Jump to content

Jardinista: Need info on tapering off baclofen


Jardinista

Recommended Posts

I stupidly started taking 10 mg per day of baclofen for pain, after being very clear with my doctor that I didn't want to take anything that causes physical dependence/addiction. The side effects were bad after taking it about 8 days so I stopped - and am now experiencing withdrawal! Turns out it must be tapered off. I'm beyond angry at myself and my doctor. Conventional instructions are to reduce 10 mg to 5 mg for a week, then half again, then stop - distressingly similar to the incorrect info we get about ADs. Does anyone know or have any experience with tapering off after taking 10 mg/day for 8 days?

 

As background, I have taken ADs for over 30 years and have spent the last 5 years trying to taper off venlafaxine.  I am now diagnosed with ME/CFS/mitochondrial deficiency.  I'm still taking 8 mg of venlafaxine.

Edited by Emonda
Name to title

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Emonda changed the title to Jardinista: Need info on tapering off baclofen
  • Administrator

Hi @Jardinista and welcome to Surviving Antidepressants

 

For reducing Baclofen, we recommend no faster than a 10% reduction a month (based on the prior month's reduction, not the original dose). For more, see:


Why taper by 10% of my dosage?

 

Micro-taper instead of 10% or 5% decreases
 

The Brassmonkey Slide Method of Micro-tapering

 

Please add a signature.  Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

  • Any drugs and supplements prior to 24 months ago can just be listed with start and stop years. 
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
  • Please leave out symptoms and diagnoses. 
  • A list is easier to understand than one or multiple paragraphs. 
  • This is a direct link to your signature:  Account Settings – Create or Edit a signature

This is your introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community.  I hope you’ll find the information in the SA forums helpful for your situation.  I'm sorry that you are in the position that you need the information, but I am glad that you found us.

2010-2011 - Tramadol - Can't remember dosage

2011 - CT Quit Tramadol

2011-2019 - St Johns Wart - Started out at 3 Pills a day (300 MG) and increased to 6 per day over the years

August 2019 - CT Quit St Johns (Told by Hospital Dr to Stop Taking due to increased BP)

September 2019 - Citalopram 10mg - Approx 2 weeks - CT Quit

September 2019 - October 2019 - Clonazepam .5mg - Approx 3 weeks - CT Quit

Drug Free Since October 5th 2019

Link to comment
  • 2 months later...

Thank you for your response.  After my first post, I was so sick from baclofen withdrawal that I wasn't able to put together the information requested.  Now, three months later, I've got it ready.  Please see attachment. 

 

 

Complicating factors(1)edited for SA.docx

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

Here's the requested information  - not included in the last post by mistakeSA info.docxSA info.docxSA info.docx

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

This is my first experience with posting on Surviving Antidepressants.  I'm confused - I see my topic has been approved but I haven't gotten any responses or guidance yet.   I realize I submitted a lot of information and have a complicated history with psychoactive drugs, so expect it may take awhile for a response to be sent.  However, I'm pretty messed up and very anxious to know what guidance will be offered and whether there's any action it's safe for me to take.  Am I doing the right thing?  Could you possibly let me know about how long I can expect for a reply?  Not complaining in the least and in fact appreciate SA's careful approach - it would just help me to know better what the timing might be.

 

Thank you.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Administrator

Hello @Jardinista,

I've seen the message you sent me offline.

 

Please post information directly into your thread for all of us to read. I am not comfortable clicking on your two attached documents, so I haven't read them.

 

Thanks, Emonda

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment

 

Here's all the background information requested. I'll include more about my current situation and what I'm seeking advice for in my next post.

 

Thanks in advance for the help - I feel trapped in an impossible mess and really need more information and advice so I can figure out what to do.

 

Last 12-24 months:

 

Medications:

:

·        Venlafaxine approx 8 mg 1xday

·        Irbesartan 150 mg 1xday

·        LDN 6 mg 1xday. Compounded formula

·        Sodium cromolyn 100 mg 2 capsules 4xdaybwith food - compounded formula

·        Baclofen 10mg

            1xday December 28, 2023 – present

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday. 

            March 31 (present) WD symptoms persisting

 

Supplements:

 

·        Mitocore for ME/CFS - 1 dose 1xday                                     April 2023 - January 2024

·        Vit D/K - 5000 IU 1xday                                                          January 2024 – March 21 (present)

·        Shen ling bai zhu wan 1 dose 2xday                                     February 2024 – March 31 (Present)

·        Te Xiao zao ren an mian wan 1 dose 2xday                          February 2024 – March 31 (Present)

·        Parasym plus 1 pill 1xday                                                       April 2023 – March 31 (present)

·        Mitopure 500 mg 1 pill 1xday.                                                March 2023-March 31, 2024 (present0

·        AlphaGPC 300 mg 1xday                                                       February 2024 – March 31 (Present)

·        Magnesium glycinate – 120 mg 1xday                                   February 2024 – March 31 (Present)

·        Best-rest formula 1-2 capsules 1xnight                                  March 20, 2024 -  March 31 (present)

·        Amino Acids Crystals free-form – ¼ tsp                                 November 2022-March 2024

·        CoQ10 100 mg 1 pill 1-2xweek                                              March 15, 2024 – March 31 (present)

·        Nordic naturals omega 3 670? Mg 1 pill 1xweek                   March 15, 2024 – March 31 (present)

·        Vit B12 1.25 mg                                                                      February 2024 – March 31 (Present)                

·        Chinese medicine herbal prescription for chronic fatigue      April 2023 – March 31 (present)    

·        Berberine Complex 2 capsules 1xday                                    January 2024 – March31, 2024 (Present)

 

 

24 months ago:

 

Medications:

 

·        Venlafaxine HCL XR,  2010 75 mg 1xday

         2018 began tapering, dropping 1 bead every 4-6 weeks

         2022 approx 8 mg 1xday

 ·        Irbesartan 150 mg - 2019 to March 31, 2024 (present)

·        Clonopine 2016  1 pill as needed to sleep.  Used only 2 weeks, then did two week taper with no bad effects

·        Wellbutrin 2016 1 pill as desired for energy.  Stopped after limited use with no bad effects

·        Metoprolol 2014-June 2016

·        Amlodipine 2016-2017

 

Supplements:

 

Thorne B-Complex – 1 capsule 1xday                                              

Astragulus  1125 mg 1 capsule 1xday

Rhodiola 350 mg 1 capsule 1xday

Berberine Complex 2 capsules 2xday

 

Antidepressant history: 

 

1991 - 1996 Prozac. Cold turkey withdrawal

1997 -  2004 Zoloft.  Standard two week withdrawal with switch to Celexa

2004 - 2010 Celexa standard two week withdrawal with switch to venlafaxine

2010 – March 3, 2024 (present) Venlafaxine HCL XR 75 mg tapered down to 8 mg as of December 2021– still holding at 8 mg

 

 

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

Here’s more specific information about my problems with baclofen, and my questions about my options.

