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Rebecca29: New Here - Seroquel taper after benzo detox, in great distress

Rebecca29

By Rebecca29
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Rebecca29

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During Ativan withdrawal, I did not sleep for two weeks. Doctors at a top-five hospital gave me Seroquel for insomnia, saying it would "calm my nervous system."

I have taken it for close to six months. The drug has stopped working. I can barely fall asleep and wake up in the middle of the night with jerks and tachycardia every night. This started with my last cut of .5mg from 34.5 to 34mg, trying to wean off it. In addition to these side effects of the actual medication, four days after that decrease, I got a chest tremor, I started to have chest pains and muscle pains, leg shakes, and now I am having stomach and diaphragm pains. My diaphragm muscles get locked up, and I cannot breathe. And this is not anxiety. I know the difference. It happened after I ate last night. I am already 20 pounds underweight from the Ativan withdrawal and trying to gain weight, so this is now affecting my eating ability.

I am shocked; to be honest, I feel terror now taking this medication every night, which adds another layer to this already difficult situation. Plus, I was told yesterday I am at risk for increased akasthesia coming off of it, which I slightly have already, and there is concern about tardive dyskinesia coming off the antipsychotic due to current jaw pain symptoms I have been experiencing and how my body has responded to such a small cut of the medication.

I cannot believe this. I feel like I am back to square one of interdose withdrawal from Ativan -- but worse. I would be further along with the Ativan recovery if it were not for this. To make matters worse, the Ativan withdrawal gave me tinnitus. So I already feel like I cannot sleep or relax. Who knows if/when that will go away? More polypharmacy could mean more tinnitus, which has by far been the worst symptom to deal with.

SO WHAT DO I DO? Seroquel is making me so sick. If I go to a hospital, they put me on polypharmacy, and I have the potential for even more problems. Plus, doctors will perceive this as a mental health problem when it is a physical medication issue, and there is no in-between.

I was literally on my knees praying for God to have mercy on me last night. I don't know how or if I can or if my body will survive another withdrawal period. Let alone live through any additional physical symptoms. "Distracting" and "self-soothing" are now out the window. My distress symptoms are so high from the physical pain and suffering. I am already dealing with many of the most unpleasant side effects with no window. I am avoiding polypharmacy at all costs as this isn't any quality of life for a person. I have been bedridden for about ten months now from prescription medication withdrawals.

I have lost everything to Ativan -- my health, happiness, relationships, finances, and work and now Seroquel is coming in to sweep up the floors after. 

I have been crying and crying for hours. Being in my own body feels like being tortured in a foreign prison. I do not want to lose my life to this medication and cannot live being bound to it or any pharmaceutical medications. If I could take them and be well, that would be one thing. But they make me sick and cause more problems than benefits.

If you know of any other resources for help and support on what to do in this situation, please please help me. This literally feels like life or death now.

Edited by manymoretodays
retitled (mmt)
  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Moderator Emeritus
Onmyway Grand Master

Onmyway

Posted
  • Moderator Emeritus
Posted

Dear @Rebecca29, 

I am sorry you are suffering so badly. It sounds horrendous what you are experiencing.  It must feel awful to feel like your own body is not safe. 

I am glad that you found us. We will try to help you. Can you please fill in your drug signature so we can provide the most appropriate advice? 

 

 

 

We will be with you as soon as you complete this. 


OMW

"Nothing so small as a moment is insurmountable, and moments are all that we have. You have survived every trial and tribulation that life has thrown at you up until this very instant. When future troubles come—and they will come—a version of you will be born into that moment that can conquer them, too." - Kevin Koenig 

 

I am not a doctor and this should not be considered medical advice. You can use the information and recommendations provided in whatever way you want and all decisions on your treatment are yours. 

 

In the next few weeks I do not have a lot of capacity to respond to questions. If you need a quick answer pls tag or ask other moderators who may want to be tagged. 

