Kristinhopes: completely lost, what to do now - taper, reinstate, switch

[Shep]

22 hours ago, Kristinhopes said:

Thanks. I don’t think the tongue twitch in particular is withdrawal. Both times it started was from an updose. So I think adverse. I also feel depersonalization and brain poison feeling usually after I take the Prozac pretty immediately. I think it is adverse. Not sure if that changes anything though. I have been on the Prozac going on four months due to withdrawal akathisia from lexapro. The tremor and tongue twitch is new with prizac

 

With adverse reactions, the symptoms tend to get less with less of the drug, so as you taper, you'll likely feel better. 

 

It does look like the Prozac resolved a lot of the akathisia because now you're sleeping without the aid of a benzo. 

 

22 hours ago, Kristinhopes said:

also while it is nice to see the above members td went away.. there’s was much worse than mine, if that even is what I have. Right now it’s just twitches and some mild tremor.  I am hoping it does not progress to that or what those members had,  which is why I have considered stopping the Prozac while I’m only 4 months in and changing to another med. but as I said, I will try a dose reduction first in a couple weeks and hope that helps. 

 

Reducing the dose in a couple of weeks sounds like a good plan. 

 

While you're holding, please go back and re-read your entire thread. I just re-read a couple pages and noticed this:

 

On 12/16/2020 at 8:33 AM, Kristinhopes said:

It’s just I wish I had given the 10mg a bit more time. When I was at 10 I was having more windows, then I dropped to 8 and had another great even better window but two weeks later a wave but then another great  window then two weeks later this unrelenting wave that is  going on 16 days. So maybe I was beginning to stabilize on 10 and since Prozac had a long half life I attributed the 8 mg to my great weeks, but maybe it was residuals from the 10.. now that I am truly at 8 mg maybe it’s just not enough.. my obsessive worrying and depression are worse than ever, there are no windows, sleep got worse ( even before the one day updose) however I am also torn in my thinking that maybe the 8 is too much since I have worsening depersonalization after I take it lately and after that 1 day updose. I would hate to be so close to a dose of Prozac that works for me though and too scared to try it at the same time. Maybe my panic from the updose was not an adverse reaction maybe it was more the fear.

 

While we say "let your symptoms guide you in your taper," being able to sort out what is a withdrawal symptom, an adverse reaction symptom, and a fear symptom can be very difficult. 

 

If you feel that fear is driving some of your decisions, I would simply go by a more calendar-based approach and taper consistently at no more than 10% a month, based on the prior month's dose. 

 

Trying to fix withdrawal symptoms by switching drugs may only lead to more nervous system dysregulation, which at its heart, is what withdrawal is. While the TD symptoms can be frightening, it's really hard knowing if that's truly an adverse reaction based on some of your earlier window patterns when you were on a higher Prozac dose. 

 

[Shep]

One more thought, as I just posted this link over on Healthhopehappiness's thread, who's also dealing with these same symptoms: 

 

Acceptance

 

That may be one of the most important of all of the non-drug coping skills we can learn. 

[Kristinhopes]

Thanks. I’m having a struggle today. I could properly taper and do holds and whatnot if on a med That I did not feel was causing td (again never had tongue twitching in life befor updosed and now it’s all throughout day) plus tremor. My confidence I making it through the Prozac taper with this symptom it is causing me is just too much of an added stressor though. I have not found a story of anyone who got td symptoms and stayed on that med for two years to taper. Even yoga girl was 6 months. Wiggleit got better but he quickly tapered after getting a tongue twitch from a tricyclics. He is really the only other tongue twitch story. I don’t think I can stay on the Prozac. If it was not for this damn tongue twitch I think I could do it. But I am just too sickened by it and the thought of continuing on a med

that is doing that. It has been about 11 days since I slightly updosed and about 9 days since back to the 7.4 but it has been a little over 4 weeks since tapering to 7.4 (other than that updose) . I think I am going to decrease by 10% in one week max for that reason.. two weeks out from updosed. I just need to see if that changes the tongue twitch before making any big decisions like switching back to Zoloft . I know that is not advised but with td like symptoms I don’t know what to do. Also speaking with a neurologist next week to see what they think. Tardive dyskinesia was my biggest fear before all this and it now seems to be manifesting itself. I can’t do two years of tapering with that lingering in the back of my mind that I am prolonging a med that is giving me those symptoms. I can’t accept it because maybe I have a chance to stop it by switching to a med that Never had that effect on me and that maybe I can stabilize on. Then again it could make me worse. This has really thrown a wrench into my mental strength to taper. My depression and derealization  is worsening past fees days because of it , not the withdrawal I don’t think.  
 

Prozac was never my medicine. It was only to be used as a bridge. It never worked and clearly made things worse/ so I don’t think staying on it it for two years to taper is going to work. Of all the ssris I have ever tried it has been the worst and so staying on it as my stanilizing and tapering drug is very hard for Me to wrap my head around when it’s not only not working but is poisoning me the most despite always having been at a relatively low dose.  I am truly stuck more than I ever thought. I don’t want to make anymore decisions. And if it were not for the tongue twitch then I would just stay, but this is really perplexing me. 
 

