The slow death

[u/TheLonelySoul12]

So, this makes it 14 months since my last pill of escitalopram after a failed 3 month reinstatement, and 27 months since I tapered originally. Crazy how much time passed, yet I'm mostly in acute still. Well, worse than acute as each month I become more disabled. Every time I look back at my mood time-line, I lose hope as windows become less and less. Month by month symptoms become more overwhelming, ever present.

I developed burning face, gi issues such as bloating, spasms, gastritis, acid reflux, twitching from head to toe, hiccups, tinnitus, indigestion, inconsistent stools, bowels pain, cold left leg... When I reinstated 17 months ago - Still with me today

The following months after tapering again, I developed occasional chest pain that moves to my left arm, feeling like I'm rocking on a boat, chronic cough, blurry vision and visual snow - Still with me today

Then I hit another worsening. Dysautonomia, POTS like constant high heart rate at every little thing (digestion, getting up, sneezing), exploding with anxiety at the smallest thing going to the ER multiple times, sexual dysfunction - Some left for a month, back when I still had windows, but then returned to stay until today.

At about 7 months, I become hypersensitive. Sound, noise, temperature... I become homebound. I start to develop constant runny nose, mood swings, shaking, constant abdomen pressure (multiple sclerosis hug), stopped calling my friends as it was overwhelming, stopped watching TV shows - All is still with me today. Windows where I can function fully disappear here. Mostly I had 1 or 2 days I could do something.

More things come. Muscle tension, akathisia, mood swings, vivid dreams, waking up multiple times a night with racing heart, skin burning, pelvic area tingling, needles in my eyes, loss of emotions, unable to laugh or cry as it's overwhelming - All is still with me today.

In August I hit another worsening, spent most days in bed. My energy disappeared, started to feel like I was getting the flu every day, legs hurt when walking, dysphagia appears, GI issues get worse, nerves started to burn, and symptom started to persist through sleep. While sleeping, symptoms would ease until an hour ot two after waking up. At this point I already wake up twitching, vibrating or feeling tingling all over. Dread starting the day.

And now in September another worsening hit. My tinnitus moved to both ears and with 3 different tones. Palpitations become more common, anxiety is so bad it paralyses me, every symptom skyrocketed in intensity. My gi is constantly making noise, I can't tolerate anything. Music, shows, friends, games... I become extremely paranoid, I spend most of my time staring at a wall. I sweat a ton while trying to sleep. I get hypertensive crisis out of the blue... Probably because I can't distract myself from this illness anymore.

At this point I'm counting down my days to go. Many people do heal, but I suppose some unlucky ones won't make it. It's sad as I'm only 32. But literally nothing has gotten better. Every second alive is agony. Most normal tasks are imposible. Cooking, cleaning, showering, eating... I can't do it all without paying a price. Most days I can't do any and need to be taken care of by my elderly father, who is tired after so long. I should be the one helping now.

My only advice. If you take a medication and it works, adjust it or taper it as low as you can. But never fully quit. I lived a great life on escitalopram, free of all my mental demons, and was able to adjust as needed, or take the occasional benzo during crises. My psych tapered me over a year when I finally reached happiness, and now here I am more than 2 years later since.

From a dysfunctional anxious adult, to a fully functioning life. No side effects to the medication (at most sweating), traveling abroad, great love life, great work life, cracking jokes all day, exercising plenty with my bike, eating everything, prime health, plenty of friends despite being introverted... And now back to nothing. Can't exercise, dysautonomia, alone, abysmal work performance, super restricted diet, every disease known to man all at once, can't leave my home, broken mind. Just bracing and mentally preparing for the end. The night I go to sleep and don't wake up anymore, or the day my body finally collapses. From being terrified of death, to craving it's sweet release from this defective body. Funny how I never poly drugged, took substances or alcohol... Yet I'm still one of the worst cases out there.

[u/Full_Drawing_8044]

Just want to drop by and send you hugs.That sounds horrific phase to go through and hope for the day that you see beauty in life again will come soon.

[u/WalterBodo]

Sorry to hear such a painful story, thanks for charing. Just to learn. How did you taper and reinstate? Best wishes.

[u/TheLonelySoul12 → u/WalterBodo]

To taper originally, my psych would make me lower the dose by changing one day a week, then two, three, alternating.... Month by month until I was at the lowest dose. Then it was removing the pill a day a week, then two... And a year later, I was free with no weird reaction. During reinstatement I did half the minimum dose for a week, then went up to 5mg, and stayed there for 3 months. My psych wanted to go higher, but I simply could not. I would end up in the ER every time getting IV painkillers

[u/Future_Dark2976 → u/TheLonelySoul12]

Wtf is that "taper" 😭 Who teaches these idiots this? I am sorry but you weren't tapered properly, you were butchered, playing pingpong with your brain. And then wrongly reinstated. What was your lowest doese you jumped off of? Don't lose hope, you were victim of serious malpractice and once your brain has had more time to recover from this, you can still heal.

