Kieran Meds - PSSD and other stories

[Kieran]

Hello

 

My name is Kieran. I hope to receive some support/advice regarding symptoms related to taking SSRI medication over a number of years.

 

Here’s a quick history -

 

2007-08 - I started taking Prozac at the age of 25 due to  recurrent feelings of anxiety, depression which started in early teens. Initially the drug felt like a miracle - I felt a kind of inner wellbeing which I don’t think I’d ever experienced before.

 

 Early 2008 - I tried to stop the meds and hit crisis while teaching English in Japan. Withdrawal symptoms?

 

I started taking paroxetine, which again, helped a lot.

 

Due to concerns about the meds which I had read in the UK press, I switched to citalopram in about 2009/10, which I took for about 2 years.

 

I had a breakdown in 2011, and with a psychiatrist’s intervention, I started taking Prozac again. 
 

In 2015, after another difficult spell with my mental health, I spent two weeks receiving treatment in a private hospital in London and started taking 50mg of Sertraline. 
 

Continued this until 2019, when, after getting a better understanding of my childhood traumas which contributed to my mental health issues, as well as attending Adult Child of Alcoholic meetings ACA, I decided to switch back to Prozac with the hope of one day stopping the medication, having heard that Prozac’s long half would make it easier to taper. The efficacy of the medication had also diminished as my body became used to the drug. Just found out the technical term for this is tachyphylaxis!

Retrospectively perhaps unwisely, I started tapering during the Covid lockdowns. I experienced lots of symptoms during this time, really acute anxiety,hyper-vigilance, depression, crying spells , mood swings, intense anger/sadness etc. I spoke to a GP and wasn’t able to be prescribed Prozac liquid to enable me to taper more gradually.

 

i started to take one capsule every week, then two weeks. During this time I experienced persistent stomach pain, and wonder in hindsight whether it had something to do with serotonin receptors in the stomach. From about early 2022 I also started to experience frequent leg pain. 
 

In a state of frustration/ crisis in the summer of 2022 I decided to stop the drug altogether. Leg pains increased dramatically to the point of being continually quite severe, either at rest, when walking and at night in bed. By Christmas I was experiencing continued dizziness when walking and a feeling of being spaced out. 
 

My mental health was increasingly poor at this point with the symptoms of anxiety/depression ramping up. I was increasingly agoraphobic. I started to become fixated on my physical symptoms and didn’t make the correlation with antidepressant withdrawal at this point. I went to A&E several times this year as I had no idea what was causing my symptoms and I was deeply concerned there was something seriously wrong.

 

This reached crisis in May this year, when I started to experience worsening erectile function over a number of weeks, which eventually resulted in complete loss of sensation entirely. My life has been really compromised by  symptoms of CPTSD and I feel I’ve missed out on life. I’ve not been able to work or be in a relationship for many years and the erectile issues sent me into a state of complete breakdown/agitation. I ended up spending several days in hospital, and, you guessed it, in a state of crisis, I went back on the medication.

 

It’s now that the insidious nature of these drugs started to make sense. Some, if not fully recovered, erectile function returned immediately, the leg pains eased considerably. I think the doctors I’d seen thought I was making up my symptoms as checks showed there was no physical cause. Now I understood clearly that this was iatrogenic harm.

 

My relationship with meds is so ambivalent now. Reinstatement brought with it nausea, persistent constipation (a symptom I hadn’t experienced before) and a general feeling of being drugged. I haven’t taken the meds regularly since reintroducing. In the last few days I have started to experience gradually worsening erectile function again, which I’m finding very concerning. I really don’t know what to do and feel my GP won’t understand my predicament as they’re part of a system invested in prescribing medication. My mental health is quite precarious right now and the idea of being ‘neutered’ to all intents and purposes with PSSD is not a predicament I can easily deal with. I’m worried that, having stopped the drug, my body has responded to the absence of meds and my brain and body has been irrevocably altered. Do I bite the bullet and take more meds, do I accept the situation and withdraw? Should I talk to a psychiatrist? I feel they won’t understand my situation and will push drugs. I’m not sure what to do and would appreciate help and guidance.

 

 Many thanks

 

Kieran

 

 

 

[Altostrata]

Welcome, @Kieran

 

We do not advise reinstatement of an antidepressant for PSSD, as most can cause sexual dysfunction on their own. If I were you, I'd back off from the reinstatement. Please let us know how you're doing. 

