Jump to content
SurvivingAntidepressants.org is temporarily closed to new registrations until 1 April ×

grandmaD: turtle here


grandmaD

Recommended Posts

  • Moderator Emeritus

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

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

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: 1.1 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, yoga; symptom tracking on adapted Glenmullen chart.

Link to comment
  • 1 year later...
  • Replies 761
  • Created
  • Last Reply

Top Posters In This Topic

  • grandmaD

    438

  • LexAnger

    78

  • Songbird

    40

  • ladybug

    34

Top Posters In This Topic

  • 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.

Link to comment

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;

Link to comment

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

-1/06 - 3/07 Cymbalta. Fast taper (essentially CT); 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 I 2023: 3.3 mg - 1.47 mg 2024: 1/5/24: 1.44 mg; 1/19/24: 1.40 mg; 1/26/24: 1.37 mg; 2/2/24: 1.34 mg; 2/9/24: 1.31 mg; 2/23/24: 1.28 mg; 3/1/24: 1.25 mg; 3/8/24: 1.22 mg; 3/15/24: 1.19 mg

 

 

Link to comment

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"

 

Link to comment
  • 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: Gabapentin, Prednisone 1.5mg a day, Cortisol Inhaler daily. 

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

Link to comment
  • 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. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper.

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.

Link to comment

Adding my 🙏 too @grandmaD

md

1997 Prozac ?mg

1991 Sertraline ?mg

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  0.36 mg 🌼

 

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

Mark 9:23

Link to comment
  • 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.

Link to comment
  • 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

Link to comment

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;

Link to comment

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;

Link to comment

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;

Link to comment

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;

Link to comment
  • 1 year later...

Hello again, almost 2 years later. . .

Is Alto still around I can talk to please???

 

I am looking for help now with Lamictal.  I found notes in my cupboard about starting very slowly, eg. .5mg and have done this for almost a week. 

 

 Alto, your notes said slowly titrate up to 5mg.  How slowly to you go up to 5mg and how often?

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;

Link to comment

2018

My taper was never good, but barely tolerable but in June 2018 noticed for the first ever, IMPROVEMENT.  I was able to attend an event for 1 hour, I actually enjoyed a bbq, I began talking to people, my appetite returned and I was HOPEFUL at long last that I could get my life back.  Then in July 2018 my dearly beloved, who was fit, strong and healthy and very much my carer, and the only reason I survived/coped was diagnosed with pancreatic cancer and I went downhill very fast.  Partly was my fault, thinking that I needed to get off this drug if Iwas going to get my health back and care for him, I began tapering faster.  No need to tell you guys what a bad decision this was.

 

2019

He passed away April 30th, 2019 and I was in deep grief, anguish, depression, anxiety, de-personalisation, you name it.

 

2020

Went to doctor with palpitations (which was NOT UNUSAL FOR ME in w/d) and very sorry I went to him.  He put me on a 24hour monitor which came back with a 3 second pause at night and sent me to emergency at hospital immediately for a pacemaker!

Deep in my heart, I felt it was more w/d and grief than anything and didn't want to go.  I didn't believe there was anything wrong with my heart, since I had vacuumed the whole house that morning and went home and mopped the floor, both which are very strenuous for me.  I told the doctor anaesthetic doesn't agree with me but he said it would be a local.  My daughter picked me up and took me to hospital.

I was kept in overnight and no cardiologist spoke to me, no anaethestist, no information, no nothing.  they took me to the

theatre where they said I would be given anaesthetic.  I told them I was meant to have a local, and they told me that the anaethestist was there so they may as well do a full anaesthetic, which they did!

 

 

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;

Link to comment

2020

From that time I was in a dreadful state with rapid pulse and palpitations, breathlessness and dizziness and feeling faint from the high pulse (often waking me up in the night at 125).

After a string of doctors - whose only advice was to put me on Metropolol, I finally saw my cardiologist who said "you don't give a person a pacemaker for a 3 second pause at night - anyone can have that happen." 

The pacemaker had been set to pace 97% of the time and pulse set at 90.  He adjusted both of these and the palpitations eased off dramatically.  

This is where I don't know what the cause of further symptoms is:  whether the pacemaker, the surgery doing damage or W/D combined with everything else, because right after surgery, symptoms I had not had before was a head that felt "full" like full of fluid or something and pulsing and throbbing that also went up my neck to base of skull and into head.  Also like my brain literally shaking.  This has been constant, daily, without any let up ever since.  Also it feels like brain is contracting and giddy thing is quite bad.  Another symptom has been both shoulders have this "shudder" thing when I move them and can also affect my neck and head.  All these symptoms have continued daily, along with daily headaches of various kinds, sometimes two or three at once.

