poohstix: Lexapro, possible kindling and attempt at taper

[getofflex]

19 hours ago, poohstix said:

I updated my signature to include my microtaper off lexapro. 

Thank you - it looks great! 

 

19 hours ago, poohstix said:

I had a couple of brief, several-day waves, one 3 weeks ago and one just ending right now. I am not sure if this was due to my possible accidental extra dose of lexapro on 10/29 or another reason.

It may very well have been from the extra dose.  It's good they were brief. I suggest you wait until you are stable for a couple of weeks, before resuming your taper.  

 

Stability

 

WD Normal

 

19 hours ago, poohstix said:

I've noticed that I'm decreasing my doses more rarely now. I started out doing a microtaper akin to a Brass Monkey slide but then, whenever I am more symptomatic than I would like, or when I am having a wave, I would just hold. Basically, when in doubt, hold. I wonder if this is overkill, but again, I would really like to not have to be where I was in early 2023.

I think you are doing the right thing! This is not a race, and it's good to really take your time and be patient.  We see far too many people who taper too fast, and end up very sick, and it can take many months to recover from that. I also went extremely slowly the last 2.5 years of my taper, and I'm very glad I did.  

 

I see that you are doing a linear taper.  This is fine, as long as the percent you taper doesn't exceed 10% of the current dose per month.  However, as you get into the lower doses, it is especially important to do the exponential taper, which is 90% of your current dose, not your original dose. These drugs affect a disproportionately larger number of receptors at the lower doses.  Look at the chart in the link.  Over on the left had side, at the lower doses, the drop is so steep, it is almost vertical.  That is why it gets harder to taper at the end, and it is especially important to go really slowly and carefully at the lower doses.  

 

SERT Transporter Occupancy Studies

 

 

 

 

[poohstix]

1 hour ago, getofflex said:

Thank you - it looks great! 

 

It may very well have been from the extra dose.  It's good they were brief. I suggest you wait until you are stable for a couple of weeks, before resuming your taper.  

 

Stability

 

WD Normal

 

I think you are doing the right thing! This is not a race, and it's good to really take your time and be patient.  We see far too many people who taper too fast, and end up very sick, and it can take many months to recover from that. I also went extremely slowly the last 2.5 years of my taper, and I'm very glad I did.  

 

I see that you are doing a linear taper.  This is fine, as long as the percent you taper doesn't exceed 10% of the current dose per month.  However, as you get into the lower doses, it is especially important to do the exponential taper, which is 90% of your current dose, not your original dose. These drugs affect a disproportionately larger number of receptors at the lower doses.  Look at the chart in the link.  Over on the left had side, at the lower doses, the drop is so steep, it is almost vertical.  That is why it gets harder to taper at the end, and it is especially important to go really slowly and carefully at the lower doses.  

 

SERT Transporter Occupancy Studies

 

 

 

 

Yes, I am doing a linear taper so far because the decreases at this point are 2-3%. I was going to decrease the decrements down the line so it’s always a 2-3% drop. 
 

What are your thoughts on getting a Covid vaccine? I’m leaning more toward getting one now, because it seems most people who have posted on the Covid/Covid vaccine thread have not had bad experiences. But I’d probably want to wait until it’s been some time since I’ve been in a wave?

[getofflex]

I don’t have an opinion on the Covid vaccine, one way or the other.  

[poohstix]

Update: I have been on my present dose of lexapro, 3.0, for almost three months now. I had my accidental up dose on 10/29 and may have had a couple of waves in November that I could attribute to that, but otherwise have been doing well. (I consider a “wave” to be days with symptoms that are at least 2/5 on my 1-5 scale or multiple days in a row with sleep problems).

 

However, I’m still stuck on when to go down in dose, since I understand stability means your symptoms are consistent and predictable.  When I have symptoms, they are mild: 1 on my 1-5 scale, and they last a couple hours a day at most. L But they are not necessarily predictable. I may have a stretch of almost symptom free days and then have a night of poor sleep. I may have a great night of sleep, but still have a symptom flare during the day even though it’s a weekend and nothing is going on. I’m still having a hard time determining what can trigger symptoms. At times I thought certain foods or activities acted as triggers, but eliminating them did not clearly help. The only thing I’ve been able to work out is that in the middle of my cycle (right around ovulation) things can get worse for 1-2 days. 
 

