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2 Months Off After Somewhat Slow Taper. Really Struggling


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#1081 frog

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Posted 12 May 2021 - 05:08 PM

IUN actually not unorthodox at all. It's in fact the exact thing you're SUPPOSED to be doing. My CBT-I doc said the people who struggle with insomnia the most, arepeople like myself who are 'doers'. Like need to take control of situations by taking some kind of action. So if you said "just do A, B, C and your sleep will be normal again!" I would be in luck because I'm great at doing stuff. But with sleep in particular, the more you 'do stuff' and focus on kind of an action/reaction response, you end up getting more and more stressed that sleep isn't coming. And the more you wait for sleep to come the less likely it will come, like lying awake and checking the clock and see it's 3 am and now you're stressed because if it's 3 am that means you might not sleep at all or you might only get 2 hours of sleep and feel like crap the next day. Now you're anxious and anxiety often overrides our need to sleep 

 

The goal like you said is to stop pressuring yourself into sleeping and start letting sleep happen on its own. As you said SO HARD unless you really feel it. That's where I kind of am right now. I keep telling myself that I don't care if I don't sleep but deep down I'm still worried about not sleeping. 

 

What's interesting is that I think what's stopping me personally from sleeping is that I'm too aware in those moments when you're about to go over the waterfall. It's kind of like I'm focusing on and watching for the sleep to come around the corner and when I notice that I'm starting to fall asleep I go AHA! and that wakes me up. I've forgotten what it feels like to just completely let go in that moment and let sleep wash over. So tricky!


#1082 fishinghat

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Posted 13 May 2021 - 08:02 AM

Oh my how true. I can so identify with that. Wise words from the "frog". 


#1083 Mxpro32

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Posted 13 May 2021 - 12:38 PM

I'm starting to regain some mental toughness despite still being pretty volatile with my emotions.  like realizing I'm not as fragile as I thought, and not constantly worrying about falling apart even when my sleep is terrible.  I just get up and function regardless of how tired I am.  I'm trying to "embrace the suck" when times are bad and realize it doesn't really change anything that I feel bad.  I think that eventually leads to more confidence in your ability to cope.  I did have a really depressed week that ended a week ago and thats always tough.  it was pretty bad, but it ended like it always does and everything got better again.  the hit my confidence and sense of security took during this process has been tough to deal with.  I've been through so many hard, tough times in my life and I've never felt like I couldn't handle it or function regardless until this.  it made me feel fragile and like I couldn't count on myself if I needed to and I've never felt like that before.  

 

I know overthinking sleep can make it hard to fall asleep, but can it cause you to spring wide awake in the middle of the night?  I have no issues falling asleep, I just wake up wide awake like its morning and time to get up after 4 hours.  sometimes I'll wake up after an hour and I have no idea what time it is. it feels like its morning and time to wake up.  thankfully my anxiety is pretty much gone most of the time and I'm not waking up with a jolt of adrenaline anymore.  I used to wake up nightmarish every night.  I thought the waking would get better when my anxiety got under control.  


#1084 Mxpro32

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Posted 13 May 2021 - 12:40 PM

frog-  I didn't realize how much of a doer I was and how hard it was for me to let go of things I can't control either.  this process was so miserable and so beyond my control it made me come to terms with it and I feel I will probably be much better off when this levels out due to the skills I've developed to make it through.  I long for the "struggles" I had before this nightmare.  they would be nothing with the skills I've learned now.  


#1085 fishinghat

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Posted 13 May 2021 - 03:43 PM

"it made me feel fragile and like I couldn't count on myself if I needed to and I've never felt like that before. "

 

It really rattles your self-confidence that is for sure.


#1086 frog

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Posted 13 May 2021 - 04:32 PM

I don't think overthinking sleep would affect staying asleep. It sounds like there's likely just a bit of a breakdown in your sleep/wake cycle right now.

 

To put it very very very simply (because that's all I really know lol) there are two opposite forces that affect our sleep/waking: sleep drive and alerting signal. During the day as you're doing your thing your sleep drive is low but builds up steadily every hour that you're awake. This is the thing that indicates to you after say 16 hours awake that it's time to get some sleep and the reason we need sleep more and more the more hours we are awake. If you were awake for 72 hours straight for some reason your sleep drive would be VERY high. Meanwhile during the day your alerting signal counteracts your growing sleep drive and keeps you awake. I think the alerting signal largely functions through regulating various neurochemicals etc. And things like stress or anxiety are just some of the things that could affect your alerting signal being higher than necessary. Your alerting signal is also essentially your circadian rhythm so whereas the sleep drive is a function of how many hours you are awake and can vary, your alerting signal is supposed to be like a wave that occurs at the same time time every day. When you go to sleep your sleep drive is at its highest and alerting signal is decreasing and so you fall asleep because your sleep drive wins. Sleep drive is responsible for the first part of the night. Halfway through the night your sleep drive is pretty much depleted so what keeps you asleep through the rest of the night is that your alertness signal remains low. It'll start increasing as you approach your normal wake time in the morning. So if you're waking up in the middle of the night, in theory that's because you've used up the sleep drive you accumulated from being active for the previous day, but your alerting signal is too high to keep you asleep. 