 

It's a lot of information, but I wanted to try to include everything necessary so I can get the advice I need.  It's hard for me to believe I let myself get in this situation with baclofen after my five-year taper most of the way off venlafaxine.  I told my doctor not to give me another drug that could cause physical dependence, but he did anyway, and I was foolish enough to trust him and not check it out myself. 

 

Baclofen details:

 

History:

Baclofen 10mg

            1xday December 28, 2023 – present

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday. 

            April 6, 2024 (present) WD symptoms persisting

 

 Withdrawal symptoms as of April 6, 2024:

·        90-95% Bedridden

·        Queasiness, nauseous feeling

·        Anxiety

·        Extreme fatigue, muscle weakness, inability to be upright over 5 minutes without distress

·        Brain fog

·        Hot flashes

·        Chills

·        Diarrhea, loose stools

·        Mild anorexia

·        Tremors in hands

·        Depression and suicidal ideation

·        Insomnia

·        Increased noise sensitivity

·        Exacerbation of ME/CFS symptoms

 

 Discussion:

·        Took baclofen 10 mg 1xday for 7 days before stopping. 

·        Developed immediate severe withdrawal symptoms - nausea, dizziness, anxiety, weakness, anorexia

·        Reinstated to 5 mg, then upped to 7.75 mg, due to severity of WD at 5 mg

·        Haven't stabilized at 7.75 mg.  WD symptoms continue to be severe.  I have been bedridden the majority of the time and cant care for myself.  Slight improvement for a couple of weeks after acupuncture treatments until I developed insomnia (2.5 - 4 hours sleep/night) for the last 3 weeks, leading to severe weakness, worse anxiety, nausea, anorexia, tremor 

 

 Dosing schedule as of April 6, 2024:

·        2.25 mg baclofen at 8:45 am, 10 am, and 11:15 am.  Relieves nausea and some anxiety.

·        8 mg (9 beads) venlafaxine at 9:30 am.  Taking my venlafaxine dose seems to make me feel a little better about 5 hours later.

 

 Insomnia

·        Havent gotten a full nights sleep since March 10, 2024.  My already limited strength is draining away.  Acupuncture treatment usually gives me one to two nights of 6 hours, then back to waking after 1-3 hours and not able to go back to sleep.

 

Complicating Factors

·        74 years old in poor health

·        Diagnosed with mitochondrial dysfunction (blood test April 2023).   Mitochondria unable to produce adequate energy for body to function properly.

·        35 year history of AD use.  Four different ADs with too-fast withdrawal from first three

·        Based on symptoms and on results of the mitochondria test, diagnosed in April 2023 with ME/CFS.  Symptoms began in 2014.  Currently little strength, PEM, hypersensitive to many drugs, impaired immune function, limited ability to exercise

·        Currently tapering off venlafaxine HCL XR since 2018 - paused at about 8 mg since January 2022

 

Questions:

·       I thinking that since being polydrugged with baclofen on top of venlafaxine, Im experiencing protracted withdrawals with developing withdrawal symptoms.  Does this seem right?

·        Some people have reported (in a venlafaxine withdrawal support group), that after having a too rapid taper, they were able to reinstate venlafaxine back to the dose at which they are not having WDs, stabilize, and then successfully taper at no more than a 10% drop from previous dose over no less than 4 weeks.  Therefore Im asking about the risks that might be involved with reinstating baclofen.  My condition has been deteriorating and don't know if it's better to stick out my current withdrawal symptoms or to carefully titrate up to see if withdrawal symptoms resolve.  Don’t know if it’s valid to compare what happens with venlafaxine to baclofen.

·        I believe what Im experiencing are withdrawal symptoms and not side effects because I feel a little bit better after I take baclofen, and also because they are so much more overwhelming than the side effects I had.

·        The side effects that led me to stop taking baclofen were unpleasant but relatively mild compared to the withdrawal symptoms Im having now.  I would rather deal with the side effects, even long term, than the withdrawal symptoms which are causing serious health issues at this time that I fear will lead to even worse overall health.

·        I realize there’s no guarantee reinstating will help.  I know it’s not possible to know what will happen, but need advice about whether it’s more likely reinstating would help or more likely it would hurt or make no difference.  Do you think I’m likely to worsen my condition if I reinstate?

·        How risky is it if I try adding a small amount of baclofen to my current dose, with the idea of increasing until I feel relief (if I do)

·        Because of my age and poor health due to ME/CFS I am concerned  with my weakening condition  so need to know how to assess whether it’s better for me to reinstate to 10 MG original dose) or something in between 7.75 mg (current dose) and 10 mg, or better to stay at 7.75 mg until (or if) I’m able to stabilize. 

·       The way I feel now is hard to tolerate and mostly waves with very few brief windows. I’m afraid being mostly bedridden is causing damage to my already poor health, but I’m too weak to move around for more than a few minutes.  I dont know what else to do – please help me figure out what has the best chance of helping me get through this.

 

Thank you.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

 

Here's all the background information requested.  I've also included additional information that I hope is helpful, and put my questions that I need help with at the end.  It's a lot of information, but I wanted to try to include everything necessary for someone to give me the advice I need.  It's hard for me to believe I let myself get in this situation with baclofen after my five-year taper most of the way off venlafaxine.  I told my doctor not to give me another drug that could cause physical dependence, but he did anyway, and I was foolish enough to trust him and not check it out myself. 

 

Thanks in advance for the help - I really need it!

 

Last 12-24 months:

 

Medications:

:

·        Venlafaxine approx 8 mg 1xday

·        Irbesartan 150 mg 1xday

·        LDN 6 mg 1xday. Compounded formula

·        Sodium cromolyn 100 mg 2 capsules 4xdaybwith food - compounded formula

·        Baclofen 10mg

            1xday December 28, 2023 – present

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday. 

