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uncomfortable: no stability on escitalopram, but slowly improving WD symptoms outside of the activation time


uncomfortable

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Hello! I'm KP and wanted to introduce myself. First and foremost I wanted to thank the members of SA. You were a rock for me and probably saved my life throughout this experience. English is not my native language, hopefully what I write makes sense. I am very hesitant to write this post as I don't want to waste anybody's time, but any help or opinions would be greatly apperciated!


Previous drug history: on and off predominantely ssris (sertraline the only one I remember) from age 17-22 (only taken them 1-3 month at a time) now almost 30yo

Recent history: sept.2021 put on 5mg escitalopram (felt good) for GAD, panic disorder and depression from ptsd, 
after 4 weeks psychiatrist wanted me to increse to 7,5mg, then to 10mg. Had severe side effects on 7,5mg, went down to 5mg (felt good), tried another advised (although 5mg were helping already) increase to 7,5mg a few months later, same severe side effects. Jumped back to 5mg, stayed there. 

- 6months after starting escitalopram, the positive effects of the SSRI seemed to have stopped and i started to get sick all the time, every 2 weeks i would catch something that would last for weeks/months. Got all the check ups, that didn't indicate anything wrong with me. Psychiatrist said it couldn't be from the SSRI. kept taking 5mg. 
suspected sideeffects at the time: brain fog, horrible concentration, decreased immune system function, weakness overall, couldn't get out of bed for the life of me and needed 10-12hours of sleep a night + returned anxiety & depression.

- march2022 ADHD diagnosis
(- sept.2022 5 weeks the flu, 2 weeks break, okt.2022 covid for 3 weeks)
- nov. 2022 psychiatrist put me on bupropion (don't remember the dosage, but very low) as a "milder substitute" for rhitalin. Escitalopram 5mg + buprion together were awful, can't remember much except that i was so unstable with panic attacks, overwhelmed and weak that I had to quit my last year of 2d/3d animation college in dec.2023 (promised my team from my diploma project that I would still finish my parts for them).
- 04.jan.2023 bupropion <a week taper/CT (advised by psychiatrist), 5 weeks discontinuation syndrome, tough but doable, still able to work out 4x/week, emotionally unstable, panic attacks and exhausted. 
- feb.2023 started venlaflaxine (can't remember dosage, but low) and was advised to start tapering escitalopram, because they can't be taken together. advised taper: splitting tablet, skipping days for approx. 3 weeks. can't remember symptoms, but everything from insomnia to brain zaps and balance issues during taper, got better, but nothing compared to what followed.

 

(here starts the main part of my journey)
- 04.mar.2023 end of "taper", feeling awful the day after, thought i might be getting sick.

- 08.mar.2023 the main symptoms started:
> dissociative movement disorder, severe headache and nausea lead to tremor, couldn't walk without falling, couldn't move limbs without the tremor wandering to them and making it impossible to move that limb on own accord, severe speech impairment, couldn't form words, or sentences. those attacks lasted anywhere between 20 minutes to 6 hours, sometimes multiple times a day. 
11.mar.2023 ER neurologist + psychiatrist diagnosed a dissociative movement disorder, said this couldn't be from escitalopram. 
- 13.mar.2023 psychiatrist told my to CT venflafaxine bc. she suspected it could be an adverse drug reaction. I'm sure this didn't help my case.


My symptoms the following 6 months were very alternating, very intense and staying for a long time, but disappearing suddenly and directly followed by an onset of different bundles of symptoms:
> day after the first attack: absolute exercise intolerance even though I was a very active person prior to that
> suicidality (first 5weeks), 
> consistent: headaches + head pressure, upset stomach, insomnia alternating with 15hours of sleep, non-stop severe vertigo, weakness and fatigue, extremely sensitive to stimuli (light, noise, food, etc), extreme exhaustion when I needed to focus especially on conversation, brain wasn't working whatsoever, vomiting
>dissociation, depression, panic attacks
> after a few weeks/ up to two months i think, the movement disorder got better, but instead of the tremor ,when the telltale signs of a specific headache + nausea came on, I couldn't move specific or all limbs at all. couldn't physically get out of bed for hours because my body wouldn't move, couldn't walk, my brain couldn't send the signal to the leg that I want to move forward, if i wasn't held/supported by somebody I would simply fall. absolutely bed ridden on those days.
> after that the fainting spells started even when sitting upright + daily pre syncope every time I would stand for longer than a few minutes and if I would walk anywhere for longer than a few minutes. I only remember that during late spring and early summer2023 I couldn't even take a shower without my body breaking out in hives and my lips turning blue and my extremeties very cold. i then couldn't breathe because my lungs were burning and I would become pre syncope, just like when I walked a few hundred meters. Then I would have to lay in bed for the next hours, which would be a huge help.

