SomethingAnonymous: My (very long) story with antidepressants - I just needed to write it down and tell someone what has happened to me!

[SomethingAnonymous]

I apologise for the self indulgence of this but I'm upset at the moment and really wanted to just tell people about everything that's happened to me - it's a really, really long story. I appreciate its very TL;DR...

 

I've been on and off various antidepressants since I was 14 - so for most of my life. These have included SSRIs, SNRIs and mood stabilisers. By age 27 I had decided I no longer wanted to take any medications for my presenting condition, which at that point was anxiety. I felt that the years I'd spent on medication was "lost time" because the emotional numbing effect of these drugs promotes a kind of apathy - because I didn't care about anything, I didn't do anything and so my life would wither around me.

 

Every time I came off them I would look at my life - now able to feel the emptiness of it - and feel motivated to be proactive and improve it. My social life was better when I wasn't on medication, my memory was better when I wasn't on medication, I was more productive when I wasn't on medication. A very clear 'boom and bust' pattern had emerged in my personal history where when I was unmedicated I was a whirlwind of activity, taking positive actions to improve my health, and when I was on the pills I sat inside in my pyjamas.

 

Another pattern was clear too - every time i weaned off my pills, i would leave my unfulfilling relationships with boyfriends because I could no longer tolerate the loneliness. I would look for something better. On pills, I just stayed, and those relationships over time would erode my self esteem.

 

With all this evidence behind me, I decided none of this was worth it and I'd rather just learn to live with the anxiety. 

 

A couple of months after deciding I would never touch another pill, I woke up feeling something I hadn't felt since I was a teenager - a voracious sex drive! It had been so long since I'd had a libido that I hadn't realised it was gone and I found myself now constantly interrupted throughout the day by thoughts and fantasies about sex. My pleasure in sex also increased and my orgasms improved. My vulva even changed, appearing 'fuller' with increased lubrication, as if the bloodflow down there had suddenly increased. Initially I worried something was wrong and consulted my GP to ensure this swelling and wetness was not an infection, but everything was normal. This was just how I was *supposed* to be.  I enjoyed this sex drive and pleasure for four years. 

 

Unfortunately, during those four years, my mental health snowballed. I developed severe panic disorder with agoraphobia. I was determined not to take medications so I tried everything else - therapies and self help, anything I could do to change my thoughts and feelings without a prescription. By age 31, now mostly housebound for two years, I gave up.  Although the first two years of my unmedicated life had been more active and fulfilling, it was now the illness rather than the medication that had trapped me inside in my pyjamas. It was time to choose the lesser evil - Sertraline. 

 

A few days later, towelling dry after a shower, I realised I couldn't feel my genitals. Initially my drive for sex - which had continued to be high throughout my illness - remained and I was in the frustrating position of feeling an urge to satisfy that need and no longer being able to because my clitoris was completely numb. I was about to throw the pills away when, almost overnight, something amazing happened - the panic attacks stopped. I could go outside. I could do anything now. I booked a last minute flight to Portugal and went on holiday!

 

Now came a tough decision - life, or a sex life? That probably doesn't sound tough to most people but when you've been trapped inside your house for years, your sexuality becomes very important to you. There's a window in every day where you feel excitement and pleasure, where you feel alive again. And frankly, one of the big motivators to get back outside was to have sex - something I now couldn't do! I was upset, but I told myself I was being silly. Of course it was more important to go outside than to masturbate! And it was only going to be temporary - I told myself that the moment my life was back on track I'd lose the pills. 

 

I quickly met a man and started a relationship of sorts, but it was an odd experience. I had no idea if I liked him; I just couldn't tell. I'd speak to friends and try to work out logically if he were a good fit for me but there was no emotion to act as a compass. I felt nothing - about anything. The sex, now that I had lost all feeling in my genitals, was like a prolonged smear test. I still had sexual urges - although I didn't know if I loved him, I definitely found him sexually attractive - but once we got started it was like my mind and body were completely disconnected. Nine months after starting sertraline, with panic attacks completely resolved, I decided the only way to know if I even wanted to go out with this guy was to find out how I felt without the pills. 