I know I am rambling. I am in distress. I don’t know what’s going to happen or what I am going to do. I really want to take y’all’s advice but this stupid tongue twitcch!! I do know I am going to at least try another dose decrease first . I want to wait two weeks but every day I am at my current dose I am so anxious because I know it is a dose I definitely get tongue twitches at. So I may wait just one week, especially if twitching gets worse. If it gets better I will wait two weeks. It will have been 5 weeks since starting to decrease to 7.4 aside from the updose days. 

[Kristinhopes]

I am Having worsening tremor and panic and brain fog about an hour after taking my dose. Tongue twitch continues. Since it has been 4 weeks since decreasing to 7.4 aside from the adverse updose days, and I am having adverse effects, would it be feasible to go ahead and drop another 10%? Also since I never stabilized and am having adverse effects in addition, how will a taper work? Like am I going to be miserable regardless now for the two years of tapering?  I am also having panic and anxiety which could be the Prozac if withdrawal or just anxiety about twitch and everything. My anxiety is especially bad around 8 hours after Prozac, within the hour after taking the prozac, and in the mornings upon waking. It’s definitely been at a level where I would have normally reached for a benzo and am trying very hard to not do that. I mean I’m not going to do that. But sure am suffering . I can try to wait 1 more week I suppose. But it feels like I am further poisoning myself in the meantime. Any time it would be advisable to go ahead and drop?

[Shep]

19 hours ago, Kristinhopes said:

Also since I never stabilized and am having adverse effects in addition, how will a taper work?

 

Please note you've never held long enough to see if you would stabilize. In my recent post here, I quoted your post where you mentioned stabilizing at doses as high as 10 mg. So whether or not you're dealing with an adverse reaction is unknown.

 

However, if you feel you can handle the upticks of reducing, you could try the Brassmonkey Slide, which will allow you to make a weekly micro-reduction and see how you do. Due to Prozac's long half life, many people find they don't feel the reduction for a week or more, so you may want to modify this and do a 2.5% reduction every other week for a total of 5% for the month and then hold for a few weeks. This would be a safer option than a straight 10% reduction, as that may be too much.

 

The Brassmonkey Slide Method of Micro-tapering

 

Like I mentioned, you were stabilizing at higher doses. So some of what you're dealing with may be more battle fatigue from feeling sick for so long than anything else. The stress of this may be causing some of your symptoms. That's not uncommon. So I would approach any reductions with caution and without a lot of assumptions because it's really unclear what's going on. 

 

 

[Kristinhopes]

Thanks. I have decided to drop a little  to 7.2 and hold for a couple weeks and then drop again slightly depending on symptoms. The main thing is if I can get this tongue twitch to go I will have a lot more patience and confidence and ability to want to stay at a dose. I don’t know if I’d say I was stabilizing at the higher dose. I was having windows but then Big waves again and then felt better upon reduction to 8 but then the same thing happened.. also tremor and some insomnia. And a bad reaction feeling within the hour of taking my dose most days. Like disoriented and depersonalize fans unable to focus on anything and depressed. I understand what you are saying though so I am going to continue to very slowly taper. No giant jumps. I will likely do the bieeeklu rather than monthly decreases. I’ll take notes over the next couple weeks and report on this decrease to 7.2. 

[WiggleIt]

On 1/16/2021 at 3:18 PM, Kristinhopes said:

Thanks. I’m having a struggle today. I could properly taper and do holds and whatnot if on a med That I did not feel was causing td (again never had tongue twitching in life befor updosed and now it’s all throughout day) plus tremor. My confidence I making it through the Prozac taper with this symptom it is causing me is just too much of an added stressor though. I have not found a story of anyone who got td symptoms and stayed on that med for two years to taper. Even yoga girl was 6 months. Wiggleit got better but he quickly tapered after getting a tongue twitch from a tricyclics. He is really the only other tongue twitch story. I don’t think I can stay on the Prozac. If it was not for this damn tongue twitch I think I could do it. But I am just too sickened by it and the thought of continuing on a med

that is doing that. It has been about 11 days since I slightly updosed and about 9 days since back to the 7.4 but it has been a little over 4 weeks since tapering to 7.4 (other than that updose) . I think I am going to decrease by 10% in one week max for that reason.. two weeks out from updosed. I just need to see if that changes the tongue twitch before making any big decisions like switching back to Zoloft . I know that is not advised but with td like symptoms I don’t know what to do. Also speaking with a neurologist next week to see what they think. Tardive dyskinesia was my biggest fear before all this and it now seems to be manifesting itself. I can’t do two years of tapering with that lingering in the back of my mind that I am prolonging a med that is giving me those symptoms. I can’t accept it because maybe I have a chance to stop it by switching to a med that Never had that effect on me and that maybe I can stabilize on. Then again it could make me worse. This has really thrown a wrench into my mental strength to taper. My depression and derealization  is worsening past fees days because of it , not the withdrawal I don’t think.  
 

