Vonnegutjunky: Paxil 10 mg for 8 years - partial wean with reinstatement

[Vonnegutjunky]

Hello everyone, around  the 22nd of July my window peaked and I had zero symptoms, then around the 26th I could feel the intrusive thoughts coming in, and by the 27th I was back into a full blown wave, which is where I am now. 

 

I was feeling so much stronger the week of the 22nd and now I am back, in bed, with that constant terror /fear, burning skin and just my brain not working right. 

Fear and anxiety really messes with your cognitions, and it makes me feel like I am psychotic. I saw my therapist today, I forced myself out to go see him, and he said, I’m not psychotic, and he doesn’t think I will ever be. Which is nice, but doesn’t stop the nasty scary feelings. And the doom sensations....it’s becoming too much.....my only coping is hope that this wave will be less in length. I am very upset because I wanted to go back to work at the end of August, and my therapist thinks I should, but I don’t know. 

I teach one day a week in the evening, for 10 weeks, that’s it, that’s the only job I do, but I am afraid I will lose it in front of my students. I don’t know that’s I can handle doing this. 

Any advice on if I should try to teach? 

[ChessieCat]

Are you teaching adults or children?

 

Sometimes having a back up plan, like a plan B, or an escape plan can be enough to allow you to get through something.  Knowing that you are able to "get away" if you need to can mean that you are not focusing and worrying as much about something possibly happening (the unknown factor - which our imaginations can create a huge catastrophic situation from something very simple).  As an example, I don't like crowds so a helpful way for me to remain calm is to know that I'm not going to be trapped somewhere and not be able to get away, so I allow for this, like sitting in the seat at the end of a row, and/or near an exit.  My daughter was suffering extreme anxiety at one time but wanted to go to a friend's wedding and reception.  Because I understood how she felt and that having an escape planned if needed would help her stay calmer, she went to the wedding by public transport, then got a lift to the reception.  Later in the afternoon I went and spent some time at the MacDonald's nearby the reception so that if she wasn't able to cope she knew that she wasn't going to have to arrange to get to the station (she doesn't like catching taxis) and still get home by public transport.  She ended up staying for most of the reception.

[Vonnegutjunky]

Thanks for your reply cheesie

i teach adults. 

I can use the restroom and allow for breaks in the class. 

I also have Ativan. I have lots of it because I don’t ever use it. I used 1/4 of a pill 2 times in the last 5 years, since the beginning of this mess. I don’t like how they make me feel, and I am extremely med phobic, so I have to be really bad off to take them. So I have those, but I don’t even know if I’m bad enough that I need one, I’m probably not going to really do my job effectively. 

 

Im just worried. 

[Rabe]

2 hours ago, ChessieCat said:

Later in the afternoon I went and spent some time at the MacDonald's nearby the reception so that if she wasn't able to cope she knew that she wasn't going to have to arrange to get to the station (she doesn't like catching taxis) and still get home by public transport.  She ended up staying for most of the reception.

I want you to know that was so kind and thoughtful CC...you have a deep understanding of that fear and I want you to know I am grateful for you sharing.  It is so hard to get through sometimes...well all times I guess.

[Rabe]

Hi VJ...I can understand your feelings....I am always afraid of that trapped feeling and being stuck and on and on.  My mind goes to every possible place except the nice ones!  

I am trying hard to work on it but i sure understand how hard that is!  If you do it is it a 10 week commitment?  When do you have to decide by?  Think would be hard to make a decision in midst of a wave!  Wanted you to know I understand and am thinking about you.  I do know that sometimes when I dont do something cause of my fears I feel worse....it feeds on itself.  That doesnt mean I dont give in to it...work in progress well are!!

[planifolia]

I’m so sorry to hear that you are in another wave! Keep hope alive and it may just be a short wave. I’m struggling immensely to and feeling all that psychotic terror and DR very much like yours. Lots of hugs

[planifolia]

I’m also just curious how does your DR and doom scary terror feel like? 

