Toast: looking for peer support

[Sunnyday]

Hi @Toast, how are you doing lately? 

[Toast]

@mva96, thank you for your well wishes! Especially when it looks like you are going through a pretty rough time right now. I hope things improve for you!

 

@arbor, @Neon, thank you both ❤️  and it is so nice to feel your support. Sending best wishes and hugs back to both of you. 

[Toast]

@Sunnyday, Thank you for checking in on me! Your success story is an inspiration to me. I am hanging in there! Things have been rough still. Brain fog and demotivation has increased a lot over the past month. I am still at 2 mg Prozac. Nearly every day I consider reinstating, but so far have not. One day I did take a double dose (4 mg), the first time I've done that since one day in January of this year (when I took 5 mg). This was out of both feeling unbearably awful that day/previous week, and also I constantly wonder to what extent my symptoms are from the withdrawal and to what extent they are from a stressful life event that took place last year. When I double dosed, I felt my paranoia and anger almost completely disappear. It felt like a knot was loosened in my head, and I could think clearly again. To me this confirmed again that my symptoms are due to protracted withdrawal. Obviously I do not want to destabilize my CNS and lose the progress I've made, but it was nice to at least re-confirm I was experiencing withdrawal and also to remember what it's like to not feel in the depths of horror. 

 

I do think about reinstating a lot, but I feel very strongly that I don't want to fully go back to the person I was on medication! I strongly believe now that these medications change our personalities. I've seen it with myself. Before I was very shy, awkward at communicating with people, and overly trusting. Now the pendulum has swung too far in the other direction where I am confident but extremely paranoid, angry, and feel difficulty connecting with people. I hope this will change with time!  

 

It's tricky. Emotions are just as important as our sense for orienting us in the world, particularly in the social world. I feel like with my social senses compromised, I am having difficulty maintaining friendships and relationships. I know I will heal but I worry it might take 10 years. 

 

[Mom74]

I can completely relate to the changes in my personality from years of antidepressants. I think it overall numbed me to feeling and emotions that I'm now feeling coming off the medication. Unfortunately my husband doesn't understand and can't relate to me. Makes statements like maybe you just need to get back on the medication which passes me off. The weight gain, heart racing and palpitations, anxiety and other crap isn't worth it. I just can't believe it takes so long to ween off the medication.

[Sunnyday]

@Toast 

Good to hear from you! 
I understand that. It seems like many have that concern while experiencing this. It becomes easy to doubt the fact that the drugs are the cause. If you decide to reinstate, it might be an idea to go up in dosage less than you did last time (?). Just a thought. I think making changes can cause issues (I'm sure you're aware), but I understand wanting to take the awful feelings away, because it can be truly awful. Reinstating carefully can be a good idea too sometimes, of course. 

Are you able to meditate anything nowadays or find any other ways of managing those feelings? I found the anger and paranoia can be extremely frustrating and difficult to deal with, especially around other people. Eventually though it does get easier, like you say too. And usually a lot sooner than 10 years for most people, thankfully. 
Do you mind me asking if you felt worse, better or the same as before the double dose when going back down to 2mg, after taking 4mg that one day? I'm a bit curious when you mention the brain fog and demotivation has increased. Maybe you already figured out the potential cause for that, though. 

[Toast]

@Mom74 Glad to hear I’m not alone here. I hope we both can see improvements.

 

@Sunnyday thanks for your response. If I reinstate I think I would go back to 2.5 mg then slowly titrate up as needed. I’m holding off on reinstating for now. Feeling pretty miserable but trying to tell myself to wait one more year. Have tried meditating which is sometimes helpful. The day after I doubled dosed I felt surprisingly ok - I had thought I would feel way worse. I didn’t feel nearly as good as at 4 mg but not as bad as the day before 4 mg. Not sure with brain fog and demotivation cause but I’ve experienced a lot of social stress and isolation in the past year and it hasn’t improved and so I’m trying to heal my brain in a stressful and sh*tty environment. 

 

Thank you for checking in ❤️ Hope you are doing well

[Toast]

Hi friends, 

 

I just wanted to stop by again to update. I did updose slightly on August 12 as my symptoms had worsened to the point where it was very difficult for me to get work done. Before August 12, I had experienced worsening fatigue, where I would feel sleepy during the day despite sleeping 8 or 9 hours at night. In addition, I had complete lack of motivation and worsening of all of my other symptoms. 

