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

So if that is not an option, what is?

You’re going to wear yourself out even more trying to fight your way out of this…….do you agree?

Would it help calm you to fix on a way forward that is possible?

How else can I help you?

Hardy xx

So if that is not an option, what is?

You’re going to wear yourself out even more trying to fight your way out of this…….do you agree?

Would it help calm you to fix on a way forward that is possible?

How else can I help you?

Hardy xx

 

I might have to try taking an opioid to taper the Seroquel and address the pain and akathisia since I refuse psych meds, barbituates, and benzos. Who knows if it would work.

 

 

Worth a try.

It might work.

I’ve just taken a lot of codeine  (Cocodamol) over a few days for a migraine. I would have been in agony without it.

Have you got access to any opiods?

You can get addicted but not anything like the same mechanism as benzos.

I will be very interested to hear how you get on and very relieved for you if it helps.

Hardy xx

I have spoken with two people who have struggled with severe Akathisia and both said opioids helped it. One is on two other meds, the other used it to taper off four meds in benzo wd. No guarantees, obviously, but if it did work and provided relief and I could function and taper then I don't know what to say. It is not my preference to use any drugs but life has me up against a wall.

Yes I’m afraid life does that!

Keep us posted.

Hardy xx

Rebecca, so sorry you are suffering so much. When I was at the point of immense suffering and anguish and wanted off of an AP (Abilify) that I was put on when I was hospitalized post CT, (around 90 days when I reinstated) a psychiatrist put me on a 3 week phenobarbital regimen and had me quickly taper the AP. I got a little break from the pain, and I’m pretty sure the AP was making the akathisia worse. After the pheno, the pain came back full force and aka was still there, and continued to be for 2.5 years, but lessening in degree, and I did safely get off of the AP. Not saying this was smart, but it was what I needed and got me through when I thought I could no longer take another day. Sometimes we need a break from the suffering because it is truly crushing.  I didn’t have to go inpatient and wouldn’t have wanted to anyway. I was taking trazadone then too and took it until it went paradoxical, then I fast tapered. At one point I think it was helping with sleep until it wasn’t. I, personally, could not slow taper. It never worked out for me for whatever reason. I was also offered suboxone for the pain but denied it.

 

Like you I went to many different doctors and psychiatrists for help and the only thing they offered me were more psych drugs or opioid antagonists, but I felt the best route was to just be free of it all so I could heal. It was complete hell, but I’m doing so much better now. I’m not healed, but hopeful. I also had many decades of polydrugging, chemo and multiple surgeries (8 to be exact)with anesthesia, so probably a more extreme case. Just letting you know there are options to slow tapers, our brains have an innate ability to heal due to their plasticity. It’s an excruciating process as slow as molasses, but improvement will come. Virtual hugs to you, sweet lady. You can do this.

 

“He who has a why to live for can bear with almost any how” - Nietzsche

Thank you for sharing that with me. An addiction medicine doctor told me he wanted to give me pheno to get me off of the AP. But he wanted to do it for six days and rapid taper me and it terrifies me to think about that. What exactly did the process and the recovery look like for you? Would you be willing to elaborate? Did you research the two drugs interactions before you made the decision? How long were you on the AP? I am sure sharing your story would help more than just me if you are willing to share in greater detail. I want you to know how much I appreciate your help and the information. Truly.

6 days seems way way too fast. I’m sorry I do not understand the question. Did I research what two drugs? And which process? I had many. I CT’d benzos and opioids, then reinstated benzos, failed spectacularly, was hospitalized, CT’d again because I was an idiot after spending 28 days being brainwashed into thinking I’m an addict, which I’m not, then the pheno assisted taper a few months after that. I was on a low dose, like you are with Seroquel. Tapered over a few weeks with full pheno dose, then tapered that down the last week. The trazadone I took down from 150mg, to 100mg, to 50mg over 3 weeks or so and jumped and was no more miserable than I already was prior to fast taper. They also had me on muscle relaxers for pain, and Lexapro low dose, which I also discontinued.