I guess my biggest concern is that things are going to get worse again if I decrease my dose. Things have definitely improved over time but I don’t want to go back to the way things were last winter and spring… even in the summer they were worse than they are now. Oftentimes, I think to myself, I am ready to decrease now, but then something happens: I have a poor nights sleep or symptoms and then decide against it. But this is probably not serving me well, because the symptoms I get could also be side effects, and I’m not working toward the long term goal of getting off meds.

[poohstix]

I ended up going down to lexapro 2.95 on 1/14. I figured that windows and waves were probably still going to happen no matter where I am in the taper process, and just because I am having windows and waves doesn't mean I am not stable. I think as long as I am having symptoms that are tolerable and within a certain range of severity, I can consider myself stable.

[getofflex]

I’m glad to see you doing a prudent and cautious slow taper now.  It is good that you are listening to your body and waiting until you feel stable to do so.  I remember too trying to figure out if I was really stable enough to taper and having the sleepless night. Good luck!   

[poohstix]

Update: I went down to 2.9 on 2/24. Things have been pretty stable. The most time passes, the more stable I seem to get. Now most days I have hardly any symptoms at all, and if I have a wave it is 1-2 days. 
 

The downside, I guess, is that this is me decreasing by a 2% at a time! (Forget the 10% rule lol). I guess I will be at this for a really long time and working with a compounding pharmacy or making dilutions myself is in my future a few years down the line. 

[getofflex]

13 hours ago, poohstix said:

The most time passes, the more stable I seem to get. Now most days

Yes, time and patience are the keys to getting off these drugs safely! I  applaud your patience.  It's much better to do a long slow taper, than rush things and go into CNS instability.  Keep up the good work!  

[poohstix]

On 2/28/2024 at 9:08 AM, getofflex said:

Yes, time and patience are the keys to getting off these drugs safely! I  applaud your patience.  It's much better to do a long slow taper, than rush things and go into CNS instability.  Keep up the good work!  

Thank you! 
 

I am also thinking about starting exercise again. I have not done any in a few months because I thought at one point it triggered a wave, but I hope that if I start with just 5 minutes here and there it should not be too bad.

 

The challenge right now with this process is that if there is something that I think could trigger a wave or seemed to trigger one in the past, I am reluctant to do it. As a result, I don’t feel comfortable traveling, I stopped exercising and I hardly spend time outside when it’s cold. I avoid large gatherings because of the risk of catching COVID, and have not gotten the most recent booster vaccine, because that too could have an unpredictable effect. I’ve stopped watching what I eat because I figure I need to have plenty of calories to build a new nervous system, so to speak, so I’ve gained weight. It’s ok, but it is all kind of limiting. 

[getofflex]

It's good that you will start exercising gradually.  Some of us, myself included, have exercise intolerance.  I'm able to walk for an hour, but 2 months ago tried doing some strength training, and it amped up my symptoms, so I've given that up for now.  I can relate, I also avoid things that I think might have triggered a wave.  

[poohstix]

On 3/1/2024 at 10:04 AM, getofflex said:

It's good that you will start exercising gradually.  Some of us, myself included, have exercise intolerance.  I'm able to walk for an hour, but 2 months ago tried doing some strength training, and it amped up my symptoms, so I've given that up for now.  I can relate, I also avoid things that I think might have triggered a wave.  

Update: I was very stable for months, and then I just got a sinus infection a few days ago, and suddenly I’ve got sleep problems again that are as bad as last January when all this started. I have not been prescribed any antibiotics because it’s too early in the course of the infection. 

My overall withdrawal Symptoms are still pretty minimal during the day. But at night it’s either being bothered by nasal congestion, or sweating/warm hands and feet (those two symptoms I’ve had recently as part of withdrawal), or nothing is happening but I’m just not sleeping. I fall asleep in the early morning when it’s soon time to get up, so I’m getting some sleep, just at the wrong time. This is ok on a weekend because I can sleep in some but going to work like this is going to be miserable.
 

Is this a thing that happens? An infection triggering a wave? I’m hoping that it’s just my body being under stress from the infection and will pass soon.

[getofflex]

2 hours ago, poohstix said:

Is this a thing that happens? An infection triggering a wave? I’m hoping that it’s just my body being under stress from the infection and will pass soon.

This could happen to someone who is not in withdrawal.  I suggest that you wait until this infection is past, and perhaps it would be prudent to hold on your dose longer than usual before you do another reduction.  Make sure you are well, and stable, for a couple of weeks before doing another reduction.  