 

The updose to 2.25 mg so far has been a very positive decision. It has improved my anhedonia, as I'm now able to feel desire to do some of the fun things I used to enjoy. However, in the meantime, life stresses and negative external factors have continued to worsen for me. Also I have realized that a lot of my paranoia and anger was actually justified, as I realize more about the negative life event I experienced. 

Symptoms I still struggle with: 

- Anger (though this has improved)

- Depression (luckily, this has improved a lot since the updose) 

- Difficulty organizing my thoughts, thinking of words, remembering things, and concentrating (has not improved much ) 

- Shifted sleep schedule - falling asleep very late, and waking up very late

- Difficulty feeling connected to others

- Difficulty with motivation (I feel this is related to external factors mainly though) 

 

Symptoms that have mostly gone away:

- anhedonia (yay!)

 

Wishing the best to everyone and thank you to those who have followed my thread. ❤️ 

[Neon]

hey @Toast I am so happy for you that it has improved 🙂 that is really wonderful news.

 

I am sorry to hear that life is rough at the moment. If you ever need someone to talk just send me a pm.

 

Really happy for you!!!

[bijay]

@Toast  That is so great that you have found relief with updosing a bit.  Maybe being able to get back to some enjoyable things will help alleviate some of the life stresses/negativity you have been dealing with lately.  Congrats!!!!!!! 

[Toast]

@Neon Thank you! I am so glad to see the small improvement too, even though it is probably just from updosing and even though things are still rough. I hope you've been doing okay? @bijay Thank you as well for stopping by my thread and for the encouraging words. My quality of life did improve and I think now I've finally learned that my taper will be much slower than I initially planned. Thinking of you and hope you're doing well!

[Toast]

I just wanted to update my thread since it's been awhile. Some symptoms have improved, while others have worsened.

 

Symptoms that have worsened: 

I find more and more trouble organizing my thoughts, and just periods of complete mental blankness, where I have no thoughts in my head. It feels like I'm 1/5 of the person I used to be, like every day more and more pieces of myself are falling off. I also find it harder to keep up with personal upkeep/daily chores/things I used to do to try to stay healthy. Basically while I'm still hanging in there getting the important things in life done, I'm letting little things slip through the cracks, because I've just stopped caring. A lot of the time I don't feel like a human being. When I look back on how I used to be pre-withdrawal, and how I am now, there has been a massive personality change that continues. I feel this odd total disregard for myself as a person. 

 

Symptoms that have improved: 

As the apathy has increased, depression and anger have decreased (hard to be both apathetic and angry). 

 

I actually got an MRI done a few months ago, mainly out of curiosity -- I did not really expect it to show anything. But it did actually show numerous punctate white matter T2 flair hyperintensities. So basically, I have holes in my brain 😕  I suspect the damage is from either the SSRIs or the SSRI withdrawal -- it's not totally crazy to think, since use of other types of drugs can cause hyperintensities. I did a search and it looks like a few other people from S.A. have also seen white matter damage on MRIs. 

Despite the difficult times, I do not ever see myself updosing significantly or going fully back on any SSRI. I feel like Neo in the Matrix, once you wake up and see the world how it really is, you don't really want to go back. 

 

Sending lots of love and best wishes to everyone here. ❤️ 

[Ariel]

Hello @Toast

I've been reading through your intro thread and can relate to much of what you describe. You are good at articulating your experience.

I'm sorry for the suffering you have been through and the ongoing withdrawal struggle.

I'm impressed with how far you've come. You are very brave!

 

How are you doing?

(No pressure to respond, just a gentle inquiry to express interest and care.) 

 

Best wishes for continuous healing,

A. 

 

 

 

 

 

 

[Toast]

Hi @Ariel, 

 

Thank you so much for checking on me! I actually have a very positive update compared to how I was doing back in January. 

