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grandmaD: turtle here


grandmaD

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Hey Grandma hope things have been much better for you lately!!

Apr 2018: 10 mg Amitriptyline (for headaches & insomnia).

Jul - Aug 2018: Fast taper to 5 mg and then 2.5 mg (too fast, hellish withdrawal at 2.5 mg).

Sept 2018: Reinstated 10 mg (many symptoms improved).

Oct 2018 - Apr 2019: Updosed & stabilized on 11 mg (2 waves at 3 and 5 months post-withdrawal).

Apr 2019 - Apr 2020: Tapered 0.5-0.25 mg per month using compounded pills: 11 mg —> 6 mg. (2 waves at 12 and 16 months post-withdrawal.)

Apr 2020 - present: Switched to a liquid taper at rate of 0.1 mg per month. Currently: 3.8 mg. No more waves. 

Supplements: Omega-3 fish oil, Vit B12, coenzyme Q10, Hawthorn extract (for tachycardia)

Tools for insomnia/waves (as needed): Epsom salt foot soaks, 0.5 mg Melatonin, quality time, waves WILL PASS.

Lifestyle: Eat real foods, mostly plants; sunlight & walking; symptom tracking on adapted Glenmullen chart.

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  • Administrator

@grandmaD, how are you?

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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Firstly, let me say how touched I am Alto to receive a post from you after all this time.  You are an amazing woman, to continue reaching out to others and persevere with us all and I am very grateful for your thoughtfulness.

 

In short, in answer to your question, my life is a nightmare.  I am just doing the next thing I need to do.

 

I was sent for emergency pacemaker surgery in August 2020 - and as it turned out didn't need the pacemaker - nothing wrong with my heart.

Ever since, I've had constant head pressure along with a second headache that is on the right side and painful, and there pretty much every day also.

This makes life distressing and debilitating.

 

Of course, much has happened since I lost the plot in July 2018 when my beautiful husband passed away, the love of my life and my carer thru w/d.  He was fit, strong and healthy and this was a huge shock and very traumatic 9 months until he passed in April 2019.

 

Previous to this, in July 2018 after 11 years of w/d (last 7 of which were extremely slow taper of 2.5% every 8 weeks) symptoms began to improve overall and I felt the best I had, since beginning tapering. 

 

I have gone downhill ever since .. very hard to maintain hope, etc.

 

I will try and write more about the other things that snowballed after my husband's death .. one thing on top of another... so difficult to cope.

1995-2007      20mg Aropax/Paxil for pain.  Years of up and down doses

2008                Endep, Lexapro and then Esipram (hell!) CT (oh dear!)

2009                20mg Aropax.  Tried skipping doses for a year (more hell!)

                        2010                10mg.  10% taper.  Lasted 4 months. Crashed again

2011                5% taper. 9mg-7mg (hell got even worse!)

2012                2.5% taper.  6.6mg – 5.6mg (worser still & unbearable)

2013                5% taper.  Big mistake.  5.5mg – 4.6mg  (even worserer)

2014                2.5% taper.  4.9mg – 4.5mg;    2015 2.5% taper 4.4 - 4.0mg

2016                2.5% taper.  3.9mg  Feb 3.8   Mar 3.7  May 3.6   Jul 3.5

2017                2.5% taper.  Jan 3.4;   Mar 3.35;  Apr 3.3; Oct 3; Dec 2.9;

2018                2.5% taper. Jan 2.8; Mar 2.7; Mar: 2.75; Jun 2.7; Aug 2.6; Oct 2.5; Nov 2.4; Dec 2.3

2019                Jan 2.2; Feb 2.1;

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I am so very sorry for your loss, grandmaD. Sending much love, WR. 💖

-1/06 - 3/07 Cymbalta. Fast taper; withdrawal symptoms after 4 mos (didn't realize was WD)

-10/07: 100 mg Zoloft; 1 mg Klonopin - tapered off Klonopin after 4 mos. Several unsuccessful slow tapers of Zoloft; went up and down in dose a lot

-Spring 2013 back on 1 mg Klonopin to counter WD symptoms; switched over 5-6 mos from Zoloft to 35 mg citalopram
-Two attempts at slow tapering citalopram, always increased dose due to WD; also increased Klonopin to 1.25 mg in 2014, then to 1.5 mg in 2015

-8/17-9/17: After holding one year at 20 mg, feeling withdrawal symptoms due to stress - slowly increased to 25 mg. No change in symptoms after 6 months (? tolerance ?)  - decided to start citalopram taper February 2018 (still on Klonopin 1.5 mg).

