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inthewaitingroom: Disjointed notes from my year of hell


inthewaitingroom

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Reading back over my neuro problems document I wrote earlier when everything started; it seems like pretty much everything can be traced back to established problems associated with tapering and withdrawal of SSRI’s.

 

I began tapering down from 100 mg earlier this year (2015), in the spring. I went from 100 to 75 to 50 to 25, at which point I ceased taking the Zoloft. I went very slowly with the taper, with the knowledge that a fast taper could lead to withdrawal problems. I went perhaps a month between each reduction. I completely finished at the very beginning of July, I want to say July 2nd. For the month of July, I didn’t notice any problems. In the beginning of August however I started feeling an intensifying of the symptoms I already had written down in the neuro problems doc, including a depressed mood. I also had my first migraine of my life on August 8th. I had the visual aura preceding the migraine. I went to the E.R. where I got a CT scan, and was told that everything checked out fine.

 

When my mood didn’t seem to be getting any better, I attempted to reinstate the Zoloft at 25 mg for three days on August 12-15th. I seemed to get a serotonin syndrome response from this, so I stopped taking it in the hopes that perhaps the withdrawal symptoms would clear on their own. From August 15th to October 2nd I was traveling in Europe. I was supposed to stay longer, but by October 2nd the withdrawal symptoms were getting worse and I knew I needed to go home.

 

On October 3rd I attempted another reinstatement of the Zoloft, this time at 12.5 mg for two days and had the same problems I had earlier in August with the reinstatement. I stopped taking it again and the serotonin syndrome seemed to clear up, but by this point the withdrawal symptoms had started full force.

 

For the entire month of October and now the beginning of November, I’ve had horrible cognitive symptoms that have kept me from being able to function normally. I have a hard time planning future events, including structuring a day plan. I have a hard time reading, writing, and speaking to people (I just can’t think of things to say, to continue conversations). Even listening to music or watching t.v. is overwhelming. Overwhelming is the best word I can think of to describe any kind of stimulus to me right now. My cognitive and physical functioning is just overwhelmed with everything, and I get tired very easily. Despite being tired, it’s hard for me to shut off. I’ve spent a few nights just laying in bed for hours without being able to sleep. One thing I’ve noticed this last month is that my heart just pounds all day long. I have ringing in my ears as well, which irritates me when I’m trying to fall asleep. I get dizzy easily when I stand up too fast, which makes me feel nauseous. For the first month of this, (October) I had intense thirst all the time. The intense thirst seems to have dissipated this last week. Now however I am getting nauseous where I wasn’t before. Also food seems to have lost all appeal to me. Nothing sounds good to me to eat, and nothing tastes good. It’s hard to describe, but my taste just seems to have numbed.

 

Other things I’ve noticed:

  • Face hot and flushing all the time

  • Feeling of fast heart rate

  • Can’t concentrate or think very well

  • Severe memory problems

  • Sore back of the neck

  • Headaches all the time

  • Feeling of electricity running along my spine & arms, especially in response to music.

  • Mentally exhausted easily when trying to read, follow conversation, watch t.v.

  • Incredibly hard to look in people’s eyes when having a conversation, almost physically incapable sometimes, I feel like I need to close my eyes and look away. It’s physically difficult to make myself smile, or make any facial expression. Reduced affect display.

  • Unable to remember words, sometimes unable to recognize written words

  • Aphasia

  • Zero interest in anything at all

  • Living in a fog, daze, feeling drunk all the time

  • Feeling of being frozen; i.e. not being able to plan next thing to do

  • Utter and complete lack of confidence in ability to do anything

  • Intense thirst has disappeared

  • One of the best things that has happened in this last week is that my feeling of restlessness seems to have dissipated for the most part. For the better part of October 2015 I had what can only be described as intense mental restlessness. I was not content anywhere in any context, and felt that the only way to feel better was to keep moving (going from location to location, upstairs, downstairs, outside) and everywhere I felt this intense unease. I looked this up and apparently it’s called akathisia.