Prozac was never my medicine. It was only to be used as a bridge. It never worked and clearly made things worse/ so I don’t think staying on it it for two years to taper is going to work. Of all the ssris I have ever tried it has been the worst and so staying on it as my stanilizing and tapering drug is very hard for Me to wrap my head around when it’s not only not working but is poisoning me the most despite always having been at a relatively low dose.  I am truly stuck more than I ever thought. I don’t want to make anymore decisions. And if it were not for the tongue twitch then I would just stay, but this is really perplexing me. 
 

I know I am rambling. I am in distress. I don’t know what’s going to happen or what I am going to do. I really want to take y’all’s advice but this stupid tongue twitcch!! I do know I am going to at least try another dose decrease first . I want to wait two weeks but every day I am at my current dose I am so anxious because I know it is a dose I definitely get tongue twitches at. So I may wait just one week, especially if twitching gets worse. If it gets better I will wait two weeks. It will have been 5 weeks since starting to decrease to 7.4 aside from the updose days. 

Hi!!! It’s the infamous Wiggle here. As I have it written to some other people on this site, I feel terrible for not having checked in for so long. I have been going through some things, my family has been going through some things, and the world at large, with Covid, has been going through some things. It all created the perfect storm to keep me out of touch.

 

But I see my name got dropped in this thread, and maybe I can provide a spot of hope  

 

[JackieDecides]

1 hour ago, WiggleIt said:

Hi!!! It’s the infamous Wiggle here.

 

WiggleIt, I have been missing from here as well, as I'm sure many have. 

 

nice to see you back! 

[WiggleIt]

6 hours ago, JackieDecides said:

 

WiggleIt, I have been missing from here as well, as I'm sure many have. 

 

nice to see you back! 

 

So lovely to see you here, too!!! Man, what a year, huh? I have lots of catching up to do. How are you these days?

[Kristinhopes]

Needing some positive vibes. Not doing well. I decided to try the brass monkey scale 3 weeks ago. I got down to 6.8 from 7.4 and had to stop (7.66 would be a ten percent drop, so about a 9% drop)). I am having severe depression and anxiety with occasional severe panic attacks and foggy pressured brain and derealization/ depersonalization with few to no windows although some moments slightly better than others. Occasionally I’ll start feeling so out of it I start to almost feel out of touch with reality and get intrusive dark thoughts and feel like I’m losing my mind. Also fatigue. That’s Happened a few times and is scary. I fear this is only the beginning due to prizacs long half life. My last drop was 8 days ago. I was going to finish the ten percent taper monday but held at the 6.8 instead since this was happening, and symptoms really started more happening about 6 days ago.  I am scared of what is happening and what’s to come and defeated since it was less than a ten percent drop of a drug that is supposedly easier to decrease. And scared since the decreases are still going to continue decreasing over the next month. On the plus side, the tremor is there but a little less, almost not noticeable...and the tongue twitch has gone away although I do still have body and facial twitches here and there through the day and still sometimes strange sensation on tongue that feel similar to how it did when it was twitching and like it could still be on the verge of twitching but doesn’t. So that is the only good to have come out of this most recent decrease. I don’t wanna  and can’t updose (adverse reactions) so I’m stuck with whatever happens. But I just am so scared I’m losing my mind or something and feeling very hopeless. Been having a few more early awakenings again though I am still getting mostly 6 hours of sleep or slightly more so not too terrible.  Also emotional crying spells and stress sensitivity/agitation. A couple times I thought I could feel akathisia coming on but don’t think it is quite that yet. But scared it will be. Hoping this is not new withdrawal and just a wave that would have happened regardless. But I doubt it. New plan is to try to stabilize for three months at least with no changes and then taper at 5% . Still scared to hold so long because of adverse effects of Prozac but the withdrawal is horrid too.  Not convinced  I’ll ever stabilize since this is a new drug for me that i was never stable on ever. I was a Zoloft and then shortly lexapro girl. Perhaps adverse effects is all it will ever do.  worried even 5% will be too much, and not sure I’ll ever get off this med that has adverse effects on me and does me no good. I’m scared and Sad and depressed about this and the struggle this has been. Just trying to survive. Wish I had switched back to lexapro when I had the chance to attempt to reinstate on it instead since that’s when this horror really began in September.