Supplements: fish oil; magnesium; vitamin D3; curcumin

Citalopram taper:  2/2018 - 12/2019: 25 mg - 11.03 mg I 2020: 10.89 mg - 7.9 mg I 2021: 7.8 mg - 5.26 mg I 2022: 5.2 mg - 3.36 mg 

2023: 1/9/23: 3.3 mg; 1/16/23: 3.2 mg; 1/23/23: 3.16 mg; 1/30/23: 3.1 mg; 2/13/23: 3.0 mg; 2/20/23: 2.98 mg; 2/27/23: 2.9 mg; 3/6/23: 2.86 mg; 3/20/23: 2.8 mg; 3/27/23: 2.75 mg

 

 

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Hello @grandmaD, I have read through your thread. You have been through so much, and you are so strong. I am so sorry for your loss, and all the things piling up that shadow your progress.

I do not have any advice, but having been very touched by your story- from the bottom of my heart and from my little corner of southern France, I send you all the strength I can and hope that the tides shift soon so you experience much needed relief. Take care of you ♥

Better days are ahead. If you read this and are still struggling - hang in there. It'll be worth it. My success story: I recovered from Escitalopram withdrawal.

Aug 2017 - May 2018 -> Escitalopram 10 mg. 

Nov 2018 - Jan 2021 -> Escitalopram 10 mg. Feb 2021 - 5 mg.  Feb-March 2021 - 5 mg, one day out of two.

Since March 13th, 2021 -> Escitalopram 0 mg. Withdrawal appeared 1 week after last dose.

Profile image: Edward Robert Hughes' "Night"

 

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  • Mentor

@grandmaD I am so sorry to read about all these things you are going through.  What a terrible situation, on so many levels.  The loss of your husband must be devastating.

 

There really isn't much that words can do to improve the situation but please know that we are here should you feel that verbal support might be a comfort for you.

 

xoxo

Rachel

 

I am not a health professional in any way.  I do not give medical advice.   Discuss any decisions about your medical care with a professional medical practitioner.

 

NEW INFORMATION FOR GABAPENTIN TAPER

April 29, 2022 900 mg to 800 mg (11%), May 29, 2022 800 to 700 mg (12.5%), June 20, 2022 700 to 650mg (8%), July 20, 2022 650 to 575 (12%), August 20,  575 to 500 (13%),  Sept 20, 2020 500 to 475mg (5%) Nov 7, 2022 475 to 425 (11%), Nov 21, 2022 500mg

Medications and supplements: Gabapentin, Prednisone 4mg a day, Cortisol Inhaler daily,  Fish oil, vitamin D, Calcium

HISTORY FOR ZOLOFT TAPER

Feb. 2016 to June 2016  - Was on 150mg Zoloft.  Put on Gabapentin at 900mg a day in 2016 due to antidepressant withdrawal. 

Quit Zoloft (Sertraline) June  2016,  reinstated 50mg of Zoloft July 2016.  From July 2016  to October 2016 went from 50 mg down 2.3 mg. I up-dosed in November 2016 to 12.5 mg. Held there until January 2017 when I started a much slower taper.

STARTING SENSIBLE  ZOLOFT TAPERING USING GUIDELINES FROM THIS SITE

Dec. 10 2016  - switched to Liquid Zoloft (Sertraline) @ 12.5 mg.   Jan. 4, 2020 1.875 mg (6.3%). Jan. 25, 2020 1.75 mgFeb. 29, 2020 1.625mg (7.10%).  Apr. 4, 2020 1.5 mg.  May 9, 2020 1.375 mg.  June 6, 2020 1.25 mg. (9.10%).  July 4, 2020 1.125 mg. (10%).  August 15, 2020 1.0 mg.  Oct 24, 2020 .875 mg.  Nov. 28, 2020 .75mgJan 16, 2021 .685mg (8.7%).  Feb 13, 2021 .62mg. March 12, 2021 .56mg.  May 1, 2021 .375mg.  May 29, 2021 .25mg. June 26, 2021 .0125mg. July 25, 2021 .065mg. August 22, 2021 .048mg.  October 2, 2021 .043mg.  October 10, 2021 .038mg.  October 23, 2021 .035mg.  October 30, 2021 .032mg.  Nov. 13, 2021 .030 mg.  Dec 4, 2021 .0285 mg.  Dec 11, 2021 .0265 mg. Dec 18, 2021 .0246 mg. Dec 25, 2021 .023mg. Jan 1, 2022. 0 mg. OFF COMPLETELY

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  • Moderator

@grandmaD

 

I’m so sorry on the passing of your husband, and your heart/pacemaker issue.

 

You are in my thoughts and prayers.