 

 

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;

Link to comment

2021

Amitriptyline for headaches, pressure, pulsing, throbbing, shaking, shooting pain, etc with disastrous results again, even at a low dose.

I put the kitchen timer in the microwave and cooked it.  Stopped the drug immediately.

Propranolol at a low dose had a stimulating effect HR 132 and caused lethargy, depression, dull head, extreme pressure in ears, light headed, etc.

Hospitalised with chest pain and the pacemaker was turned on full bore again, and put on

25mg Metropolol - 30 mins later I was light headed, breathless and dizzy, my arms were moving about.  My BP went to 163.  Yet told to stay on this drug, doctor reluctantly agreed I take 1/2 tablet.  Day 5 I had severe chest pain (a side effect of the  drug) and stopped it.  Next day I felt immediate difference in my head, felt alive and alert and head pressure, pulsing and throbbing improved.  The following day I had more energy and was not depressed.

 

I might just add here that the pacemaker had previously been turned "off", but strictly was not off at all, since there is no function to turn it completely off (Biotronik Pacemaker).  It was "turned down" you could say.  The battery was still alive and it was still kicking in, but at a low rate, so as not to pace the heart.  

 

After the pacemaker was set at a high rate in hospital I went through exact same issues (palpitations, breathlessness, dizzy, faint) as when it was first inserted and several more trips back to my cardiologist to have it turned back "down".

 

Turning it back "down" did not resolve the many head, neck and shoulder issues.

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;

Link to comment

2022

Melatonin .5mg gave me nightmares both nights, made head issues worse (pressure, vibrations, tingling, throbbing, pulsing and brain shaking) and caused worse giddiness and neck and shoulder stiffness.  Lots of other issues worse.

Alepam/Serapax took 1/4 - 1/2 Definately helped with sleep, but after it wore off - high anxiety, high BP, worse head pulsing and and throbbing and brain shake, rapid pulse, giddy and insomnia the following nights.

Rizatriptan .25mg for migraine.  took 1/4 -  Made head dull, sort of zombie, dulled the pain, but did nothing for head pressure, pulsing, throbbing, shaking, spastic neck, scalp crawlies and so on.  After it wore off I had an electric head, increased head vibrations and head banging sensation. 

6 in a row, electric type jolts up left side of head.

Citapolam .25mg Felt dreadfull, if not worse, so upped to .5mg resulting in severe stimulating effect, agitation, electric current, tension headache, severe anxiety, stiff neck, insomnia.

After stopping - nightmare, severe brain shaking, body shake/tremble, screaming head noise.  Horrendous effects

 

The neurologist says its a matter of keeping on trying different drugs until you find one that works.  He has suggested a needle in the side of my neck, but you cannot move while they do this under ultra sound.  I really don't imagine I could not move, since he said its also very painful.  His other option was toxic botox injections in the scalp .... 

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;

Link to comment

Continuing my update:

2022

Symptoms since 2020 after pacemaker surgery, not including w/d symptoms

  • Severe head pressure, like full of fluid, heavy, like it will fall off
  • Throbbing and pulsing up neck into lower scalp and up into head
  • spastic type neck
  • Shoulder shuddering
  • Brain shaking
  • Sweats
  • Rapid pulse
  • Painful wound
  • electric jolts from wound area
  • shooting pains into head
  • scalp "dribbling" and "crawlies" sensation
  • giddy

 

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;

Link to comment

22nd May, 2022

Pacemaker removed

 

Did not resolve any of the above symptoms as I had hoped, instead, extra symptoms:

  • astrocious head issues, head throbbing, pulsing, vibrations, brain shaking all worse
  • head zaps
  • hip pain and difficulty walking
  • burning legs and feet pain
  • electric stinging pain from pacemaker wound
  • LS head pain
  • electric type shooting pain/jolts up neck behind ear 6 times in a row into LS of skull
  • giddy worse

2 weeks later

Many issues I suspect from anaesthetic (local this time) and antibiotics - more symptoms

  • High blood pressure
  • arrymthmia
  • depression
  • nausea
  • raspy, dry, irritated throat and cough
  • mouth ulcer
  • muscle aches and pain everywhere
  • shooting pains in various places
  • teeth ache and face ache

 

  • 2weeks later - Probiotics

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;

Link to comment

SO MY QUESTION IS THIS?