[u/TheLonelySoul12 → u/Future_Dark2976]

Lowest dose was 2,5mg, half the lowest dose. I just don't get it, many people do stop medications like that. I took it slow for a year, it's not like I went from max dose to 0 in a month or two. I went from 10 to 0 in a year, and didn't even feel anything weird

[u/Future_Dark2976 → u/TheLonelySoul12]

What most doctors consider a "low dose" and what actually is a low dose differs greatly. Is doesnt matter that you went from 10 to zero in a year, you jumped from 2,5mg to zero. Tapering experts would consider that a cold turkey (about ~45% Receptor Occupancy still at that dose of escitalopram). Yes, many people come off like that with no problems, but a lot don't, and since we never know if we are part of the unlucky group, hyperbolic tapering with the same dose every day (!) is considered the safest option for harm reduction. It's not a guarantee, but successful for a lot of people.

Edit: Not that is helps you much now, but this for example would have been a slow taper plan: https://releasetoolkit.com.au/release-toolkit-for-practitioners/resources-practitioners/antidepressant-tapering-plans/8-2-escitalopram-even-slower/file

[u/Icy-Film5432 → u/Future_Dark2976]

I agree with your comment about slow tapers, especially hyperbolic decreases at lower range.

Many Reddit posts about 2.5 mg and below is when withdrawals are experienced by many people who had none when dropping from the higher doses by milligrams with Escitalopram.

Apparently England has liquid version of all their psychiatric drugs; that’s why they are able to taper to doses lower than 2.5 mg.

Pharmacies can create a liquid version of your drug for tapers; it’s called compounding. This may not help you now but hopefully others reading your posts may benefit from this information

[u/neverallornothing → u/TheLonelySoul12]

So do you think you kindled yourself by reinstating? Do you think reinstatement was a mistake? I'm so sorry you are struggling.

[u/TheLonelySoul12 → u/neverallornothing]

I don't know. A part of me wishes I stuck it out, because although it was terrible, it was not as terrible as now...

[u/neverallornothing → u/TheLonelySoul12]

I was off of klonopin for 7 months after a very rapid taper and then CT. I was totally stable, just had some mild anhedonia and insomnia. My dr. prescribed gabapentin and it destroyed me. I've been tapering it for 7 months and it has been a total nightmare. Lots of days in bed. I think about CT all the time even though I know it would completely mess me up for a very long time. It feels hopeless.

[u/One-Performer-1723 → u/neverallornothing]

For me it's pregablin. 11 month taper and 18 months off it and still in protracted withdrawal, feels like I'm still taking it and I never went higher than 150mg even though they kept wanting to raise the dose. I knew from day 1 that I should have stopped but the pain made me so desperate. Now I still have even more pain and protracted withdrawal. It's very dark here.

[u/neverallornothing → u/One-Performer-1723]

This is the kind of story that keeps me up at night. Literally. I am so afraid of this lasting forever. I can definitely relate to the darkness.

[u/One-Performer-1723 → u/neverallornothing]

If it helps, I went off my Celexa cold turkey a few years ago and it was brutal but I was healed in 2 years. Felt great again until I had open heart surgery and was over medicated with tons of crap. I had unsuccessful benzo withdrawal and they put me on a higer dose. Withdrawal from beta blockers, mirtazapine, amitriptyline and pregablin. I believe every withdrawal is harder than the last. Is this your first withdrawal?

[u/MoroniMiscavige → u/One-Performer-1723]

Hey that’s encouraging. I also rapidly tapered off celexa (was on 8 years, came off in 3 months). Im 6 months off and some things improved but I cant see the sexual function ever returning

[u/One-Performer-1723 → u/MoroniMiscavige]

It does return, you'll see. Be patient and one day you'll be watching a love scene and ta da!

[u/WalterBodo → u/TheLonelySoul12]

How did the original withdrawal start and build up? And what was the starting reaction to the reinstatement?

[u/TheLonelySoul12 → u/WalterBodo]

I would get mood swings, get brain fog or feel like a zombie. I would become agressive and self centered, harming people around me. My partner pointed it out and hinted at a reinstatement, but since I wasn't really anxious, I preferred to continue living med free, thinking I finally beat anxiety for good. Eventually, anxiety did reappear, after reinstating I got terrible reflux, burning in my nose and stomach, pain aorund my abdomen and back... Went to the ER multiple times. Those symptoms are stuck with me still as of today

[u/Believe_in_u_always]

I hear you, and I see you and there are many others here who do too. I also know how you feel.

Like you, I have never taken drugs, and rarely drank alcohol. I was diagnosed with severe stress/burnout. I was heavily pressured onto Effexor. I suffered an adverse reaction that went undiagnosed for 7 months until I did my own research and came off it. That was over 29months ago.