[poohstix]

49 minutes ago, getofflex said:

This could happen to someone who is not in withdrawal.  I suggest that you wait until this infection is past, and perhaps it would be prudent to hold on your dose longer than usual before you do another reduction.  Make sure you are well, and stable, for a couple of weeks before doing another reduction.  

True, although before withdrawal/lexapro being back in my life in Jan 2023, I've never had sleep issues with infections. I guess it is possible that withdrawal changes how your body works, and anything that causes physiological stress can cause insomnia.

[poohstix]

Overall, things continue to be stable, which is great news. The withdrawal symptoms and waves, if they happen are very mild. I have a system of rating symptoms 1-5, and usually symptoms are 1/5, rarely 2/5. The only problem they really cause is if they happen to occur at night, they can disrupt sleep, but that is rare.

 

I've tried to add exercise to my life, and started with walking slowly for just 20-30 minutes, twice a week on weekend days. I wonder if someone could take a look at my data so far and see if I am jumping to conclusions, or I really do have exercise intolerance.

 

Week 1:

Saturday: 20 minute walk. No issues

Sunday: 20 minute walk. No issues

No issues during the week

 

Week 2:

Saturday: 20 minute walk. No issues. Decreased lexapro dose as previously planned.

Sunday: no walk. Higher anxiety than normal. 

No issues during the week

 

Week 3:

Saturday: 30 minute walk. No issues during the day. Sleep disruption that night with heart pounding and sweating.

Sunday: No walk. Higher anxiety than normal. Difficulty getting to sleep

Monday: Difficulty getting to sleep.

No more issues that week

 

Week 4:

Saturday: 30 minute walk. No issues

Sunday: 30 minute walk. No issues during the day. Woke for 2 hours in the early morning Sunday into Monday with some sweating and nausea, then got back to sleep.

Monday (today): 30 minute walk. No issues so far

 

I wonder, am I in need of more information? Certainly, things could be confounded by the lexapro decrease on week 2. But let's say I do have exercise intolerance. Is it best to avoid exercise entirely? Or should I experiment with spacing out my exercise days and doing even less every time, such as 10 minutes every other day? Or is it ok to just continue this way because the symptoms are mild? Yes, sleep gets disrupted at times, but it's nothing like it was back when I first started my journey with tapering. I already walk fairly slowly such that my heartrate barely gets about a hundred beats per minute, which is why this is frustrating - in the moment, the exercise barely feels like work, but somehow hours or days later it seems to cause problems. @Shep, could you weigh in on this, since I remember you said you are a runner? I used to be a runner too, but now, as you can see, even walking is questionable.

 

I am hopeful that this, like everything else, will heal with time. On the bright side, there are some withdrawal symptoms that I used to get all the time in the past, but now, I hardly ever get them.

[getofflex]

It sounds to me like you may have exercise intolerance, compounded by the Lexapro reduction.  If it were me, I wouldn't avoid exercise entirely.  Instead of taking your walks 2 days in a row, space them out more, and do it more regularly.  I would suggest starting out with even shorter walks, say only 15 or 20 minutes.  Try doing a walk once every 3 days.  See how that goes.  I can understand why you are frustrated - I would be too.  

 

The only thing I would consider is that you are doing your walks on the weekends.  Does your schedule change on weekends vs weekday?  This could also be a compounding factor.   I'm assuming you are alcohol and recreational drug free.  If not, that could cause problems too. 

 

I have exercise intolerance too, but I'm able to take walks.  However, I've been walking daily for many years, so I think my body was already used to this before I started my tapering and went into WD. Take comfort in the fact that this is temporary and eventually you will be able to exercise more.  

 

I'm thrilled to hear that other than this you are stable!  I attribute this to the fact that you are doing a very slow and cautious taper.  Keep up the good work!  

 

Just FYI, Shep is no longer with us.  She is very busy with other stuff.  

Edited May 22 by getofflex

[poohstix]

5 hours ago, getofflex said:

It sounds to me like you may have exercise intolerance, compounded by the Lexapro reduction.  If it were me, I wouldn't avoid exercise entirely.  Instead of taking your walks 2 days in a row, space them out more, and do it more regularly.  I would suggest starting out with even shorter walks, say only 15 or 20 minutes.  Try doing a walk once every 3 days.  See how that goes.  I can understand why you are frustrated - I would be too.  