 

To help us out, follow these instructions Please summarize your drug and withdrawal history in your signature You may need to use a computer to do this.

[Kieran]

Thanks Altostrata. I know you have done some amazing work in this area. Thank you.

 

I reinstated as my GP advised me to do so when I was in crisis a few months ago. I went into hospital for a few days where I was required to take them and then received outpatient treatment, where again they were recommended.

 

Some of my symptoms diminished on reinstatement, then have returned in the last week or so. As a counter measure I started taking 25 mg sertraline every two days, and have taken one today. I’m in a bit of a bind, as my mood is pretty low and feeling quite vulnerable due to this iatrogenic harm and not sure how I should proceed. Taper slowly? I’m concerned I may experience withdrawal anxiety and depression again which would be hard to deal with…
 

Many thanks

 

Kieran

[Kieran]

Also, I have taken the medication for approx 16 years in total, albeit not significant dosages, and am worried the damage is long term. I’d really appreciate some positive recovery stories and some hope as feeling quite emotional at the moment. 

[Kieran]

Hello - I’m experiencing waves of despair at the moment. I cold turkeyed off Prozac, a 10mg dosage I was taking once every two weeks and now have PSSD. I am extremely worried I won’t get any recovery, which I find a devastating prospect. Is it possible to be reassured this is not necessarily the case? Thank you. 

[Altostrata]

On 7/27/2023 at 2:46 PM, Kieran said:

As a counter measure I started taking 25 mg sertraline every two days, and have taken one today. I’m in a bit of a bind, as my mood is pretty low and feeling quite vulnerable due to this iatrogenic harm and not sure how I should proceed.

 

How long have you been taking sertraline? What's been your dosing schedule in the last 3 months?

 

Taking it occasionally is not a good idea.

 

Please be advised that we do not treat "depression" or low mood here. It may be that you are experiencing these symptoms as withdrawal symptoms, as adverse effects of drugs, or due to your worry about the PSSD.

 

We have seen people gradually recover from PSSD, but as I said, if PSSD is your principle concern, I would not attempt to treat it with a drug that is very well known for causing sexual dysfunction.

 

Which symptoms got better when you brought in sertraline?

[Kieran]

thanks for getting back Altostrata
 

I’ve been taking Sertraline since the beginning of June at about 25mg. I had some relief from erectile dysfunction symptoms for 6 weeks on reinstatement, but they emerged again over the last ten or so days. In an attempt to counter this, I took the dose more regularly as thought it might help. Unfortunately PSSD symptoms have set in again, which I’m finding hard to contend with. 
 

I’ve noticed emergent leg pains again, which I’ve had for about 1.5yrs, throbbing regularly at the moment. In the last four days I’ve had significant insomnia, and feel very restless in bed. It’s early morning in the UK right now.

 

 I’m concerned that if I taper off the drug right now my precarious mood will be destabilised further. I spoke to my GP earlier today and they wanted to prescribe mirtazapine, which I declined. It’s a complex picture and hard to know which path to take. I understand Surviving Antidepressants are not able to treat low mood.
 

Think I just need some hope and compassion. 

[Altostrata]

Over the last month, what's been your dosing schedule for sertraline? How often have you taken it in the last 2 weeks?

[Kieran]

25 mg sertraline which I’m taking every other day.

[Altostrata]

If I were you, I'd take 12.5mg every day. Sertraline's half-life does not support skipping doses. You may be making your symptoms worse.

 

Please note 

On 7/27/2023 at 2:37 PM, Altostrata said:

We do not advise reinstatement of an antidepressant for PSSD, as most can cause sexual dysfunction on their own.

 

[Kieran]

Hello

 

I’m following up on an initial post in late July.

 

Since posting I spent a couple of weeks in hospital having been rocked physically and emotionally by a cold turkey withdrawal from 10 mg Prozac last August.

Grudgingly Reinstating sertraline at 25mg on the advice of doctors (who wanted me to take much more) had tempered some of the myriad withdrawal symptoms I experienced. Physically, I still have leg pain on a daily basis though it’s not as severe as it was pre-reinstatement.

 

Approx 8 months after going cold turkey on Prozac in Aug 22 I experienced total loss of sexual function, which returned at a reduced effect on reinstating with sertraline. I was so ambivalent and  resistant to taking the drug that I took it periodically and the complete sexual dysfunction returned.