            March 31 (present) WD symptoms persisting

 

Supplements:

 

·        Mitocore for ME/CFS - 1 dose 1xday                                     April 2023 - January 2024

·        Vit D/K - 5000 IU 1xday                                                          January 2024 – March 21 (present)

·        Shen ling bai zhu wan 1 dose 2xday                                     February 2024 – March 31 (Present)

·        Te Xiao zao ren an mian wan 1 dose 2xday                          February 2024 – March 31 (Present)

·        Parasym plus 1 pill 1xday                                                       April 2023 – March 31 (present)

·        Mitopure 500 mg 1 pill 1xday.                                                March 2023-March 31, 2024 (present0

·        AlphaGPC 300 mg 1xday                                                       February 2024 – March 31 (Present)

·        Magnesium glycinate – 120 mg 1xday                                   February 2024 – March 31 (Present)

·        Best-rest formula 1-2 capsules 1xnight                                  March 20, 2024 -  March 31 (present)

·        Amino Acids Crystals free-form – ¼ tsp                                 November 2022-March 2024

·        CoQ10 100 mg 1 pill 1-2xweek                                              March 15, 2024 – March 31 (present)

·        Nordic naturals omega 3 670? Mg 1 pill 1xweek                   March 15, 2024 – March 31 (present)

·        Vit B12 1.25 mg                                                                      February 2024 – March 31 (Present)                

·        Chinese medicine herbal prescription for chronic fatigue      April 2023 – March 31 (present)    

·        Berberine Complex 2 capsules 1xday                                    January 2024 – March31, 2024 (Present)

 

 

24 months ago:

 

Medications:

 

·        Venlafaxine HCL XR

2010 75 mg 1xday

2018 began tapering, dropping 1 bead every 4-6 weeks

2022 approx 8 mg 1xday

 

·        Irbesartan 150 mg - 2019 to March 31, 2024 (present)

·        Clonopine 2016  1 pill as needed to sleep.  Used only 2 weeks, then did two week taper with no bad effects

·        Wellbutrin 2016 1 pill as desired for energy.  Stopped after limited use with no bad effects

·        Metoprolol 2014-June 2016

·        Amlodipine 2016-2017

 

Supplements:

 

Thorne B-Complex – 1 capsule 1xday                                              

Astragulus  1125 mg 1 capsule 1xday

Rhodiola 350 mg 1 capsule 1xday

Berberine Complex 2 capsules 2xday

 

Following is a summary of my history with psychoactive drugs, information about other health issues that may complicate the tapering process, 

 

 

Antidepressant history: 

 

1991 - 1996 Prozac. Cold turkey withdrawal

1997 -  2004 Zoloft.  Standard two week withdrawal with switch to Celexa

2004 - 2010 Celexa standard two week withdrawal

2010 – March 3, 2024 (present) Venlafaxine HCL XR 75 mg tapered down to 8 mg as of December 2021 – now holding

 

Baclofen details:

 

Withdrawal symptoms as of March 31, 2024:

·        90-95% Bedridden

·        Queasiness

·        Anxiety

·        Extreme fatigue, muscle weakness, inability to be upright over 1-3 minutes

·        Brain fog

·        Hot flashes

·        Chills

·        Diarrhea, loose stools

·        Mild anorexia

·        Tremors in hands

·        Depression and suicidal thoughts

·        Insomnia

·        Increased noise sensitivity

·        Exacerbation of ME/CFS symptoms

 

Compounding factors:

·        Antidepressant history

·        Tapering off venlafaxine

·        Diagnosed with ME/CFS April 2023, started in 2014

·        Labs show mitochondrial dysfunction April 2023

 

Discussion:

·        Took baclofen 10 mg 1xday for 7 days before stopping. 

·        Developed immediate severe withdrawal symptoms - nausea, dizziness, anxiety, weakness, anorexia

·        Reinstated to 5 mg, then upped to 7.75 mg, due to severity of WD at 5 mg

·        Haven't stabilized at 7.75 mg.  WD symptoms continue to be severe.  I have been bedridden the majority of the time and cant care for myself.  Slight improvement for a couple of weeks after acupuncture treatments until I developed insomnia (2.5 - 4 hours sleep/night) for the last 3 weeks, leading to severe weakness, worse anxiety, nausea, anorexia, tremor 

·       

Dosing schedule as of March 31, 2024:

·        2.25 mg baclofen at 8:45 am, 10 am, and 11:15 am.  Relieves nausea and some anxiety.

·        8 mg (9 beads) venlafaxine at 10:00 am.  Usually feel some relief around 3:30 pm, although not always.  Mood improves around 7 pm, sometimes strength improves slightly too.  Taking my venlafaxine dose seems to make me feel a little better about 5 hours later.

 

Insomnia

·        Havent gotten a full nights sleep since March 10, 2024.  My already limited strength is draining away.  Acupuncture treatment usually gives me one to two nights of 6 hours, then back to waking after 1-3 hours and not able to go back to sleep.

·         having panic attacks, anorexia, nausea, waves of exhaustion, aching muscles, tremor, violent hot flashes preceded by a feeling of malaise, inability to stand up more than a couple of minutes.  My condition has deteriorated and I cant seem to make any improvement.

 

Complicating Factors

·        74 years old in poor health

·        Diagnosed with mitochondrial dysfunction (blood test).   Mitochondria unable to produce adequate energy for body to function properly.

·        35 year history of AD use.  Four different ADs with too-fast withdrawal from first three

·        Based on symptoms and results of the mitochondria test, diagnosed with ME/CFS for last 10 years.  Little strength, PEM, hypersensitive to many drugs, impaired immune function, limited ability to exercise

·        Tapering off venlafaxine HCL XR since 2018 - holding at about 8 mg for over two years

 

Questions:

 

I thinking that since being polydrugged with baclofen on top of venlafaxine, Im experiencing protracted withdrawals with developing withdrawal symptoms.  Does this seem right?

·        Some people have reported (in a venlafaxine withdrawal support group), that after having a too rapid taper, they were able to reinstate venlafaxine back to the dose at which they are not having WDs, stabilize, and then successfully taper at no more than 10% drop over 4 weeks.  Therefore Im asking about the risks that might be involved with reinstating baclofen.  I feel my condition has been deteriorating and don't know if it's better to stick out my current withdrawal symptoms or to carefully titrate up to see if withdrawal symptoms resolve.  Don’t know if it’s valid to compare what happens with venlafaxine to baclofen.

·        I believe what Im experiencing are withdrawal symptoms and not side effects because I feel a little bit better after I take baclofen, and also because they are so much more overwhelming than the side effects I had.

·        The side effects that led me to stop taking baclofen were unpleasant but relatively mild compared to the withdrawal symptoms Im having now.  I would rather deal with the side effects, even long term, than the withdrawal symptoms which are causing serious health issues at this time that I fear will lead to even worse overall health.

·        I realize there’s no guarantee reinstating will help.  I know it’s not possible to know what will happen, but need advice about whether it’s more likely reinstating would help or more likely it would hurt or make no difference.  Do you think I’m likely to worsen my condition if I reinstate?

·        How risky is it if I try adding a small amount of baclofen to my current dose, with the idea of increasing until I feel relief (if I do).  The way I feel now is very uncomfortable and I’m concerned that it’s causing damage to my already poor health.  I dont know what else to do. 

·        Because of my age and poor health due to ME/CFS I am concerned  with my weakening condition  so need to know how to assess whether it’s better for me to reinstate to 10 MG (original dose) or something in between 7.75 mg (current dose) and 10 mg, or better to stay at 7.75 mg until (or if) I’m able to stabilize. 

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor
Posted (edited)
10 hours ago, Jardinista said:

Baclofen 10mg

            1xday December 28, 2023 – present

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday. 