[Kristinhopes]

Ps. I got a chin and lip twitch and anxiety after taking 400 mg magnesium 11days ago. I have not taken any since and now know that was way too much. It only lasted half a day, the twitchI took it at night and the next morning that and upset stomach occurred.   Guess it could have caused this setback too though I had a couple blips that made me feel I was already headed in that direction prior to it, but things did get worse since then especially about four days later. I know there’s not too much of a way to know if it’s magnesium setback (doubt it) , withdrawal , adverse, or just yet another wave from never settling after dropping from lexapro in sept 

[Kristinhopes]

So In addition to the above And what I posted three days ago, the past two days have been slightly improved but perhaps an uptick in twitching yesterday. Also my face and lip still does have slight tremor upon smiling. I just don’t feel like I am losing my mind past two days or have severe panic like I did the days prior to that... mostly  today and yesterday just moderate to severe depression and brain fog, although brain fog somewhat improved this morning. Hoping this was a wave I am surfing out  . We shall see. 
 

One other thing: I think I had some urinary retention prior to Prozac but lately it’s gotten even worse especially at night. I went to the doc who confirmed I have a slight bladder prolapse but also that I am retaining some urine. It’s likely related to the prolapse and perhaps I am just being hyper aware to needing to go feelings at night from anxiety, but there is a chance I suppose the Prozac is increasing my urinate retention. Also I feel my hair has thinned some. Just two more possible example to add to how Prozac may be poisoning me. 
 

question: if I start feeling better soon, do you guys think this most recent episode was more likely a wave or withdrawaing from this last dose decrease. It seems if it was withdrawal that it will continue getting worse since prizac is still eliminating the next few weeks due to half life. So it seems if I get better than maybe it was just a wave. Anyways I will likely hold either way but maybe not quite as long ( 1-2 months instead of four based on symptoms) . Thoughts? Thanks 

[Kristinhopes]

Everything from the most recent things I posted seemed to dissipate some over the past few days until today I have brain fog and increasing depression again. I was doing pretty decent past 5 days. even worse, my tongue twitch in the same spot on the front left side is back today throughout the day after having been gone for three weeks since decreasing. So I thought going lower was helping this adverse effect but now it’s back after three weeks despite going lower. Maybe because I’m holding and the poison is accumulating in me if slow metabolizer?  So now I don’t know about waiting months until next small decrease. Thinking about going to 6.6 in two weeks.. currently at 6.8 and have been there a little over two weeks after doing a brasonkey taper from 7.4 that started a little over 4 weeks ago. 

[Kristinhopes]

@WiggleItcan you explain what your tongue twitching was like? Different spots? Did it come and go for weeks ? 
 

@manymoretodays @Shep Any recommendations on rather to hold or continue small reductions based on above posts? Kinda freaked the tongue twitch has restarted. Felt like maybe withdrawaing about five days but then that got better but now feel like I have felt in the past with mild waves. I posted a few updates above. I went three weeks without a tongue twitch while I was tapering from 7.4 to 6.8 recently. Have been holding at 6.8 for a little over two weeks after what h thought we’re withdrawal symptoms feelings but those seem to have eased up after 5 days and I am left with mild wave symptoms of brain fog, moderate to severe depression, depersonalization, some fatigue, and the tongue twitching. Those are the symptoms past two days, prior to that I had a five day window and prior to that window I had about a week there where I felt like maybe slipping into withdrawal with some panic , a couple early awakenings, and some dark intrusive thoughts plus severe depression and some agitation too. My agitation/ irritability is moderate now. What I have now feels like mild to moderate wave. But also new frequent tongue twitching restarted since yesterday in same spot. 

[Shep]

On 2/10/2021 at 2:15 PM, Kristinhopes said:

Not doing well. I decided to try the brass monkey scale 3 weeks ago. I got down to 6.8 from 7.4 and had to stop (7.66 would be a ten percent drop, so about a 9% drop)).

 

You may want to switch to a micro-taper:

 

Micro-taper instead of 10% or 5% decreases

 

 

[Kristinhopes]

While I’m still holding at least a few weeks, I am wondering if it what I Experienced was maybe withdrawal normal but lasted a little longer because it’s Prozac. I am back to being depressed but functional for the past few days.. tongue twitch is concerning, the what felt like slipping into withdrawal with panic and more awakenings and severe fatigue and severe depression and brain fog and ruminating and dark thoughts lasted about a week and has since subsided.. since Prozac draws everything out, is it possible this week of real bad was withdrawal normal for Prozac. Still just doing 5 percent at most at first next time.

[Shep]

20 hours ago, Kristinhopes said:

Still just doing 5 percent at most at first next time.

 

Very reasonable, Kristin. Let us know how you do. 

[manymoretodays]

Hi Kristinhopes,

How are you doing today?

And it sounds like you ARE seeing some decent Windows too, which is great.

I think the thing with Prozac, and tapering, is that you might not feel any WD, until later than some of the other drugs.  I mean with Paxil, and it's short half life, a dosage change for tapering might be felt pretty quickly.  But then with Prozac, with the longer half life, it might not be felt until later.

 

So.....you are doing great, at learning your own patterns, after a tapering drop in dosage, with your Prozac.

And I know the tongue twitches really scare you.  But......I think we are seeing a pattern of that sometimes they are minimal. 