 

 On resumption of sertraline again after being in hospital, some function had returned again but at a more impaired level than on first reinstating. 
 

I feel in a really stuck and uncertain place with regard to the meds. It seems if I stop the medication my body stops functioning and I can’t countenance this but also feel trapped on a drug schedule again. 
 

i guess my main question is if people have seen an improvement of protracted withdrawal symptoms having had to reinstate. Can my body heal while taking the drug again?

 

 Many thanks

 

 Kieran

 

 

[Kieran]

Hello

 

Just following up for some support /advice. I reinstated medication as detailed above. Following another crisis which led to a recent hospitalisation i was encouraged to increase to 25mg. The doctors wanted me to increase further and I declined.

 

 Over the last few days sexual dysfunction has declined again to almost complete ED again which is worrying me greatly. 
 

I have read that sometimes a reinstatement after stopping for a long time can produce brief improvement followed by a return to PSSD.

 

Reading stories of PSSD permanency is making me feel quite hopeless. I become fixated and struggle to stop catastrophising that I’ll never get better. 
 

Horrible thinking I’m back on the drugs which have caused so much turmoil to my body, brain and soul and I’m worried reinstatement is making things worse.

 

 Some positive thoughts and support would be greatly appreciated right now. 
 

Kieran

[Catina7]

Hi @Kieran, I'm sorry for what you're going through.  This site is the best place you can be right now, and you are not alone in everything that you're dealing with.  Below is a link that shows the other members here that are dealing with PSSD too.  I hope it helps you feel not so alone.  

 

https://www.survivingantidepressants.org/search/?q=pssd&quick=1&type=forums_topic&updated_after=any&sortby=relevancy&search_in=titles

 

 

[Kieran]

Thanks for your compassionate words @Catina7. Yes, this feels incredibly difficult and hoping I can feel the sense of community and to know I’m not alone as I know a lot of people out there are struggling with these issues. Hoping I can find the strength to negotiate this. 

[Kieran]

Maggie (@inneraura)

 

I’m so sorry to hear you’re in pain. I understand what it feels like and and am certain in time we will feel better.

Thanks so much for sharing - it seems there’s quite a lot of commonality in our experiences with medications. Exactly the same happened to me. I went through many months of tests for venous insufficiency, physio for the leg pain, x-rays for arthritis and many rounds of tests in hospital. I was definitely resistant to taking meds but if there was greater awareness and validation of this issue in mainstream care systems lots of us would suffer far less. 

I have heard of Angie Peacock and have watched a few of her videos online - she seems like a great person. I hope your coaching appointment goes well. Sounds like a really positive thing to do.

 

I so appreciate your message, it’s really reassuring to receive this. Reciprocating huge emotional support energy back to you.

 

Kieran

[Altostrata]

What drugs are you taking now, @Kieran? Please update your signature.

[Altostrata]

@Kieran please put questions and updates about your situation in this topic, do not start new Introductions topics. Thanks.

[Kieran]

Hello Altostrata

 

I have updated my meds on the signature. I’ll also stick to this topic for future posts.

 

I’m currently taking 25mg sertraline. The progressively worsening leg pain has diminished greatly since reinstatement so I can exercise (mostly walking) and getting back into swimming, hopefully without being in pain, or too much pain at rest. I do get throbbing sensations, soreness though. Sleep seems a bit better. ED has returned almost completely unfortunately. My mood is less agitated and anxious, though I still seem prone to emotional dysregulation more, quicker to anger than pre-withdrawal. Feeling emotional anhedonia though - far flatter than I used to be. Ability to plan is compromised as well as concentration. And range of emotion is more limited to sadness/flatness than being able to experience joy. Greatly hoping that my body and brain are able to heal over time. Guess this is going to be a long one…

 

have a good day all

[Kieran]

An update - since increasing to 25mg sertraline daily I’ve noticed increased numbness, both emotionally and physically. Find my self staring into space periodically. Bizarrely, for the first time the skin on my left foot has lost sensation. I’ve read testimonies from other SA members who’ve also noted such symptoms.

 

 It’s  a really strange feeling of disconnection from my self, just weeks ago I was agitated by evolving and emerging symptoms and now I feel totally apathetic to them. Like the authentic ‘Kieran’ is now in an awful chemically induced straitjacket. 

 

I decided, in consultation with a psych, to start taking 12.5mg daily - hoping for some improvement. All feels like a stab in the dark at this stage…Any thoughts or advice welcomed.