            March 31 (present) WD symptoms persisting

 

I’m so sorry you're going through all of this, Jardinista.  Reading this makes me a bit curious. I’d think one wouldn’t expect such drastic withdrawals after 8 days of use. What symptoms were you having that made you want to get off of it in January? 
 

Regarding your symptoms now:

9 hours ago, Jardinista said:

Withdrawal symptoms as of April 6, 2024:

·        90-95% Bedridden

·        Queasiness, nauseous feeling

·        Anxiety

·        Extreme fatigue, muscle weakness, inability to be upright over 5 minutes without distress

·        Brain fog

·        Hot flashes

·        Chills

·        Diarrhea, loose stools

·        Mild anorexia

·        Tremors in hands

·        Depression and suicidal ideation

·        Insomnia

·        Increased noise sensitivity

·        Exacerbation of ME/CFS symptoms


When did these symptoms start? Are they all new since starting baclofen back in December? How are they different since your reinstatement and updose?

 

I see you take a lot of supplements. Have you started any of them since Dec 2023 or changed brands during that time?

 

My heart goes put to you. 

Edited by FindRest

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment

Hi FindRest -

 

Thank you so much for responding to my post.  I agree that one wouldn't expect such drastic withdrawals from such a low-dose, short exposure to baclofen.  The only explanation I can come up with is that my nervous system is already hypersensitized from multiple too-fast tapers off a series of three antidepressants over 20 years, plus my ongoing safe taper off venlafaxine, PLUS having ME/CFS, which seems to make patients hypersensitive to some medications.  UK guidelines for ME/CFS warn that any medications affecting the brain should be avoided, which is why I told the baclofen-prescriber not to give me anything that caused physical dependence.  It drives me insane that he did it anyway without explaining how it worked, and that I trusted him.

 

The symptoms that led me to stop baclofen were relatively mild - I had to pee every half hour or so for several hours after taking the dose, mild anxiety, and queasiness.  The peeing made it hard to sleep.  The next day after stopping my dose, I had severe withdrawal symptoms (which I recognized from my previous withdrawal experiences), as listed in your post.  The increase in severity was dramatic - I went from being moderately active and at a good to moderate level of ME/CFS to being flat on my back 95% of the time and unable to stand or walk for more than 5 minutes, if that much.  I lost the ability to care for myself and my husband, bless his heart, has been fixing my food and doing almost everything for me.  I couldn't even shower or wash my hair without terrible exhaustion.  I immediately reinstated to 5 mg of baclofen as recommended in the drug handout.

 

That didn't help very much, and I had some advice from someone familiar with tapering to reinstate up to 7.5 mg.  Like you, he didn't think it was expected to have such a hard time after only a few days of baclofen.  I expected to start stablizing at 7.5, and in fact had a slight improvement with 2-3 better days a week - less WD symptoms and slight increase in energy.  This lasted until around March 10, when I started having insomnia, which I thought was another withdrawal symptom.  After this my condition went downhill with an increase in all my previous WD symptoms.  To my body, it feels like this is an worse cycle of withdrawal and is what leads me to ask about the risk of trying to reinstate slowly at this point.

 

I'm 74 years old and long-term bed rest is not good for older people.  I've lost 5 lbs, probably mostly muscle, which doesn't help anything.  With ME/CFS, I had only limited ability to exercise without bringing on post-exertional malaise, so recovery will be difficult - another motivator to try to stabilize as quickly as possible.

 

Supplements - most I was taking before with no bad effects.  I've added a few (amino acids and choline) in the hopes of boosting my body's energy. Since January I've experimented with stopping some of them to see if they were causing/worsening my WD symptoms, but don't think they are.

 

When I take my baclofen dose, I feel better temporarily.  I also feel better when I take my venlafaxine dose.  My non-medical assessment is that since both drugs work on dopamine receptors, I get more dopamine when I take them and thus feel better.  I have no idea if this is valid, but it does make me think that if I can successfully reinstate enough baclofen to let me stabilize, that would allow me to get stronger and then taper off correctly.  However, especially with my hypersensitivity, this is something I feel I need as much information about as possible before I try it.  

 

Sorry to be so long-winded but this has overtaken my whole life.  I hope I answered your questions, and thanks again for getting in touch with me.  I'm very interested in your thoughts.

 

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

Error - for some reason I keep saying my current dose is 7.75 mg.  It's not - it's 7.5 mg.  Blame it on the brain fog!  Just wanted to let everyone know.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor
Posted (edited)
1 hour ago, Jardinista said:

  I have no idea if this is valid, but it does make me think that if I can successfully reinstate enough baclofen to let me stabilize, that would allow me to get stronger and then taper off correctly.  However, especially with my hypersensitivity, this is something I feel I need as much information about as possible before I try it.  


I am also very hypersensitive to any medication and any change in dose. My concern with increasing Baclofen is that it may give you a paradoxical reaction, as is common in people like us who are hypersensitive. About the only thing I know about Baclofen is that I have a friend who has been on it for years for back pain and cannot seem to get off of it. I’ll be interested to see what the moderators recommend. If you do go up in dose, you probably already know to updose in very small baby steps. That way, if a small step causes you more problems then you know that was a bad idea before trying 10mg all in one shot.

 

Like Effexor WD, I think the key is to not make any drastic moves up or down.
 

One thing regarding your supplements: after my CNS became totally destabilized, I could not take ANY supplements. For over a year, I tried to take Magnesium glycinate and it created much anxiety and some of the other symptoms you mention on your list. Even tiny, tiny doses. Others have had the same reaction. Eventually, I started to open up a capsule and put just a tiny bit in applesauce. I worked up to a whole capsule over a couple of years time. Same with B12. I’m on the low end of that so need to supplement. But, like many others here, it gives me a big increase in withdrawal symptoms. I had to get a liquid form and can only take 4 drops (instead of a whole dropper full) every week or so. Vitamin D3 can cause an increase in WD symptoms as well. Guess what I am getting at is that you started these in February. They could very well be increasing your problems. Something to think about.