All these symptoms I now have .... are they w/d symptoms, or from pacemaker or the surgery?

Pacemaker was removed but WIRES LEFT IN.  These still cause pain a year later.

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;

Link to comment

28th May- 31st May 2022 and 21st June and 22nd June, 2022

Rizatriptan .25mg

Slight improvement for overall head pain, but head still sore/aching/painful

worse for:

  • fatigue
  • brain AND body shaking BAD
  • The right sided headache moved to the left side
  • shoulder shudder
  • giddy
  • strong vibrations, tingling and skull issues
  • head pain top and bottom of skull
  • teethache

Are these symptoms WORSE due to kickback?

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;

Link to comment

June, 2022

Up to 3 headaches a day and cannot find any relief.

The "fullness" is constant and daily

The right side headache (doctor says is migraine) is daily

Several times a week have a tension headache as well

 

August 2022

Same symptoms.  Banging into things.  Bashing my leg on car towbal, bashed my head on a ledge after getting back up. clumsy; dropping things; parathesia in fingers of both hands.

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;

Link to comment

August 2022

All symptoms are very bad and some worse, including:

  • head shudder
  • head vibrations 
  • brain shaking
  • brain spasms/cramping sensation
  • whoozy/giddy
  • head noise and sensations terrifying
  • body shaking
  • zapping from pacemaker wound very painful
  • extremely painful zap from pacemaker wound into left side of skull
  • breathlessness
  • neck spasms

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;

Link to comment

11th August, 2022

Turned over on the table in doctors office for a skin check and experienced excruciating pain under left breast.

Not sure if something to with the wires from pacemaker which were left in or a pulled muscle.

 

14th August, 2022  -  To hospital

  • chest pain under left breast, down sternum and across to right side chest
  • zapping pain radiating up neck
  • aching shoulders, down arm and backache top left side

x-ray showed wires in place.

Not heart related.  ECG normal

Doctor's diagnosis is nerve damage.  X-ray girl told me arm and shoulder pain is common after PM surgery.

Nurse also said nerve damage.

 

Given 1 x Endone and Paracetamol/Codeine tabs to take home

 

These comments are very interesting, since no GP has admitted to me (and I've been to about 4 or 5 different ones since the surgery) that it's nerve related from surgery, but keep telling me I have depression and anxiety which causes the pain.

 

 

 

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;

Link to comment

 @grandmaD,

 

I feel very sad to read about your struggles in the recent years after you felt a sense of stability.

 

It is likely that your current symptoms are due to the faster taper of paroxetine when you got to a low dose.

 

I pray that you will get some relief and I hope the pain killers you take are helping.

2017 - 2018 Lexapro (CT, no withdrawals)  2018 - 2019 Zoloft (CT, no withdrawals)

2/15/21 - paxil 20mg

5/1/22 - started fast tapter,  10mg 3 weeks, 5mg 3 weeks, 0mg 2 days.   7/1/22 - start of withdrawals, dizziness, nausea, loss of appetite, shaky. Reinstated 10mg

8/1/22 - 9mg - anxiety, panic attacks, sleep disorders (4-6 hours)  9/1/22 - 8mg - anxiety, panic attacks are gone. Sleep back to normal. Still struggling with appetite. Sporadic abdominal cramps  10/10/22 - 7.2 mg   11/10/22 - 6.6 mg - Tinnitus started after 2 weeks. Nausea is gone and appetite is slowly returning. 

12/12/22 - 6 mg  1/11/23- 5.4 mg  1/13/23- 6 mg (up dosed) nausea is back in full force 5/9/23 - changed to home made liquid (dissolves 20mg in 20ml) - 5.9ml

supplements: magnesium 300mg, taurine 2g, fish oil, vitamin E, probiotics, bioactive milk peptides,  L-theanine

 

Link to comment

Thanks cloudy for your kind words and your comment.  It has been difficult to determine the cause of all these issues, as you can see.  Painkillers help sometimes but not other times, and mostly need something every day.  I can't help but wonder if the one with codeine causes an adverse reaction also, so I try stick to paracetamol and ibuprofen and asprin.

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;

Link to comment

19th - 27th August

1/2 Candestarten

 

  • Head pressure, daily and constant (did have during w/d but was different and not as debilitating)
  • Backache
  • Breathlessness v. bad

The following symptoms I never had during w/d

  • Head pulsing  
  • Pain in skull left and right sides
  • Head throbbing went from bad to very bad to severe
  • Brain shaking went from bad to very bad to severe
  • Stiff neck 
  • Many different headaches, sometimes 3 different types a day
  • Chest pain mod-bad
  • ribcage aching, whole upper chest, heavy and awful

Feels like everything is worse, not better

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;

Link to comment

Alto, are you able to help me please?