 

The only thing I would consider is that you are doing your walks on the weekends.  Does your schedule change on weekends vs weekday?  This could also be a compounding factor.   I'm assuming you are alcohol and recreational drug free.  If not, that could cause problems too. 

 

I have exercise intolerance too, but I'm able to take walks.  However, I've been walking daily for many years, so I think my body was already used to this before I started my tapering and went into WD. Take comfort in the fact that this is temporary and eventually you will be able to exercise more.  

 

I'm thrilled to hear that other than this you are stable!  I attribute this to the fact that you are doing a very slow and cautious taper.  Keep up the good work!  

 

Just FYI, Shep is no longer with us.  She is very busy with other stuff.  

That sounds like a good idea. I will do a 15-20 minute walk every 3 days.

My schedule does change: I work full time, Tuesday through Friday, 9 am to 6 pm, sometimes later. I have Sat-Monday off, so I thought it would be most intuitive to exercise Sat and Sunday, and I was hesitant to do Monday because I did not want it to affect my sleep for work the next day. But I could do a walk on one weekend day and one weekday. 
 

I hate to say it, but I might also be stable because early on in withdrawal I was exercising almost daily in hopes that it would help things, but then I thought it was making things worse, so I stopped almost completely for 10 months. But in retrospect stopping completely was probably not the best idea, because then I got deconditioned, and starting again is a stress on the body. 

[poohstix]

Also, yes I am alcohol and recreational drug free. Ever since I developed withdrawal I don’t even drink coffee. 

[poohstix]

Another frustrating thing is that I've been slowly gaining weight in withdrawal. Part of it could be less exercise of course, but I also learned that the high glutamate state in withdrawal can cause resistance to a hormone called leptin, which is responsible for appetite and energy expenditure in the body. I see a lot of people lose weight in withdrawal because they feel sick to their stomach or don't feel like eating, but it seems some people gain weight or see appetite go up. 

 

I've been counting calories, and my calorie tracker says I should be losing weight, but I'm slowly gaining, about 1 lb per month. It may not seem like much, but it adds up over time. Not sure what to do except to increase my calorie deficit and do my best to exercise. But being hungry could also could cause an increase in stress hormones, and that could cause increased withdrawal symptoms. Sometimes it feels like there is no winning.

[getofflex]

I’m sorry to hear about your weight gain issues. Unfortunately, cutting calories too much Can mess with you and ramp up withdrawal symptoms. At least that’s what has happened to me when I tried to reduce calories.  
 

I’ve only been gaining weight at the rate of about a pound a year, so I’m not too worried about it. I’m gonna wait until my system is more robust and then try to lose the weight that I have put on.  I would rather be slightly overweight, then go into withdrawal mode.  I have read online that low blood glucose levels can increase either cortisol or adrenaline, which, of course will mess with your nervous system and create activation.  

Edited May 24 by getofflex

[poohstix]

9 hours ago, getofflex said:

I’m sorry to hear about your weight gain issues. Unfortunately, cutting calories too much Can mess with you and ramp up withdrawal symptoms. At least that’s what has happened to me when I tried to reduce calories.  
 

I’ve only been gaining weight at the rate of about a pound a year, so I’m not too worried about it. I’m gonna wait until my system is more robust and then try to lose the weight that I have put on.  I would rather be slightly overweight, then go into withdrawal mode.  I have read online that low blood glucose levels can increase either cortisol or adrenaline, which, of course will mess with your nervous system and create activation.  

Yes, that is excellent perspective. It's more important to be stable from a withdrawal standpoint than to be a certain weight. I think the best thing is to eat sensibly, exercise as tolerated, and the rest will take care of itself. If the weight gain is part of the withdrawal process, then that too should get better as my nervous system heals.

[poohstix]

Now, for something more positive, I've recently been enjoying listening to nature sounds. I used to listen to soft classical music, and I still do at times, but now I've switched to playing the sound of rain, waves, running water, etc in the background when I'm doing paperwork, reading, or relaxing. It's very soothing, and also shown to lower cortisol and adrenaline. There are lots of apps out there that generate nature sounds.

[getofflex]

What a great non drug strategy Pooh!  I'm glad you shared this with us.  I may even look into that for myself.  

[poohstix]

Good news: managed to lose 1-2 lbs in recent months. I probably had my calorie needs overestimated on the app I use, because I’m no longer exercising nearly as much, and I may have lost muscle mass.