Edited by FindRest

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment
  • Mentor
Posted (edited)
20 hours ago, Jardinista said:

Supplements:

 

·        Mitocore for ME/CFS - 1 dose 1xday                                     April 2023 - January 2024

·        Vit D/K - 5000 IU 1xday                                                          January 2024 – March 21 (present)

·        Shen ling bai zhu wan 1 dose 2xday                                     February 2024 – March 31 (Present)

·        Te Xiao zao ren an mian wan 1 dose 2xday                          February 2024 – March 31 (Present)

·        Parasym plus 1 pill 1xday                                                       April 2023 – March 31 (present)

·        Mitopure 500 mg 1 pill 1xday.                                                March 2023-March 31, 2024 (present0

·        AlphaGPC 300 mg 1xday                                                       February 2024 – March 31 (Present)

·        Magnesium glycinate – 120 mg 1xday                                   February 2024 – March 31 (Present)

·        Best-rest formula 1-2 capsules 1xnight                                  March 20, 2024 -  March 31 (present)

·        Amino Acids Crystals free-form – ¼ tsp                                 November 2022-March 2024

·        CoQ10 100 mg 1 pill 1-2xweek                                              March 15, 2024 – March 31 (present)

·        Nordic naturals omega 3 670? Mg 1 pill 1xweek                   March 15, 2024 – March 31 (present)

·        Vit B12 1.25 mg                                                                      February 2024 – March 31 (Present)                

·        Chinese medicine herbal prescription for chronic fatigue      April 2023 – March 31 (present)    

·        Berberine Complex 2 capsules 1xday                                    January 2024 – March31, 2024 (Present)


Take a look at the above supplements in red. You started taking all of them since you stopped/reinstated Baclofen in January. That is a  lot! We recommend only starting one new one at a time because if something goes south, it’s easy to know the culprit. You started 10 supplements in 2 months time. I would not be surprised at all if one or more of these is what’s causing you problems. One or more of them could be competing with Effexor for liver metabolism, which could explain the increase in WDs. Or, they could be causing problems of their own. I think I’d begin by doing research on these to see what liver enzyme they use (Effexor uses mainly cyp2d6) and if any of them affect serotonin, dopamine, or norepinephrine.

 

UPDATE: I did a check of Berberine which you started in January. 80% of it is metabolized by liver enzyme CYP2D6. The report said one main reason doctors don’t recommend it is because it interferes with too many prescription drugs competing for the same liver enzyme.

Edited by FindRest

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment

It's so helpful to hear from someone with similar issues (atlhough I sincerely wish you didn't have them too) - and my heart goes out to you too, being a fellow AD and Effexor sufferer. 

 

Being so hypersensitive makes it difficult to know what to do.  I really appreciate the information about your experiences with supplements.  I've been trying to keep up with supplements that have helped my ME/CFS as a way to try to up my strength, but the Mitocore prescribed for that has high dosages, especially of B12, and bears looking into.  Some of the listed supplements were to substitute for the Mitocore which I stopped for a month or so.  Oh, just got your second message - I will follow your advice and look more carefully at the supplements in red.  The vitamin D I've been taking for a couple of years, so hopefully it's ok.  I don't get outside at all and worry about Vit D deficiency.  You're right - it's an awful lot of supplements.  A sign of my desperation.

 

I'm not familiar with researching how supplements affect liver enzymes but will start checking it out.  So frustrating to take what should be good for us and have it cause more problems.  Very thankful to you for pointing this out as a possible solution to at least some of my problems.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor
Posted (edited)
32 minutes ago, FindRest said:

UPDATE: I did a check of Berberine which you started in January. 80% of it is metabolized by liver enzyme CYP2D6. The report said one main reason doctors don’t recommend it is because it interferes with too many prescription drugs competing for the same liver enzyme.


While you were typing, I added the above update to my previous message. To find the information, I did a couple of Google searches. I’ve included 3 sample searches below:
 

1.  Berberine cyp2d6

2.  Berberine serotonin dopamine norepinephrine 

3.  Berberine liver metabolized

 

On each of these, I just scanned the resulting list and scrolled down until I found a reputable research paper or site.

Edited by FindRest

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment

Thanks for the tips.  I definitely see the value of checking out the various supplements, as many have interactions/physical effects I was not aware of.  I usually check out each supplement but look at more generalized risk/benefits  - not necessarily enough information.  I have cut out some of the supplements already and will probably cut out everything and slowly add the ones that don't interfere with liver metabolism or neurotransmitters in one at a time to see if my symptoms are affected.  

 

When you find results re liver enzymes and metabolism and re serotonin, norepinephrine, and dopamine, how do you determine if there is a harmful component?  I can see if berberine can affect the metabolism of some prescription drugs that it makes sense to be careful with it, but am not sure how I should interpret the information I come up with in general.  For example, in checking GABA, it doesn't seem to be metabolized in the liver.  I know it has an affect on dopamine and norepinephrine, so is of concern in that aspect, but if I were only looking at liver metabolism, would the fact that it's not metabolized in the liver make it less concerning ? 

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor

I personally try to steer clear of anything that affects the neurotransmitters serotonin, dopamine, and epinephrine. We are already extra sensitive to even minor changes of these due to our Effexor withdrawals. I think this is basically what’s recommended here in SA as well. 


Yes, when looking at metabolism I’m less concerned about drug interactions if it isn’t metabolized by the liver. This is because most of the ones I’m on are metabolized there. This isn’t all inclusive, however, as it could still interact with those medications metabolized elsewhere. Not sure I’m explaining this very well. Regardless, even if metabolization isn’t an issue, I still will stay away from those affecting the above neurotransmitters.

 

I have to be extra careful with GABA because I’m also tapering Ambien and clonazepam. Talk about polypharmacy. 🤦🏻‍♀️

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment

Thanks for the information - that will help me check out any supplements.  I've started cutting back on most everything I take.  I had less nausea today and hope that will keep up.  Still anxiety and crushing fatigue, though.  But I imagine it can take a while for my liver to clear out.  I will hope for improvement!

 

I'm so sorry you've been polydrugged like you have - what insanity that doctors keep throwing drugs at us as a knee-jerk reaction.  No one should have to go through the misery these drugs cause.  It's really appalling that doctors are so uninformed about the damage psychoactive drugs do to the CNS.

 

I'm so anxious to hear from a moderator and get more input on the pros and cons of trying to reinstate.  Although what you said made perfect sense, as you mentioned it would be nice to get a moderator's viewpoint.  Since you have much more experience with SA than I do, do you have any idea how long it might be?  Now that I've heard from you about possible bad effects from supplements, that gives me something positive to do, and hopefully will help me reduce some of the frightening symptoms I'm having - if I'm lucky it might help me stabilize and not have to fool around with reinstatement, which would be much better.  But I'd still like to hear from a moderator.  Do they always respond?  Not complaining at all, since I'm sure they are all really busy helping everyone and have to take the time needed to give careful responses - it would just help reduce some of my anxiety.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

"The first 2 posts of new members will be approved by moderators before being published. This is to make sure the initial posts of new members get responses from moderators. "

 

I've posted my background information and my questions seeking advice on tapering off baclofen and on the possibility of reinstatement.  Although I've gotten a moderator response with general guidelines for tapering, I haven't received a moderator response after posting my all my information.  Can a moderator please respond to my questions.  This is my first experience with Surviving Antidepressants and I'm in desperate need of help.  I've looked at the guidelines and think I am doing what I'm supposed to, but if I'm not, please tell me what I need to do to get a moderator to discuss my specific situation with me.

 

I am truly desperate and need help.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment
  • Administrator

Thanks @FindRest. I wasn't following the thread...thanks for alerting me.

 

 

@Jardinista - I'll take a look after work and respond as best I can.