 

In the past several months, my external life circumstances improved in many ways, which helped make life a lot more tolerable for me. A few months ago, I started having days where I would go outside and look at the sun shining and I would actually feel joy again. This might sound stupid or weird, but I remember feeling better started one day when I went for a walk, was feeling miserable as usual, and happened to look up at a power line and for no reason at all seeing just like the black power line crisscrossing the sky above me triggered something in my brain where I felt _not miserable_ for a brief moment. After that I continued to get longer and longer flashes of feelings of relief, like this extreme pain and grief I had been carrying was lessened substantially. After basically 14 straight months of relentless depression, I can't express how wonderful this felt. 

 

I am definitely no where near healed (and also I'm not yet done with my taper). However, I'm posting because I will be continuing tapering after an almost year long hold. I'm planning for an extremely slow taper, but I'm excited to be moving forward again. 

 

Issues I still struggle with: 

- This feeling that I have become a completely different person. This isn't necessarily a bad thing, but there are aspects of "old me" that I miss. 

- Feeling like I am not fully present, like there is something missing or "off" about me, like I'm not a real human being

- Sleep continues to be a struggle! Falling asleep is difficult and I am "phase shifted" to fall asleep very late and wake up very late. When I am forced to wake up early, this does not help much. 

- Still a lack of interest in activities "old me" used to enjoy

- Worse working memory and worse memory in general. I find it harder and harder to remember events from when I was drugged? 

- Less organized compared to "old me" 

- I still struggle with depression, even though I'm feeling a lot better than I was

 

I will not live my life on drugs, and I will not give up. Sending my love to everyone who is struggling right now. I believe we can all get through this. 

[Ariel]

@Toast

Thanks so much for sharing your update! Great to read about your improvements. 

 

5 minutes ago, Toast said:

This might sound stupid or weird, but I remember feeling better started one day when I went for a walk, was feeling miserable as usual, and happened to look up at a power line and for no reason at all seeing just like the black power line crisscrossing the sky above me triggered something in my brain where I felt _not miserable_ for a brief moment.

 

Doesn't sound stupid or weird at all. Just sounds beautiful. Thank you for sharing <3

 

6 minutes ago, Toast said:

I will not live my life on drugs, and I will not give up.

 

What a rallying cry! 

Your attitude is inspiring. I hear you that there are still ongoing struggles and a slow taper ahead. 

I love that you are taking in the positive developments and using those to build and derive strength for the challenges. That sounds like healing and growth to me.

 

9 minutes ago, Toast said:

Sending my love to everyone who is struggling right now. I believe we can all get through this. 

 

Right back atcha, Toast. I believe in you! <3

 

Best of luck to you resuming your taper. I'll be thinking of you.

In solidarity and support,

A.

[Toast]

I just dropped by to update my thread. Currently I’m on 1.75 mg and getting nervous though recently continuing the taper hasn’t been awful so far yet (knock on wood). Mood wise I feel better than I did last year but the darkness does come in through the cracks. Hardest for me is the feeling that I’ve lost my old self. Memories from when I was drugged are foggy or just gone now. It literally feels like I’m a completely different person, which feels like a bereavement. It feels like I’m the edge of a cliff, and huge sections of me have just crumbled away. It’s also hard still because I have still had cognitive issues, difficulty concentrating, thinking of words. I’m worried these will get worse as I enter the last stages of my taper, and I’m scared of changing even more into someone unrecognizable and permanently impaired. 

 

But overall things are bearable, which I’m grateful for. All the best to everyone 

[Toast]

Just dropping by to update my thread again. I’ve gone down to 1.5 mg and am planning to pause here for a bit. I know I say this every time I drop by my thread but I am still amazed by how I am a completely different person at the reduced dose than I was on the full dose. It’s like my brain grew in wrong, or never matured correctly while I was on the full dose. I would say I’m no longer experiencing the most acutely distressing withdrawal symptoms (the darkest of the depression seems to be over, knock on wood, and my ability to think is coming back - I read 4 books in the past week - though it’s still not what it was) but my symptoms now are still profound - how else to describe a complete personality change? Today was particularly disorienting as I was trying to square up old me with new me. My motivation has been low but for external reasons, I think. Memory is still terrible. Insomnia is still bad.