 

In retrospect if I would have known how painful this process was going to be I would have accepted the Subuxone, but at that point I was so tired of the stigma associated with opioids I couldn’t fathom accepting the treatment. It was at the height of the opioid crisis and any association with opioids was like a big giant X on my forehead, even though I live with chronic pain and took as prescribed, no doctor shopping, etc.  I can tell you when I had appendicitis surgery last year the opioids gave me much relief and a welcomed respite. Do look into what receptors opioids touch because they will affect your hormones, gaba, opioid receptors and histamine if you take them long term.

6 days seems way way too fast. I’m sorry I do not understand the question. Did I research what two drugs? And which process? I had many. I CT’d benzos and opioids, then reinstated benzos, failed spectacularly, was hospitalized, CT’d again because I was an idiot after spending 28 days being brainwashed into thinking I’m an addict, which I’m not, then the pheno assisted taper a few months after that. I was on a low dose, like you are with Seroquel. Tapered over a few weeks with full pheno dose, then tapered that down the last week. The trazadone I took down from 150mg, to 100mg, to 50mg over 3 weeks or so and jumped and was no more miserable than I already was prior to fast taper. They also had me on muscle relaxers for pain, and Lexapro low dose, which I also discontinued.

 

In retrospect if I would have known how painful this process was going to be I would have accepted the Subuxone, but at that point I was so tired of the stigma associated with opioids I couldn’t fathom accepting the treatment. It was at the height of the opioid crisis and any association with opioids was like a big giant X on my forehead, even though I live with chronic pain and took as prescribed, no doctor shopping, etc.  I can tell you when I had appendicitis surgery last year the opioids gave me much relief and a welcomed respite. Do look into what receptors opioids touch because they will affect your hormones, gaba, opioid receptors and histamine if you take them long term.

 

WOW. I cannot believe you went through all of that in such a short time. I hear you about the stigma. I have never used drugs and I didn't even think of that other than if the opioid didn't work to taper the Seroquel then I would be stuck on both medications. Which of course terrifies me. I feel terrified all the time anyway...I was asking if you looked at the side effect profiles of the AP and pheno before you did the taper with it. What was the week coming off the pheno like? What symptoms did you have after all of this? (Other than Akathisia...)

The benzo symptoms were different and other than hyperacusis, ear popping, and tinnitus I think everything else is gone. I had none of these biblical symptoms for 6 months after the benzo detox. Only tapering this Seroquel. The problem is they might not go away -- even if I hold. Even if I taper later. I have held for six weeks and nothing changed. I think I would be back to life with minimal symptoms if I had not been put on Seroquel. I am devastated and mourning the loss of my life.

 

I'm sorry to say but 6 weeks is basically nothing in this process. I'm not a doctor and it's not medical advice. But if it was me personally I would stop the taper. You're rushing it through possible anxiety from the Benzo WD. Take a breath and take your time. You can come off everything in a day, week, month and suffer for months or years. Unfortunately what you're going through isn't going to stop tomorrow, rushing a taper is going to make it worse

I could tell the seroquel was making my akathisia worse right when I took it, so it had to go. The abilify wasn’t as bad and actually helped calm me a little but the psych (he was from the mental health hospital I landed in) said it would be best to discontinue and when he offered the pheno I was so desperate for relief I jumped at the opportunity since I knew how much it helped in the 28 day rehab (should be illegal.) I didn’t know much about AP’s then, didn’t even know Seroquel was one, so no I did not research those. I hate AD’s with a passion and wanted off those quickly too. The pheno taper wasn’t hard at all, except knowing the pain would come back with a vengeance once I stopped it. Nothing compares to what the benzo/opioid CT did to me. That’s when all hell broke loose, and that was after years of fast tapering other classes of psychotropics.  I don’t think I made it all worse, or at least I don’t remember it that way. They gave me Librium in the hospital, which seemed to almost stabilize me a bit, but like the CT, things got ugly about 90 days out again. I’m glad I got off everything when I did and don’t regret it. I’m not much of a prolong the pain kind of person, so slow tapers don’t work for me.