 

Aug  2000 - July 2003 (ct, 4-6 wk wd) , citalopram 20 mg,  xanax prn, wellbutrin for a few months, trazodone prn 

Dec 2004 - July 2018 citalopram 20 mg, xanax prn (rarely used)

Aug 2018 - citalopram 40 mg (self titrated up)

September 2018 - January 2019 tapered citalopram - 40/30/20/10/5 no issues until a week after reaching 0

Feb 2019 0.25 xanax - 0.5/day (3 weeks) over to klonopin 0.25 once a day to manage severe wd

March 6, reinstated citalopram 2.5 mg (liquid), klonopin 0.25 mg for sleep 2-3 times a week

Apr 1st citalopram 2.0 mg (liquid), klonopin 0.25 once a week (off by 4/14/19- no tapering)

citalopram (liquid) 4/14/19 -1.8 mg, 5/8/19 - 1.6 mg,  7/27/19 -1.5 mg,  8/15/19 - 1.35, 2/21/21 - 1.1 (smaller drops in between), 6/20/21 - 1.03 mg, 8/7/21- 1.025, 8/11/21 - 1.02, 8/15/21 - 1.015, 9/3/21 - 0.925 (fingers crossed!), 10/8/21 - 0.9, 10/18/21 - 0.875, 12/31/21 - 0.85, 1/7/22 - 0.825, 1/14/22 - 0.8, 1/22/22 - 0.785, 8/18/22 - 0.59, 12/15/2022 - 0.48, 2/15/22 - 0.43, 25/07/23 - 0.25 (mistake), 6/08/23 - 0.33mg

 

Supplements: magnesium citrate and bi-glycinate

  • Shep changed the title to Rebecca29: New Here - Urgent Help Needed
Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted

Thank you. Updating now. Trying to figure out how to get some relief.

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Moderator Emeritus
Onmyway Grand Master

Onmyway

Posted
  • Moderator Emeritus
Posted
55 minutes ago, Rebecca29 said:

Thank you. Updating now. Trying to figure out how to get some relief.

Hi @Rebecca29

we need a signature that has dates and doses and medicines - you can have a look at mine or other people's for more help. 

Please don't include any symptoms or diagnoses or any considerations of what to do. This is important so we can figure out your drug history. If you don't know exact dates do the best you can - i.e first week of March 2022 is better than spring 2022. 

 

Hang in there, 

OMW

"Nothing so small as a moment is insurmountable, and moments are all that we have. You have survived every trial and tribulation that life has thrown at you up until this very instant. When future troubles come—and they will come—a version of you will be born into that moment that can conquer them, too." - Kevin Koenig 

 

I am not a doctor and this should not be considered medical advice. You can use the information and recommendations provided in whatever way you want and all decisions on your treatment are yours. 

 

In the next few weeks I do not have a lot of capacity to respond to questions. If you need a quick answer pls tag or ask other moderators who may want to be tagged. 

 

Aug  2000 - July 2003 (ct, 4-6 wk wd) , citalopram 20 mg,  xanax prn, wellbutrin for a few months, trazodone prn 

Dec 2004 - July 2018 citalopram 20 mg, xanax prn (rarely used)

Aug 2018 - citalopram 40 mg (self titrated up)

September 2018 - January 2019 tapered citalopram - 40/30/20/10/5 no issues until a week after reaching 0

Feb 2019 0.25 xanax - 0.5/day (3 weeks) over to klonopin 0.25 once a day to manage severe wd

March 6, reinstated citalopram 2.5 mg (liquid), klonopin 0.25 mg for sleep 2-3 times a week

Apr 1st citalopram 2.0 mg (liquid), klonopin 0.25 once a week (off by 4/14/19- no tapering)

citalopram (liquid) 4/14/19 -1.8 mg, 5/8/19 - 1.6 mg,  7/27/19 -1.5 mg,  8/15/19 - 1.35, 2/21/21 - 1.1 (smaller drops in between), 6/20/21 - 1.03 mg, 8/7/21- 1.025, 8/11/21 - 1.02, 8/15/21 - 1.015, 9/3/21 - 0.925 (fingers crossed!), 10/8/21 - 0.9, 10/18/21 - 0.875, 12/31/21 - 0.85, 1/7/22 - 0.825, 1/14/22 - 0.8, 1/22/22 - 0.785, 8/18/22 - 0.59, 12/15/2022 - 0.48, 2/15/22 - 0.43, 25/07/23 - 0.25 (mistake), 6/08/23 - 0.33mg

 

Supplements: magnesium citrate and bi-glycinate

Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted

I tried to update it. Navigating this forum is confusing!