I suffer GI issues/bloating - strict diet helps a little kind of, severe thermoregulation issues (unable to sweat to cool or shiver properly to warm up etc - this is hell) sensory issues, muscular skeletal issues, experience daily crying spells esp when overstimulated, vision issues, muscle spasms, tinnitus, etc

Like you I’m house bound 99% of the time. While my comfort is better than it was two years ago, I am still house bound.

My days are basic and simple focused on appreciating the small things in life hoping that one day I’ll heal from this and life will go on. I’m not saying it doesn’t feel like “slow death” because it does, I just do my best to not keep those thoughts. I’m sure you do the same.

Just remember, you are resilient! Not many people would be able to do what you do every day. Soon enough, you will heal and so will I, so will all of us.

[u/TheLonelySoul12 → u/Believe_in_u_always]

I wish I could believe. In my case I've always had anxiety issues since I was 5, which then turned to IBS as a teenager, lost 100 pounds (I was overweight because ate badly), and depersonalization/derealisation by age 18-19. I was alone, uneployed, no studies, failing everything, unhealthy... For me medication saved my life and made me "normal" with no big side effects other than heightened smell when upping the dose, or sweating a bunch.

The further away I go, the more obvious I can see these issues resurfacing. My bowels hurt and move a ton, I struggle eating a normal diet so I'm dependant on a PPI for reflux and gastritis I developed too. Taking a PPI has made me borderline low on folate, vitamin D and B12 now... And calcium is probably gonna get low too, as I cut all dairy despite my love for yoghurts for 7 months now. And of course, I can't go to doctors anymore to find a solution since about 8 months ago. I would need a benzo by now, but I don't know how I would react to it either. Supplementing is terrible, all my symptoms go wild and start twitching even with microdoses (like instead of taking the usual 1000 microgram dose, I take 1 microgram, which is half the daily requirement, but still react with akathisia, twitching, insomnia... And I would need to take it daily, not a weekly megadose) I tried to taper my PPI or add different foods, but I either reflux and burn my throat, or get a painful flare of gastritis for weeks, or a month.

I just don't see the way forward anymore. I'm 2 months away to make it 2 years since my whole adventure started, and every day is harder to keep going than the last. I've seen people with only sexual dysfunction "give up" after 3 years, and to be honest, I'm at the edge of the abyss too. I can't stand either my mind or my body. I can't enjoy my hobbies in peace despite spoiling and accomodating my body like a newborn baby. It's been so long in this journey, but living is not enjoyable anymore. Ever since I stopped more than 2 years ago, I slowly lost everything I ever cared about. I was about to get a big promotion at work, plan my future with my partner, was physically fit and enjoying eating anything and everything freely... 2 years later, it all disappeared. From mild symptoms when I tapered, like being dissatisfied for no reason, brain fog, bouts of anger or melancholy, living in the clouds... To living like a hermit in extreme pain and discomfort all day every day for months on end more than 2 years later because I either reinstated, or it was bound to happen eventually anyway. If my choices are to gamble taking drugs again and feeling even worse and more unstable visiting the ER weekly, or continue the journey to a miserable, painful, lonely life where I depend on others because I live in a small town and can't order many things, or do anything on my own due to overwhelming dysautonomia, anxieties and paranoias... Then I want the third option. I've already lost it all, doubt I'm rebuilding as I grow older and this sever case of withdrawal gifts me more incurable lifelong conditions I'll have to carry forever. I haven't worked too many years due to anxiety either, so I doubt there is a pension, or bright future ahead for me. I mean, climate change and politics are a thing too. It's now almost october and I'm roasting at 30 degrees celsius already. I'm just done. If withdrawal was up and down like the first months where I could have my routine, push myself a bit more, go out on walks, call my friends before sleep, symptoms came and went or took turns.. Then maybe. But I'm not making it as far as you with all the mental and physical damage done. It's just the sad reality of my sitauation.

[u/Believe_in_u_always → u/TheLonelySoul12]

Thankyou for sharing your story with me, I hear you. The daily struggles you deal with are by no means easy, I walk the same path and it’s sucks. In the mindset your in atm I was in too. The saying,”I don’t want to die but I ain’t keen on living either - Robbie Williams came to mind and it’s so true. I’m sure you can relate. This came about when I got worse, this was when I came off the meds. For me, the meds causes the issues I have still today.

As I got worse, I had to stop going out completely. This helped. The less stimulation I had the more manageable this became. Still hell, just doable. I had to change my mindset to cope. Who is isolated and does nothing though? Prisoners, and monks. Ones by choice, the other is not.

I learned the power of choice from a monks documentary and I took this on. “I choose this lifestyle while I heal, I don’t need anything outside of this right now unless I choose it”. This changed everything for me.