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment
  • Administrator

Your posts contain a lot of information, @Jardinista. I'll respond in several separate posts. 

 

This post is to help you add your drug signature. 

 

Adding your drug signature is crucial for the Moderators to understand your situation better. It's placed where you've inserted the picture of the cat/fox face (not sure which of these two). It will appear at the bottom of each of your posts, so Moderators don't need to search through everything looking for what they need.

 

This link should go directly to your own signature. Account Settings – Create or Edit a signature

 

Putting a SHORT version of your recent history of reducing or discontinuing drugs in your signature helps people understand your context when they read your posts.

 

FOR READABILITY, SHORT LINES ARE BEST.

  • A list is easier to understand than one or multiple paragraphs
  • Include ALL drugs, doses, and dates (starting and stopping)
  • Any drugs prior to 24 months ago can just be listed with start and stop years
  • Use actual dates or approximate dates (e.g. mid-June 2018) rather than relative time frames (e.g. 3 months ago)
  • Spell out months (e.g. "January" or "Jan" as 9/1/2016 can be interpreted as 9 Jan 2016 or 1 Sept 2016)
  • Please leave out symptoms and diagnoses

Example:

2001–2002 paroxetine 
2003  citalopram 
2004  paroxetine
2008  paroxetine slow taper down to 2016 Aug off paroxetine
2016  citalopram May 20mg  Oct slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg

 

...another post to follow...

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment
  • Administrator

You're taking quite a few supplements. We don't suggest many supplements, but two that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. Add one at a time and start with a low dose to see how it affects you. 


Magnesium

 

Omega-3 fatty acids (fish oil)

 

Unfortunately, I'm unable to comment on the other supplements you are taking. 

 

...another post to follow...

 

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment
  • Administrator
On 4/7/2024 at 2:59 AM, Jardinista said:

Baclofen 10mg

 

I'm not familiar with this drug, so can't comment on it.

 

I will ask the small team of volunteers offline for their input, and they will post here if they can help.

 

On 4/7/2024 at 3:11 AM, Jardinista said:

Withdrawal symptoms as of April 6, 2024:

·        90-95% Bedridden

·        Queasiness, nauseous feeling

·        Anxiety

·        Extreme fatigue, muscle weakness, inability to be upright over 5 minutes without distress

·        Brain fog

·        Hot flashes

·        Chills

·        Diarrhea, loose stools

·        Mild anorexia

·        Tremors in hands

·        Depression and suicidal ideation

·        Insomnia

·        Increased noise sensitivity

 

These are all typical WD symptoms. Have a read of this comprehensive list: Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

WD symptoms settle with time and patience.

 

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment
  • Administrator

Have you changed anything with your Venlafaxine? 

 

Have you changed the manufacturer at all?

 

Do you drink alcohol?

 

Improvement/recovery tends to follow a patten: Windows and waves pattern of stabilization

 

On 4/7/2024 at 8:08 AM, Jardinista said:

Insomnia

 

 

Many of us benefit from Melatonin for sleep

 

@Jardinista, I'll ask the small team to take a look to see if they can help you. They will want to see your drug signature before they feel comfortable commenting, so please action this ASAP.

 

I'm sorry I can't be of more help at this time.

 

Emonda

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment

Hi Edmonda -

 

Thank you for your response.  I worked up my drug signature and posted it, although as an attachment which I hope is ok - wouldn't let me type it in. I'm brainfogged so worry about doing things right. I completely understand if you can't help me, since baclofen is not a typical drug SA addresses and my history is complicated.  I appreciate all the information you provided and hope the small team will be able to help me understand my best options.  

****************

Have you changed anything with your Venlafaxine? No - holding at 8 mg for last two years. 

 

Have you changed the manufacturer at all?  Have not changed baclofen manufacturer or venlafaxine manufacturer.

 

Do you drink alcohol? No

 

Improvement/recovery tends to follow a patten: Windows and waves pattern of stabilization  I'm familiar with windows and waves from venlafaxine tapering, but have never had such overwhelmingly severe WD's to the point of not being able to care for myself - thus my desperation and interest in getting enough information to decide whether or not I can or should reinstate.

*************

 

Thanks again.

 

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Moderator

@Jardinista

 

I would love to know a little bit more about how you've been tapering venlafaxine.

 

What has been your % taper/month for the venlafaxine?

On 4/6/2024 at 4:08 PM, Jardinista said:

Baclofen 10mg

            1xday December 28, 2023 – present

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday. 

            March 31 (present) WD symptoms persisting

Are you certain the symptoms you developed can be attributed to stopping the baclofen? 

 

It would be very helpful if you could put your drug information in your signature. @Emonda provided some information on how to do this in a previous post. I am not comfortable opening an outside link.

2003-2009 on and off various SSRI's for short periods

2010-2011 Ativan

2013-2021 ativan 1-1.5mg 10-12x/month, daily starting Oct 21 to help with buspar WD

2016 - Effexor 75mg, short-term

2021 Mar -Jun Buspar ADR at high dose, tapered 3 months

Oct 22/21 - Direct switch ativan to clonazepam (don't do this)

Tapered clonaz Oct/21 - Apr/23  - 0mg!

 

"Believe that your tragedies, your losses, your sorrows, your hurt, happened for you, not to you. And I bless the thing that broke you down and cracked you open, because the world needs you open" - Rebecca Campbell

 

*** Disclaimer: Please note, my suggestions/comments are based on my own personal experiences. Please consult a knowledgeable practitioner to discuss decisions regarding your medical care *** 

 

                                                             *** Please do not send me PM's ***

Link to comment

What has been your % taper/month for the venlafaxine?  I tapered by removing beads of slightly less than 1 mg each at 4-6 week intervals.  I had problems tapering by more than around 3-4% drops from the previous dose.  As I got lower, the percentage of each drop got bigger, since I couldn't taper less than the approx. 1 mg amount.  My last taper, from 10 beads to 9 beads, was greater than a 10% drop and I had much more pronounced WD symptoms - primarily serious diarrhea.  From Dec 2021 to Dec 2023 I paused to get stabilized and was planning to continue tapering with a compounded liquid made from the same brand.  I also have ME/CFS and developed nerve pain in my back,.  The pain specialist I saw wanted to give me pregabalin, but I told him I was tapering off an AD and absolutely could not take any medication that causes physical dependence.  But he prescribed baclofen anyway, and I was foolish enough to think he listened to me so didn't check it out before taking it.