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Mentor
Catina7 Veteran

Catina7

Posted
  • Mentor
Posted

I am so sorry for what you're dealing with Rebecca.  When I am in a horrible state of having severe heart palpitations or insomnia I always turn to EFT (Emotional Freedom Technique), which is like emotional acupuncture.  I find it really helps get me through any rough spots.  I'm glad you're on this forum because it's a great source of information and support.  I hope that you're able to improve your situation and endure the best that you can.

Disclaimer:  This is not professional medical advice but is based on personal experience only.

1994 - 2017:  Prozac, Cymbalta, Celexa, Paxil, Wellbutrin, Zoloft, Seroquel, Buspar, Lorazepam, Xanax, Ambien

2005-present:  Trazodone 50 mg 

2017:  Effexor XR 37.5 >> 75 mg 

2020 (March) - Began 10% monthly taper of 75 mg Effexor XR (in hindsight this was much too fast)

2021 (Sept) - Completely crashed at 12 mg with horrific symptoms.  Went back up to 37.5 mg but kindled myself (held for two years)

2024 (Avg. # of beads per 37.5 mg capsule = 117) -  1/1:  -6 (111) | 2/1:  -5 (106) | 3/1:  -5 (101) | 4/1:  -2 (99) | 5/1:  -3 (96) | 6/1: -4 (92) | 7/1:  HOLD | 8/1  -4 (88) | 9/7  -4 (84) | Oct.  HOLD | Nov. HOLD | 12/1 : -1 (83)

2025 1/1:  -1 (82) 

Other medications:  Levothyroxine 50 mcg 

 

🔑 A Key to Survival:  Turn outward, not inward.  Use the art of distraction to focus on anything but how you're feeling inside.  Never give up hope that you'll make it through and heal.  

  • 2 months later...
Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted

New here. Tapering 75mg Seroquel given to me for sleep during a too-rapid benzo detox last September. Biggest mistake of my life. This medication gave me akathisia and tapering it seems to be making me worse not better. Down to 28mg this week. I can’t take what I have been going through anymore. There isn’t any stabilizing happening and I have tried many variations of a dose drop. One of my worst experiences came after a 1.5 percent drop in Feb. I felt like I was plugged into a light socket with burning skin and an inner vibration for about two weeks. Then the burning turned to pins and needles. Have had every test under the sun run on me and they all seem to come back negative -- I am a perfect picture of health on the outside.

 

If it was akathisia that’s one thing to deal with but that along with tinnitus, inner vibration, skin burning, muscle spasms and muscle stiffness is too much for any person to bare, and believe me I’m fighting it all. I also had an acute distonic reaction and ended up in the ER and got totally gaslighted by the docs and they told me it was a "psychogenic seizure." Got put in the medical hospital for 7 days and tapered 13.5 percent and did OK for three weeks then started having some strange eye pain and fluttering which got much better after five weeks. 

 

All of my docs want me off of all meds. PCP, Psychiatrist, Neurologist. But I cannot seem to taper this medication successfully because I am in too much physical pain. I don't want to be on it for more than a year or be subjected to a five-year-long 2percent a month taper with Akathisia. Can someone help me? Going on like this does not seem sustainable. I do not want to take any other psych meds. Tried Propranolol and it makes me feel like crap.

 

I can’t find a doctor who knows this complex situation and I fear further harm from the medical community. What do you do in this situation? I know about Mark Horowitz, etc, and have a withdrawal coach. I have been totally housebound since the benzo detox and cannot lose everything in my entire life due to a stupid psych med.

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Moderator Emeritus
manymoretodays Grand Master

manymoretodays

Posted
  • Moderator Emeritus
Posted

Oh Rebecca29, @Rebecca29

I'm so sorry.......sounds like an awful ride to date.

Tell us a bit more such as:

Did any of these symptoms present prior to being "detoxed" from Ativan?  I see you noted sick/bedbound June of 2022.

Are you still on Gabapentin 600 mg now?

 

It does look like you fast tapered the quietipine initially, doing 25 mg cuts.

 

We generally advise just a 10% taper from the previous dose, no more than that.

Why taper by 10% or less of my dose?

 

Why do your doctors want you off quetiapine quickly and completely?

And even if you want of all of them, your drug or drug(s) you don't want to go too quickly.

I might even go back up to 34.5 mg of your Seroquel/quetipine, to see if any improvement.  From symptoms that appeared and persisted after you went below 35 mg.  That's a small updose.  And then just HOLD for a month or two.

You won't improve with a too fast taper.