 

Weaning off was initially like weaning off any psychotropic drug. With each step down I had vertigo, electric shock feelings in my nerves, insomnia, agitation, intense emotions that came out of nowhere. I'd been through this a million times before so I continued with the scheduled taper, knowing a couple of weeks after I hit 0mg I'd feel fine again. But 48 hours after I took my last pill, chaos broke out in my body and mind. It was by far the most extreme experience I've ever had in my life. There were 1 million thoughts racing through my mind but I couldn't catch any of them. I had the bizarre feeling that I was thinking very obsessively about something but I had no idea what I was thinking about. The vertigo grew intense and I started vomiting. I would continue vomiting for the next three weeks. An excruciating and unrelenting pain developed in my gut. It felt like an emotional anguish, but what about? I didn't know.

 

Unable to look after myself, a friend took me in. We had a long conversation about the biggest thing in my life at that time - I'd realised I definitely didn't like this boyfriend and I was leaving. "You should just tell him exactly what you just told me" my friend said, and i suddenly realised I had absolutely no idea what I'd just told her. I knew we'd been talking for hours, but I couldn't remember a single word. I felt very confused.

 

I decided not to make any major decisions while I felt so chaotic so I didn't immediately break up with the man. Over the course of the next few weeks, strange things would happen. I would come around half slumped on his bed to him shaking me and pleading with me to wake up. I had no idea how I'd got there or what had happened. He would report back to me that I screamed in the night - a blood curdling scream, he said, but I had no memory of it. The confusion got worse and one day I couldn't speak. I just couldn't form words anymore, like where my mind used to be was a big blank, white space. My boyfriend took me to hospital where a doctor said he'd make sure I was referred for therapy and perhaps in the meantime I could join a choir.

 

I went back to the GP and asked her to give me anything but sertraline. The strange thing was, despite every painful and extreme experience that was happening to me, my sexual function was great again and I didn't want to go back to that numbness. The doctor prescribed Prozac, which made everything worse, and a week later I gave in and took Sertraline. 

 

The symptoms vanished in less than a week - no more vomiting, pain or cognitive confusion - but my genitals disappeared with them. I left my boyfriend, which initially made me feel happy and motivated, and I told myself I'd give my brain a break before weaning back off the meds. Not long afterwards, the pandemic hit. I wasn't going to have sex anyway, so why go through discontinuation? When lockdown ended, I realised i had no sexual or romantic feelings anymore and was struggling to find a partner. I was now 35 and wanted to have children, but dates led nowhere. I couldn't feel a thing.  I phoned my gp and started weaning down. Afraid of discontinuation syndrome, I took it very slowly and weaned over about 18 months. 48 hours after my last pill, vertigo emerged and I started vomiting. I vomited for six days but there were no cognitive symptoms so this was fine by me.  A day or so after I stopped being sick, I put music on in my car and it was like I was on ecstasy. The sounds were thrilling, my brain was lighting up, I felt completely alive. But my genitals were still numb. 

 

After a couple of weeks, I started to panic and went online where I found out about PSSD. But every forum I saw helpfully stated that if you have been off the pills for less than six months, don't condemn yourself to PSSD. Go out, forget about it, it'll come back. Reassured, I did exactly that. 

 

About nine months after discontinuation, I felt a change in my brain. I felt intense emotions, I felt alive, I felt motivated to do hobbies I'd dropped years ago. I started to think about sex, but when I did I felt nothing. My clitoris is almost entirely numb, my vulva feels dry and shrunken. But my ovarian function has been tested and is fine - neither do I have any of the other conditions that can reduce oestrogen (such as thyroid disease).

 

It's now been a year since I stopped sertraline and my sexuality is still as it was when I was on the pills. I feel old and past it, like I'm 87, not 37 . My doctor is being fantastic. She's investigating every possible physical angle. I haven't told her yet that I fear it might be iatrogenic. We're currently approaching it like a coincidence - at some point during the course of treatment, something else happened that caused exactly the same symptoms as the side effects of the pills. Something about this feels desperate and delusional.

 

I worry that I'll never feel that sexual urgency that I once did and that I might never enjoy sex or masturbation again. It's a devastating thought, but I don't want to tell myself this is permanent without evidence. It could still be temporary, and I want to act as if that's true. 

 

If you read that far then my God you're a hero - thank you!

[LotusRising]

@SomethingAnonymous

 

Welcome to SA,

 

Could you please help us out by creating a signature? How to Create a Signature 

 

I'm sorry to hear that you've had such a long history with these drugs. It sounds like you've no plans to go back on medication? 

 

There are definitely others in the forum experiencing these same symptoms. You might do a site search to try connecting with them.

 

Have you seen this thread:

 

Please continue to post updates and questions right here in your thread. If you are looking for information, please reach out.