[Vonnegutjunky]

On 7/30/2019 at 2:15 AM, Rabe said:

Hi VJ...I can understand your feelings....I am always afraid of that trapped feeling and being stuck and on and on.  My mind goes to every possible place except the nice ones!  

I am trying hard to work on it but i sure understand how hard that is!  If you do it is it a 10 week commitment?  When do you have to decide by?  Think would be hard to make a decision in midst of a wave!  Wanted you to know I understand and am thinking about you.  I do know that sometimes when I dont do something cause of my fears I feel worse....it feeds on itself.  That doesnt mean I dont give in to it...work in progress well are!!

Rabe, it’s an adjunct position, our classes are an accelerated course where you do one class once a week for 5 weeks, then go to the next. The classes are all sort 4 hours long. And once you commit you are locked in for those 5 classes. It’s like contract work. I wrote my boss and declined the face to face classes but I’m going to try the online classes.   

[Vonnegutjunky]

11 hours ago, planifolia said:

I’m also just curious how does your DR and doom scary terror feel like? 

Plan, it’s like terror running though my body, everything seems off some how, my skin will burn and I can’t even get up to use the restroom without the terror increasing, the doom and dread flood me over and over all day. I just feel like I am in the worst nightmare you can imagine, I even see things out of the corner of my eye, and I am in just such a state I have to lay in bed and hide away. Even my words describing it now don’t do justice, it’s so much worse than I can even describe. I feel like actively psychotic. It’s a horror no one should endure, yet I do. I keep going. 

 

Can you describe  yours? 

Are you on Facebook? 

 

There is is a small chat that I started 3 of us, that have this terror like I  describe. 

[planifolia]

You can find me on facebook - Cicero Chan. I have the same cat profile picture.

 

Like what you feel, I feel absolutely psychotic with terror. It is very very terrifying. Everything terrifies me and nothing feels "right"', everything is creepy. Everything in my environment freaks me out. People look weird and scary. I have these awful feeling that something horrific is going to happen any moment, like I am going to die, or I am going to warp into some different, hellish existence or dimension, it's always there 24/7, keeping you in perpetual state of dread and absolute horror. The DR makes everything worse as it keeps me very ungrounded and furthers the terror. I feel like I am lost in time and space and nothing feels real. A true horror show..~!

 

 

[Vonnegutjunky]

Your description, is dead on perfect. I am going to have to borrow your words so I have a proper way to communicate it in the future. 

 

I sent you you a friend request on fb. 

[Rabe]

On 7/31/2019 at 5:05 PM, Vonnegutjunky said:

Rabe, it’s an adjunct position, our classes are an accelerated course where you do one class once a week for 5 weeks, then go to the next. The classes are all sort 4 hours long. And once you commit you are locked in for those 5 classes. It’s like contract work. I wrote my boss and declined the face to face classes but I’m going to try the online classes. 

That sounds like a really good idea VJ...a good compromise so to speak...the online classes.  When do they start?  I sure hope they go well for you!💜

[Rosetta]

V,

 

I'm so sorry you still have terror.  It's very rare for me now.  It will go.  I know that doesn't help.  There is only the now, and it's horrifying.  I used to say it was as if I was sitting in a horror movie all the time.  That doesn't really describe it.  Its so hard to believe that taking that medicine created an infinitely worse situation in our brains than what was there before.  That was child's play.   I wish I could help you, but know you are not alone, this is not "you" and that it won't last forever.  You may not even remember it very well.  I don't.  It's like a dream or a story someone told me.  It wasn't real.  It never was real except inside my mind.  There it was very real.  I suspect DR has something to do with it.  All I could do was distract, but tv shows and movies seemed far too real, too.  Books felt real.  It's definitely a phenomenon of having difficulty distinguishing between real and imaginary on an emotional level.  It's not hallucination quite.  It's not psychosis.  It's a feeling, not an apparition.  It's terror with full knowledge that nothing is actually happening.  I think that's why the brain interprets it as impending doom.  

 

A big hug for you.  You will get through this.

 

Rosetta

 

[Vonnegutjunky]

Just an update, my mood seemed to shift the last week, I started feeling better, less terror, and the last 3 days it's been gone.