 

Take care,

 Frogie xx

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day.

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

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Adding my 🙏 too @grandmaD

md

2002 Escitalopram 10 mg

2018 2.5 mg - stopped by Dr./Reinstated, up-dosed to 7.5 mg

04/19 Began BM slide @7.5 mg

CURRENT  0.7 mg 🌼

 

"If thou canst believe, all things are possible to him that believeth."

Mark 9:23

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  • Administrator

I am so sorry, grandmaD. 

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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  • Moderator Emeritus

Dear @grandmaD  I'm so very sorry to hear what you're going through.  

I hope you will continue to let us know how you are.

Best wishes to you💗💗💗

Arbor

Zoloft: 1995 - 2015

Prozac: 2015 - 2018 (tapered from 40mg x day on July 31 to 30mg on August 31 to 20mg on September 31 to 10mg October 31 to 0mg on  December 15, 2018

Gabapentin: 2016 to 2019  (tapered from 300mg x day to 150mg on August 31, 2019 to 75mg on September 15 to 50mg on September 31 to 25ishmg on October 15 to 0mg on December 1, 2019

Enalapril: 2010 - 2019

Lipitor: 2017 -2017

Metformin: 2000 - 2020

Liothyronine: 2007 - 2019

Levothyroxine: 2000 - 2022

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Thank you everyone for your support and kind and loving words.  It is very valuable, this community.  One day, I might be able to read your journals. ..

 

For now, I will just add present symptoms and then try and put together what other things have contributed to my present condition.

 

since pacemaker surgery:  Very bad head pressure 24/7 with throbbing and pulsing.  I blamed the pacemaker.  Specialist says has nothing to do with pacemaker.  Surgery was 11 months ago, so I would assume I have recovered from anaesthetic, painkillers, anti-biotics and anti-nausea drugs.  However, I do recall that after gall surgery, it took me 2 years to get back to where I was before that surgery.  Also, after gall surgery, I did not have head pressure headaches, nor throbbing and pulsing in the head.

 

Also frequent, often times constant right sided headache daily, from mild to very bad, on top of the pressure headache.

 

 

1995-2007      20mg Aropax/Paxil for pain.  Years of up and down doses

2008                Endep, Lexapro and then Esipram (hell!) CT (oh dear!)

2009                20mg Aropax.  Tried skipping doses for a year (more hell!)

                        2010                10mg.  10% taper.  Lasted 4 months. Crashed again

2011                5% taper. 9mg-7mg (hell got even worse!)

2012                2.5% taper.  6.6mg – 5.6mg (worser still & unbearable)

2013                5% taper.  Big mistake.  5.5mg – 4.6mg  (even worserer)

2014                2.5% taper.  4.9mg – 4.5mg;    2015 2.5% taper 4.4 - 4.0mg

2016                2.5% taper.  3.9mg  Feb 3.8   Mar 3.7  May 3.6   Jul 3.5

2017                2.5% taper.  Jan 3.4;   Mar 3.35;  Apr 3.3; Oct 3; Dec 2.9;

2018                2.5% taper. Jan 2.8; Mar 2.7; Mar: 2.75; Jun 2.7; Aug 2.6; Oct 2.5; Nov 2.4; Dec 2.3

2019                Jan 2.2; Feb 2.1;

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I am loathe to post, since I am in a bad way and have nothing good to say, but I hope that something I say may help others who are in the same situation. 

 

The fist thing would be NOT TO LET YOUR DOCTOR SEND YOU OFF FOR EMERGENCY SURGERY FOR A PACEMAKER, but to go to your heart specialist and get checked out or get a 2nd opinion.

 

It is my belief that the palpitations and faint headedness I was experiencing (which was only for 2 days) were related to grief.  I am sorry my doctor didn't think to send me for grief counselling instead, something I still have not had.

 

The reason for pacemaker was because of a 3 second pause at night.

1995-2007      20mg Aropax/Paxil for pain.  Years of up and down doses

2008                Endep, Lexapro and then Esipram (hell!) CT (oh dear!)

2009                20mg Aropax.  Tried skipping doses for a year (more hell!)

                        2010                10mg.  10% taper.  Lasted 4 months. Crashed again

2011                5% taper. 9mg-7mg (hell got even worse!)

