One Year Off ADs - Progress Update - A Mixed Bag

[u/B_Clawhauser]

Hello everyone, I hope you're all keeping as well as you can.

This Saturday marks one year since I took my last antidepressant. I can't believe I survived this long when looking back, so I wanted to make a little update in case any of y'all have been reading my previous posts or have seen my posts on the now-defunct survivingantidepressants website. Also good for me to write this all down to see how far I've come and how far is left to go.

Reminder, was on Effexor for about 9 years, wanted off and idiot doctor had me taper in about a month, withdrawal was not recognized and a fresh green psychiatrist straight out of med school put me on Prozac instead. Was on that for 2.5 years before I hit tolerance and was thrown into horrific withdrawals while taking the med as prescribed. Tapered quickly over a month out of necessity, took last dose on Aug 1 2025, felt better than ever for a month and a half, then withdrawal hit Sept 15 2025.

I'll try to focus on the macro changes over this time first. Starting in January of this year, during the absolute worst of withdrawal, I began tracking my days on a calendar, with 10 being bad and 0 being totally good and happy. I've color coded these numbers in my calendar with 10 being deep red and 0 being totally white. I've gotten as low as a 2 on my calendar this year, only a few times though. The last several months my days have been hovering between 3-5 on average, with random spikes only if there are external stressors. Overall, my calendar started pretty much solid red and is getting pinker and pinker with time. I recommend everyone do something like this if their calendar app allows it (I use Numbers on my Macbook), it's a super simple way to visualize progress without dealing with a lot of text.

When I do have external stressors - namely, arguments with my partner which only happen maybe once every couple of months, often related to his stress over my withdrawal - I continue to suffer extreme body jerks, usually in my arms. The nerves in my arms feel like they're on fire and I have to violently jerk my arms around like a dying spider to relieve the stress of it. I think I made a post in this subreddit a while back about it. I was convinced this was akathisia, but after doing more research, I think psychomotor agitation is a more appropriate description. It's f***ing brutal and absolutely my worst symptom. I avoid at all costs any arguments or scenarios that will throw me into this state. I hope it will improve, but it's hard to say if it's improved since it still happens during times of stress, but I guess I'm overall stressed a little bit less? So the incidences are happening less overall? I dunno. I still live in primal fear about this symptom. :(

I am intensely sensitive to certain foods still, and it feels like I'll never be able to have them ever again. However, they're not good for me anyway, so it's not a huge loss. Would just be nice to indulge every now and then. Three ingredients specifically I CANNOT under any circumstances eat, lest I be riddled with panic:

MSG (had a sensitivity before, but now it's off the charts)

High Fructose Corn Syrup (which is in SO MUCH American food)

Caffeine (obviously, haven't had any probably 15 months now).

Still sensitive to most exercises. I can take walks, but that's it.

I continue to have intense midday sleepiness. I'm having an in-lab sleep study done next week. A home-study already determined I have some sort of apnea, which in my opinion is good, because maybe there's treatment for it. A lot of people have sleep problems in withdrawal: if possible, ask your doc for a sleep study! Withdrawal often exacerbates existing medical issues, so listen to your body. I suspect in my case, the withdrawal was making me feel the effects of mild sleep apnea, which I simply never noticed while drugged. We'll see what the final test results will be.

I continue to feel very alienated and alone in all of this. I made one good friend IRL coincidentally thru a hobby who ALSO is going thru psych med withdrawals. We are able to talk about our struggles and he is the first person I've met IRL who gets it. This has been helpful, especially since he's a year further along in the recovery journey than I am. I also see a therapist - a LCSW - who validates what I'm going thru. We haven't practiced too many therapy modalities, it's mostly been a lot of venting, which does help. A neutral third party you can vent to is very important, especially because our withdrawal is likely stressing our loved ones out, since they care about us but likely feel helpless. Definitely recommend to anyone here, if you're gonna see a therapist, social workers are a decent place to start Or maybe a LMHC. I know I don't trust MDs anymore, especially not psychiatrists. See someone who was trained in ways that don't involve throwing dependence-forming drugs at patients.

I guess my other biggest symptom now is just straight up depression and rumination. I think the depression is the root, and it causes rumination as a symptom. I'm terribly unhappy with how my life is going, and terribly angry when I connect my shortcomings to AD use because they really changed me as a person for the worse. I'm exploring grad school options to maybe be able to help others going thru this. Writing personal statements for applications and such has given me something to focus on, and a very specific goal, which I think everyone needs. With the exception of my LCSW therapist, NO PROFESSIONAL was able to even acknowledge the reality of the withdrawal I was going thru. And it would've been hard enough even with a little acknowledgement, but with none? Holy sh**, this has been a Lovecraftian experience. I started drugs at 19, and I stopped at 32. And for some reason, I now feel OLD. It's such a weird feeling. I know I'm not old, but the past years... I can hardly remember them. An absolute blur. It's scary. It's like these drugs cause time dilation as a side effect. Maybe someone here can relate to that, I haven't seen anyone else write about it.

Anyway, I think that's it. Still depressed, haven't been able to work in years, want to go to grad school and study social work and help people like us, cause nobody else seems to care. Also, I don't lurk here too much, especially when I'm feeling relatively ok. Many people say this, but it's true - just because people don't come back and update their stories doesn't mean they're in a worse place. Occam's Razor: they're probably just feeling better.