 

And if still on Gabapentin might want to begin that taper.  You'll have to clarify if still on Gabapentin.

 

You may be still be in some Ativan WD, from that whole "detox" thing.

 

Here is the: quetiapine(Seroquel) tapering topic

 

With severe symptoms, you may want to try a small updose, rather than continue tapering.  Sometimes past bigger tapers may later have a cummulative effect, and you did go fast,  With big tapers of 25 mg at a time.

On 4/26/2023 at 7:07 PM, Rebecca29 said:

If it was akathisia that’s one thing to deal with but that along with tinnitus, inner vibration, skin burning, muscle spasms and muscle stiffness is too much for any person to bare, and believe me I’m fighting it all. I also had an acute distonic reaction and ended up in the ER and got totally gaslighted by the docs and they told me it was a "psychogenic seizure." Got put in the medical hospital for 7 days and tapered 13.5 percent and did OK for three weeks then started having some strange eye pain and fluttering which got much better after five weeks. 

 

 

Are you pacing or unable to lay in bed anymore?  I know it's awful and has been prolonged and again......I am so sorry.  It looks like you are coming up on a year soon since you've been housebound.  Are you bedbound while in the house?  Can you go out with assistance if needed.  I mean some of us develop a temporary agoraphobia from being housebound so long.  I can be a cave dweller or isolate,  and sometimes have to force myself out and will.  And I don't do home deliveries......I can get my groceries, and drive, and often do much more.........just saying.......I do fall prey to myself sometimes I think.

 

Welcome Rebecca29.  This is your topic now, and the best place to post your journey, your questions around your case, and communicate with us all.

I look forward to hearing more from you.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16,  medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022, and again finally 5/25/24.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted
39 minutes ago, manymoretodays said:

Oh Rebecca29, @Rebecca29

I'm so sorry.......sounds like an awful ride to date.

Tell us a bit more such as:

Did any of these symptoms present prior to being "detoxed" from Ativan?  I see you noted sick/bedbound June of 2022.

Are you still on Gabapentin 600 mg now?

 

It does look like you fast tapered the quietipine initially, doing 25 mg cuts.

 

We generally advise just a 10% taper from the previous dose, no more than that.

Why taper by 10% or less of my dose?

 

Why do your doctors want you off quetiapine quickly and completely?

And even if you want of all of them, your drug or drug(s) you don't want to go too quickly.

I might even go back up to 34.5 mg of your Seroquel/quetipine, to see if any improvement.  From symptoms that appeared and persisted after you went below 35 mg.  That's a small updose.  And then just HOLD for a month or two.

You won't improve with a too fast taper.

 

And if still on Gabapentin might want to begin that taper.  You'll have to clarify if still on Gabapentin.

 

You may be still be in some Ativan WD, from that whole "detox" thing.

 

Here is the: quetiapine(Seroquel) tapering topic

 

With severe symptoms, you may want to try a small updose, rather than continue tapering.  Sometimes past bigger tapers may later have a cummulative effect, and you did go fast,  With big tapers of 25 mg at a time.

 

 

Are you pacing or unable to lay in bed anymore?  I know it's awful and has been prolonged and again......I am so sorry.  It looks like you are coming up on a year soon since you've been housebound.  Are you bedbound while in the house?  Can you go out with assistance if needed.  I mean some of us develop a temporary agoraphobia from being housebound so long.  I can be a cave dweller or isolate,  and sometimes have to force myself out and will.  And I don't do home deliveries......I can get my groceries, and drive, and often do much more.........just saying.......I do fall prey to myself sometimes I think.

 

Welcome Rebecca29.  This is your topic now, and the best place to post your journey, your questions around your case, and communicate with us all.

I look forward to hearing more from you.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

Hi, I walk 5 miles on my own porch. Cannot lay in bed at all. I wish. None of these symptoms presented before the detox and the benzo wd symptoms were easy compared to these and these have been pretty brutal. I am not on Gabapentin any longer. Docs pulled me off of that to put me on the Seroquel. Don't get me started now that I understand these drugs. Docs want me off due to the severe reaction to the meds and the pain I am in. I cannot withstand a long, long taper. It is not clear what is causing what. Plus, the longer you are on the drug the more risk you have for side effects.

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Moderator Emeritus
manymoretodays Grand Master

manymoretodays

Posted
  • Moderator Emeritus
Posted (edited)

Oh dear.....it has been rough,

More questions.  And I updated your signature and looked at your "About Me" section, that's just available for staff viewing.