 

Psychiatrist put me on 5HTP, and melatonin, a few supplements (tripple dosage), GABA 500 during that time, tried even hydrocortison which was a terrible idea in my condition.
In june2023 after being so scared and desperate to find out what was wrong with me I found Surviving Antidepressants, because I couldn't let go of the thought that I was going through withdrawal. My psychiatrist said it's not possible. Every doctor, even my therapist I talked to said it's impossible for my condition to come from the psychiatric drugs in general.
mar.2023-aug.2023 I got every check up imaginable (thanks to good healthcare from the country I live in) from neuroligst, cardiologist, internal medicine in general, got an mri to exclude epilepsy or anything brain related, complete blood work, gynocologist. everything was supervised by my psychiatrist + additional very expensive check ups for bacteria and viruses from a homepathic standpoint which she supported. diagnosis from the docs during that time: mentally fragile - should meditate more, or that my fainting comes from not working out enough.

 

- aug.2023 symptoms were still bad but I felt more like a human being than a corpse, I could wake up in the morning and even go on short evening walks with my dog without pre syncope or fainting being an issue
- sept.-okt.2023 10mg sertraline for depression and anxiety. uncomfortable side effects even though my condition improved on it a bit and decided with the doc to switch directly and try out escitalopram again. 
- oct. 5mg escitalopram (for 1 week, then 7,5mg for 1 week, then 10mg was the plan)
 at the same time the psychiatrist put me on two strong antibiotics for 5 weeks (supposed to be 6 weeks for round one) for supposed bacteria (interpretation of my blood work from a homeopathic standpoint, not supported by general medicine). after 3 weeks of living hell she told me that I can't take this one antibiotic with escitalopram bc it could affect the heart and I should stop the antibiotic and updose the SSRI because the 5mg or 7,5mg (maybe it was 7,5 to 10) at the time seem to be too low for my body if it isn't working properly.
I don't remember much from those 5 weeks and my memory is very blurry. I only remember that I felt like I was dying and that the antibiotic + 7,5mg and then 10mg potion were killing me. 
Psychiatrist then advised to stop antibiotic and jump down to 7,5mg and then to 5mg within maybe a week or two. It was horrible. There was no stability to be found on any dose, onset of movement disorder "attacks".
End of dec.2023: I came back to surviving antidepressants after having the same withdrawal symptoms as in spring2023 when getting back to 5mg. I read everything I could with my fried brain that couldn't comprehend much or focus on anything at all and started my 10% taper. I didn't go back to my psychiatrist.

This brings us up to date:
I do my 10% taper by cutting the tablet and by weighing it, soon switching to liquid solution by liquidizing a 10mg pill. 
- jan2024-mar.2024: no logs, but tried out 10% + 5% tapers
- 19.mar.2024: 0,029g
- 10.apr.2024: 0,026g
- 30.apr.2024: 0,023g
- 19.mai2024: 0,020g
- 16.jun.2024: 0,018g
- 03.jul.2024: 0,016g (current dose)
(those are MGPW, not MGAI - according to my calculations 0,013g will resemble 1MGAI)

 

current most prevalent symptoms:
- orthostatic intolerance with pre syncope or syncope, vertigo, headaches + head pressure, brain fog, balance issues, anxiety & depression, very sensitive to any stimuli (temperatures, sound, noise, food, sunshine), extreme fatigue, joint pain, stiffness and muscle pain or weakness or extremely tense muscles, cognitive impairment with severe headaches and exhaustion when trying to focus, depersonalization, neuro emotions, horrible periods (I now taper around them)
the severity of the symptoms varies according to the windows and waves pattern and is managed through diet, sleeping a lot when I don't have insomnia, stress reduction, being horizontal a lot, gentle yoga stretching for the pain, gentle pilates, having my whole life on pause in general and not doing anything.


Now to my current issues/uncertainties after reading what I could find on SA over the last months:
what I observed from this year's taper: there is no stability to be found on escitalopram. I started to notice though that I feel much much better, awful but better since I started my taper, especially in the mornings before I take the pill at noon (had to switch to noon bc I kept oversleeping) and significantly worse within 1,5-2hours of taking it and the hours that followed and better again right before sleep. This is a phenomenon that seems to become stronger and I feel like it finally allows me to discern withdrawal symptoms from weird reactions to the SSRI itself. I feel like it might indicate some progress.