[Altostrata]

Emotional numbing and cog fog are common adverse effects of antidepressants. It could be that having gone on and off drugs a number of times and experiencing withdrawal syndrome, you are now sensitized to sertraline (as well as other psychotropics) and it is having an outsized effect on you.

 

We often see that people reinstate at too high a dose and need to reduce to avoid exaggerated adverse drug effects.

 

Is it your intention to continue on sertraline?

[Kieran]

Thanks for your reply @Altostrata - it’s not my intention to continue sertraline but I feel I need to stabilise somewhere as I think my nervous system is pretty vulnerable at this stage. I just don’t know which dosage gives me the best chance of recovery…

[Altostrata]

4 hours ago, Kieran said:

I just don’t know which dosage gives me the best chance of recovery…

 

What do you mean by recovery?

[Kieran]

Hopefully, just like you experienced, a gradual amelioration of symptoms over time. 

[Kieran]

Hello 

 

Sense of anhedonia, brain fog, memory issues, emotional numbness, apathy physical numbness ramping up over the weekend, even though I’ve reduced to 12.5mg in the last couple of days. I’ve reinstated for approx 3 months now. How quickly would it be recommended i taper down to a lower level and to stabilise for a while there? Thanks

 

 Kieran

 

 

[Altostrata]

Since you've been taking 25mg since June -- more than 30 days increases risk of withdrawal -- a 50% decrease to 12.5mg might be too much. You're in 10% reductions territory.

[Kieran]

Hello, thanks for your reply @Altostrata I’ve only been taking 25mg daily on a regular basis for just over two weeks, and even then I didn’t take it every day due to reservations. Would it seem feasible to stay on 12.5mg and see if it stabilises a bit? Thank you

 

 Kieran

[Altostrata]

2 hours ago, Kieran said:

Would it seem feasible to stay on 12.5mg and see if it stabilises a bit?

 

Yes. Please let us know how you're doing. 

[Kieran]

Thank you for your support @Altostrata

[Kieran]

It’s Sunday evening in London, UK, where I live. Red skies after a day of fine early September weather. And yet I’m feeling devoid of hope and as I read through other testimonies, and considering how long I’ve been on these meds, how I came off them and now back on, I feel this great sense of despair that I’ll never recover. My apologies for the pessimism but I feel a bit defeated at the moment. 

[Altostrata]

Very common in your situation, hang in there.

[Happy2Heal]

3 hours ago, Kieran said:

I feel this great sense of despair that I’ll never recover. My apologies for the pessimism but I feel a bit defeated at the moment. 

 

 we have all been where you are right now.

it's not a fun place

 

but you WILL recover.

 

when you're feeling this way, check out the Success Stories.

What helped me was to NOT look at how long someone's taper took nor how long they were in withdrawal,

that is different for everyone and is often not at all related to how long they took these drugs nor how many nor what their doses were....although you'd think that higher doses, more drugs and longer lengths of time on them would make recovery go slower, they is not always the case.

 

I had over 4 decades on all kinds of meds and probably was in withdrawal many times without even knowing it- instead I was told I had some new mental illness *groan*

Being put on high doses of SSRI causes such sleeplessness and frantic activity that I was diagnosed as bipolar, which is so common it would be laughable that drs don't get the connection- if it weren't so tragic

 

but anyway I digress!!

 

if you keep in mind that no one can tell how long this will take

and while it will probably be longer than anyone would like, it WILL be over

the best thing to concentrate your energies on is how to pass that time to be the best benefit for you.

 

it is hard work, I won't lie, but you can push the symptoms in to the background and start each day thinking about what you are grateful for (this is a good thing for ANYONE to do, it just puts you in a good place to start your day, thinking of positive things instead of the negatives)

and focus on what you can do.

 

keep doing things that you enjoy, in fact indulge in those as much as you can!

I was exhausted from severe insomnia, felt constantly in a state of panic, couldn't really eat much, had ringing in my ears so bad I wanted to cry and more, but I would force myself to get out and do things with other people... they couldn't tell how bad I was feeling nor how hard all this was for me BUT
I did it, and while at the time I didn't really enjoy a lot of this, it distracted me from what I was feeling.