 

I dream now! I realized maybe a year ago that I spent 15 years without any dreams. Now I dream almost every night. Just ordinary dreams, not scary and not particularly exciting, but it was shocking and wonderful for me to realize what I was missing when they finally came back. I always used to think I just wasn’t remembering my dreams, but when I did start dreaming again I looked it up and found out SSRIs suppress REM sleep. It feels like a small victory to get this piece of the human experience back.

 

Anyone who is struggling, I believe things will get better for you like things are for me. 

 

I have been thinking a lot about my own experience, other people’s, and how these drugs work (finally read Anatomy of an Epidemic - I frantically skimmed it a year ago but did not fully read it until now) and I don’t believe these medications should ever be prescribed to children under any circumstances. I know that’s kind of preaching to the choir on this website but it needs to be said.

[Toast]

Stopping by again. I decreased to 1.0 mg on April 1 and either I am really starting to feel that decrease, or life stress is catching up with me. I had a couple pretty bad days this week which reminded me of earlier on in my withdrawal process (though not nearly as bad, I have to keep reminding myself!). Feeling bleak and depressed/doom and also very isolated (I live alone ). I also feel wired and overly full of energy. Also my sleep got even worse than it usually is this week as well, usually I only have trouble falling asleep but this week I had problems where I also woke up too early and couldn't fall back asleep due to feeling too wired. 

 

I do have to say that my taper from 2.0 mg to 1.0 mg was for the most part very uneventful and I did not really experience increase in symptoms, so that's been wonderful. I'm definitely worried about these last 1.0 mg though! 

[FindRest]

As people get to those last few mgs, they often have to reduce their % of taper as well as waiting longer in-between. I see your last taper was 8%. Perhaps holding it for a few extra weeks then decreasing by 5% or less next time may help. You’re doing a good job paying attention to what your body is telling you. That last mg can be rocky. 

Edited May 19, 2023 by FindRest

[Toast]

Hi everyone,

 

I'm now down to 0.5 mg and holding for a while. I've reached a point where my withdrawal symptoms are mild enough where it's difficult to tell what's withdrawal and what's life stress. This is wonderful, because I still remember the days of paranoia, anger, and crying every day. When I look back I know that my early withdrawal was compounded by a traumatic experience which occurred around that time and still haunts me. But I have healed so much since then. 

 

Improvements I have seen:

- Cognitive problems have mostly disappeared, knock on wood. I no longer have brain fog or extreme slowness in thinking except if I eat really poorly. I will say my brain is not the same as it was on (standard dose of) SSRIs. This is both for the better and for the worse. I am less creative now and my brain is still slower than it was before. But I am better at staying on task and my quality of work is better in many cases. I wouldn't necessarily say it's a bad trade, just different.

- Derealization is gone and I feel human, honestly, even more than I did while I was on (higher dose of) drugs.

- Anger and depression have mostly gone, except where they would be expected/appropriate

- I think the difficulty feeling connected to others has gotten stronger, but I believe this is actually _good_. I believe on (standard dose of) SSRIs I was overly naive and trusting of people, my brain was in a childlike state essentially. Now I'm less trusting (though I think still probably a little more naive than I should be). 

- Difficulty with motivation is still something I struggle with a bit, but it is relatively minor compared to what it used to be and so now I don't necessarily think it is connected to withdrawal.

- Interest in fun activities has increased back to normal. The activities "new me" enjoys are different from the activities "old me" enjoyed. It is like I existed as two different people. I am okay with that though because the more I get to know "new me", the more I like "new me". 

- I still have difficulty remembering events from when I was more drugged - like all of my memories from when I was in my more drugged state are buried behind a hazy fog. Of the (still many) things I do remember, I look back at things I did as "old me" and I feel puzzled - like why did I do that? Or why did I say that? Old me had less of a sense of embarrassment and was more prone to crying in public. I don't regret anything old me did, because I feel like old me was doing the best old me could with a brain-disabling medication. In fact I feel a little bit protective towards old me, like you might feel toward a younger sibling. But new me is definitely an improvement over old me. 

- I don't think I am 100% healed and I do think my brain is still damaged from having taken these drugs for so long. But I am mostly able to enjoy life and work at my job, and that is more than I would have thought I would be able to do two years ago. 

 

I look forward to the day when I can live my life completely unclouded by drugs. Every day that I get closer to that goal is a gift. Sending love and positivity to every one else who is also on this journey right now.