 

But I have a difficult time trusting my mind and body when deciding how to taper. I probably should have stayed longer on 5mg in dec.2023/jan.2024 which might have changed my reaction to the drug itself, but I didn't know better + was so miserable that tapering was my only option and weirdly I think I might have made the right choice.

  •  Could it be some kind of adverse reaction? 
  • Would you recommend a different approach than the one I've been trying out in 2024?
  • If you would recommend a slower taper: I can't seem to feel anything but awful (less awful than in the beginnig of the year) within the activation period and the hours after taking the drug, only beyond that time frame. It feels disproportionate. 
    Do you think this would change and give back a better quality of life? 
    Or do you think this is just a part of WD syndrome and will improve without changes/interventions to my taper method over time?

 


Thanks a lot in advance & I hope you're having a good day!
KP

Edited by Emonda
Name to title

2018-2019 Sertraline (2-3 months) / sept.2021 5mg Escitalopram / oct.2021 7,5mg / oct.2021 5mg / (can't remember date) 7,5mg a few months later, 2mo later 5mg / nov.2022 Bupropion (don't remember dosage, but low) / 04.jan2023 advised Bupropion CT(<1week taper) / 03.feb.2023 Venlafaxine (can't remember dosage, but low) / feb.2023 approx. 3 weeks advised taper of Escitalopram / 04.mar.2023 last dose Escitalopram / 08. mar.2023 start of extreme withdrawal symptoms / 13. mar.2023 advised CT of Venlafaxine (suspected adverse reaction) / apr.2023-aug.2023 on and off: 5HTP, GABA 500, melatonin, hydrocortisone 1x, highly dosed supplements / sept.2023-oct.2023 Sertraline 10mg / end of oct.2023 Sertraline CT / end of oct.-nov.2023 5mg escitalopram, 2 weeks later 7,5mg, 1 week later 10mg / dez.2023 10mg, advised taper 1 week later to 7,5mg, 1 week later to 5mg.

/ started dry cutting and weighing tablets: 0,065g MGPW = 5mg MGAI 23.dez.2023: 0,058g MGPW / jan.2024-feb.2024: no logs, but tried out 10% + 5% tapers / 19.mar.2024: 0,029g MGPW / 10.apr.2024: 0,026g MGPW / 30.apr.2024: 0,023g MGPW / 19.mai2024: 0,020g MGPW / 16.jun.2024: 0,018g MGPW / 03.jul.2024: 0,016g MGPW (current dose)

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  • Emonda changed the title to uncomfortable: no stability on escitalopram, but slowly improving WD symptoms outside of the activation time
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Hello, @uncomfortable, and welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications, and their associated withdrawal syndromes.  

 

Thank you for completing your drug signature.  You have been through quite a lot!  I'm so very sorry for the terrible advice you have received from doctors, and for the gaslighting regarding your symptoms.  I can assure you that all of these symptoms CAN be caused by nervous system instability following rapid tapering, cold turkey stops, inconsistent dosing, and rapid drug cycling.  So you're in the right place. 

 

A few things stand out to me as I read your history.  First off, you have had lots of testing to rule out other causes of your symptoms, and everything is fine.  This is good news, and it's great that you were able to do that.  Second, I notice that you had covid in the middle of all of this.  Being a long covid sufferer myself, I want to mention that there is a huge number of overlapping symptoms between drug withdrawal and long covid.  While I know for certain that many of your symptoms are likely caused by withdrawal, it is certainly possible that you have a component of long covid as well, and it may be contributing to the severity of ongoing symptoms.  It is NOT easy to taper with long covid, because it's hard to tease out what is causing the issues.  But it can be done, and can necessitate a slower taper.   Third- some antibiotics are neurologically active, so I suspect that taking those antibiotics has likely set you back.  I had a similar experience when I took antibiotics in January for a sinus infection.  I was about 4-5 months before I got back to baseline.  Fourth- the supplements your psychiatrist started you on may have made things worse.  We only recommend two supplements here at SA, Magnesium and Omega-3 fatty acids, and even then, you need to be careful, as it is common for those in withdrawal to be hypersensitive to medications, supplements and even foods.  Start on a low dose, if you try anything, to see how you react. 