 

So the question is why is your alerting signal high? Could be a variety of things! Anxiety and stress are contributors for sure. Could also just be that your circadian rhythm is off so your body thinks you should be awake in the middle of the night. I would say this is very possible given that you've been on this cycle for some time.  Could also be some kind of imbalance with some neurotransmitter, but I feel like that's less likely? Hard to say offhand. So in CBT-I the very first step you do is to regulate your bed/wake times to eliminate the variables of what could be affecting your sleep. Make sure that your sleep/wake cycle is as synced up as possible before exploring other reasons. Wake up within 15 mins of the same time every single day and get out of bed as quickly as you can so you can kick start your circadian rhythm. And of course creating a wind down relaxing routine before bed to lower your alerting signal as much as you can so it doesn't wake you up as your sleep drive wears off. 

 

IDK if any of that resonates or is helpful but it appealed to me and my 'doer' personality. I too did not know how much of a doer I was until it was pointed out to me. I don't think it's a bad thing necessarily except the fact that it is the result of anxiety. I'd prefer to not feel the need to do things just to soothe my anxiety lol.

 

I agree with you that my resilience has improved again. My anxiety still flares up pretty easily but it seems to pass over much quicker too. It really is like being a brand new baby and learning how to cope except that you also have a lot of preexisting ideas about yourself and life, etc. to complicate things. A few weeks ago that really obvious tightness in my whole chest that I've had for probably a year suddenly stopped. Out of the blue. So I guess things are still changing which is hard to believe


#1087 Mxpro32

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Posted 13 May 2021 - 05:57 PM

yeah, for me the overall sensitivity seems to be VERY slowly improving.  the funny thing about the sleep is after 2-3 hours of being awake i get really sleepy again.  typically when its time to wake up I'm really sleepy.  on the weekends I sleep in at that point to catch up on sleep.  thats probably not great for my circadian rhythm but its the only thing that keeps me sane.  i catch up and feel a little more normal again.  I've been going to bed at the same time every day, and I get out of bed when the baby decides its time, lol.  


#1088 frog

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Posted 14 May 2021 - 12:41 PM

Sounds like your circadian rhythm might need some work :)

Having a new baby I'm guessing messes up everyone's sleep cycles though so this might just be par for the course. I think you can use melatonin to help regulate things as well but I don't know the proper way to do it. Will let you know if I find out. My CBT-I doc had me order some melatonin to help while I transition away from Seroquel but hasn't explained yet the best way to use it. 


#1089 invalidusername

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Posted 16 May 2021 - 06:18 PM

I don't envy you at all - you really have got your work cut out with the baby brother.

 

Regarding Frog's suggestion, I do not think you will find a "one size fits all" approach to using melatonin. There are too many variables at work here to make an informed decision. One would have to undergo a barrage of sleep studies to find out anything significant. But all the time it is in limbo, you can steer it in the right direction. It is when it becomes habitual that there can be issues.

 

I have something called Delayed Sleep Phase Disorder - have had it around 15 years or so. All test bear out that I am stuck with this for good. I sleep around 4am and wake 11am. Sometimes this can be a little later, but living in the city, the noise can play havoc with my sleep - as can people ringing at the door.. "oh I forgot you had that sleep thing". Great... !

 

LDN has the same thing, but again, all the while you are maintaining something of a schedule, it will regulate itself in time. DSPD is only cause by habitual sleep patterns - for me it was my second Masters degree. I would be in the studio all night, sleep for a couple of hours and then wake for the first lecture! Did this for a year. Some can still come out of this, but as I said, too many variables and our clocks can be subjective in much the same way a lot of neurological concerns are.