 

Once again, welcome  

 

[SomethingAnonymous]

Thanks. I have updated my signature to the best of my memory. 

[SomethingAnonymous]

Feel like these are just going to be updates of me worrying. 

 

Spent the evening worrying about my emotional symptoms for a change - just flatness, kind of constantly craving some kind of feeling.

 

Then tonight unexpectedly started to feel better in two ways - my emotions felt a bit 'richer' (kind of difficult to describe) and I could feel a nagging arousal in my clitoris, which has become more sensitive to touch.

 

This should have perked me up a bit but I can't stop myself from focusing on the things that haven't changed and worrying about those instead. 

 

I've tried to convince myself I have as much evidence that what I'm experiencing is temporary as I have that it's permanent and that constantly thinking about it definitely won't help. Tomorrow I'm going to try diffusion techniques to stop the thoughts from getting to me quite so much. 

[SomethingAnonymous]

Subtle changes this week such as

 

- being able to get excited about a night out

- feeling "younger" - I think this is less fatigue and more alive

- caught myself skipping on my dog walk today

- colours are intermittently bigger and more beautiful

- I have felt social urges to connect

- genital sensitivity is higher (it is now possible to feel enough without using a device)

 

Definitely not back to normal but so much more hopeful. 

[SomethingAnonymous]

Woke up feeling impatient. I'm so ready to get back on with my life now. 

 

Feels sore and strange down there.

[SomethingAnonymous]

Have had an extremely emotionally dysregulated day but I'm finding that oddly comforting. This morning/ early afternoon I was primal screaming in my car, but then I met a friend and felt numb, then slowly came to a point I could talk about my feelings, had a minor cry, then felt much better. Have been easily tearful since. It's not like me (historically) to be tearful at all, which earlier this year when I was worried about early menopause I was finding frightening. I had a couple of moments of anxiety today because extreme emotions were accompanied by temperature dysregulation but now we've done all the bloods tests and I'm where I should be for my age (30s) so I know it isn't that. I think my brain is still just getting used to the new normal, even after 19 months. 

 

Day on day I'm feeling more and more like the person I was ten years ago and I think a lot of my anguish has centred around feelings of grief for the last decade. Ten years ago I came off ADs for the first time in eight years and experienced something similar to this but faster and less extreme. But the drugs I was on back then were not quite as numbing as sertraline was for me and I had been informally tapering almost since the start because I kept reducing my dose. I think I will feel like I did back then soon and I will have all of me back again. It's just going to take longer because my brain has more to recover from. 

 

What really set me off this morning was seeing a post on Instagram from someone I knew ten years ago and all the memories of that time came flooding back and remembering who I used to be felt like such an enormous loss. I think I can still be me though. I can reconnect with that. 

[SomethingAnonymous]

I keep feeling more and more like myself but it's difficult to describe what that feeling is exactly - a kind of reconnection, maybe.

 

One thing I'm definitely noticing is that I feel more awake. I was very groggy for a number of years and recently when I wake up in the morning I feel properly awake from the start. I also have a lot more energy than I did before. 

 

PSSD wise there has been no significant change but I feel a lot more hopeful about it. I think because I'm noticing an overall improvement in how I feel then I suspect it's just a matter of time before that comes back too. 

[littlebird]

10 hours ago, SomethingAnonymous said:

I keep feeling more and more like myself but it's difficult to describe what that feeling is exactly - a kind of reconnection, maybe.

Reconnection is a great word for it, love that. I'd been thinking lately how I feel like I did before being put on these decades ago - I feel like the kid who got told how much potential they had, before meds made it hard to concentrate in school.

 

10 hours ago, SomethingAnonymous said:

One thing I'm definitely noticing is that I feel more awake. I was very groggy for a number of years and recently when I wake up in the morning I feel properly awake from the start. I also have a lot more energy than I did before. 

Being less groggy is such a win, and I'm sure my central nervous system is appreciating much much less tea it takes to wake up in the morning before I can start my day. I've talked with people on here about how colors seemed brighter at various points in our WD, too - it's a wild experience coming off these.

 

So glad to hear you're feeling better! 🥳

[SomethingAnonymous]

Thanks for the support @littlebird!

 

Hope you're feeling better too.