  • Horrible upper back pain that radiates into my shoulder blades, chest, throat. Usually lasts for around 20 minutes to an hour of excruciating pain. Feels almost as if my throat is clenching or tightening.

  • Constant buzzing in my ears, especially my left ear. Especially writing this and stressing myself out thinking about what a hell my life has become. Ear popping as well, they always feel like they are full, and I need to pop them, as if I’ve been in an airplane.

  • Inability to plan even the simplest tasks in my day, where I used to make lists and successfully plan a full productive day. Now it takes weeks and months to accomplish tasks simply because I can’t plan a way to make myself do it.

  • Every task seems insurmountable and scary. When I started stressing out, it feels like I shut down.

 
 

So:

 

January 2015: 100 mg

February: 100 mg

March: 75 mg

April: 50 mg

May: 25 mg

June: 25 mg

July: 0 mg, totally fine

August: Just beginning of the withdrawal

September: Feeling worse and worse, more of the physical side effects of withdrawal

October: Mental side effects of withdrawal officially and horribly begun

  • Akathisia

  • Intense thirst

  • Insomnia

  • Ringing in ears

November: Withdrawal as before

December: Withdrawal symptoms diminishing

January - October 2016: Increasing cognitive difficulties, apathy,

October: Beginning of difficulty with facial expressions, maintaining eye contact with person I’m talking with, aphasia (difficulty understanding speech, creating speech, continuing a conversation, feels as if my brain just stops mid conversation, the only thing that feels easier is writing, although I can tell that my word choice is becoming limited and especially use of prepositions is becoming difficult, choosing the wrong word). One thing that bothers me the most is dyschronometria. I have a severely limited ability to perceive time passing, that’s become increasingly impaired.

I am fairly certain that from the limited research I’ve been able to do, that I might be experiencing Psychiatric drug-induced Chronic Brain Impairment (CBI) http://www.behaviorismandmentalhealth.com/wp-content/uploads/2013/12/Breggin2011_ChronicBrainImpairment-Ref-for-ECT-post-140.pdf

 
 

Going forward; options:

  • Continue without SSRI’s

    • While exercising, eating healthy, taking supplements

  • Or start taking either fluoxetine or citalopram

    • After which point I can attempt another taper after stabilizing

 

December 2015:

I don’t have any obligations that I need to do before January, so at this point the best option seems to be sticking it out without SSRI’s. I feel that I’ve made progress (at least emotionally, cognitively I don’t feel the same progress), and that this progress will continue.

Reasons why:

  • I only took Sertraline for 2 years, albeit at 100 mg. This is still not the highest dose given.

  • I did a relatively slow taper (although from continuing research I’ve noticed that many people attempt even slower tapers)

  • I am young, 24. And with younger patients, Dr. Healy has noted that recovery is more likely (within 1 to 4 years).

  • I am already seeing progress (thirst has disappeared, intense akathisia (mental as opposed to physical) has dissipated, depressed mood has for the most part disappeared (time between episodes of intense despair longer and longer), as for intense anxiety (heart rate seems to be more regular, morning anxiety not as bad). I am cautiously optimistic at this point.

 
 

Now, October 2016: Before this all started, I was quite competent. I can get references from friends / family, I was doing well in school (finishing a Psychology degree until this started, was even able to get A’s in two classes in Spring of this year while I was going through withdrawal). I was very socially aware as well, never had any problem with social cues, creating meaningful relationships. Now perhaps due in part to a lack of confidence, I’m having a very difficult time maintaining meaningful relationships.

 

 

I'm sorry for the disjointed introduction, I'm having a harder and harder time writing a coherent message, and I just wanted to start involving myself in the discussions here. I thought might as well share this document that I've begun to trace the development of this horror this last year.

Age 14 started Prozac, continued on and off for 5 years, don't remember dose. Tapered no problems. 
Age 22 started Zoloft, took 100 mg from September 2013 - January 2015, did 25 mg taper every other month, stopped completely in July 2015

Now no medication, and feel like I'm living in hell. Waiting for it to get better. Waiting to start living again. 