If you want to do any further edits to your signature portion below each post of yours, the quick link to it is: AccountSettings/signature/ hit Save at the bottom when done

And I did see that you went down to 28 mg of the quetiapine this week.

 

Are you splitting your dose of quetiapine?  Taking 1/2 dose twice a day?  Only really necessary if you are on immediate release, which I suspect you might be.

 

How are you measuring doses now?

When do you take your dose or doses now?

 

And good for you, I think you've read the tapering topic, or have found that 40 mg/1 mL liquid formula on your own.  You might see if any pharmacies near you make the pediatric liquid formula.  After that ask your doctor to prescribe it.  Possible that you might need to get a compounding pharmacy to make it.

 

And that is a possible.  To cross over from one form of a drug to another.  Here is that topic:

Cross over from one form of a drug to another(such as solid to liquid)

And when doing a cross- over no tapering should be done, basically it's:

3/4 solid + 1/4 liquid of total daily dose for 4 to 7 days

then 1/2 solid + 1/2 liquid total daily dose for 4 to 7 days

1/4 solid + 3/4 liquid .......4 to 7 days

then finally to full liquid

Or some approximation of this.

2 hours ago, Rebecca29 said:

Plus, the longer you are on the drug the more risk you have for side effects.

True, consider also that at the lower doses your risk may be much less as well

 

I did a little calculating and started with a dose of 125 mg late September of last year, and just ran through if you had tapered by 10% every 4 weeks.

13 tapers this way would get you to a year since you began the taper, in late September of 2023. 

And we are still 5 months shy of that.

That calculation got the dose down to 31.7 mg, for late September 2023.

So you have been going a bit quickly.  I understand why.  WD and adverse reactions= such a very tough time.

 

What I don't understand is why doctors and you believe you are primarily having adverse effects from Seroquel/quetiapine.  Seems like everything worsened once you came completely off your benzo.  And this is possible.  You state you never had problems stopping a benzo before this time.  Perhaps:  Hypersensitivity and Kindling set in

Sorry if this is all redundant to you and I know it's miserable from what I read that you wrote and write.

 

What's tough too, is that even in a non-psychotic or schizophrenic diagnosed person, sometimes when going off quetiapine too soon, or too quick......a supersensitivity sets in.  And it sounds like you have read or heard Dr. Horowitz, and he writes about this too.  Immediately or sometime after discontinuation. 

I just pulled a 2017 PubMed article up for you to see now, the abstract anyway, and no, you don't have schizophrenia- just read around that.  We'd like to make every effort for you to avoid any supersensitivity psychosis

https://pubmed.ncbi.nlm.nih.gov/28647739/

 

At the lower doses of quetiapine, one does do a smaller taper, much smaller, which you have been.........yet instead of stabilizing, even a WD stable, you seem to be getting worse......or possibly just more anxious about getting off.  And I know sweetie, things like akathisia, or tardive dyskinesia are some of the most grueling and difficult to deal with. 

More links for your library from here, for when you want to look at them:

stabilizing, what does that mean? How long does it take after reinstating or updosing?

considerations about "stability"

 

What is withdrawal syndrome?

 

The Windows and Waves Pattern of Stabilization (and this one really offers hope Rebecca)

 

Akathisia vs. restelessness, anxiety, agitation and it has a link to weighted blankets which might help, and I don't wish for you to hyper focus on this symptom, as I know it's intense now, just hoping to help you find non-drug relief at this time

 

Tardive dyskinesia, dyskinesia, , dystonia, or involuntary movements  again not to hyper focus, as I'm sure it's so hard not to, but to look at some time

 

Neuro-emotions

 

I saw this mentioned above, and it has been a technique that has certainly helped me calm my nervous system when needed, so thought I'd throw in the link:  EFT(Emotional Freedom Techniques)

 

I'm still wondering if you might updose just a bit, to see, if that helps stabilize......and will confer.  A couple more questions for you at the start of this post.  And no, I'm not a Bot......you might be wondering at this point.

 

Hang on Snoopy.....Rebecca29.  You are courageous and a survivor and you matter so very much.  I am so touched by your story.  Thank you for putting it out here.  So glad for your having a withdrawal coach and concerned doctors and again......so sorry you've had to endure this major medication mishap.