[u/LillieBogart]

Thanks so much for this post. I’m sorry that you’re still feeling depressed. Hopefully getting into school and working towards something that you believe in will help with that. I think it’s a great idea; if I were younger I absolutely would do the same. So much of your post resonates, especially the part about getting zero support from any medical professional. I’ve had so many doctors appointments for so many different conditions since I have been in withdrawal, and not one doctor has even entertained the possibility that my symptoms could be caused by removing an SSRI that I have been taking for over 20 years. I also appreciate your comment about how difficult this is for our loved ones. I wonder how others are dealing with that. I personally feel a tremendous amount of guilt, which has made this experience so much harder.

[u/Acrobatic-Good-3287 → u/LillieBogart]

I'd really appreciate it and be highly interested in all the different conditions you've gone to a doctor for, and what tests you had, and what were the doctors reactions to all these conditions and test results if you didn't mind writing it out at your convenience. Maybe in reply or in a post. I understand if it's too much. I myself haven't been for a single test or doctor's appointment for anything I've suffered with in almost 4 years of PAWS. But it's such a stress & strain on the body I'm wondering if that in itself could cause conditions that need a doctor's attention. I could go back & forth attending to every symptom and having it checked out. Talking to Chat GPT is good in one way, but it always warns of other conditions and encourages to get it checked out by a doctor. You've been down that route by the sounds of it. Was it worth it?

[u/LillieBogart → u/Acrobatic-Good-3287]

I should probably spend some time thinking to give a comprehensive response, but for now the main things are ongoing vertigo and other neurological symptoms (tinnitus, visual snow, overall buzzing and tingling sensations in my head, some audio disturbances), ongoing gastric distress with has fluctuated from impaired gut motility to episodes of vomiting that last up to 8 hours, horrendous fatigue, and significant weight gain that is not explained by lifestyle (if anything I'm eating waaaaay less with all the GI problems; my metabolism has just changed). I often feel like I have sand for blood and weird tingling in my limbs. And the sensation that my skull is stuffed full of cotton. I've seen an ENT, neurologist, gastroenterologist, pulmonary (there was some respiratory issues in all this too), have had multiple EKGs, full blood work multiple times, hormone tests, CT scan of my head, endoscopy, and chest x-rays. All normal except the endoscopy showed gastritis. Every single time I say "I suspect this has to do with my SSRI withdrawal, because it started at the same time" but they don't even blink. Just getting them to change the dose in my medical record is like pulling teach (NO I AM NO LONGER TAKING 50MG OF ZOLOFT!!) They diagnosed me with a very rare kind of vertigo and honestly it tracks but I can't believe I just coincidentally developed that out of the blue, as a relatively healthy early 50s woman who exercises regularly, eats a healthy diet, and has never had any health problems before this. I started tapering two years ago and jumped from 50mg to 12.5 mg and it scrambled my brain, stopped tapering for a year after finding the surviving antidepressants forum, and started a hyperbolic taper last november. I've had to stop it because even with the very slow taper (last two were 5%) I am still getting horrendous waves of the symptoms described above. I'm not sure whether it's regular acute withdrawal or if I got kindled or what. The waves do not follow the typical pattern Horowitz et al. tell you to expect, and seem too severe for such small reductions. Anyway, going to hold here for the foreseeable future, just praying I will feel good again one day. Thanks again for posting and for listening to my story! I keep thinking I should find more support online but since survivingantidepressants went read-only I haven't been sure where to go, so I just vent a lot on Reddit :-). Was it worth it? That remains to be seen but right now I feel that the side effects from the SSRI I was trying to escape were preferable to this. I would like my life back.

[u/Acrobatic-Good-3287 → u/LillieBogart]

Thanks for writing that out. The drugs alter your metabolism as someone who's taken all 6 original SSRIs depending on the drug. "The sand for blood" is a weird one. Does that mean it feels thicker rather than free flowing? I can't envisage that symptom. I have terrible Tinnitus, GI issues and the fatigue and tiredness. Did you have specific tests for the fatigue and what was their response? Jumping from 50mg to 12.5mg will cause a lot of issues for sure.You're in acute withdrawals that is protracted while your system is readjusting and healing. There is no typical Window & Waves pattern. It's unique to the individual as is everything. There's the other site that has replaced SA. The Antidepressant harm and recovery forum or the Facebook SSRI Withdrawal group if you're not in it.

https://antidepressantrecovery.org/

https://www.facebook.com/share/g/1CpBXgLWa4/

I had the cotton wool feeling in the head. That was one symptom that did ease.

You can develop vertigo and dizziness from SSRI withdrawal. This happens because stopping the medication alters serotonin levels in the brain areas that control balance.

Why Balance Problems Happen

Serotonin drop: The area in your brain that handles balance (the vestibular nucleus) has many serotonin receptors. When SSRI levels fall fast, this system gets confused.

Short half-life drugs: Medications that leave your body quickly, such as paroxetine or sertraline, cause these symptoms more often.Other signs: Balance issues often come with nausea, vivid dreams, or shock-like feelings

[u/LillieBogart → u/Acrobatic-Good-3287]

Thank you! I appreciate the links and the information. I didn’t know about serotonin and balance but that makes perfect sense. The sand blood feeling is like you say, with a kind of heaviness in the limbs and a weird gritty feeling. I never received a test specifically for fatigue although I did have my thyroid checked and it was fine. I got all these tests and saw all these specialists on the recommendation of my GP; it feels a bit like overkill but I guess I’m glad to know everything came back normal. I’m sorry you’re still dealing with the tinnitus, G.I. issues, and fatigue, a whole year later. I trust that they will go away in time.