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Hi ITWR,

 

One of the experienced Mods will be along shortly to help you, but I had most of the symptoms you have listed and in the body of the text; after I CT'd off Cipralex last year.

 

These lasted a couple of months, and some have returned during bad "waves".

 

You have come to an amazing place for help.

 

Hugs,

JC

Dose History: 19 Feb 2014 - Escitalopram 10mg daily June 2015 - Started taper, 5mg every other day July 2015 - 5mg every 2 days August 2015 - 5mg every 3 days September 2015 - 5mg every 4 days Sept 14th - Completed tapering, but at 7 weeks "drug free" I suffered serious WD symptoms as a consequence of "incorrect" tapering. Nov 25 2015 - Re-instated Cipralex @ 2.5mg daily. WD symptoms faded. Held at this dose and experienced "windows and waves". 12 Oct 2017 Reduced dose to 1.25mg. 13 Mar 2018 Reduced dose to 0.625mg (approx.). 16 April 2018 0mg. Windows and waves triggered by stress (IBS/reflux, headaches, sinus issues) Aug 2019 Mirena coil fitted 6 Jan 2020 MAJOR Wave hit 19 months following last dose (protracted WD).  Symptoms listed below Mar 2020 Mirena coil removal.

Therapy: Nov 15th 2016 Re-started therapy Jan 19th 2017 Started CBT Dec 2017 Started listening to Hypnotherapy CD (self-esteem). Nov 2019 Started couples therapy.

Supplements: "Bioglan" Biotic Balance Ultimate Flora 10 billion CFU, live Bacteria, Probiotic, suitable for Vegetarians, with Lactobacillus Acidophilus, Lactobacillus Rhamnosus, Bifidobacterium Longum"Pukka" Vitalise a unique blend of 30 energising botanicals.

Diet: 16 April 2018 Detox cleanse / anti-candida for 90 days. Jan 2020 Started "small plate" diet (i.e child size portions).

Exercise: Stretching, Yoga, Pilates, Spinning, Elliptical/upper body workout, walking.

Medical Test Results: 4 Jan 2017 Homeopathic Treatment starts 24 Feb 2017 Started weight loss program 24 Mar 2017 Naturopathic Treatment + anti-Candida diet started due to suspected Candida Related Complex (CRC). DETOXED for 7 weeks to "re-set" gut. April 2017 "Genova Diagnostics" Comprehensive Stool Analysis NEGATIVE; Full Blood Count (Normal) / Blood Cholesterol: 5.6 (Borderline) / Blood Sugar (Normal) / 28 Jun 2017 FSH 8.2 / 14 Nov 2017 FSH 17.7 Dec 2017 Blood Cholesterol: 3.9 (Normal) / Kidney Function (Normal) / Blood Sugar (Normal). December 2017 "Genova Diagnostics" Food panel allergy (bloodwork) analysis - a few "VERY LOW/VL" allergens; Mar 2018 "Genova Diagnostics" SIBO urine analysis: High Level of Yeast/fungal markers found in small intestine but NO SIBO.  April 2018 Thyroid (Normal) / Full Blood Count (Normal) / FSH (Normal). 16 April 2018 Started anti-Candida diet - 3 month protocol.   25 March 2020 All test results "Normal". CRP" 5 mg/L (normal range to 0-5 mg/L).

Symptoms:  Flu-like symptoms, anxiety, anhedonia, sinus headaches right-side (severe), IBS issues/reflux (severe)**, tinnitus, fatigue, inner tremor, nausea, chills/hot flushes, pounding heart, muscular issues including stiff left hip flexor, intense anger, PSSD (ongoing).  **Histhamine intolerance (suspected).