#1090 frog

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Posted 17 May 2021 - 07:57 PM

IUN my CBT-I doc said he thinks I have DSPD as well. I guess it means that if I were left to my own devices I would eventually stay up later and later and wake up later and later right? That sounds about right. He told me I would likely need to use an alarm to wake up for the rest of my life to make sure I stay on a normal sleeping schedule. I'm also often VERY groggy when I wake up. Not sure if that's the Seroquel or something else but waking up is never easy no matter how much I sleep


#1091 invalidusername

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Posted 18 May 2021 - 05:53 AM

DSPD is typical of people that have done extended abnormal working hours, and apparently post-grad students and doctoral students are the best candidates! So I was screwed from the off! The bottom line is that the switch from serotonin to melatonin happens a lot later than it should - there is nothing you can do if you have DSPD.

 

People have told me "just go to bed at midnight and it will soon work itself out". Been there, done that. I lie aware in bed for 4 hours! So my response to these people is "ok, you try going to be at 8pm and see how easy that works!". 

 

LDN has it even worse. He sleeps around 7am and wakes around 5pm. He also need his "siesta" for an hour or two around 10pm. He doesn't have a lot of energy, hence the extended sleep hours, but he gradually got later and later as he found the night easier for his condition. So his route to DPSD was slightly different. But again, he makes it work.

 

If I have to wake up around 8 or 9am for an appointment, then I am knackered for the rest of the day, and it is not like I can catch up with a nap in the afternoon. Can't do it.

 

But had it for a good 15 years or so now, so I have learnt to adapt. I am a heavy sleeper and I enjoy the solitude of the early hours when I cannot be called, texted, emailed etc. It is a good opportunity to relax. So it has its good side :)


#1092 Mxpro32

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Posted 01 June 2021 - 05:54 PM

I've been doing pretty fantastic this week, other than not sleeping well.  I haven't been anxious, and more importantly, I've been having a feeling of well being which is really rare.  I've been able to enjoy what I'm doing in the moment without worrying about other stuff, whether its just the feeling of my sheets in my bed, or spending time with my kids.  I've been having a positive feeling about myself and my business.  then saturday, sunday, and yesterday morning I was waking up in fear.  I feel like I'm waking up in fear first, then a bunch of fearful thoughts come at me.  I think the fear is first, because many of these thoughts are just plain ridiculous.  my wife pointed out that I report waking up in fear after I've had a few beers, which I did with friends the last few nights.  it was literally just 2 beers a night, but there does seem to be a correlation.  there is a remarkable difference in my view of things with the marked shift in mood.  its so effortless when things were good, now everything is terrifying and all my thoughts are fear based.  I got some xanax just to have in case I have bad anxiety and one day I took one (.5mg) to take a nap cause I was exhausted (no anxiety really) and my anxiety was terrible the next day too.  It's like my gaba system is all screwed up.  I'm trying not to read too much into this snag, as I know they are coming, but its always disappointing after a good stretch.  


#1093 frog

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Posted 02 June 2021 - 01:49 PM

Alcohol is an anxiety trigger even for people who have not had issues with withdrawal (can be a depression trigger too). It's practically a psych med of sorts since it impacts levels of neurotransmitters. And if you decreased or stopped drinking over the past year+ it's likely that it's affecting you more now. I guess the follow up question is whether you feel better/less anxious WHILE you're drinking? For me, the answer is yes. Plus drinking is a social activity and it allows me to feel normal and happy while spending time with friends. So it's kind of worth the next day BLAHs and I'm able to justify it as such. I also don't get anxiety QUITE as bad the next day anymore as I did not long ago. Not sure if that's just because my system has gotten more used to alcohol, or because my neurotransmitters in general are still changing and adjusting. Probably a combination. 

 

If you're having fun drinking with your friends, I say don't let the next day anxiety stop you! Do your best to go back to living your life on your terms :) It'll get better. 

 

Also I find that I no longer judge my days or weeks in stretches of good and bad. I bounce back really fast now. And Usually the anxiety can be traced to something, whether it's drinking or doing something that's making me anxious. And it passes over within hours or a day. Having the freedom to stop focusing on the anxiety so intensely has been the biggest relief. Hoping you can reach the same soon


#1094 invalidusername

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Posted 03 June 2021 - 05:53 AM

I've been able to enjoy what I'm doing in the moment without worrying about other stuff.

 

This is a great place to witness and I am so happy for you MX.

 

Regarding the fear, Frog is absolutely right - the alcohol is in most cases a trigger. I found the same thing with dramamine. When I used to use it a lot for coping with stress, it worked well and sleep was fine, but as I have cut it right down, I have now found that it really impacts my sleep and waking. I am even taking a quarter of a tablet (12.5mg), and even that has a bit of an effect insomuch that my dreams are more vivid and causes derealisation in the morning which makes me uncomfortable. But if I were to take a whole dose (50mg), nightmares will ensue and I will get the fear in the morning - not worth it at all. I have had to use micro doses of Kratom in its place as it does the same thing, but I have no side effects whatsoever.