2012                2.5% taper.  6.6mg – 5.6mg (worser still & unbearable)

2013                5% taper.  Big mistake.  5.5mg – 4.6mg  (even worserer)

2014                2.5% taper.  4.9mg – 4.5mg;    2015 2.5% taper 4.4 - 4.0mg

2016                2.5% taper.  3.9mg  Feb 3.8   Mar 3.7  May 3.6   Jul 3.5

2017                2.5% taper.  Jan 3.4;   Mar 3.35;  Apr 3.3; Oct 3; Dec 2.9;

2018                2.5% taper. Jan 2.8; Mar 2.7; Mar: 2.75; Jun 2.7; Aug 2.6; Oct 2.5; Nov 2.4; Dec 2.3

2019                Jan 2.2; Feb 2.1;

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I went to the specialist who "supposedly" put the pacemaker in (and discovered later it was another doctor who did it.)  I was never spoken to my any doctor, anaethestist, etc. before surgery, so my advice is, MAKE SURE YOU SPEAK TO A DOCTOR BEFORE ANY SURGERY.

 

When I saw my regular doctor about the constant palpitations which were making my heart race, causing breathlessness and dizzy, resulting in lying down on couch all day, with resting pulse still in high 90's and 100's, he said it was "normal" to have palpitations after a pacemaker.

 

I then went to the Specialist who "supposedly put the pacemaker in" and told him about the pressure head, pulsing and throbbing, he threw his arms up in the air, didn't want me to continue speaking and said "I know, I know ... we can fix that ... and threw me a script for Metropolol (a beta blocker).  he was not interested in the fact I am highly sensitive to drugs, but urged me to take it.  I did not take it.

 

I found a new doctor who sent me to my original heart specialist who

turned the pacemaker down to 1%.   He also re-set the pulse which was set at 90 to be 60.

 

However, this did not work because as a result of the top chamber being set to pace at 1%, it resulted in bottom chamber not synchronising with top chamber, making the PM pace in bottom chamber at 25%, causing palpitations again.

 

 

1995-2007      20mg Aropax/Paxil for pain.  Years of up and down doses

2008                Endep, Lexapro and then Esipram (hell!) CT (oh dear!)

2009                20mg Aropax.  Tried skipping doses for a year (more hell!)

                        2010                10mg.  10% taper.  Lasted 4 months. Crashed again

2011                5% taper. 9mg-7mg (hell got even worse!)

2012                2.5% taper.  6.6mg – 5.6mg (worser still & unbearable)

2013                5% taper.  Big mistake.  5.5mg – 4.6mg  (even worserer)

2014                2.5% taper.  4.9mg – 4.5mg;    2015 2.5% taper 4.4 - 4.0mg

2016                2.5% taper.  3.9mg  Feb 3.8   Mar 3.7  May 3.6   Jul 3.5

2017                2.5% taper.  Jan 3.4;   Mar 3.35;  Apr 3.3; Oct 3; Dec 2.9;

2018                2.5% taper. Jan 2.8; Mar 2.7; Mar: 2.75; Jun 2.7; Aug 2.6; Oct 2.5; Nov 2.4; Dec 2.3

2019                Jan 2.2; Feb 2.1;

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After 4 more trips to my Specialist, poor man, he was very reluctant to take me on, since, his first words were "you never needed a pacemaker in the first place."  A one off 3 second pause at night, can happen to anyone.  I was now a big problem for him, who never ordered the pacemaker and never would have.  He told me they put "pressure on them at the hospital to put pacemakers in, but he refuses, and stands up to them.  He gets people back to his clinic and tests them first.

 

He then suggested we turn it off, provided I had all the tests and they came back normal.  This was done and all was normal.  So he turned it off for 8 weeks.  Then it turned back on automatically ... and then back to him for it to be turned off yet again... and all this seemed to upset my system each time.

1995-2007      20mg Aropax/Paxil for pain.  Years of up and down doses

2008                Endep, Lexapro and then Esipram (hell!) CT (oh dear!)

2009                20mg Aropax.  Tried skipping doses for a year (more hell!)

                        2010                10mg.  10% taper.  Lasted 4 months. Crashed again

2011                5% taper. 9mg-7mg (hell got even worse!)

2012                2.5% taper.  6.6mg – 5.6mg (worser still & unbearable)

2013                5% taper.  Big mistake.  5.5mg – 4.6mg  (even worserer)

2014                2.5% taper.  4.9mg – 4.5mg;    2015 2.5% taper 4.4 - 4.0mg

2016                2.5% taper.  3.9mg  Feb 3.8   Mar 3.7  May 3.6   Jul 3.5

2017                2.5% taper.  Jan 3.4;   Mar 3.35;  Apr 3.3; Oct 3; Dec 2.9;

2018                2.5% taper. Jan 2.8; Mar 2.7; Mar: 2.75; Jun 2.7; Aug 2.6; Oct 2.5; Nov 2.4; Dec 2.3

2019                Jan 2.2; Feb 2.1;

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