 

L, P, H, and G,

Have a peaceful and hope you sleep sound tonight.

mmt

Edited by manymoretodays

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16,  medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022, and again finally 5/25/24.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted
8 minutes ago, manymoretodays said:

Oh dear.....it has been rough,

More questions.  And I updated your signature and looked at your "About Me" section, that's just available for staff viewing.

If you want to do any further edits to your signature portion below each post of yours, the quick link to it is: AccountSettings/signature/ hit Save at the bottom when done

And I did see that you went down to 28 mg of the quetiapine this week.

 

Are you splitting your dose of quetiapine?  Taking 1/2 dose twice a day?  Only really necessary if you are on immediate release, which I suspect you might be.

 

How are you measuring doses now?

When do you take your dose or doses now?

 

And good for you, I think you've read the tapering topic, or have found that 40 mg/1 mL liquid formula on your own.  You might see if any pharmacies near you make the pediatric liquid formula.  After that ask your doctor to prescribe it.  Possible that you might need to get a compounding pharmacy to make it.

 

And that is a possible.  To cross over from one form of a drug to another.  Here is that topic:

Cross over from one form of a drug to another(such as solid to liquid)

And when doing a cross- over no tapering should be done, basically it's:

3/4 solid + 1/4 liquid of total daily dose for 4 to 7 days

then 1/2 solid + 1/2 liquid total daily dose for 4 to 7 days

1/4 solid + 3/4 liquid .......4 to 7 days

then finally to full liquid

Or some approximation of this.

True, consider also that at the lower doses your risk may be much less as well

 

I did a little calculating and started with a dose of 125 mg late September of last year, and just ran through if you had tapered by 10% every 4 weeks.

13 tapers this way would get you to a year since you began the taper, in late September of 2023. 

And we are still 5 months shy of that.

That calculation got the dose down to 31.7 mg, for late September 2023.

So you have been going a bit quickly.  I understand why.  WD and adverse reactions= such a very tough time.

 

What I don't understand is why doctors and you believe you are primarily having adverse effects from Seroquel/quetiapine.  Seems like everything worsened once you came completely off your benzo.  And this is possible.  You state you never had problems stopping a benzo before this time.  Perhaps:  Hypersensitivity and Kindling set in

Sorry if this is all redundant to you and I know it's miserable from what I read that you wrote and write.

 

What's tough too, is that even in a non-psychotic or schizophrenic diagnosed person, sometimes when going off quetiapine too soon, or too quick......a supersensitivity sets in.  And it sounds like you have read or heard Dr. Horowitz, and he writes about this too.  Immediately or sometime after discontinuation. 

I just pulled a 2017 PubMed article up for you to see now, the abstract anyway, and no, you don't have schizophrenia- just read around that.  We'd like to make every effort for you to avoid any supersensitivity psychosis

https://pubmed.ncbi.nlm.nih.gov/28647739/

 

At the lower doses of quetiapine, one does do a smaller taper, much smaller, which you have been.........yet instead of stabilizing, even a WD stable, you seem to be getting worse......or possibly just more anxious about getting off.  And I know sweetie, things like akathisia, or tardive dyskinesia are some of the most grueling and difficult to deal with. 

More links for your library from here, for when you want to look at them:

stabilizing, what does that mean? How long does it take after reinstating or updosing?

considerations about "stability"

 

What is withdrawal syndrome?

 

The Windows and Waves Pattern of Stabilization (and this one really offers hope Rebecca)

 

Akathisia vs. restelessness, anxiety, agitation and it has a link to weighted blankets which might help, and I don't wish for you to hyper focus on this symptom, as I know it's intense now, just hoping to help you find non-drug relief at this time

 

Tardive dyskinesia, dyskinesia, , dystonia, or involuntary movements  again not to hyper focus, as I'm sure it's so hard not to, but to look at some time

 

Neuro-emotions

 

I saw this mentioned above, and it has been a technique that has certainly helped me calm my nervous system when needed, so thought I'd throw in the link:  EFT(Emotional Freedom Techniques)

 

I'm still wondering if you might updose just a bit, to see, if that helps stabilize......and will confer.  A couple more questions for you at the start of this post.  And no, I'm not a Bot......you might be wondering at this point.

 

Hang on Snoopy.....Rebecca29.  You are courageous and a survivor and you matter so very much.  I am so touched by your story.  Thank you for putting it out here.  So glad for your having a withdrawal coach and concerned doctors and again......so sorry you've had to endure this major medication mishap.