On 4/6/2024 at 6:08 PM, Jardinista said:

Baclofen 10mg

            1xday December 28, 2023 – present

            January 4, 2024 stopped taking

            January 5, 2024 resumed baclofen at 5 mg 1xday   

            January 8, 2024 Upped dosage to 7.75mg 1xday.  (Note 4/10/24 7.76 is incorrect, should be 7.5 mg)

            March 31 (present) WD symptoms persisting

Are you certain the symptoms you developed can be attributed to stopping the baclofen?  It hardly seems possible that I could react so extremely after only 8 days, but nothing else changed that could have caused it, to my knowledge.  I'm familiar with WD sx from my experience with ADs, so I'm pretty sure that's what happened.   Perhaps because of my age, my long-term usage with multiple too-fast tapers resulting in 3 bouts of withdrawals, and having ME/CFS which seems to cause additional hypersensitivity to medications can account for it.  The immediate and overwhelming reaction to stopping baclofen while not making any other changes to my life, my supplements, or other medications all make it point to stopping baclofen as the problem, made worse by my AD history and my ME/CFS.  I can't be 100% certain but because of lack of information in the medical establishment about withdrawals on top of lack of understanding of ME/CFS, sadly I don't see how anyone can be 100% certain. 

 

I finally figured out how to get my drug signature up.

 

Thank you so much for responding.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor
8 hours ago, Jardinista said:

The immediate and overwhelming reaction to stopping baclofen while not making any other changes to my life, my supplements, or other medications all make it point to stopping baclofen as the problem,



But according to your previous post, you did start all of these supplements in red around that time or shortly after:

 

On 4/7/2024 at 1:19 PM, FindRest said:
  On 4/6/2024 at 5:08 PM, Jardinista said:

Supplements:

 

·        Mitocore for ME/CFS - 1 dose 1xday                                     April 2023 - January 2024

·        Vit D/K - 5000 IU 1xday                                                          January 2024 – March 21 (present)

·        Shen ling bai zhu wan 1 dose 2xday                                     February 2024 – March 31 (Present)

·        Te Xiao zao ren an mian wan 1 dose 2xday                          February 2024 – March 31 (Present)

·        Parasym plus 1 pill 1xday                                                       April 2023 – March 31 (present)

·        Mitopure 500 mg 1 pill 1xday.                                                March 2023-March 31, 2024 (present0

·        AlphaGPC 300 mg 1xday                                                       February 2024 – March 31 (Present)

·        Magnesium glycinate – 120 mg 1xday                                   February 2024 – March 31 (Present)

·        Best-rest formula 1-2 capsules 1xnight                                  March 20, 2024 -  March 31 (present)

·        Amino Acids Crystals free-form – ¼ tsp                                 November 2022-March 2024

·        CoQ10 100 mg 1 pill 1-2xweek                                              March 15, 2024 – March 31 (present)

·        Nordic naturals omega 3 670? Mg 1 pill 1xweek                   March 15, 2024 – March 31 (present)

·        Vit B12 1.25 mg                                                                      February 2024 – March 31 (Present)                

·        Chinese medicine herbal prescription for chronic fatigue      April 2023 – March 31 (present)    

·        Berberine Complex 2 capsules 1xday                                    January 2024 – March31, 2024 (Present)


 

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment

I'm sorry if my information is misleading.  A few of the supplements listed were ones I had taken for at least a year before and I just lessened the dosage.  However, I had not made any of these changes before I stopped taking baclofen and immediately experienced severe withdrawal symptoms - changes and additions were made in response to onset of severe withdrawal symptoms.  Apologize for not being clear and can only say that my brain hasn't working very well.  I would have put in explanations but the instructions for listing meds/supplements didn't seem to allow for that.  I hope the info below makes it more clear.  Thanks for your patience!

 

Mitocore for ME/CFS - 1 dose 1xday                                     April 2023 - January 2024                                   Changes made after baclofen WD sx started

·        Vit D/K - 5000 IU 1xday                                                          January 2024 – March 21 (present)            Stopped taking after increased anxiety with WD

·        Shen ling bai zhu wan 1 dose 2xday                                     February 2024 – March 31 (Present)           Started to help poor sleep from WD

·        Te Xiao zao ren an mian wan 1 dose 2xday                          February 2024 – March 31 (Present)           Started to help diarhhea from WD 

·        Parasym plus 1 pill 1xday                                                       April 2023 – March 31 (present)                    Started to support vagus nerve to reduce palpitations, breathlessness WD sx

·        Mitopure 500 mg 1 pill 1xday.                                                March 2023-March 31, 2024 (present0        Started to support mitochondria in place of Mitocore

·        AlphaGPC 300 mg 1xday                                                       February 2024 – March 31 (Present)              Started to try to help fatigue WD sx

·        Magnesium glycinate – 120 mg 1xday                                   February 2024 – March 31 (Present)              Replacing magnesium from Mitocore

·        Best-rest formula 1-2 capsules 1xnight                                  March 20, 2024 -  March 31 (present)          Started to help insomnia

·        Amino Acids Crystals free-form – ¼ tsp                                 November 2022-March 2024                        Doctor recommended to support mito fx

·        CoQ10 100 mg 1 pill 1-2xweek                                              March 15, 2024 – March 31 (present)              Doctor recommended to support mito fx

·        Nordic naturals omega 3 670? Mg 1 pill 1xweek                   March 15, 2024 – March 31 (present)            Started because recommended for WD sx

·        Vit B12 1.25 mg                                                                      February 2024 – March 31 (Present)               Cut out Mitocore with high B12 dose, reduced B12 in case it was contributing to anxiety               

·        Chinese medicine herbal prescription for chronic fatigue      April 2023 – March 31 (present)    

·        Berberine Complex 2 capsules 1xday                                    January 2024 – March31, 2024 (Present)     Long term use at higher dose - cut dose in half

 

 

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

Also, thank you for looking at my information so carefully - I really appreciate your help. I seem to be having a hard time following instructions.  I will try to resolve any discrepancies that may come up and apologize in advance for anything that I haven't explained clearly enough.  I really thought I was carefully following instructions, but may have misinterpreted them.  Also, I thought your comments on my supplements were entirely valid and really helpful even with the few discrepancies from my list so didn't go into any of that before.  I have felt less nausea since I backed off on my supplements per your comments.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment
  • Mentor

You have done very well giving us very detailed information. There may be things we need to clarify or perhaps ask you for bits of more information but that doesn’t take away from all of the hard work you have done in your posts. 

 

I’m glad the nausea is improving! 

 

I’m still thinking one or more of your supplements can be causing problems. I see you take one to help with fatigue, then take another to help with insomnia. Do you see where one may be causing the need for the other? But mainly, I’m concerned about the number you are taking and the battle that must be going on in your kidneys and liver, especially at our ages. I’m a bit younger than you and can already tell that my medications and supplements are getting too much for my CNS, liver and kidneys to do a good job. Then there’s the possibility of them interacting with one another. Not much info is out there on the Chinese herb mixtures (or whatever they are) you are taking. If I’m reading right, I see you’ve stopped the Mitocore. Is that correct? It had 29 different vitamins, minerals, and acids in it, and yes, over 10,000% of the RDA of B12.