 

It sounds like you've done a wonderful job of educating yourself about windows and waves, and the importance of a slow taper, so I won't repeat all of that in my intro post here.  It also sounds like you have found some non-drug methods of coping with your symptoms that work well for you.  This is so important, and I firmly believe that all of the self care that you are doing will help you heal.  The fact that you are having windows and waves is a good sign that you are on the right path.  You may wish to consider adding mindfulness/meditation into the mix... I know your psychiatrist recommended that, but I'm recommending it for symptom management, rather than just not knowing what to do with you.  Mindfulness has been a critical addition to my coping toolkit, and a bedtime meditation practice has helped with my insomnia, so I wanted to suggest this to you for your consideration.  I also adore gentle swimming- the weightlessness you experience in the water is amazing- I almost feel normal when I'm in the water.  A couple of self-care links, if you haven't already reviewed these:

 

Easing your way into meditation for a stressed-out nervous system

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

Tips to help sleep: so many of us have that awful withdrawal insomnia

 

In terms of your specific questions:

 

I think you may be a little bit sensitive to your meds at this point, due to all the chaos your nervous system has endured over the last year.  Not necessarily an adverse reaction, but you are certainly sensitive.  It sounds like you have found the ideal time of day to take your meds, so that you are able to take them on time, and the symptoms abate in time for you to get some sleep at night.  Don't change a thing there.

 

You may wish to consider holding for a while.  Maybe a few months, to see if the severity of your withdrawal symptoms settle down.  Keeping a symptom journal would be helpful, because sometimes it's difficult for us to see progress when we are living this hell from one day to the next.  This would be especially important if you decide to hold for a few months, as you could identify if things are improving as you hold.  When you resume tapering, you may wish to consider reducing how much you are dropping your dosage at one time.  There's no shame in that- I'm currently reducing at 5% per month.  I also think you would likely be a good candidate for a Brassmonkey Slide taper- basically dropping 2.5% per week for four weeks, then holding for an additional two weeks.  I like this method because it is much more gentle than 10% drops at a time, and it also feels more active, so you will feel like you are making progress all the time.  Here's a link to it- check it out!

 

Brassmonkey Slide Method of Micro Tapering

 

Regardless of what you choose to do, you may have a long road ahead.  But the good news is that you have learned some good coping mechanisms that will help you through.  I'm so sorry that your life is on pause because of this.  I know how hard that is- I've lost my career, my social life, my fitness... so many things.  But I'm trying to look at this as an opportunity for growth in different ways.  What we tell ourselves does matter, so try to find things to be grateful for each and every day, and see the beauty in life as much as you can.  I also feel that it takes a village to get through this- I don't know if you have supportive people in your life, but I do know that you can rely on us for support along the way!

 

Most of all, you are healing, every day, whether it feels like it or not.  Keep up with your self care activities, eat clean, stay hydrated, and avoid alcohol, caffeine, recreational drugs.  You will get well, and there is a whole new you waiting on the other side!

 

Wishing you more windows than waves... you've got this! ❤️‍🩹

 

 

 

 

1995- 2007- On and off multiple antidepressants (Prozac, Paxil, Effexor, Wellbutrin, escitalopram). Memory poor- can’t remember dates. Always tapered fast or CT.  2007- tapered Wellbutrin, zopiclone and escitalopram over one month to get pregnant.  Withdrawal hell for many years.

2009- Daughter born 🥰 Post partum depression/psychosis- no meds taken.

2016- Back on escitalopram due to job change/anxiety

2022- Severe covid infection- Diagnosed with long covid 08/22.

2023- 01/23- Long term disability approved for long covid.  Started taper under MD advice from 20mg: 11/23- 15mg. 2024- March-10mg. Started low dose naltrexone for long covid-5mg- terrible reaction, reduced to 0.5mg.  April- 10mg escitalopram, 1.0mg LDN. May 1- 9.0mg escitalopram, 1.0mg LDN. May 15- 9.0mg escitalopram, 1.5mg LDN.  June 12- 8.5mg escitalopram, 1.5mg LDN.  July 8- Brassmonkey micro taper started.  8.4mg escitalopram, 1.5mg LDN.  July 15- 8.3mg esc, 1.5mg LDN.  July 18 8.3mg esc, 2.0mg LDN

 

Supplements/other meds: Vitamin D, B12, Claritin

 

I am not a doctor.  I don't even play one on TV.  This is not medical advice, but based on personal experience.  Please consult a medical professional.

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