 

L, P, H, and G,

Have a peaceful and hope you sleep sound tonight.

mmt

Oh jeez...when I was in the hospital docs just changed me from pills to liquid. I felt better on the liquid instantly than I did on pills. It didn't hit me the same way as a staircase feeling when I took it. Made sure to get the same pill/liquid manufacturer at hospital.

 

I am on immediate release. Tried splitting the doses 4/4/20mg and it messed me up so much I went back to one dose before bed. Doctor advised to try this. He was modeling it after opiod protocol and I said that is not the same but I was willing to try anything for relief at that point. I take it at 10:30pm. Measuring with a 1ml syringe.

 

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Moderator Emeritus
manymoretodays Grand Master

manymoretodays

Posted
  • Moderator Emeritus
Posted (edited)

You have continued using the liquid then.  40 mg in 1 mL?

Check the expiration date for your liquid quetiapine.

 

 

Well, at least you were in the hospital to do the rapid crossover from pill to liquid.

 

How often do you decrease your dose or taper?  e.g. every 4 weeks, every 2 weeks, every couple of months?

Edited by manymoretodays

Late 2023- gone to emeritus status, inactive, don't @ me, I can check who I've posted on, and I'm not really here like I used to be......thanks.

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16,  medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021. Lapsed.  Redo of quit smoking 9/28/2022, and again finally 5/25/24.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider.  My success story:  Blue skies ahead, clear sailing

 

  • Administrator
Altostrata Grand Master

Altostrata

Posted
  • Administrator
Posted

Hello, @Rebecca29

 

Quote

1/2023 got below 35mg things got tough.

 

What happened when you got to 35mg? What new symptoms occurred?

 

You made another reduction after that, on January 27, to 34.5mg, and another to 34mg. How did your symptoms change?

 

Did you have a withdrawal coach at that time?

 

Quote

week of 4/23/2023 down to 28 mg quetiapine

 

Why did you make such a dramatic decrease?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted

I use the liquid still 10mg/ml. I have tapered every 2-6 weeks depending on symptoms.

 

At 34 mg I got electric sensations on my skin, inner vibration, muscle spams, basically the AKA got worse I think? It was extreme pain. I was not pacing as much as I am now. I did have a coach at the time. 

 

 

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Administrator
Altostrata Grand Master

Altostrata

Posted
  • Administrator
Posted

Were you okay at 35mg? How has your sleep pattern changed since April 23?

1

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • manymoretodays changed the title to Rebecca29: New Here - Seroquel taper after benzo detox, in great distress
Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted

I wasn't OK at 35. I haven't been OK since being on the medication, unfortunately. I should have dropped it in the first week. I was so out of my mind from lack of sleep. I have had one weird effect after the next it just numbed me out at first. Since April 23, I am not sleeping as much. Maybe 4-5 hours/night. I dropped the dose from 28.5 to 28mg six days ago. Not sure what to do next or how to proceed.

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Administrator
Altostrata Grand Master

Altostrata

Posted
  • Administrator
Posted

If I were you, I'd stop tapering until your sleep recovers. You seem to be adding to the withdrawal symptoms that started when you decreased to 35mg.

1

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

Rebecca29 Rookie

Rebecca29

Posted
  • Author
Posted

What about the Akathisia? That is unbearable for me. I cannot take it. The medication causes it also. I don't know which end is up.

  • 6/2020 - prescribed 1.5mg Ativan for general anxiety. Previous as needed use of Xanax, Ativan, Klon stopped without incident.
  • 6/22 Interdose tolerance of Ativan. Sick/bedbound.
  •  9/8/22 Started on 600mg Gabapentin for detox purposes, came off ? date and how
  • 9/16/22 Last dose Ativan. Detoxed too quickly by "professionals."
  • 9/26/22 psych ward for unbearable physical sxs from detox. Started on 125 mg Quetiapine. Docs said this drug would "calm the nervous system and help me heal/sleep."
  • 10/16/22 Quetiapine tapered without incident. 25mg cuts. Felt crappy but no real physical sxs other than tachycardia until 2/23.
  • 1/2023 got below 35mg things got tough.
  • 1/27/23, 1.5 percent cut from 34.5 to 34mg. Developed inner tremor, heart palps, twitches, shakes, etc. week of 4/23/2023 down to 28 mg quetiapine
  • Considering starting 100ml liquid taper ASAP to slowly get off
  • Never did a drug in my life recreationally, barely drank, worked out five days a week.
  • Misdiagnosed as "treatment resistant." Pharma meds make things worse not better for me. I want off all of them.
  • Check "About Me" for the whole story
  • History of general anxiety and depression.
  • Administrator
Altostrata Grand Master

Altostrata

Posted
  • Administrator
Posted

What times o'clock do you take each of your drugs, with their dosages? How do you feel before and after each dose?