Exercise intolerance is still a problem. It’s not every time, but walking does put me into mini-waves. And my last bigger wave was a relatively rougher one, possibly because of the exercise. By rough, I mean I’d have nights where withdrawal symptoms keep me up. They are not very severe symptoms at all, and if they occurred during the day they would not bother me, but if they occur at night they are just enough sympathetic nervous activity to keep me from sleeping. 
 

So I guess if exercise is causing this, I need to decrease it even further (to like 15 minutes a week, lol) or stop.
 

(I call it a mini wave when it’s 1-2 days of worse symptoms. I call it a big wave if it’s 1 week or more).

 

I am hopeful that the exercise intolerance will go away. I have had other withdrawal symptoms heal, so maybe this one will too.

[poohstix]

To clarify: I walk 15-20 minutes, once or twice a week, not on consecutive days now. 
 

The mini waves don’t start the same day I exercise but rather 1-2 days later. What’s frustrating is that when I do exercise it barely feels like exertion. I have to actively slow down my pace and tell myself to go back home when I want nothing more than to continue my walk.

 

I do ok running errands though, and that often involves walking. But when you run errands you stop and start so maybe that’s why it’s better. 

[Catwoman73]

Hi @poohstix- I just happened to glance at your thread, and wanted to chime in about the exercise intolerance.  I suffer from long covid and withdrawal, and exercise intolerance and PEM is one of my most annoying symptoms (I'm a dancer lol- I'm used to being extremely active!).  I've recently discovered that swimming is absolutely the most wonderful thing in the world for me- I feel amazing in the water, and my heart rate stays nice and low while I swim- it never goes over 100bpm.  And I just don't get the crash that I do with more weight-bearing types of exercise.  It might be worth a shot, if you have access to a pool.  I've also had good luck with pilates, which is amazing for maintaining core strength while unable to do more intense exercising.  With both- just start really slow.  

 

Hope that helps! ❤️

[poohstix]

On 7/23/2024 at 6:34 PM, Catwoman73 said:

Hi @poohstix- I just happened to glance at your thread, and wanted to chime in about the exercise intolerance.  I suffer from long covid and withdrawal, and exercise intolerance and PEM is one of my most annoying symptoms (I'm a dancer lol- I'm used to being extremely active!).  I've recently discovered that swimming is absolutely the most wonderful thing in the world for me- I feel amazing in the water, and my heart rate stays nice and low while I swim- it never goes over 100bpm.  And I just don't get the crash that I do with more weight-bearing types of exercise.  It might be worth a shot, if you have access to a pool.  I've also had good luck with pilates, which is amazing for maintaining core strength while unable to do more intense exercising.  With both- just start really slow.  

 

Hope that helps! ❤️

 

Thank you for your ideas! I have been thinking about trying a short term guest membership at a pool, though there is the question of whether or not exposure to cold water might amp up my symptoms. Walking out in the cold and doing hot water foot soaks has a history of giving me waves. One way to find out if such temperature sensitivity is still the case, I suppose.

 

Maybe the key is exactly what you say - to just try different exercises until I find something that doesn't cause my symptoms to flare up. I suspect pilates might be too hard as it was hard for me even before withdrawal! Maybe yoga could work.

 

Of note, what's odd is that a lot of the time my heartrate *doesn't* go much above 100 bpm when I walk. It feels *easy* and yet...

 

Earlier today I tried to do *two* pushups and *two* squats and it caused an instant (albeit mild) flareup. With walking, it's ok in the moment but 1-2 days later I get a flare.

 

Overall, it seems like right now at least my exercise intolerance is pretty extreme and it's beyond frustrating. I'm sorry, I'm in a mini wave right now so I'm having a hard time being positive.  That's another way I know I'm in a wave: woe is me and negative thinking, thinking I'll never get out of this, even though I know it isn't true.

[Catwoman73]

13 hours ago, poohstix said:

 

 though there is the question of whether or not exposure to cold water might amp up my symptoms. Walking out in the cold and doing hot water foot soaks has a history of giving me waves.

 

Hot water is a big trigger for me too- it's all about moderate temperatures now.  We keep our pool pretty warm- at least 85F, so it's like walking into a warm bath lol, and it's lovely.  Most indoor public pools are kept at pretty comfortable temperatures.  As with everything, though- you're right- all you can do is try, and see what happens.  