But I have severe depersonalization and derealization, and I have anxiety in my dreams, and my dream themes are all about me being in situations that cause anxiety attacks. 

What's worse, over the last 5 years ,any time I would have to leave my home, I had a very agitated and anxious desire to get home, becuse when I feel bad, I eitherrlay in bed or on my sofa and its the only place that makes me feel remotely safe. 

Well now, during any kind of anxious feelings, thata all I want to do. The way i am handling these horrific withdrawals are Turning me into an agoraphobic.  Even if I could cope with these awful feelings, my mind is just telling me to get home. 

Any suggestions on how to combat this? 

I see my therapist every monday and I will bring this up to him but hoping to get some insight before then. Also he never gives me coping skill suggestions, it's all about re framing things, which is good, but sometimes I need a little more. 

 

Thank you 

[RusTW]

I force myself into uncomfortable situations sometimes and just sit with it when I have bad anxiety. As I'm sitting there I try to remember how I used to feel and what I like about what was going on or being talked about. It seems to ease the anxiety in general When Things become uncomfortable as you practice. Good luck

 Russ 

[planifolia]

Hello Vonne, it’s been a while and you have been in my thoughts. How have you been lately? 

[Vonnegutjunky]

Hi plain, thank you for the comment. 

 

Ive been busy running my akathisia group on Facebook .

 

I am hanging in there. I have waves still but windows too, and during my widows I feel normal. I’m just tired of the ups and downs. They aren’t getting any shorter, but at least I have the good days to look forward too, they are keeping me from doing anything stupid like ask for new meds. Lol. 

 

How are you doing? 

[Carmie]

Hi Vonnegutjunky, 

 

You said you have a Facebook group on akathisia. Are you struggling with it at the moment? I’ve has such severe akathisia in the past, and I must say that it’s the worst symptom EVER! I’m tapering slowly now, but I still get it here and there, but not as intense. I’m tapering around about 4% or so every six weeks or more, depending on how I’m feeling. 

 

You said you are having windows, does your akathisia go away during your windows?

 

Sending hugs🤗

[Vonnegutjunky]

Hi Carmie, I don’t have akathisia during every wave, but I do still get it, I have had it 3 different times this year during different waves. 

 

Yes it is the single most horrid symptom I’ve ever experienced. 

 

During my windows I don’t get it at all, in fact I feel really normal during my windows, I am tapering very slowly too but holding for the moment, last April i was hit with symptoms so bad it scared me to cut for a while. So I’m holding this year trying to stabilize. 

 

My group is called akathisia - understanding and seeking answers. Feel free to join us if you like. 

[Vonnegutjunky]

Just want to put this here......I just need to vent to others who can understand. 

 

My daughter needed to see a sleep specialist today, the doctor is a 2  hours drive away. Lately I’ve been okish, now horrible, but I was nervous about the drive. 

 

So so I get on the highway and about 30 min in I'm doing ok, well I get down to Indianapolis, cause that’s where I’m going and the traffic is bad, it’s always bad down there, so I’m having some increased anxiety but no panic....so I’m ok, finally we get to the dr office and it’s on the 3rd floor of a building, I don’t like being in buildings up high and seeing outside, and of course the office is filled with windows.

so I sit down and fill or the paperwork and I’m sitting waiting to be seen by the doctor and a hellacious panic attack hits, it’s a doozy, I almost faint. 

 

I calm myself self a bit and we are called back, as soon as we are situated in the room I am just flooding over and over with anxiety and panic, it will not calm at all, and I just want to get the hell out of there, but  I stay , I mean I need to, it’s for my child. 

 

So doc doc comes in, I’m full of hyper anxious and small panic attacks, for an hour and a half that’s what it is while I try to focus and tell her about my daughters issues. 

 

So we finish, I’m glad to be out of there and we are on our way back, 2 hours, I take a back access road to avoid the bad highway traffic, it’s slower easier drive, but still the anxiety and panic keeps trying to come in, and intrusive thoughts emerge. I haven’t had an intrusive thought in over a month. 