 

@Frog - great to hear that your bouncing back is on the increase. I found the same thing. Obviously the time take was consistent with the trigger, but overall, it has reduced. For example, yesterday I did 2 repairs in the workshop, then was on call for 6 hours, and then did 3 hours of study. Next day would have slayed me a few months ago, but here I am, quite content, doing my rounds on the forum.

 

I have been discussing the silver lining of the lockdown with LDN in that I have been the busiest over the last year than I have ever been over 20+ years of self-employment, but it has raised the bar of stress tolerance significantly. It is very liberating insomuch that I can feel more confident in planning things a few days or week in advance knowing that I am likely to be ok when the appointment arrives. This is what I really had issues with before - the not being able to commit to appointment unless they are the next day or two as I can limit the odds of feeling too bad to fulfil the appointment. But all the same, it is imperative to keep tabs on what you are doing, how much, and the feedback from your own body.


#1095 Mxpro32

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Posted 15 July 2021 - 01:46 PM

my anxiety has been on a tear this last 2 weeks after being mostly good for a while now.  I recently started having a good attitude and being productive in spite of the anxiety, but the waking in terror thing has been off the charts and makes things difficult. I usually takes me half the day to recover and get things under control again.  I'm only sleeping 4-5 hours again too this week.  I usually sleep 12-4-5.  I tried going to sleep earlier at 10:30 and I woke up at 3 and was unable to go back to sleep.  the last few days I keep getting this wave of energy that flushes in.  it feels like the uncomfortable feeling when the ritalin would kick in but stronger, and I'm not taking the ritalin.  it even makes me have to use the bathroom like the ritalin rush would.  its starting to be clear to me again that my system still has some adjusting to do.  its hard to believe that since I'm coming up on 2 years, but my body still does weird things.  I'm trying to accept that if I want to stay off of meds, I probably won't be the same person or feel the same peace I used to.  there are enough positives at times that I think it may be worth it, but life is far more exhausting now.  every time I almost decide to go on meds, I back out and commit to staying off for a while longer.  I am really curious if a low dose would help real things in a bit and help with sleep though.  I wish I knew that it wouldn't set me back too much on recovery if I were to quit again.    


#1096 fishinghat

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Posted 15 July 2021 - 02:32 PM

Those sound ;like adrenaline rushes. Not uncommon with most withdrawal but seems more common with ritalin withdraawal. I wish I could make it go away Mxpro. Hang in there, the good times will come back.


#1097 frog

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Posted 15 July 2021 - 03:11 PM

I think if you're still talking yourself back out of going on medication then it's not time :)

I knew meds were the right choice when one day the idea of going on them and feeling better felt a lot more soothing and hopeful than staying like how I am today regardless of the potential consequences. 

 

One thing I think that's worth being aware of though is that chronic stress has a very wide impact on essentially all systems in our body because there are cortisol receptors all over the place. It can cause a lot of problems both in the shorter term and definitely long term as well because your cortisol levels become out of whack which dysregulates many other things like a domino effect. So whether it's medication or something else I hope you find ways to break through the stress loop. 


#1098 Mxpro32

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Posted 17 August 2021 - 11:24 AM

so far I'm getting all the side effects of medication and none of the benefit.  my sexual sensitivity is way down and I'm having trouble reaching climax.  I'm sweating a lot at night.  my brain feels foggy.  I know its only been 8 days and thats early to feel the benefit, but I just figured the side effects wouldn't kick in so fast either.  


#1099 frog

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Posted 17 August 2021 - 03:33 PM

Blah sorry that sucks. I think most people don't start to see a lot of benefit until 10mg which is why it's typically the starting dosage. I guess I'm super sensitive to medication. At 5mg my mood was significantly improved and I noticed that I wasn't devolving into panic when I was dealing with stress at work. On the other hand I felt super tired. I could barely get off the couch. Was lucky to not get the night sweats though. I had those really bad with Cymbalta.

 

At 7.5mg I noticed an improvement in the anxiety overall. I don't suffer with depression so I can't speak to that. I think if you're seeing any improvement right now that probably means you're on the right track but if not I don't think that means anything yet either. I don't think my doc expected to see any difference at 5mg tbh. See how you feel when you increase the dose and go from there. At 5 or 7.5 it should be very easy to bridge to a different SSRI if needed


#1100 Mxpro32

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Posted 17 August 2021 - 04:16 PM

I had a couple days of feeling better than I have in a long time.  I had the urge to smile instead of cry.  for some reason the last two days I've been depressed with a feeling of impending doom and feeling like I want to cry.  apparently things can be rough with startup so I'm sure it will get better.  the sleep is still terrible.  4 hours last night.  