 

What was your symptom pattern before you started tapering quetiapine on October 16, 2022(?) ? What new symptoms occurred after you started tapering it?

 

On 4/29/2023 at 5:13 PM, Rebecca29 said:

At 34 mg I got electric sensations on my skin, inner vibration, muscle spams, basically the AKA got worse I think? 

 

Tapering made your symptoms worse at this point. Your coach should have recognized this.

 

It is likely any reductions you made after 34mg compounded the withdrawal you felt at 34mg. Some of what you're calling akathisia is likely from withdrawal.

 

If you stop changing your drugs for a while, this should allow your nervous system to settle down.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • 1 month later...
waynegro Newbie

waynegro

Posted
Posted
On 4/27/2023 at 3:07 AM, Rebecca29 said:

New here. Tapering 75mg Seroquel given to me for sleep during a too-rapid benzo detox last September. Biggest mistake of my life. This medication gave me akathisia and tapering it seems to be making me worse not better. Down to 28mg this week. I can’t take what I have been going through anymore. There isn’t any stabilizing happening and I have tried many variations of a dose drop. One of my worst experiences came after a 1.5 percent drop in Feb. I felt like I was plugged into a light socket with burning skin and an inner vibration for about two weeks. Then the burning turned to pins and needles. Have had every test under the sun run on me and they all seem to come back negative -- I am a perfect picture of health on the outside.

 

If it was akathisia that’s one thing to deal with but that along with tinnitus, inner vibration, skin burning, muscle spasms and muscle stiffness is too much for any person to bare, and believe me I’m fighting it all. I also had an acute distonic reaction and ended up in the ER and got totally gaslighted by the docs and they told me it was a "psychogenic seizure." Got put in the medical hospital for 7 days and tapered 13.5 percent and did OK for three weeks then started having some strange eye pain and fluttering which got much better after five weeks. 

 

All of my docs want me off of all meds. PCP, Psychiatrist, Neurologist. But I cannot seem to taper this medication successfully because I am in too much physical pain. I don't want to be on it for more than a year or be subjected to a five-year-long 2percent a month taper with Akathisia. Can someone help me? Going on like this does not seem sustainable. I do not want to take any other psych meds. Tried Propranolol and it makes me feel like crap.

 

I can’t find a doctor who knows this complex situation and I fear further harm from the medical community. What do you do in this situation? I know about Mark Horowitz, etc, and have a withdrawal coach. I have been totally housebound since the benzo detox and cannot lose everything in my entire life due to a stupid psych med.

Hi Rebecca 

 

W

waynegro Newbie

waynegro

Posted
Posted

Hi Rebecca 

 

Your symptoms to me sounds very much like BIND - Benzodiazepine Induced Neurological Dysfunction. I too had a rapid Benzo detox and suffer from the same symptoms 14 months out. I am on other meds but I think they are masking a lot of the Benzo symptoms.  

  • Administrator
Altostrata Grand Master

Altostrata

Posted
  • Administrator
Posted
On 6/3/2023 at 9:28 AM, waynegro said:

Hi Rebecca 

 

Your symptoms to me sounds very much like BIND - Benzodiazepine Induced Neurological Dysfunction. I too had a rapid Benzo detox and suffer from the same symptoms 14 months out. I am on other meds but I think they are masking a lot of the Benzo symptoms.  

 

Hello, @waynegro This is not surprising, since BIND is a synonym for the general neurological dysfunction caused by withdrawal, which is not particular to benzos. Withdrawal symptoms are similar across drugs. We cannot ascertain which drug is the guilty party merely based on symptoms.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

  • Administrator
Altostrata Grand Master

Altostrata

Posted
  • Administrator
Posted

@Rebecca29 we very much need your daily symptom notes to figure out what you might do.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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