 

Pilates can be SUPER hard for sure.  I do ok when I keep the modifications to the easiest possible version of each exercise, and keep the session short.  Same with yoga.  Fitnessblender.com has some fantastic videos of all levels and lengths.  I often go back to that site to experiment because their content is so varied.  I've had a membership for years- many videos are free, but to have access to all content, you do need to buy a membership.  And no, I'm not affiliated with them lol!

[poohstix]

3 hours ago, Catwoman73 said:

 

Hot water is a big trigger for me too- it's all about moderate temperatures now.  We keep our pool pretty warm- at least 85F, so it's like walking into a warm bath lol, and it's lovely.  Most indoor public pools are kept at pretty comfortable temperatures.  As with everything, though- you're right- all you can do is try, and see what happens.  

 

Pilates can be SUPER hard for sure.  I do ok when I keep the modifications to the easiest possible version of each exercise, and keep the session short.  Same with yoga.  Fitnessblender.com has some fantastic videos of all levels and lengths.  I often go back to that site to experiment because their content is so varied.  I've had a membership for years- many videos are free, but to have access to all content, you do need to buy a membership.  And no, I'm not affiliated with them lol!

Thank you, those are great ideas too.

 

Bigger picture question: is exercise tolerance something that it’s possible to build even though you are in withdrawal? Or is exercise intolerance a sign that what you are doing is destabilizing your system and you’re just going to take longer to stabilize in the long run?

I guess I’m not sure what is best for my long term healing.

[getofflex]

My understanding is that exercise intolerance is something that will eventually go away in time, as our nervous system recovers.  Some people that are tapering are able to do intense exercise and be OK, and others are very sensitive to exercise.  I'm able to tolerate walking, but when I tried doing strength training with weights 7 months ago, it gave me problems.  I'm sorry the walking is giving you waves.  Usually gentle exercise will help to stabilize the nervous system.  I agree with Cat Woman - you might try gentle swimming instead.  

[Catwoman73]

20 hours ago, poohstix said:

Bigger picture question: is exercise tolerance something that it’s possible to build even though you are in withdrawal? Or is exercise intolerance a sign that what you are doing is destabilizing your system and you’re just going to take longer to stabilize in the long run?

I guess I’m not sure what is best for my long term healing.

 

For me, with long covid, it's a tough question to answer lol.  Nobody knows what's going to happen to us in the long run.  I will say that pushing too hard has created a much lower baseline for me in the medium term, and I have no idea what will happen to me in the long term.  

 

With exercise intolerance induced solely by withdrawal, I believe that, like everything else in withdrawal, it will heal with time.  But I do think the push-crash cycle is relevant here, just like it is with long covid, or ME/CFS- it's important to continue to move your body, but you have to find a way to pace yourself, in order to prevent serious crashes if you hope to heal efficiently.  It takes a bit of experimentation to find that happy medium with exercise, but I do think that the endorphins that get released with the appropriate level of exercise can make your withdrawal/tapering journey a much more pleasant one.  Not to mention that exercise helps to stave off other chronic health conditions that you certainly don't want to end up with, like heart disease, diabetes, obesity, etc!

 

Just some food for thought for you! ❤️ Try some different things out, and see how you react!  If you listen to your body, I really believe that it will tell you what it needs!

[poohstix]

@Tulip52 Hello. I decided to move our conversation into my own thread. It's good to know that exercise intolerance can get better, and that it can be either a side effect or a withdrawal symptom. With me, I am not sure which one it is -- but I'm guessing it could be either because a lot of my side effects upon lexapro re-start and withdrawal symptoms looked similar.

 

What did your exercise intolerance look like? Mine is weird -- it usually takes 1-2 days to set in, and it's basically all the alerting symptoms: trouble sleeping, low grade panic attack like symptoms, upset stomach, etc. It's kind of frustrating because I'd understand being tired from exercise, but this is the exact opposite. 

[poohstix]

Overall update:

 

Is this progress or is this just different? 

 

I've noticed that the exercise is a more clear trigger for symptoms this summer vs last. Last summer was just overall worse, with any kind of window at all being a rare occurrence. Now, I rarely get waves, but when I do they are shorter but sometimes harder. For instance, most days I feel pretty symptom free but then I'll have a random night or two where I'm kept up by sweats or low-grade panic symptoms and fall asleep at 6 am. Waves are usually triggered by something -- an infection, too much exercise, a medication change.