 

I was eating horrible for the first two years, and once I really cleaned up my diet that’s when the akathisia started lifting. MSG is a huge trigger, and anything sugar, preservatives, chemicals etc. But I was in too much of a sorry state early on to care about food. It was like nothing but survival mode for two years straight. 2.5 years things really took a turn for the better when I started trauma therapy for all the memories that kept coming and flooding my brain after so many years of being tranquilized. It took me that long to find a therapist worthy of my time that wasn’t ableist and gaslighty.

The benzo symptoms were different and other than hyperacusis, ear popping, and tinnitus I think everything else is gone. I had none of these biblical symptoms for 6 months after the benzo detox. Only tapering this Seroquel. The problem is they might not go away -- even if I hold. Even if I taper later. I have held for six weeks and nothing changed. I think I would be back to life with minimal symptoms if I had not been put on Seroquel. I am devastated and mourning the loss of my life.

 

I'm sorry to say but 6 weeks is basically nothing in this process. I'm not a doctor and it's not medical advice. But if it was me personally I would stop the taper. You're rushing it through possible anxiety from the Benzo WD. Take a breath and take your time. You can come off everything in a day, week, month and suffer for months or years. Unfortunately what you're going through isn't going to stop tomorrow, rushing a taper is going to make it worse

 

Hard to say since APs also cause the symptoms. It's a chicken or egg scenario.

If you go the opioid route, Rebecca, do not take Suboxone. Very hard to get off. Go with a regular opiate. I tapered off Dilaudid successfully 6 years ago. It was nowhere near what benzo w/d is. Once you step off, you'll go through the 'two weeks' of hell, but it's nothing like benzo acute hell. Diarrhea, vomiting, nausea... but the worst is over. Post-acute is random mild panic attacks and restless legs, and last about a year. Then everything just goes away. Panic attacks stopped for me after 9 months, restless legs after a year. Clonidine helps a lot during that period.

 

 

Butttt... You may not have to do that. Ken Starr MD and a few others have NAD+ detox clinics, and NAD+ is very effective in getting off opioids quickly. NAD+ isn't as effective for benzos, which is why I am in acute hell. It's an assist for benzos, but very effective for opiates. Take the smallest effective dose to help with your aka and pain. The less you have to get off, the better. Ken Starr Wellness has a lot of helpful videos, I watched all the ones about NAD+ and benzos. And he says Suboxone is trickier to get off of, he reserves it for certain patients that come in to his detox clinic. Here is a link to his videos on NAD+ and opiates: https://www.youtube.com/results?search_query=ken+starr+opiates  A few on BB had paid for a 30 min consultation with Starr, where they could pick his brain and ask questions.

 

 

Weigh your options, be informed. I'm glad others popped in to assist. You have a lot to think about, and how you want to proceed. If you decide to go with opiates, it will be far easier getting off than benzos or AP's. Also, while tapering off Dilaudid, I didn't have w/d symptoms, I went slow. They didn't kick in until a few weeks after my last tiny dose. Your quality of life is important, and indications from your posts are that you don't feel you have that now.

I could tell the seroquel was making my akathisia worse right when I took it, so it had to go. The abilify wasn’t as bad and actually helped calm me a little but the psych (he was from the mental health hospital I landed in) said it would be best to discontinue and when he offered the pheno I was so desperate for relief I jumped at the opportunity since I knew how much it helped in the 28 day rehab (should be illegal.) I didn’t know much about AP’s then, didn’t even know Seroquel was one, so no I did not research those. I hate AD’s with a passion and wanted off those quickly too. The pheno taper wasn’t hard at all, except knowing the pain would come back with a vengeance once I stopped it. Nothing compares to what the benzo/opioid CT did to me. That’s when all hell broke loose, and that was after years of fast tapering other classes of psychotropics.  I don’t think I made it all worse, or at least I don’t remember it that way. They gave me Librium in the hospital, which seemed to almost stabilize me a bit, but like the CT, things got ugly about 90 days out again. I’m glad I got off everything when I did and don’t regret it. I’m not much of a prolong the pain kind of person, so slow tapers don’t work for me.