 

So so I am just upset that the drive went so horribly, and I just want to be able to be myself again, I used to drive down there all the time with no issues. 

 

Does anyone one have any success with supplements or something natural to help calm down? This just makes me feel so defeated, like is this how it’s going to be now in my life? I’ve been holding my dose since January trying to stabilize, and I don’t want to live my life with this anxiety and panic, it’s why I went on the pills to begin with, but it’s worse now. 

[planifolia]

Hello Vonne. Sorry to hear about the panic episodes! I completely understand about the psychotic terror being absolutely horrific. As you know my experience has been very much like yours. It seemingly comes and goes without rhyme or reason. I am still tapering and the window and waves are senseless and spontaenous.

 

I really hope things have been better since you posted. 

[planifolia]

Hello Vonne, it’s been a while. Hopefully that means things have been not too bad and you are feeling well.

I just wanted to ask about the last wave you had that you mentioned here. I remember you saying it took around 7weeks before the intense terror and akathisia-like symptoms eased. I wanted to ask if it was a gradual inprovement or was it rather sudden?

 

I have been in one of my most darkest and hopeless place after many months of just unrelenting horrific symptoms without any ease, and just looking for some hope. 
 

Thank you 🙏 

 

[manymoretodays]

Hi Vonnegutjunky,

How are you?  Update?

I just moved that nice article you posted to the aromatherapy and essential oil topic. 

And so I wondered.

 

I've had to learn and practice many non-drug coping skills to help me, both while on drugs, in WD, and now off drugs, and still experiencing WDsyndrome.

It's paid off, as I can stop and pause often, just briefly........when I feel the nervous symptoms that come on due to stressful situations.

For example:  freeway driving and music helps, I actually sing along.  And or a bit of aromatherapy.  Or I have these short mantra type things I say, sometimes to myself but if I can, I say them out loud as it helps.  4-7-8 breathing I can do too, and others don't even notice.  Or some EFT tapping.

 

So, it has gotten better for me, with lots and lots of practice.  I do best too, when I keep up with exercise of different types as well.  Also, even 5 minutes, first thing in the morning, of meditation has helped me.  And if I can't, for whatever reason, do meditation, first thing.........I can do it "on the run" too.  Just mini bursts.

Gratitude lists.  Staying mindful and in each moment. 

All of these have helped me.

 

So hoping you are windowing along now.  And are finding some good supports too.

 

Best,

L, P, H, and G,

mmt

[Vonnegutjunky]

Hi everyone.....here to post an update. 

 

Well I got my gallbladder removed, Feb 7th 2020..... Surgery went well, no reaction to the meds they used and after I felt great.....

 

For about a month before the surgery my symptoms  started calming a lot, they were replaced with worry about he surgery.....so I knew a lot of my previous fear and symptoms    form my adverse reaction and withdrawals were a result of psychological versus actual physical issues....not all but a lot....

 

So now they are creeping back in, now that I have no real worries...so I'm practicing coping techniques and living life the best I can, and I am even teaching one class a week again.....

 

Sometimes I do get blips of symptoms, psychotic terror, buzzing, depersonalization and derealization, and it passes rather quickly..or sometimes I get intrusive thoughts that try to stay, and I practice letting them go......

 

I am still at 7mg, and holding here.....been here for over a year, and I don't plan on going down any time soon....I feel I've been put thru the ringer and just since this last fall have been feeling semi normal, so I'm not ready to rock the boat with another reduction  just yet...

 

So that's where I am, I survived the adverse reaction and the akathisia and a lot of withdrawal symptoms ....I cant say what will happen in the future, but for now I'm trying to put my life back together. 

[Rosetta]

That’s great to hear!  I’m glad the surgery went well and you are at home.  Hang in there.  It will keep improving. - Rosetta

[Altostrata]

Good to hear, VJ. Stay safe!

[Vonnegutjunky]

On 3/5/2020 at 7:43 AM, planifolia said:

Hello Vonne, it’s been a while. Hopefully that means things have been not too bad and you are feeling well.