I am SO glad now that I kept going and doing things and didn't just stay in the house and wallow in feeling bad because that wouldn't have helped (although there are times when wallowing is a good thing, you just have to put a hard stop on it and not stay in a pity pot too long)

I now have only the vaguest recollection of how awful I was feeling but I have a lot of photos and reminders of things I did and can look back and see that life kept going on and I was living it as best I could under the circumstances

I actually have good memories from during the worst of my withdrawal... which shocks me in a way.

The mind and our thoughts are quite powerful. Anyone who understands the placebo effect can figure out that you can use that very strength of our thoughts and beliefs to help us get thru pretty much anything

 

Keep your thoughts centered on the healing that your brain has already done and will continue to do, and the rest of the time, find things to distract yourself as you wait patiently for your brain to finish up getting back to where it was before all these changes were made

 

You are going to heal.
To get thru the tough times, there's tons of ideas for dealing with different symptoms on this site

 

and tons of folks who have been where you are now and who can commiserate and share tips and tricks

 

reach out to them if they don't come to you, they'll appreciate it and you may find that you can both give and get support here

 

and that's one way to distract yourself, right?

 

you're going to be fine.

the time will go by faster than you'd think.

 

hang in there!

 

[Kieran]

Thank you for reaching out, for your encouragement and support and your wise advice @Happy2Heal and @Altostrata. It’s hugely appreciated.

 

Music is a balm and a healing force to me, now more than ever, especially live performances. So I’m going to go to a gig tomorrow to continue to enjoy the things I love.

[Jools2816]

@Kieran hang on there and read all the info here on how to deal with this process. I have experienced anhedonia and emotional numbness for many, many years since taking AD, especially after escitalopram which is rather powerful.  Chronic fatigue and cognitive problems are something I battle on every single second of my life. Needless to say, it creates a vicious circle and motivation and rumination are constant. This is where I focus- how to break the vicious  circle and so things despite the constant exhaustion and motivation. I choose  small things , with small steps and I drop the expectations, giving special attention to small steps with the view to improve self care. It’s not easy work, maybe most ppl take it for granted, but to me it often seems a Titanic effort. I think however, that it pays off in the end. Did you consider seeing a good therapist? There are many suggestions here of resources, online groups etc. I really cherish the Inner Compass Exchange personally. Keep a diary to track your symptoms and activity- patterns are likely to emerge. I’m thinking to form a London support group and combine it with some things such as mindfulness. Let me know if interested. Warmest wishes! 

[Kieran]

@Jools2816 I really appreciate your reaching out to me. Thank you for sharing your experience. And also for your words of encouragement, support and advice.
 

I like your take on breaking the vicious cycle of rumination (which I very much identify with) with even the smallest steps of self care. 

 

Luckily I’ve managed to find a good therapist and had a good session today which allowed me to grieve some of the losses. It’s a trauma informed therapy based on internal family systems and parts work. 
 

The inner compass exchange looks really great. I’ve watched interviews and talks online of Laura Delano and she spoke really eloquently around issues of iatrogenesis. 
 

I’m going to try to more closely track my symptoms too with notes/diary. Things seem to merge or are easily forgettable so getting this clarity is a sound idea. Thanks. 

 

I’d definitely be interested in joining a London support group if you’ve got plans to start one up. It sounds like a great idea - I’m keen on mindfulness and meditative practices too. Do let me know.

 

@Jools2816 - heartfelt thanks again. It means a lot to feel your support and  connection. Keep in touch.

 

 Kieran

[Jools2816]

@Kieran with greatest pleasure Kieran. ❤️We do need all the support we can get and to be extremely generous with ourselves even when we feel we do not deserve it. So glad you see a therapist, I love trauma-informed therapy, to be honest, if we accept that trauma symptoms are a relieving adverse events as if they happen in real time with the presence of emotions in heightened  form and ,what ai call  mini- flashbacks (visual and metal images of the event/situation ) for many people, especially the ones who have a lot of accumulated adversity, a diagnosis of trauma would not be inappropriate! Surely WD  is traumatic. Please feel free to message me too if you want, I will start working on that group.I posted here to ask for interest, but got no reply at all. I wonder whether it reached people- I’m still a bit confused with navigating the site. @Altostrata @getofflex, do you have any suggestions on how to reach the UK and London folk as nobody replied to my post re support group. It might be nobody wants but I doubt it. Many thanks. 

[getofflex]

I'm not sure, no.  You might check the intro section, and see who is from the UK, and  reach out to some of them.