 

I was eating horrible for the first two years, and once I really cleaned up my diet that’s when the akathisia started lifting. MSG is a huge trigger, and anything sugar, preservatives, chemicals etc. But I was in too much of a sorry state early on to care about food. It was like nothing but survival mode for two years straight. 2.5 years things really took a turn for the better when I started trauma therapy for all the memories that kept coming and flooding my brain after so many years of being tranquilized. It took me that long to find a therapist worthy of my time that wasn’t ableist and gaslighty.

 

What were the symptoms that lasted two years? How did the turning point emerge?

If you go the opioid route, Rebecca, do not take Suboxone. Very hard to get off. Go with a regular opiate. I tapered off Dilaudid successfully 6 years ago. It was nowhere near what benzo w/d is. Once you step off, you'll go through the 'two weeks' of hell, but it's nothing like benzo acute hell. Diarrhea, vomiting, nausea... but the worst is over. Post-acute is random mild panic attacks and restless legs, and last about a year. Then everything just goes away. Panic attacks stopped for me after 9 months, restless legs after a year. Clonidine helps a lot during that period.

 

 

Butttt... You may not have to do that. Ken Starr MD and a few others have NAD+ detox clinics, and NAD+ is very effective in getting off opioids quickly. NAD+ isn't as effective for benzos, which is why I am in acute hell. It's an assist for benzos, but very effective for opiates. Take the smallest effective dose to help with your aka and pain. The less you have to get off, the better. Ken Starr Wellness has a lot of helpful videos, I watched all the ones about NAD+ and benzos. And he says Suboxone is trickier to get off of, he reserves it for certain patients that come in to his detox clinic. Here is a link to his videos on NAD+ and opiates: https://www.youtube.com/results?search_query=ken+starr+opiates  A few on BB had paid for a 30 min consultation with Starr, where they could pick his brain and ask questions.

 

 

Weigh your options, be informed. I'm glad others popped in to assist. You have a lot to think about, and how you want to proceed. If you decide to go with opiates, it will be far easier getting off than benzos or AP's. Also, while tapering off Dilaudid, I didn't have w/d symptoms, I went slow. They didn't kick in until a few weeks after my last tiny dose. Your quality of life is important, and indications from your posts are that you don't feel you have that now.

 

Thank you for this information. So you did the opioid then the benzo? I wish I could do NAD+ for the Seroquel but who knows how that could interact...I tried CBD and ended up with an acute distonic episode.

BUMP

There were so many symptoms and nothing just stops, but these were some major turning points for me. Insomnia 1.5 years, but not restful until recently, still get random sleepless nights; itchy hives 2 years; akathisia 2 years: irrational fears 2 years; SI 2 - 2.5 years; could finally nap 2.5 years; agoraphobia better (compounded by Covid) 2.5 years; that indescribable ick chemical toxic feeling 2.5 years; finally able to cry and yawn 3 years; anhodenia lifting 2.5 years. Now at roughly 3.25 years making jokes and laughing too, getting wit and cognitive back, can read now too, but slowly. I’m still socially awkward, but improving. I struggle with creativity, which is a bummer because I need an outlet.  Constants have been pain, tinnitus and fatigue, all lessening in severity over time. Radical acceptance got me out of the despair and loneliness around 2.5 years, and therapy helped. I do a lot of TBI exercises for healing and have since the beginning - puzzles, embroidery, luminosity type games, then progressed to making spreadsheets, trying to write my story, but still struggle to articulate emotions and organize thoughts for flow. I used to be a really good writer. All in all, the first two years were the most traumatic. But I’ve also just been through a lot health wise before this even happened, so I can push through where I think some others might struggle. Just depends on your constitution. I tell everyone tapering is the way go. It seems safer, but like I said, it just never worked for me, not slow tapering anyway. Once I started sleeping I started healing faster and I just look at it all in chunks of time for progression instead of focusing on symptoms and how long they’ve been around. I’m still grieving losses, processing trauma, and just want to be healthy and productive again, but I’ve accepted my life will never be what it once was. This is just a new chapter and that’s okay.

