't care how long it takes him to taper. I don't feel that way. I want off. So I suspect he would tell me to taper slow, not add anything in, etc. And I get it. I am not rushing off the med. I feel like I cannot rest being on this Seroquel as it causes Akathisia. It is so distressing. But I will take my time and find the right taper plan. Both Chris and Jordan Peterson came out the other end. Peterson got pneumonia and covid during benzo withdrawal while dealing with severe Akathisia. It's crazy that a body can even survive that.

 

 

[[Bl...]]

I took 1 to 1/2 of a Tylenol#3 tablet daily from 2016 to 2020. It was to calm down a restless low back/legs feeling that would consistently flare up around midnight each day when in bed. When I experienced relief, it was always within minutes of taking the medication. It was weird.

 

But I had clearly reached tolerance and knew instinctively that it was time to stop taking it.  I still struggle with this symptom, but just ride it out each night.

 

When I was in acute withdrawal it was full blown akathisia. It was extremely challenging, since it forced me to walk nonstop or suffer the consequences if sitting or reclining only.

 

I really needed to stop taking Tylenol3, since it had more or less stopped working, and I was reluctant to push the issue for an increase with the prescribing doctor. He had been biting at the bit to stop prescribing for some time.

 

I was surprised such a low dose even stopped that horrible antsy feeling for as long as it did.

 

I fully understand your feelings on wanting relief! Akathisia...at any level of intensity is miserable....and so relentless.

[[Re...]]

I took 1 to 1/2 of a Tylenol#3 tablet daily from 2016 to 2020. It was to calm down a restless low back/legs feeling that would consistently flare up around midnight each day when in bed. When I experienced relief, it was always within minutes of taking the medication. It was weird.

 

But I had clearly reached tolerance and knew instinctively that it was time to stop taking it.  I still struggle with this symptom, but just ride it out each night.

 

When I was in acute withdrawal it was full blown akathisia. It was extremely challenging, since it forced me to walk nonstop or suffer the consequences if sitting or reclining only.

 

I really needed to stop taking Tylenol3, since it had more or less stopped working, and I was reluctant to push the issue for an increase with the prescribing doctor. He had been biting at the bit to stop prescribing for some time.

 

I was surprised such a low dose even stopped that horrible antsy feeling for as long as it did.

 

I fully understand your feelings on wanting relief! Akathisia...at any level of intensity is miserable....and so relentless.

 

Oh gosh, I am so sorry that you had it too. Nobody should have to go through Akathisia. How long did it last? How did it go away? Did you just wake up and it was gone? I am curious about this. Did you have it while tapering?

 

It is torture at any level. One of the worst things about it is how alone you can feel. I feel like an alien living in a human world. Akathisia is not a normal component of human experience. So people can’t understand or relate. It's not like nausea where if you tell someone you threw up they relate. They have compassion because they have experienced it. They can feel their own nostrils burning when you say you threw up because they have been over a toilet with food poisoning before. (Not to be gross but this is what came to mind...)

 

Akathisia is a level of restlessness and agitation many humans have never experienced before so they have no reference point for it. And they have no idea how dangerous it is. Or how many medications can cause it -- over 100. Or that companies bury it in fine print as "may cause restlessness." How you can feel like you have no way out when you have it. The profound grief you feel when you just want to sit down or lay down and you cannot stop moving when you used to experience stillness and peace. And then I can imagine the PTSD that follows a person for life after having it.

 

Did the Tylenol3 help you with the Akathisia? How long did you take the T3 before reaching tolerance? Sorry for all of the questions but you piqued my curiosity.

[[Bl...]]

 

Oh gosh, I am so sorry that you had it too. Nobody should have to go through Akathisia. How long did it last? How did it go away? Did you just wake up and it was gone? I am curious about this. Did you have it while tapering?

 

It is torture at any level. One of the worst things about it is how alone you can feel. I feel like an alien living in a human world. Akathisia is not a normal component of human experience. So people can’t understand or relate. It's not like nausea where if you tell someone you threw up they relate. They have compassion because they have experienced it. They can feel their own nostrils burning when you say you threw up because they have been over a toilet with food poisoning before. (Not to be gross but this is what came to mind...)

 

Akathisia is a level of restlessness and agitation many humans have never experienced before so they have no reference point for it. And they have no idea how dangerous it is. Or how many medications can cause it -- over 100. Or that companies bury it in fine print as "may cause restlessness." How you can feel like you have no way out when you have it. The profound grief you feel when you just want to sit down or lay down and you cannot stop moving when you used to experience stillness and peace. And then I can imagine the PTSD that follows a person for life after having it.

 

Did the Tylenol3 help you with the Akathisia? How long did you take the T3 before reaching tolerance? Sorry for all of the questions but you piqued my curiosity.

 

My memory is compromised due to Ambien and Ativan use...so, my giving an accurate account is impossible. To the best of my recollection I had intense akathisia for the first year of this ordeal. During that time, I had not yet connected the dots that these drugs were causing all these weird symptoms. That revelation only began to materialize after an Inpatient account, when the facility staff abruptly stopped both Ambien and Ativan which then exponentially intensified my misery. Fortunately, I had a surplus of Ambien at home...so I was able to use it right up until when I would take my final crumb.

 

Around two months after being c/t'ed, I was once again in an inpatient setting, only now I'm at the end of my wits/strength. It was during this final inpatient account that the veil really began to lift.