 

I need help with starting lamotrigine

 

Will it help with brain shaking?

Brain pulsing and throbbing?

 

I found some notes from years ago that you had written and how it helped you ...

I have tried just about everything doctors have thrown at me that made me worse (am in process of updating my journal)

It has also been complicated through the sudden, unexpected loss of my husband, who was fit, strong and healthy, aged 67 ...

Then further complicated with unnecessary pacemaker surgery and removal 2 years later ...

 

The latest suggestions from doctor is Agomelatine or Valdoxan  which sounds good but side effects are headaches, dizzy, insomnia - which I already have!  Also affects liver.

The other one is Topiramate  which also sounds good because itss for tremor (which is what I hope to find relief from - brain shaking)

Side effects insomnia, agitation, loss of appetite and irregular heartbeat (have all these already) acidosis and kidney stones.  It increases serotonin.

 

In withdrawal and post withdrawal - is it more serotonin I need or less?  Many of the drugs I have been put on post w/d I find are stimulating at low doses and drugging at higher doses (By low doses I mean 1/4 of tablet and high doses I mean 1/2 tablet) and I wonder if this is due to the serotonin in them??

 

Your notes made sense and so I asked the doctor to delay the two top drugs so i could try lamogtrigine/lamictal.  He has given me 5mg tablets saying take half and increase gradually.

 

Your notes said to start at .5mg so that is what I have done for about a week.

 

My question is how slowly to updose?  What mg rate and what time rate?  

 

Thank you so much for your time and advice which is greatly appreciated!

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;

Link to comment

15th - 26th November, 2022

Sandomigran x 1/2

Has a doping effect, feel exhausted and fatigued.  Feel "drugged".  No driving.

 

27th - 30th November, 2022

1/4 x twice daily

No improvement.  Same effect as 1/2 at once.

 

 

1st December, 2022

1/4 daily

Revving up effect, including insomnia, extreme head noise, high body vibrations, etc. etc.  

Stopped

 

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;

Link to comment

IT LOOKS LIKE I OMITTED THE FOLLOWING:

7-12th April, 2022

Citapolam  .25mg        1/4 x tablet

 

No change in headaches, head pulsing and throbbing, brain shaking, body shaking, shoulder shudder, giddiness, vibrations, tension headache, insomnia.

much worse for

agitation

tension headache

electrical stimulation severe

head zaps worse

 

Feel dreadful.  Maybe .25mg is not working

 

.5mg twice daily

All issues worse with severe stimulating effect

  • agitation
  • electric current
  • tension headache
  • brain shaking
  • severe, high anxiety
  • insomnia
  • stiff neck/spasms

13th April,l 2022

Stopped citapolam

 

Then the following occurred:

  • Nightmare
  • severe brain shaking
  • trembling body and shaking
  • screaming head noise

horrendous

 

The neurologist said it is just a matter of experimenting, to keep trying one or another.  This was a bad experiment!  Affects brain severely.  Plus, now have even more issues I didn't have before, including:

 

mouth infection

dry cough

sore throat

sneezing

 

I was concerned at this point my symptoms were COVID so I did a rat test which was negative.  Or do I have an allergy to citapolam?

 

extreme stress/anxiety (is this what its like to be on "speed??")

extreme stiumlation of CNS

Insomnia worse

nausea

strengthlessness

breathlessness

CNS feels "alive"

 

8th May, 2022

 

In such a bad state, had to resort to Serapax.  This takes the "edge" of things, but when stopped, results in severe migraine for several days.  

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;

Link to comment

2023 in an attempt to calm my whole system and cope with added stress of looking to downsize home

April 30th    Valium 5mg

 ¼ @ bedtime

Seemed to help with headaches, but caused increase in stimulating effects, like vibrations, electrical type current throughout

Insomnia worse, couldn’t get to sleep

Head buzzing, noise increased like circadas

Palpitations/rapid pulse at bedtime preventing sleep

Incontinence was VERY BAD

Backaches, hip ache making walking difficult

Weak, wobby legs

 

May 3rd – 8th

BP higher than normal

 

May 4th

a.m.  VERY weird eyes around the edges, like wavy, watery, rippling effect for an hour or so, preventing reading.

Head pressure now getting worse

Throbbing, pulsing and shaking worse.