I just wanted to ask about the last wave you had that you mentioned here. I remember you saying it took around 7weeks before the intense terror and akathisia-like symptoms eased. I wanted to ask if it was a gradual inprovement or was it rather sudden?

 

I have been in one of my most darkest and hopeless place after many months of just unrelenting horrific symptoms without any ease, and just looking for some hope. 
 

Thank you 🙏 

 

Sorry it's been so long to respond. 

 

For me, all of my symptoms, windows and waves, the way they both start and end are like, and abrupt end or start to the symptoms , but it's very short lived at first,  then as days go the symptoms come on for longer periods each day, or thye disappear for longer periods each day. 

 

Only recently have they also been reduced in intensity....but before the intensity was always always the same, even during what I called my transition periods (going from a window to a wave) 

On 3/8/2020 at 1:06 PM, manymoretodays said:

Hi Vonnegutjunky,

How are you?  Update?

I just moved that nice article you posted to the aromatherapy and essential oil topic. 

And so I wondered.

 

I've had to learn and practice many non-drug coping skills to help me, both while on drugs, in WD, and now off drugs, and still experiencing WDsyndrome.

It's paid off, as I can stop and pause often, just briefly........when I feel the nervous symptoms that come on due to stressful situations.

For example:  freeway driving and music helps, I actually sing along.  And or a bit of aromatherapy.  Or I have these short mantra type things I say, sometimes to myself but if I can, I say them out loud as it helps.  4-7-8 breathing I can do too, and others don't even notice.  Or some EFT tapping.

 

So, it has gotten better for me, with lots and lots of practice.  I do best too, when I keep up with exercise of different types as well.  Also, even 5 minutes, first thing in the morning, of meditation has helped me.  And if I can't, for whatever reason, do meditation, first thing.........I can do it "on the run" too.  Just mini bursts.

Gratitude lists.  Staying mindful and in each moment. 

All of these have helped me.

 

So hoping you are windowing along now.  And are finding some good supports too.

 

Best,

L, P, H, and G,

mmt

Thank you for all of these, I appreciate it. 

[Vonnegutjunky]

Just a quick update. 
 

still hanging at 7mg of Paxil. Haven’t moved it in over a year. Don’t know when I will attempt to reduce again, as I feel I’m starting to feel normal again for the first time in 5 years. 
 

I rarely have symptoms anymore. 
 

oddly, I noticed a huge recovery after my surgery. 
This seems odd, but I really looked back and maybe it was a coincidence? But the day I got my surgery, in recovery they gave me a shot if fentanyl for pain, and I specifically remember about 2 hours after that shot feeling amazing, Like my anxiety, all wd symptoms, they just vanished. 
 

at he time I chalked it up to me waking up for the surgery lol and being happy I survived it, but looking back, I swear something happened that almost rest my brain or something. 
 

maybe someone with more education about meds and stuff can explain this for me. 
 

or was it the fact that my gallbladder is now gone? 
could that be making he process my meds different? 
 

I haven’t had a wave of psychotic terror, or buzzing, intrusive thoughts or anything since March. And I was having them before my surgery. 
 

before the surgery some days I would just feel off and odd, I had what I called brain blips all the time, which I think were seizures, those have gone too. 
 

maybe it is all just coincidence, but I was worried the surgery was going to make me worse. And maybe this is temporary , I don’t know, But it seems odd to me. 
 

im waiting for the other shoe to drop and get hit by a horrible wave. I hope it doesn’t happen, crossing my fingers. 

[direstraits]

wow this is so great...so happy for you!

hope it lasts..

 

I have to have cataract surgery soon,hoping I see a big improvement too.🙂

 

good luck to you. @Vonnegutjunky

xx

[Altostrata]

On 7/6/2020 at 9:10 PM, Vonnegutjunky said:

or was it the fact that my gallbladder is now gone? 
could that be making he process my meds different? 
 

I haven’t had a wave of psychotic terror, or buzzing, intrusive thoughts or anything since March. And I was having them before my surgery. 
 

before the surgery some days I would just feel off and odd, I had what I called brain blips all the time, which I think were seizures, those have gone too. 