 

And that is so good Kristinhopes. 

 

What are your favorite non-drug coping practices, so far, for dealing with the neuroemotions, and the panic, "depression", brain fog, and ruminations?

This stuff ^, will continue to crop up as you taper, no doubt, so tell me what helps the most.  And then we can help build your skill set for non-drug coping too.

 

I know, I have to practice lot's of things, and sometimes even add in new practices, to maintain.  So.....let's brainstorm a bit.

 

L, P, H, and G,

mmt

[Kristinhopes]

Thank you. Today has been terrible with what feels like withdrawal fatigue and depression and a heavy headed brain fog. Feeling completely defeated and hopeless.l and fearful of what’s to come.  
 

For coping mechanisms, I exercise , don’t drink alcohol or caffeine, try to take everything one day at a time, meditate at times. Try not to panic. When I do panic I try to practice a mindfulness technique. Days like this though, I am so detached and disconnected that I just make it because I have no other choice. I don’t have a choice but to hold on for the ride. But today is not a good day. Maybe tomorrow will be better. Praying furthering withdrawal symptoms, especially the dreaded akathisia, are not around the corner again: but one day at a time. That’s all I can do.. one moment actually. With the extreme fatigue at least I no longer have insomnia, but ironically had more energy then on no sleep than I do on 8 hours. 

[Kristinhopes]

I am crashing hard yesterday and today has been rock bottom in dussaccosication brain fog fatigue and  horrendous depression. My head feels like a log is In it. It has a heavy full block feeling in it. What is that? Is that withdrawal? It feels like I am

getting a lobotomy. I hardly know where I am and can register nothing. I feel I am losing it. And tongue twitch is bad as ever. I can’t do this. Hopefully it’s because my period is about to start and will pass soon but it’s usually not this bad. Also this has been the longest wave with the shortest window ... 21 days with a three day window. In the past my pattern has been two to three bad weeks followed by 7-10 good days. I need a miracle. So hard. Evenings are a little better but still bad. Today is horrid.

[Kristinhopes]

I’m going to ride this out two more months. If nothing changes or gets worse I am going to stop Prozac and reinstate lexapro or Zoloft at a low dose. The Prozac is not helping and I gave adverse effects and it’s causing dystonia or dyskinesia... I think most people would quit a drug that’s not helping them and causing dyskinesia. I am tryiny my best but this is a hell I can’t endure and I guess I need one last Hail Mary: . It’s a risk but so is staying on a drug that is causing dyskinesia and it becoming permanent. If nothing works I guess it’s all over . I have nothing left in me.

[manymoretodays]

22 hours ago, Kristinhopes said:

Hopefully it’s because my period is about to start and will pass soon but it’s usually not this bad.

 

5 hours ago, Kristinhopes said:

I’m going to ride this out two more months.

 

Oh Kristinhopes......the PMS stuff added in to WD can be fierce.

And so that is a very good plan.  To just stay put with your current dose for 2 more menstrual cycles.

Perhaps the PMS will even improve in that time frame.

The hormonal stuff is inter-related with some of the adaptions/adjustments now going on in your nervous system.

And then in 2 months time, keep going with the micro-tapers, even less than 5% that Shep was posting about and suggesting.

 

Sure hope next weeks report is pure Window. 

You don't want to do the other meds really.........I mean I don't think you do........it's your desperation talking.  I've been there, and did most of my more educated tapering and withdrawal syndrome post menopause.  So I hear you, and know it must be a real trial right now.  ((((((Kristinhopes))))))

 

Okay, cheering you on, sending comfort, anything you can do or need, to self soothe right now.  It can all be such a Bear to bear sometimes.  Easy does it, better days ahead.  Give yourself the best self care you can muster on up right now.  Cozy up and just do what you can.

 

L, P, H, and G,

mmt

[Kristinhopes]

@Altostrata and anyone else ...since I am having tardive symptoms, is it suggested to continue this failing Prozac bridge? I am asking you because I hav  red V seen you commenting on other posts pertaining to tardive dyskinesia.  Not sure I can stabilize on a drug that my body rejects and is causing td symptoms. The last tardive symptoms with my tongue began happening after a two day .37 mg updose. Maybe best to try to stabilize on something that never gave me td? I am trapped it feels. The tongue issue 

makes it impossible . And now added withdrawal from a .8 decrease. It’s just unbearable. I could handle the withdrawal but not

Withdrawal  plus td, especially since this medicine is not the bed I was withdrawaing from. It not only has not helped me stabilize but has caused td.  It is drivibn me

Into even further despair. Like even when I feel a window knowing I am having td symptoms throws a while new later if fear and depression on everything. It would be one thing if the td was from the original med that I was withdrawaing but it’s from my failed bridge and I’m just so stuck. If I am going to feel horrible I guess my thinking is y not feel horrible on a med not causing td? I know the answer is because I could feel even worse and now get withdrawal from the prizac too. I feel so trapped. My tongue constantly feels strange and sparking and then frequent twitching so pretty hard to put out if my mind with a coping mechanism especially since td was my worst fear coming true. Also while everyone e here says withdrawal won’t last forever, td could... so I am not sure if it’s worth the risk and maybe a less risky option is a different med altogether. 