Were you able to work during this time?

Lol, no. I had to quit working in 2014 after chemo destroyed my brain, but no way could I have worked through this. I do volunteer work, but no more than 2 hours at a time max one day a week. My dream is to start working again. I have chronic migraine (which is how all of this polydrugging started) and I think maybe an autoimmune condition due to all these drugs and treatments, maybe. Seeing a rheumatologist in July for testing. Could just be benzo wd mimicking MCAS, fibro and ME/CFS, but since things are slowly getting better, maybe it will just lift someday. Fingers crossed.

I have faith it will.

Thank you for this information. So you did the opioid then the benzo? I wish I could do NAD+ for the Seroquel but who knows how that could interact...I tried CBD and ended up with an acute distonic episode.

 

 

I got off opiates well before I was misdiagnosed and given benzos. If I knew about NAD+ then, I would have probably done it. I was on clonazepam for 15 months, before switching to the benzo-wise PsychNP who switched me to diazepam and helped with tapering. I tapered for 2.5 years approximately, before jumping off with NAD+. I researched and took my time (4 months), before doing this. I also didn't think acute would be quite so bad, NAD+ is unpredictable, but after a very rough week post initial treatment, I see small improvements. In week 2, and doing a few days of more treatments, which is helping.

 

There is no one doing NAD+ for AP's. Not even many that do it for benzos. I'm doing iontophoresis NAD+ at home using ion patch delivery. NAD+ has been used successfully for opioid and alcohol detox. Some suppliers of patches have people buying them for detoxing off opioids, and benzos. The NP I had my telehealth appt with, told me that there have been good results using them for people dependent on opioids or benzos. They require a prescription, which the patch provider supplies. There isn't any evidence of NAD+ working for anything else, and none of the NAD+ centers or iontophoresis patch suppliers provide NAD+ for detoxing anything else. There is evidence for their efficacy in treating opioid and alcohol addiction/dependency, and limited evidence in benzo dependency. And it works best in benzo patients who are at or below the equivalent of 5 mg diazepam. It's a mixed bag. Specialists like Dr Ken Starr tried it, since alcohol hits some of the same receptors as benzos. Starr has adjusted his protocol over the years as he's learned more. AP's work differently, and no one has tried it for AP's. For benzos, it just accelerates recovery, it doesn't stop w/d. Which is why I am in intense acute hell now, having symptoms I rarely or never had during taper. I don't know much about the pharmacology of AP's, Ken Starr could better answer if it would even work.

 

It's a tough decision you have to make. If taking an opiate gives you relief, then know that when you are ready to taper off, it isn't anywhere near as bad as what you went through with benzos, and are going through with AP's. If it doesn't, you are stuck getting off another medication. You also have to find a therapeutic dose, the lowest you can take for relief, the better. It's a two-edged sword. And it totally sucks.

 

It's a tough decision you have to make. If taking an opiate gives you relief, then know that when you are ready to taper off, it isn't anywhere near as bad as what you went through with benzos, and are going through with AP's. If it doesn't, you are stuck getting off another medication. You also have to find a therapeutic dose, the lowest you can take for relief, the better. It's a two-edged sword. And it totally sucks.

 

^^^^ This is what I worry about. But what do you do in a situation like mine? It is so surreal, I cannot even believe it. I feel like I am watching a movie that is someone else's life with a main character who is so beyond troubled there seems to be no way out.