 

Soon after being admitted, the admitting doctor prescribed .5 mg Ativan(1/3 the dose of what I had been taking when c/t'ed a few months earlier). I instantly felt calmed from the akathisia! After a good two weeks at this facility, I was released. I was still very much in tolerance withdrawal, but it was much more tolerable, due to being back on Ativan(albeit only 1/3 my original dose before being yanked off it a few months earlier).

 

The akathisia only began letting up after I reinstated .5 mg Ativan. I began tapering a few weeks after reinstating the Ativan(I chose to jump over to Valium 5 mg and taper from it).

 

That unrelenting inner feeling of restlessness has gradually lessoned over the years. At present I deal with a very low level of this strange sense of restlessness that surges through my body....But this current feeling is by far tolerable, when compared to acute level akathisia. It can be annoying if I let it...I try to just ignore it.

 

I'm looking forward to when it's completely gone!

 

Hope this helps to alleviate any concerns you have. If I really think back...I was SO miserable when in the thick of this ordeal. And so alone and bewildered as to what was happening to me. I'm pretty worn from it all...and am still dealing with benzo injury...hoping to recover some day! Just so thankful to be off these poisons. Lesson learned.

 

I took the T3 for 3-4 years before it began to not work. By the time I began taking it, I had been over acute akathisia for several years. I took it for the restless back and legs feeling that I still deal with today.(hits me around midnight only....I attribute it to my over-doing-it during the day).

 

 

[[Re...]]

Thank you for sharing all of this with me. I’m so glad you’re off also. That in and of itself is a great stress reducer I’m sure.

[[Bl...]]

Thank you Rebecca. Although getting off these drugs was liberating, I unfortunately had to start chemo soon after the tapering process ended. I was so sick at that time and was uncertain how I would hold up during further trauma to my already fragile system. This entire benzo process has been a strange journey and as far as I'm concerned, it's a hidden epidemic...it makes all other stressful events in life all the more challenging.

 

It can be difficult to get a break, since we can't prevent unforeseen events. But it really is like fuel to the fire when contemplating a possible "defeat". It's the will to want to live and to never allow an outside source take that naturally innate drive from us....whether or not that outside source does it in ignorance/indifference/or apathy.

[[Re...]]

Well, I survived the morphine test. It wasn't that bad. Immediately stopped the pacing and movements upon injection. Still have some inner restlessness but overall, agitation/mood/pain saw improvements. It was a small amount -- 4mg. So now we have to figure out stabilization and a taper plan to eliminate the Seroquel. Definitely open to creative ideas from anyone who has done this. One doc thinks a 12-week taper but he has not done this before, someone who I know who went through this with a family member said try to scoot off in a month's time. They scooted the family member off 500+mg of Seroquel using morphine in six weeks plus other drugs that had gone adverse. Family member was poly-drugged.

 

One step down I guess. Many more to go.

[[Pa...]]

I’m thrilled to hear you were able to stop pacing and other movements, what a relief!  I know you’re in uncharted territory but you took the first step to what will hopefully help you.  You’re a brave woman and I’ve got my fingers crossed for you.  Well as much as I can cross these gnarly old fingers. 

[[Re...]]

Thank you, Pamster. If only it was chamomile tea and not morphine!! But yes, I am grateful I had some relief. I laughed today. That hasn't happened in a long long time.

 

I still have to figure my way into a taper plan. One of my docs thinks 12 weeks another thinks shorter. 2-5 percent per month would leave me tapering at 2-4.5 years on these meds. 28mg of the Seroquel. UGH. Talk about prolonging an original benzo withdrawal.

 

There are so many variables and so many unknowns -- I don't have to tell you this. I could do the three-month taper or taper longer and still have the same results.

 

I haven't tried to taper yet using the morphine. I don't even know if it would work. I took one dose today and that is it for now. Until I have a plan that makes sense and that I feel comfortable with.

[[Re...]]

Update...slept six hours and woke up with less pain and inner restlessness. Laid in bed for about three hours miraculously. Felt very groggy from the morphine I think which might be a good sign because since benzo withdrawal you have had to hammer me like a horse for me to get any effect from anything. So the fact that I took such a small dose of the morphine and felt so bad might be a positive sign??

 

Anyway, all symptoms came back about 24 hours later.  I am back to feeling like a piece of wood plugged into an electrical socket with huge cartoon character eyeballs. This is what Akathisia feels like to me.

 

Strangely, the symptoms ramped up after eating and I cannot figure out why because I eat high fat and some carbs with meat protein. Ketosis also made everything ramp up so I had to get out of that. I ran what I ate by a friend on BB who knows about delicate diets and it isn't high in histamines or anything inflammatory so I am not really understanding why this happens.

 

I took the morphine to test if it could work. Now I have the challenge of developing a treatment plan with it so I am definitely still in this maze of unbearable suffering. I got a small break which I am very grateful for.

[[Pa...]]

To feel any kind of relief is wonderful, I’m grateful you had a few moments of peace. 

[[Re...]]

Yes, Pamster. A little relief made me realize how much adrenaline I am running 24/7. Such toxic energy for such a typically quiet meditator.

 

The issue now is that a small amount of morphine made me really groggy. I even felt hot yesterday and almost fainted after the shot when I stood up in the docs office. It went away and I was OK later. I don't think it was stress as my BP and HR were low.

 

If this is used to taper me I might be really drugged for a bit which isn't preferable by any means. Because, how long is that? And what does that mean? 

 

This is all just such a Catch-22. I am really trying to fight my way out of it. I don't really know what the chance of relief is long-term or healing. It is quite scary to be in this situation. Somehow, I have accepted it. I don't know how. It all seems so surreal.