[Kristinhopes]

Not .8 decrease.. I mean 8% . Also it is supposed to say adds new layers of fear

[Shep]

Kristin, are you able to post daily drug and symptoms notes for a few days? That would be very helpful to see what's going on. 

[Kristinhopes]

Yes, I can. For now I’ll post notes that I have been posting for myself so not organized like you guys would like but the next set will be. Last decrease was 2/1 to 6.8. I have been having a slight tremor in face and twitching spot on lip and quivering and shaking lips upon holding a smile or making a pucker since before the lip twitching . I noticed it back in October. Also my grandma was on Prozac 25 years. About 8 years ago her voice became and still is very shaky upon speaking, she also had mild lip smacking. Around the time she stopped Prozac a couple years ago her lip smacking stopped but she does still have permanent vocal dystonia and it is difficult to understand her because her vocal cords shake when talking and she does get Botox in them. I don’t think doctors ever told her a cause for either  or even noticed the lip smacking or put two and two together. But it is now my belief she had and still has dystonia a from Prozac. She is now on Wellbutrin without the lip smacking. I say all this because that I am worried there is a genetic predisposition to adverse effects from Prozac specifically . Anyways, here are some notes: I am extremely depressed and ruminating especially about the tardive symptoms but also in a wave or setback of depression, brain fog and off and on extreme face and head and jaw pressure, tightness and tension and fog .
The tongue twitch is throughout the day and pretty frequent in one spot. And even when not twitching I have weird prickling sensations like it’s about to. Not sure how to describe it, kind of prickling, pulling, and burning sensation. And sometimes that feeling seems like it’s in gums too. But there is not an actual movement when I feel that. Yesterday my tongue twitched only a few times rather than every few minutes but still had the strange sensations throughout day. The sensations are on both sides of tongues although the twitching just on one side. Although back in october after an adverse reaction to a big updose (the first time tongue ever twitched) it was on the other side. That stopped after a week and did not come back until early January after a very slight updose for two days. It lasted three weeks that time . Went away for three weeks but still strange tongue sensations like it wanted to twitch while I was tapering recently. Then last week it started again, no updose . 
This morning is starting the same way with strange tongue sensations but no twitch ((yet).
 

2-16: agitation and frustration or anger, no patience. Depressed. Some anxiety. 8.5 hours sleep 

2-17... tongue twitch today after some decaf. Coffee and cold water . The temp change is often when it would happen more . Other than that slightly below baseline but decent,, tongue twitch more in afternoon

2/20- one star day. Deep depression and disconnect and hopelessness.extreeeme fatigue and heavy brain. Also tongue still twitching. 8.5 hours sleep. S.I. 

. Very bad day.

2-21; horrific  deoression. Continuing tongue twitch .. things getting better but still bad at 4 pm

2-22 and 2-23: more difficulty going back to sleep yesterday and then difficulty sleeping in general today: 7 and 4 hours. Lots of panic and anxiety this morning. Depression severe and tears. Cogfog not as bad. Tongue still twitching a lot all throw out day. Tongue feels weird even when not twitching . Like it’s about to and kind of prickling and burning in mouth. Mouth quivers upon smiling or when Puckering, etc. twitches in body and face intermittently throughout day. One spot on lip especially tremors when smiling and has since at least October.  I have noticed this since October actually. Tremors and restlessness upon waking. This last about an hour each day.. so cortisol awakening every morning the past few days. 

2-24: same. Cortisol awakening

1230- Prozac

230- face feels weak and trembly and odd from smiling at friends house. 

330- severe head jaw and face pressure, tension,  and heaviness and brain fog 

700: tension let’s up some. Depression continues constantly.  

10: asleep

530: cortisol tremor /restlessness awakening and depression and ruminating centered upon tardive symptoms and feeling trapped on a drug and like I may have to make a dreaded choice of possibly switching drugs or getting worsening td. Cortisol feeling tapers after an hour. I continue to have body and face twitching as I have for the past few months, sometimes worse than others. Lately it’s been worse but not peak. Quick Twitches on practically every part of body here and there. It’s not a new symptom. I think some of the twitching is withdrawal and some is adverse (like the tongue and some of the face twitching) hopelessness 

[Kristinhopes]

Also are there any people who got withdrawal akathisia, reinstated and tapered slowly and did not get it again while withdrawaing? I know there are people who got it as an adverse effect but I can’t find any success stories for withdrawal akathisia who reinstated and then withdeawalee

the right way but it still did not come back. 
 