#1101 Mxpro32

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Posted 18 August 2021 - 11:19 AM

this is getting out of hand.  I'm having trouble falling asleep now too. I couldn't fall asleep til 1, then I was WIDE awake at 3:00.  I had emotional pain and depression all day yesterday.  this isn't the parachute I was expecting so far.  


#1102 frog

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Posted 18 August 2021 - 11:24 AM

Yeah my sleep still totally sucks sorry to say. I went up to 10mg a few days ago and it's been tough. I feel like the melatonin stopped working or I got used to it? 

 

Hoping you see more of those great days in the coming weeks though. That's exactly what I first felt. I was feeling unencumbered, unconditional joy and lightness, not despite the dread and fear but just without it. Something I haven't felt in 2 years

I've just been feeling like myself again. 

 

With that said they do warn that anxiety and probably depression can get worse at first when starting up. Hang in there and hopefully you turn a corner soon. When are you updosing? 


#1103 Mxpro32

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Posted 18 August 2021 - 11:44 AM

Yeah my sleep still totally sucks sorry to say. I went up to 10mg a few days ago and it's been tough. I feel like the melatonin stopped working or I got used to it? 

 

Hoping you see more of those great days in the coming weeks though. That's exactly what I first felt. I was feeling unencumbered, unconditional joy and lightness, not despite the dread and fear but just without it. Something I haven't felt in 2 years

I've just been feeling like myself again. 

 

With that said they do warn that anxiety and probably depression can get worse at first when starting up. Hang in there and hopefully you turn a corner soon. When are you updosin

 

 

I was hoping to not have to updose due to the side effects.  did your sleep get worse on lexapro, or just stay bad?  cause mine has gotten significantly worse.  its back to how it was when I first came off cymbalta, or maybe even worse.  this sucks.  my depression is way worse so far too.  


#1104 frog

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Posted 18 August 2021 - 12:48 PM

Sleep got worse

 

I would let your doc know and see what they think, whether you should hang on at 5mg until the side effects die down a bit before increasing or whether you should increase now so you can at least hopefully get the benefit of the medication even if you're dealing with side effects too. Hopefully they have an opinion based on their clinical experience. My doc said 5mg is unlikely to have much benefit. You may not see a lot of the positive until you get to the 10mg which is the typical starting dose


#1105 Mxpro32

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Posted 18 August 2021 - 02:47 PM

I was really hoping it would help with sleep

#1106 frog

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Posted 18 August 2021 - 03:04 PM

It's still likely that it will help sleep in the long run. Also if you feel like you're really tired in the day and really activated at night, I think taking the lexapro at night is an option too but you may want to wait and see how things shake out first


#1107 fishinghat

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Posted 18 August 2021 - 04:39 PM

Man, I just hate these kind of conversations. Lexapro has such a good reputation as an antidepressant BUT when you us a new antidepressant to compensate for a withdrawal the bets are off. So so many times people get wore down by their withdrawal, and rightfully so, and decide to go back on a different antidepressant to get some releif but it just doesn't work out. Why? The is still so much we don't understand about these drugs and their effects. It is just not fair.


#1108 frog

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Posted 18 August 2021 - 06:36 PM

So much we don't know! That's why it took me so long to agree to take medication. And the waiting period when you finally do make the big decision to take meds and seeing actual relief can be very agonizing


#1109 Mxpro32

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Posted 18 August 2021 - 06:57 PM

Man, I just hate these kind of conversations. Lexapro has such a good reputation as an antidepressant BUT when you us a new antidepressant to compensate for a withdrawal the bets are off. So so many times people get wore down by their withdrawal, and rightfully so, and decide to go back on a different antidepressant to get some releif but it just doesn't work out. Why? The is still so much we don't understand about these drugs and their effects. It is just not fair.

 

so this is a common thing?  my depression is out of control lately.  its the painful emotional depression.  I was really starting to think I still couldn't be dealing with withdrawal since it has been 2 years.  the kicker was that the last 2 months everything was getting worse.  do you think there's a chance I'll adjust and things will get better on the lexapro?  


#1110 Mxpro32

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Posted 18 August 2021 - 07:02 PM

is this going to reset my withdrawal recovery clock if it doesn't work out?





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