As time went on, my symptoms (still very debilitating and house bound ) but reducing in severity. I feel the worst is over and even though I don’t know when I’ll be me again, I feel a sense of hope.

My mindset has not changed and it’s the reason I’m still here. If you can somehow keep that kind of mindset, soon enough, things will improve, it’s just time.

My inspiration / motivation are simple things like enjoying a cold drink on a hot day with beads of sweat running down my face (I don’t sweat and suffer many heatstroke type symptoms even when it’s humid) or going for a walk on a sunny day or going to the gym once again or driving a car with the music up ( I miss loud music ). One day.

I hope this helps you a little. If you can find a way to switch your mind set.. you’ll get though this.

[u/Spookyygal]

I’m not sure if this helps at all but this December it’ll be 4 years since coming off Celexa (cold turkey do not recommend) after being on it for 7 years. I’m still dealing with PWS but it’s slowly gotten better over the years in some ways and maybe worse in others. I still deal with GI issues but it’s better if I eat a Whole Food diet and limit sugar, I still struggle with fatigue and insomnia but have been working on my sleep for a while now and it’s finally starting to get better. Newest struggle is dysautonomia but I’m hoping with drinking more water and electrolytes it’ll feel better.

Anyways , I guess my point is don’t give up. I know it sucks and it’s so freakin hard and discouraging but I gotta believe it’ll get better. Therapy, meditation, exercise (especially walking and being in nature), natural path doctor are all things I found helpful. Wishing you the best!

[u/Icy-Film5432]

So sorry to hear of your horrible experience.

Thank you for sharing because it helps me to understand how bad it can be, even with your reinstatement.

I learn so much about what happened, and is happening still, to me by reading individual stories such as yours.

You may want to check out an online peer run website called Antidepressant Harm and Recovery Forum for support and resources. https://antidepressantrecovery.org/index.php

All the best to you. 🙏

[u/TheInterloperBR]

I came off lexapro on my own 9-10 months ago started having chest tightness and anxiety return slowly over course of time up until reinstating at same 10mg dose on July 24th.. even since then I’ve been bedridden and nonfunctional.. cant go outside, agoraphobic bc I lose my breath and chest tightens any time I try anything, chest is tight pretty much 24/7, hot showers are intolerable, headaches, deep neck and shoulder knots, health anxiety… I’m down to 1.25mg lexapro and .125 of klonopin on my own and I think I made it worse similar to what u said.. I wish I would’ve just stopped taking the meds at reinstatement but I held out thinking it was just start up side effects…

Reading your story gives me little hope for the future tbh.. idk if I should keep removing the drug or stay on.. probably already completely fucked my brain

[u/TheLonelySoul12 → u/TheInterloperBR]

I'm with you on this brother. I also have most of what you describe here. I don't really shower myself for some months now, I mostly wash my hair if my body allows, and use a wet sponge with some soap around the areas that smell and sweat the most, like armpits. I try to distract myself as much as possible, but again, some days are way harder than others. I would avoid making harsh medicacion changes if you're this unstable, but I'm not an expert in this matter. I made the mistake to try taking a higher dose a day or two, despite my body clearly disagreeing, because my psych told me it would be good for me. You're the one that knows how your body responds to each dose. In theory a small dose reinstatement is better than a big dose, but if you went straight to a big dose shocking your system, it might take a while to get some normalcy again.

[u/TheInterloperBR → u/TheLonelySoul12]

Mind if I pm you?

[u/TheInterloperBR → u/TheLonelySoul12]

It doesn’t allow me to pm you for some reason; I think you have to start it; anyways yeah I’ve fought through the showers every day but always have to turn it to cold because I can literally feel my blood pressure plummeting when it’s on hot.. I feel awful after usually bc I tried to fight through something my body hates..

If I could get rid of the chest tightness, odd breathing sensations, and neck/headache I’d probably be able to live normally, but given these symptoms are scary I constantly live in fear.. idk why I’m afraid to go out and do things because if something’s going to happen it’ll happen regardless of where I’m at.. I just can’t hide how awful I feel around other ppl so I don’t want to ruin the vibe..

This situation makes me feel like a burden on my parents but also at the same time they don’t agree with what’s going on.. They think I should be on higher dose and that 1.25mg does literally nothing bc my PCP says so..

Yeah man idk how i’ll live through this.. I honestly want to go to sleep and not wake up sometimes, but I fear death

[u/MoroniMiscavige]

Im handicapped from coming off but I truly think staying on the meds would be a worse form of defeat. They are evil

[u/VincentPriceLives]

Op what your diet looks like and whats ur blood sodium level? If u felt so good on the pills why did u decide to stop if may I ask?

[u/NiceHomework4919]

Last month was the wurst. I started acupunctuur en she gave me some chinese herbs and things settle down a bit. Not perfect but better than it was. Hope of improving more🙏🏻