 

I do think you had a bad reaction to the Baclofen. But I am thinking that perhaps all of the supplements are making their own problems. 
 

If the Baclofen isn’t helping your pain any, I think you are wise to get off of it sooner than later. I definitely wouldn’t stop it ct, but I don’t have any experience with how to properly do it. I searched for “Baclofen” on a popular benzo tapering site and the term comes up often. They don’t seem to have a forum just for that drug, but others there are tapering it in addition to their benzo. From the few posts I’ve read, it seems that it can be tapered quicker than AD’s or benzos. BUT, I cannot recommend anything because I just don’t know. Plus, your body is extra sensitive from Effexor WDs. Wish I had some answers for you.
 

1988-1996  Various AD’s, all classifications.  1996-2019  Effexor XR 37.5mg to 150mg. Jan 2017 onward, 37.5 mg.

2019  Apr 11 - July 24: Trials of Latuda then Rexulti. CT'd off per dr.  Jul 24: CT Effexor (per dr)  Sep 9-19: Viibryd, CT (per dr).  Sep 23-27: Trintellix. CT (per dr).  Sep 28 - Oct 24:  Prozac 10mg.  Oct 24:  Stop Prozac, began Pristiq 25mg->50->25mg.

2020  Feb 1: CT Pristiq. Feb 1: Reinstated Effexor XR (10 large beads) gradually increasing to 22 beads (15L+7M) or 9.072mgai on Mar, 2020.

2021  Started Jan w 21 beads (13L+8M) or 8.47mgai ended Dec: 17 beads (7L+9M+1S) or 6.19mgai. Severe COVID + TIA.

2022  Ended yr w 14 beads (3L+5M+5S+1XS) or 4.5mgai. Major jaw injury during year + family tragedy.

2023  Jan: 13 beads (2L+5M+5S+1XS) or 4.2mgai; Feb: 12 beads (2L+4M+5S+1XS) or 3.9mgai; Mar: 11 beads (2L+4M+4S+1XS) or 3.6mgai, Apr: 10 beads (2L+3M+4S+1XS) or 3.3mgai; Jun: 9 beads (2L+3M+3S+1XS) or 3mgai,

 

Current: July, 2023: Effexor XR -  9 beads (2L+3M+3S+1XS) or 2.7 mgai

Other current meds: Ambien 10mg 3.935mg , clonazepam .125mg .107mg, omeprazoleSynthroid, Premarin.  Supplements: D3, C, probiotic, K2-MK7, Mg Glycinate

Link to comment
  • Administrator

I'm with FindRest

 

6 minutes ago, FindRest said:

I am thinking that perhaps all of the supplements are making their own problems. 

 

6 minutes ago, FindRest said:

If the Baclofen isn’t helping your pain any, I think you are wise to get off of it sooner than later. I definitely wouldn’t stop it ct, but I don’t have any experience with how to properly do it.

 

Same comment. I don't have any knowledge of this drug, so I can't be more helpful about how to stop it.

 

I'm sorry you are in this position.

 

Emonda

Please don't send me PMs. I am not a doctor. My comments are based on my personal experience with ADs and tapering. Consult your doctor about your own medical decisions.

Start of taper: Jan ’22 Vortioxetine 15mg, 

End year 1: 4.5mg, 

End year 2: 2.38mg, 

Year 3: 8 Feb 2.19mg, 21 Mar 1.99mg, 2 May 1.83mg, 13 Jun 1.69mg, 25 Jul 1.50mg, 14 Aug 1.46mg, 3 Sep 1.43mg, 10 Sep 1.40mg, 17 Sep 1.37mg, 16 Oct 1.34mg, 23 Oct 1.32mg, 30 Oct 1.29mg

Link to comment

Hi Edmonda -

 

I appreciate your comments and sympathy and understand that you can't really offer more advice. You mentioned that you forwarded my info to the small team.  Will I be hearing from them?  I've gotten responses from FindRest and LotusRising which have been helpful (particularly from FindRest, who has put in a lot of effort to help me), but so far have not had a moderator address my primary question asking for information to help me figure out the pros and cons of attempting a careful reinstatement of baclofen to the point where I can stabilize, if possible.  I understand that it will be my decision alone.  I understand that everyone reacts differently and that it is impossible for moderators to give me a definitive answer.  I'm just seeking information based on learned experience - if not specifically with baclofen due to not having direct experience, then a discussion of what might be anticipated based on my history.  To my best understanding, baclofen affects dopamine receptors in the brain and is a psychotropic drug, so comparison to other psychoactive drugs may be helpful.  Is there any moderator who can help me with this?  Since it's better to reinstate as soon as possible, the longer I wait for information the more risky it may become.  Because of my age (almost 75), being bedridden itself is a health hazard and the muscle loss I'm experiencing is making the fatigue and weakness worse, putting me in a downward spiral.  I fear that just trying to ride out the severe withdrawals, which could conceivably take many months, is not a good option for me. If you can possibly encourage action on my behalf I would greatly appreciate it. 

 

Thank you.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

Hi FindRest -

 

Thank you for your kind response.  Your information about supplements has been helpful.  Unfortunately my most debilitating problem - crushing fatigue that keeps me in bed - has not alleviated in the least.  I think your assessment of the toll all the supplements are taking on my body is most likely accurate and may have been a part of my failure to stabilize from my first taper off baclofen.  But I am afraid to taper off any more since I've always heard that you shouldn't continue tapering until you're not having WD symptoms.  Being still bedridden is likely causing muscle loss and thus making the fatigue worse.  I've already got mitochondrial dysfunction and loosing muscle just leaves me with fewer mitochondria to provide energy.  That's what makes it seem like reinstating enough baclofen to allow stabilization, if that's possible, would hopefully allow me to regain some strength and get back to a baseline where I could taper off much more carefully.  Do you think it's likely I'll ever get the information I'm asking for from any of the moderators?  The longer I wait the fewer options I'll have.  I don't expect anyone to be able to tell me "if you do this, you'll be fine" because there is no blanket solution - I would just like to gather enough information to assess it myself and make my own decision.  I can't tell you how much I appreciate your help and good advice based on your own hard experiences - I was just hoping for at least one more viewpoint to give me a broader information base to work from.

1991-1996 Prozac – cold turkey withdrawal; 1997-2004 Zoloft – 2 week dr. taper; 2004-2010  Celexa – 2 week dr. taper

2010 Venlafaxine 75 mg  2018 – 2021 75mg>8 mg harm reduction taper 2024 paused @ 8 mg was stabilized when prescribed baclofen

Jan 1, 2024 Baclofen 10mg

Jan 8 cold turkey (no doctor warning)

Jan 8, 2024 5 mg

Jan 18, 2024 7.5 mg due to WD, bedridden

Apr 10, 2024/ongoing WD symptoms still severe, bedridden

🦊

SA profile signature 4-10-24.docx

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

Terms of Use Privacy Policy