 

Maybe the symptoms were related to the gall bladder problem?

[Vonnegutjunky]

I’m genuinely leaning towards that alto. But I’ve never heard of people feeling better mentally after it’s removed. 
 

very peculiar but I’ll take it! 

[Rosetta]

I’m very happy for you!  Enjoy some peace now.

 

Rosetta

[bijay]

Hi @Vonnegutjunky Congratulations to you on the successful surgery and major improvements you have seen!

 

Awhile ago I think you posted about burning mouth syndrome - has that improved as well?  I have it, I believe as a side effect of amitriptyline.

[Vonnegutjunky]

Sorry it’s been so long since I’ve replied. 
 

Ive started working full time again. 
yes bijay, it has gone away thank goodness. I think I remember researching this and it is related to neurotransmitters affecting hormones, from what I remember, it’s also a common issue in post menopausal women (burning mouth) 

 

I

im wondering if we could possible start an akathisia section here? 
 

if not due to moderation concerns , I understand, but let people know Reddit has an akathisia group on there for peer support. 
 

my withdrawal systems still come and go, after my surgery I felt great, but now I’m getting back to baseline funky panic and ruminations, off and on every few weeks. And other lingering things. But I’m doing ok, still holding at around 7mg sod Paxil, and hoping to continue my taper this year. 
 

much love to all of you who run this group ❤️ 

[Vonnegutjunky]

Reaching out. Maybe someone can relate or give insight. I was on 10 mg of Paxil for 8 years. I tried to come off, got down to 5mg, wd hit (I didn’t know that existed at the time) and doc put me back on and doubled my dose. Up to 20. I got akathisia as a result. For years I have been tapering, I am now down to 7mg, have been at 7mg for 2+ years. I have stayed here because I finally became functional again and was able to resume work. So I’ve been holding my taper, waiting to get strong enough to start reducing again. But this last year I felt like myself again, totally normal, happy, just like me for the most part, and just wanted a brake from the med issues 

Well, for the past few weeks, this depression is creeping in. And  within days I feel like I can barely function again. 

I would get waves similar to this, the last one was back in sept of 2020. 

It’s been so long. Could this be normal depression, wd wave, or a medication issue? I wonder about the medication as when I doubled my dose I had a really bad reaction to it. 

I know during wd when we feel bad we look for something to change to make us feel better, and maybe I should wait to taper, or do anything, but I am struggling pretty bad right now. Any thoughts would be helpful. Thank you. 

[Rosetta]

Maybe it’s the “two year wave?”  Have you heard about the 18 month, 2 year, and 3 year waves?  They happen after zero, but as far as your body knows you are at zero.  If you have been very consistent with your doses, your body is balanced.  Maybe these waves happen to people who hold a long time?
 

EDIT:

See brassmonkey’s post about it here.  Maybe the Windows and Wave topic talks about it.  I had them.  I had the 3 year wave, too.  Quite frankly, I seem to have had a 4 year wave, but who knows with me.  I’m going through the change.  
 

Also, I quit everything in the middle of a February.  So, my anniversary lands at the point when the light is changing and the days are getting longer.  Daylight savings time ends, and I feel terrible.  I don’t even have to get up for anything in the mornings this year, but I had a rough time. (I feel better if I use a sleep mask.)  Maybe I have a hard wave every Spring because of Spring.  
 

Don’t assume it’s poop-out.  People do that and start tapering.  Wait a bit.  These types of waves — both the anniversary waves and the Springtime waves, are kind of intense, but short lived.  Give it some time.  It might settle out.  Perhaps you are sensitive to Spring, too? You think you were doing just fine last year at this time?

 

I’m sorry you feel depressed.  That is awful.  Do you go for walks?  That helps me.  This Covid insanity has me pretty down.  I’m tired of the isolation, but I feel anxious about life returning to normal too quickly.

 

I hope you feel better soon.

 

Rosetta

Edited April 21, 2021 by Rosetta
Added everything after EDIT