 

I'm feeling a bit rubbish today. I still have libido so I often wake up mid fantasy and it sets me up badly for the day as it's something I want but can not (yet?) have. I worry constantly that it's my age too (38, just turned) and that maybe I'm just too old for sex. I had started to get over that anxiety but it's back again. Everything just feels quite dry and shrunken down there as well as there not being any feeling or arousal. Discharge has gone missing, periods - though fairly regular - are a bit weird. I worry every month that I'll ovulate too early....a lot of this connects with other anxieties in my life. I wanted children and I probably won't have them now. I don't feel that I'm young and attractive anymore - like I'm passed it and invisible. But then I don't think I'd be worrying if I still had function/ feeling. Maybe it's the feeling that without function and all this numbness I have become sexually irrelevant at a time in my life when I want to meet someone and ideally start a family. I feel cast out.

[SomethingAnonymous]

Really looking forward to getting better and can't wait to have function again. I think a lot about how it used to feel and swing between despair because it's such a drastic loss of function that sometimes it feels unbelievable I could ever feel like that again, to excitement at the possibility I *will* feel it again. 

 

I think I really took sex for granted before I took Sertraline and when I get my body back I'm never going to take it for granted again. 

[SomethingAnonymous]

Really struggling today. I'm trying my hardest to keep my mind off it and let it come back naturally but I feel like I need reassurance that that's definitely going to happen. Since I started sertraline (and continuously since I removed it) I haven't been able to experience emotional attachment with friends or boyfriends either. I feel like I'm trapped inside a dead body. Like, my mind is still there but my body is a corpse. 

 

I've been making all kinds of changes to my life this year to try and make it more exciting and more interesting and meaningful to me, but I'm still not really feeling anything. I switch between feeling like I'll never feel again and planning to end it, to thinking maybe I will wake up and relinquishing those plans. I have asked for mental health support but there is none available currently. 

[SomethingAnonymous]

Is there anyone here who can reassure me?

 

I keep remembering how it used to feel to be with a man and the gulf is so enormous between what I could experience then and what I can experience now. It's been seven years since I could have sex and I'm only in my 30s. I just need someone to tell me this will come back 100% and I haven't ruined my life taking these pills. I feel completely desperate. I just need to hear that someone else had zero function and then it came back to how it used to be?

[Gonzo]

Hi, I'll try to read your post and answer later after I know more about your story.

[Gonzo]

So, I relate with things that you said, I have a friend that also suffers from PSSD, the thing is that some ppl recover from it with time and doing certain things, maybe I'll ask her about it, she seems knowledgeable about the subject.

 

What's your main concern rn? It's sexuality? Not being able to form a family? Or other things?

[SomethingAnonymous]

Thank you so much!

 

Right now my only concern is being able to have sex again at some point in the future. I always knew there was a possibility I would not have a family so I've assimilated that to some extent, but not being able to have sex had been an enormous shock and I feel completely bereft to be honest. I was lucky to have a very good sex life before the SSRIs and it's just not something I feel human without!

[Gonzo]

Well that sucks a lot. Like it didn't improve at all since you quit? I assume you are suffering PSSD then.

[SomethingAnonymous]

I think I have a bit more sensation but nothing very 'useful' if you see what I mean. I've been trying to celebrate each improvement, no matter how minor, but then I'll be hit by memories of how it used to feel and then I'm like "who cares if it's 1% better?" 

 

I think the big thing is that I'd like to be able to be with a man "naturally" - like not using lube and a vibrator to force it. I don't really like the feeling using the devices and stuff - it still doesn't really feel like sex because it only forces feeling into the clitoris and not the vagina. Yeah it's PSSD. I think there are emotional changes too because I used to get attached to people quickly and now I don't care at all. 

[Gonzo]

Damn, really sorry to hear that. I also took Sertraline and it was life shattering in the end. My only sexual side effect that I could notice was delayed eyaculation but became a problem when I had sex, in fact it's the main reason why I stopped taking it 4 years ago. Really disgusting drugs.

 

I'll ask that friend of mine about PSSD, maybe she has something useful to say about it that I can share with you.

[SomethingAnonymous]

That would be amazing, thank you!

 

Sertraline is such a horrible drug, I can't believe I took it so long, but then I really had no way of knowing this would happen to me. It's ***** up my relationships so much too because it's so difficult to be on the same page when they're having sex with you but you're not having sex with them. It just sets up this weird dynamic and I end up feeling really jealous and resentful that they can still experience that. I'd love to just go back to normal one day. I'm really hoping maybe this is at least partly depression.

[Gonzo]

Yeah, it is awful. Would you mind if I DM you?

[SomethingAnonymous]

No of course, go ahead!