I got off seroquel. But my benzo wd was so bad at the time I don’t really remember the seroquel wd. All I can say is I survived and you will too <3

MEGAN Z!!! I think about you all the time. I have your signature screenshotted on my phone to keep me going.

 

How much Seroquel were you on and for how long? How did you taper it? Did you have Akathisia?

It's a tough decision you have to make. If taking an opiate gives you relief, then know that when you are ready to taper off, it isn't anywhere near as bad as what you went through with benzos, and are going through with AP's. If it doesn't, you are stuck getting off another medication. You also have to find a therapeutic dose, the lowest you can take for relief, the better. It's a two-edged sword. And it totally sucks.

 

^^^^ This is what I worry about. But what do you do in a situation like mine? It is so surreal, I cannot even believe it. I feel like I am watching a movie that is someone else's life with a main character who is so beyond troubled there seems to be no way out.

 

 

As you know, there are a lot of BB's struggling with AP's, mostly Seroquel. My last state-provided Peer brought up Seroquel in a conversation we had. He finds it perplexing how many people get prescribed that, and he told me it is one of the worst AP's to be on. Doctors love ripping patients off benzos, and in their "comfort med" protocol are AP's. Almost happened to me. Glad I left the horrible place I went to, and the PsychNP I went to got me off the Zyprexa 2.5 mg (olanzepine) they put me on while instructing me to cut out one of my two doses of clonazepam for two weeks, then drop the other. I caved in 4 - 5 days after dropping the other 5 mg. It wasn't even just the PsychNP, it was also my wonderful telehealth Peer who had been through a cold turkey w/d of benzos herself. She told to never go for a medical detox. The standard protocol is to give high doses of gabapentinoids (Neurontin or Lyrica) and AP's. She also told me, literally, to "stop taking that shit" (Zyprexa). She was super helpful to me, and was trying to spare me what she went through. She agreed with how the PsychNP was handling things. She finished school, and got her Masters degree, and has since left the Peer program. I do miss her. She said AP's are as bad as benzos, and doesn't understand the rationale for giving them to benzo injured patients.

 

 

My deacon came for his weekly visit this morning, and told me about a boy at the school where he teaches, who was diagnosed as psychotic and prescribed an AP that is only given to adults with reservations. This is a young teenage boy. He paced the floor, couldn't sit still, was agitated. I said to him that Risperidone is approved in kids, and Zyprexa with reservations, but Seroquel is not. He said he thinks it was Seroquel.  The parents wanted him off, and took him for a medical detox. He was taken off over 6 weeks, and spent months after recuperating from horrible withdrawal. His parents said "never again." He never even had psychosis, he was found to have ADHD. He is on no medication, and doing well in school. His horrified parents could do nothing while their son was tortured by this treatment.

 

 

Dr Roger McFillin is a psychologist on Twitter that is part of the #prescribedharm community, and he has a lot to say about bad psychiatry and the misuse and downright abuse of prescribing meds. Yes, he's talked about AP's used for things other than psychosis and/or bi-polar. He rails against inappropriate, and often incorrect, diagnosis. And pushing meds as the first line of treatment. He says that many, but not all, doctors, set their patients up for failure. When they are withdrawing from Psych meds, they're given another bad med to address their w/d. Or they treat tolerance withdrawal with more meds. He really goes off on polypharmacy, he sees desperate patients that are on multiple psych meds. I see former psych patients finally off all meds, and suffering still as a result of decades on stuff many never needed at all, let alone for decades.

 

 

I think we all feel as though we are in a horror show, we see ourselves and can't believe this stuff is happening to us. We certainly never thought we'd be in the situation we find ourselves in, but here we are. I would suggest you read, and reread, the replies here. Don't rush into anything, but if you truly are at the breaking point, and you are aware of the risks of taking yet another med you will need to taper from, knowing it might or might not work, you should let your quality of life dictate your decision.