and.. feeling an inner tremble like a motor when you wake up for an hour or two.. for me it starts at exactly 530 even with a sleep mask and continues at least an hour... is that akathisia or is that typical for the morning adrenaline spike? Trying to determine if my akathisia is coming back . 
 

also my body twitching and muscles feeling like they are about to jump has gotten more request and worse. Nearly constant twitches jumping around

[Kristinhopes]

I’m probably going to switch to 25 mg Zoloft. Even if I have a window the constant weird lip quivers upon pursing or smiling and the tongue twitches make me obsessed and depressed. I want to try to stabilize on something g that I feel more confident in not giving td. I feel damned either way. If it were not for this adverse effect I could try to push through a very slow taper on Prozac, but this is just too much, I tapered 8% and have suffered and had worse depression since so I must taper super slow. So at that teeny  tiny taper it could take five years to taper off my Prozac all the while having td from it. If there is any chance to prevent it from worsening then I want to. I also know this is. Gamble. Quite frankly I feel trapped hopeless and damned either way. I’m terrified of the impending possibility of adverse reactions s from Zoloft and withdrawal possibility from Prozac but equally terrified every time I look at the strange movements in the mirror, feel constant twitching in my body, and feel strange sensations and twitches on my tongue. Even though Zoloft has pooped out on me in the past , it has not had bad effects other than fatigue and zombiefication at high doses.. maybe a low dose will be enough. I am not confident in this at all, I wish I could stay the course but the quivers and twitches and td are ruining all chances at a slow taper on the Prozac . I’m going to wait a few weeks in case this goes horribly wrong because it’s my sisters wedding and I don’t wanna ruin it. Feels like a life or death choice and either choice could go either way.

[ChessieCat]

Please be sure to do your research about doing a switch/bridge between your drugs if this is what you decide to do.

 

Some things that I've thought of that you should be aware of/consider:

 

Some doctors do a cold switch, ie stop one drug and go straight onto the new drug.  Some do a "wash out" period where the person takes no drug for a short period of time before starting the new drug.

 

It seems that the better way is to do switch/bridge is to do a cross taper where the old drug is reduced a little bit and a small dose of the new drug is started, then a little bit more old drug reduced and the new drug increased a little bit more and this is then continued over a short period of time until only the new drug is being taken.

 

The thing that you need to be aware of with cross tapering from Prozac to a different drug is that Prozac has a very long half life whereas other drugs have much shorter half lives.  It can take about 10-14 days before you notice withdrawal symptoms from the reduced Prozac dose if they occur.  Because you are currently on such a low dose of Prozac this may not be too much of an issue and hopefully the new drug would cover at least some of the withdrawal from Prozac and the long half life may actually work in your favour.

 

Another thing that you need to be cautious of is that you are not given too high a dose of the new drug, especially too soon after stopping the Prozac because it will take a couple of weeks for the Prozac dose to be out of your system, but of course that is just the physical drug, and your brain will still be adapting to not getting the Prozac.

[Kristinhopes]

Thank you. I know that switching is not typically advised but my circumstances are pretty rare and unsettling and make it mentally impossible to overlook. I just hope the withdrawal and or adverse effects don’t do me in. My plan is to stay at a low dose Zoloft and try to stabilize for a very long time even if I still have some of the depression as long as other effects are not too severe. I am thinking doing 12.5 mg one week and then 20 or 25 the following week and holding . Hopefully since that is roughly equivalent ( a little more) than what I am currently taking in prizac the withdrawal will be minimum. I am trying to shoot for a number than is not too low because if withdrawal not too high because of adverse reactions. I have tolesrates doses as high as 200 mg on Zoloft so hopefully 25 mg will be okay, though I know there are no guarantees. I also don’t expect the dose to work on my mental health too much. It had seemed to poop out last time I reinstated, but I am hoping that if I can stabilize withdrawal and get rid of td stuff that I can use my own coping mechanisms, my no longer worrying about smaller and less important stuff, and renewed hope to do well on the low dose. At either rate if I am going to be depressed and having to taper for a long time I’d rather do it o m no one I am not experiencing td on. I know it’s not guaranteed either way: but I’m stuck between two horrible options. 

[Altostrata]

Kristin, it's been 2 years since you took Zoloft, correct?

 

Reintroducing it now is unpredictable. It could be that any SSRI may cause your movement symptoms. You had an adverse reaction to Lexapro, too. If I were you, I certainly would not plan to quickly escalate to 25mg Zoloft.

 

There is a possibility your symptoms are not from antidepressant withdrawal, but from nervous system sensitization from all the drug changes, and any antidepressant might cause an outsized adverse reaction.

 

Why did you go off Klonopin and decrease Prozac at the same time? What happened after you stopped Klonopin?  Your symptoms may be from benzo withdrawal, too. I have a hard time suggesting anyone take a benzo, but that might be your best option for an iatrogenic movement disorder.