Major Life Events: 

Re-located to UK from Canada: Jan 2016

My father died: 5:05pm, Monday 5 Feb 2018 Last Lexapro dose: 16 April 2018 (its now been over a year since I quit ADs)  Moved house: Friday 23rd February 2018  "Divorced" toxic Mother: Monday 26 March 2018 Starting working again: 19 November 2018  Diagnosed with: 5th August 2021 PTSD/C-PTSD Diagnosed with: March 2022 Interstitial Cystitis (IC)/Painful bladder syndrome

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  • Moderator Emeritus

inthewaitingroom -- Welcome to Surviving Antidepressants (SA)

 

I want you to know that I've seen your message.

 

I'm confused about the timeline. Was your last dose of Zoloft/sertraline in 2016 or 2015?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

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  • 3 months later...

Hi scallywag, my last dose was in 2015. I can't believe it's been so long now that I've been off and I'm still experiencing these symptoms. I have such a difficult time thinking now, it feels so impossible to continue doing anything :( 

Age 14 started Prozac, continued on and off for 5 years, don't remember dose. Tapered no problems. 
Age 22 started Zoloft, took 100 mg from September 2013 - January 2015, did 25 mg taper every other month, stopped completely in July 2015

Now no medication, and feel like I'm living in hell. Waiting for it to get better. Waiting to start living again. 

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Hi Junglechicken, it makes me feel better to know I'm not alone in having these symptoms, that they can be attributed to something most likely. I wish they would just go away finally :( It's been 1.5 years now about, and I'm still having such a hard time concentrating. The emotional symptoms seem to be getting better, I'm not as depressed anymore, but the cognitive side effects make me anxious still. I'm having a bad wave right now, although I'm not sure anymore whether I'm having windows and waves or if it's just a steady plateau I've reached. I hope I'll improve from this stage. 

Age 14 started Prozac, continued on and off for 5 years, don't remember dose. Tapered no problems. 
Age 22 started Zoloft, took 100 mg from September 2013 - January 2015, did 25 mg taper every other month, stopped completely in July 2015

Now no medication, and feel like I'm living in hell. Waiting for it to get better. Waiting to start living again. 

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  • Moderator Emeritus

Sadly, withdrawal symptoms don't come with a published expiry date. They last as long as they last, as frustrating and discouraging as that is. People do recover, some take longer than others.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.
1997-1999 Effexor; 2002-2005 Effexor XR 37.5 mg linear taper, dropping same #beads/week with bad results

Cymbalta 60 mg 2012 - 2015; 2016: 20 mg to 7 mg exact doses and dates in this post; 2017: 6.3 mg to  0.0 mg  Aug. 12; details here


scallywag's Introduction
Online spreadsheet for dose taper calculations and nz11's THE WORKS spreadsheet

Link to comment
  • 2 years later...

Hope you're doing better now, @inthewaitingroom.

PRN = as needed; WDR = withdrawal reaction; ADR = adverse reaction

2007: Started BC pills  2008: Prozac 0 --> 80 mg  2010: Tapered Prozac 80 --> 0 mg  2015: LSD/shrooms/MDMA once; Xanax 0.25 mg PRN; Prozac 0 --> 40 mg; Lamictal 0 --> 150 mg  2018: Tapered Prozac 40 --> 0 mg (WDR); Klonopin 0.125 mg PRN  2019: DC'd BC pills (WDR); Klonopin 0.125 mg PRN; tapered Lamictal 150 --> 35 mg (WDR); Trileptal 0 --> 4 mg   2020: Jan: one BC pill (ADR + hormonal effects); Apr-Jun: curcumin cream daily + Elidel cream PRN (ADR + hormonal effects); Oct: started melatonin 0.375 mg; Nov: acupuncture treatment (ADR + hormonal effects); Dec: tapered off melatonin 0.375 mg  2021: Jan: benzoyl peroxide cream (ADR); Feb: started probiotic; Mar: tapered off probiotic; May: Trileptal 4 mg --> 0.4 mg (ADR); Nov: Trileptal 0.4 mg --> 0.3 mg  2023: Nov: Prednisone 60 mg

Current medications: Lamictal 35 mg, Trileptal 0.3 mg, Prednisone 60 mg

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