(Seems like the longer I take a new drug, the worse I get … this has happened before…)

 

May 8th

 

lots of stress going on with looking at a townhouse to buy… 

½ x valium

Thinking ¼ might not be enough!   Up to ½

 

Initial (high) dose seems to make me worse/drugged.

Then when I downdose, drug wears off, causing high anxiety/withdrawal type symptoms.

I think I should be starting at a very low dose and increasing slowly …

 

May 9th

a.m.  Woke with same extreme head pressure, pulsing, throbbing and shaking, etc.

plus a very bloodshot eye.  Head is atrocious.

10a.m.  Dizzy spell while sitting 

Lunchtime  BP 155/135 (very high for me.  Normal BP for me is 110/82)

 

Hard to determine what’s what, with new drug plus stress from buying new place and continual aches and pains from pacemaker wound and wires.

Still doctor has no explanation for shoulder shudder/shaking which now affects both arms and hands.

Or neck aches/spasms.  Or throat issues, difficulty swallowing, irritated throat, reflux type symptoms.  Or Painful elbow L and aching L arm with weakness

Or giddiness, Or the pain under L breast (wire in heart?)

Or aching all around L side from pacemaker site/wound and wires

Also several more chest pain at night incidences

Plus guts aches, reflux?, Indigestion, lack of appetite

 

May 10th, 2023

stopped valium

 

May 19th, 2023   Bp is still higher than normal, but better than before 139/101; 146/123

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;

Link to comment

January 2023 – April 2023

PACEMAKER

No change.  No improvement. Same symptoms as May, 2022 when pacemaker was removed (and wires were left in)

Wound site is still painful and aches a year later

Where the wires are, it is still painful and give a lot of distress from aching and hurting and stinging

Head issues seem worse, especially daily/constant head pressure, pulsing and throbbing, shooting pains and constant ache/discomfort.  Frequent headaches.

Shooting pain on Left side that didn’t have before.  This started after the pacemaker was removed.

Worse for muscle spasms and cramping up each side of neck and when on the left side goes up into skull and can cause the shooting pain on LS of skull and headache.  This started when pacemaker was inserted.

Worse for shoulder shudder and aching both sides, but left shoulder especially hurts and can be painful.  This started when pacemaker was inserted.

Worse for arm aching.  Having difficulty using left arm.  Cannot lean on it, pull or push or carry without causing everything to flare up... results in flare up of chest, shoulders, arms, neck and headaches next day.  This started after pacemaker surgery.

Add into that the depression from chronic pain and the anxiety it causes.

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;

Link to comment
  • Mentor

grandmaD, you’ve been through a whole lot over the past few years. I’m sorry you’ve had to deal with all of that. It has to be overwhelming.

 

When reading through your last page of posts, I can’t help but notice all of the changes in medications you’ve had in the past year or so. Your CNS has to be angry at this point. I understand chronic pain and chronic illnesses as I live with both myself. One thing I’ve learned is that “less is more” when it comes to pharmaceuticals. It’s no fun being in pain, but there’s always a price to pay when we go from one med to another trying to find relief, especially when we already have a sensitized CNS. Please be careful. My heart goes out to you. 
 

I read that you had shingles a few years back. Did you by chance have any along the nerves that feed the areas where you currently are having pain? Shingles can cause longterm nerve pain.

 

Regarding your pacemaker wires … ironically, I too have abandoned wires in my chest. In 2018, they found a birth defect in my heart and I had to have emergency open heart surgery. After repairing my heart, they put temporary pacemaker wires in during surgery so that in ICU they could quickly hook me up if something went very wrong during recovery. Long story short, I left the hospital with the wires abandoned inside (no pacemaker). I have noticed no discomfort from them. It would be very scary if I did, so I can only imagine the anxiety this may be causing you. I spent several years worrying about them and even begged the dr to open me up and take them out. Eventually, I’ve learned to live with them. One comforting thing, however, is that I get an x-ray every year or two to make sure the wires have not migrated anywhere. This has brought great comfort in knowing exactly where they are and that they are not causing problems. If you haven’t done so already, I’d recommend that you ask for an x-ray just for your own peace of mind.

 

I pray things ease up soon for you soon.
FR

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
  • Moderator Emeritus

@grandmaD I’m so sorry to hear about all the stress your pacemaker has caused you, and I’m so extremely sorry that you’re suffering from chronic pain. It must be all so exhausting for you.
 

Sending you big hugs🤗

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

Link to comment

Please sign in to comment

You will be able to leave a comment after signing in



Sign In Now

×
×
  • Create New...

Important Information

Terms of Use Privacy Policy