[Kristinhopes]

Thanks for the feedback. I decreased the Prozac because it felt activating and I updosed and had panic and tongue twitches for the first time and it freaked. Out and you had mentioned the 10mg may be too high so I decreased. I felt better a couple weeks and then a wave and then better again and a wave again. I quit the benzo at the same time because it was questionable as to if I had taken it long enough and consistently enough to be addicted to them. (6-8 weeks , once every 5 days at most) . I did knit want to gain dependency if I was not dependent yet so quit those . I did have a window after reducing Prozac and getting rid of benzos. The movement disorder began when updosing the Prozac to 20 mg , or at least the tongue twitch but went away for two months after the decrease to 8 mg.. so it began before stopping benzos. Twitching started and again when updosing from 7.4 to 7.68 for a couple of days a couple months later. Since then it’s stuck around with a couple week break. For that reason I think the movement stuff is prizac related. I do fear that any ssri could cause this but that’s what I wanted to try Zoloft. Is it safer to try a totally brand new ssri or reinstate a drug you are two years out on? I know you guys don’t really answer those kinds of questions but thought I’d ask in case. Lexapro did cause tinnitus but not movement disorders. That’s why I don’t want to do the lexapro either even though it is the more recent. I suppose I could just do 12.5 mg Zoloft but then I think prizac withdrawal would catch up to me more likely. I totally understand what you are saying altostrada. But I can’t stay on the Prozac with this lingering. If td was not involved i could, but unfortunately I have this. Especially since I’m having a hard time tapering it too. So is there any other suggested option besides a slow taper from Prozac? Cold turkey or reinstating an old med or trying a totally brand new seen my only other options. I can see where staying on the current med is safest but given the td, in this case I’m not sure. I’ll think some more but driving myself crazy with this decision 

[Kristinhopes]

So you guys think I should stay on the Prozac and start a benzo is the consensus? The td is getting more frequent in my tongue along with a burning tongue sensation. 
 

since Wellbutrin is in an entirely different class, would it be less likely to cause kindling and td? That’s the only other things I can think of. I know going on any medicine is not advised so just thinking aloud. I will start low (12.5) and work my way up to no more than 20 on Zoloft if that’s the route I take . I know if I go to low I may have withdrawal and too high adverse and both those things could happen either way. I am so stuck. 

[Shep]

9 hours ago, Kristinhopes said:

I quit the benzo at the same time because it was questionable as to if I had taken it long enough and consistently enough to be addicted to them. (6-8 weeks , once every 5 days at most) .

 

We don't recommend adding in a benzo unless it's an emergency, but as Alto wrote, "it may be the best option for an iatrogenic movement disorder."

 

If you decide to do this, I would go back on Klonopin at the lowest effective dose to deal with the movement disorder. You could start with 0.125 mg to see how you do. 

 

Let us know what you decide. You may want to re-read your thread and any notes you've taken on paper to see if anything got missed along the way before making your decision. 

[Kristinhopes]

I don’t want to take the benzo for a few reasons: I don’t want dependency and don’t think I have it. The movements started before quitting the benzo. I think if I used a benzo and it happened to help it would be because it is masking the symptoms rather than healing them. They are not debilitating or noticeable to others.... yet. So no need to mask them. But they are extremely distressing for me and hard to make me want to hold and hold and hold knowing they are happening. Also when I did take a benzo when they first started it did not stop them or mask them. That’s why I was thinking about switching to see if they stopped or to get ahead of them before they become worse and permanent since I read it’s important to stop the offending medication when they occur earlier the better. If I could do a normal ten percent taper starting now I would be inclined to as well. But apparently I can’t because apparently I would still need to stabilize a long while and then microtaper. If I could do a 10% taper I’d be getting lower quicker but with a micro taper it’s going to take forever and having td in the meantime is going to be too mentally distressing because it’s going to be taking too long at a microtaper. I could do microtaper if td was not an issue. I don’t think benzos would give me peace of mind because the whole time I would just be thinking they were masking the movements when what I actually want is to make them stop. Is that possible? I know nobody knows. No answer is good. Ideally waiting out and stabilizing but when you have worsening symptoms if td that makes it nearly impossible mentally because it’s like what if this is making it worse ?  I feel compelled to attempt a dangerous cross taper to Zoloft but I don’t think I’m going to be successful mentally if I stay on the Prozac either. I could do it without the tongue stuff but it’s just all too distressing. I feel doomed either way honestly. My coping mechanisms can’t get me through this because of td unfortunately. I think most tapers are excruciatingly painful and difficult but then to add this to it, it is just too much. I really don’t want to change . I’m just trapped 

[Kristinhopes]

By y the way, if it weren’t for the obsessive anxiety and depression about my td and where to go next because of it, I think I’d be in a window kind of today. So let’s just say I stayed on Prozac, living with the td, no benzo, I would need to hold many months to stabilize and then microtaper at about2.5 % since 8% caused symptoms? I wish I could do that, I know I could if not for my damn tongue and mouth.