 

However, the last couple of times I've exercised I noticed some muscle soreness. It was my usual short walk outside but it was on hot days (80's). It's never been typical for me to get muscle soreness from that sort of activity, though perhaps it was the heat and the fact that over the course of the fall, winter, and spring I was quite sedentary. But even so, I've been sedentary for long periods in the past and I never got muscle soreness when getting back into exercise.

 

 

I guess all I can do is keep doing what I'm doing and tell myself this too shall pass.

 

[poohstix]

Well, it looks like I managed to lost 4-5 lbs in the last few months. It's slow, but it's progress. Say what you want about diet being 90% and exercise 10%, I always do better with weight loss if I can exercise - which I can't right now. I have about 20-25 more lbs that I'd like to lose, and we'll see what happens with that. Right now I'm just happy to know that weight loss *is* possible, even in context of withdrawal and adverse effects from meds. 

[poohstix]

Update:

Recently I've been struggling with a wave that's been affecting my sleep. It's disappointing that this is happening, because it has not been this bad in well over a year.

 

On 9/8 I decreased lexapro from 2.8 to 2.75 (2%). On the night of 9/9, I started having sleep trouble, and it's been ongoing for the last 4 nights. However, there may have been a harbinger of it before, I had an inexplicably hard time going to sleep on 9/6, despite being plenty tired, but I guess I didn't think anything of it because lately I do occasionally have some sleep difficulty, maybe for 1 night every few weeks. Then over the weekend I was unusually emotional, though there was a reason, so again I didn't think anything of it.

 

I guess, the point is I went down 2% on lexapro 9/8 but maybe a wave was already burgeoning a few days before that. Now, the last 4 nights, I keep having withdrawal symptoms: sweating, shortness of breath, palpitations, and they always arise anywhere between 1 am and 4 am, so I don't actually get quality sleep until after that. I've been getting 5-6 hours of sleep, I've been tired, but somehow still functioning ok, which is surprising, but I'm grateful at least for that. I also think I *could* sleep longer, because one of the days I had off from work, and was able to sleep in and get a total of 8 hours. It's just that my body is making me sleep at the wrong time, which is not very compatible with living a normal life. Oddly enough, during the day I feel very few withdrawal symptoms also.

 

I guess it's disappointing, because until 9/8 I've been holding the same dose for 3 months, and was generally doing really well. I had some exercise intolerance, but outside of that symptoms and waves were minimal. I keep wondering what caused this wave. It might not even be the lexapro decrease, because it might have been starting beforehand. I've not been exercising. I've not been sick. I’ve not started or stopped or changed any other meds or supplements. My diet is the same. There have not been any unusual stressors. The only thing I can think of is I've been taking on more at work and personally, because I've been feeling better. I can dial my commitments back, though; that’s not a problem.

 

But I guess maybe there's not really a "why" at times with this process. Maybe waves just happen, and sometimes they're bad. I just hope this wave ends soon. Oddly enough, I tried to take valerian root one time during this wave, but it didn't seem to help. I got more tired, but it didn't make me sleep or get rid of any symptoms, so there's no point in taking it -- or anything else. One thing I've learned with withdrawal is that the only thing to do is wait it out. Another piece of good news is that this wave I am less "in crisis" about what's going on, if you will. I am able to keep telling myself, "ok, this is a wave, it will get better eventually."

[poohstix]

I do have a question - Mods, perhaps you can weigh in?

 

Given the situation, should I do anything differently? In summary, I've been doing well except for exercise intolerance, so I've done a hold for 3 months and then cut back by 2%. At around the same time as the cut, maybe even slightly beforehand, I got a wave with middle of the night withdrawal symptoms that disrupt sleep. 

 

I am of course very grateful that during the day, my symptoms are minimal, and I can still (somehow) function on the 5-6 hours of sleep I've been getting. But I really need at least 8 hours of sleep, and it doesn't feel good at all to be getting this little sleep.

 

As such, should I make my decreases even smaller, like 1%, or even the smallest increment I can currently measure, such as 0.01 mL (that would be 0.3%)? Should I hold even longer? I don't want to give up on tapering, because there's a possibility some of the issues I have been having might actually be side effects from lexapro. (Though would side effects come and go like this? I wouldn't think so...) It's a bit discouraging that I'm being slow and mindful, but this is still happening.

[poohstix]

I've been looking back at my catalog of symptoms (I note them down every day on a spreadsheet), and I've noticed that:

--Most days are almost symptom free and there are no sleep issues

--about once or twice a month I'll have a "mini wave" - a night where I lose a few hours of sleep, and a day where I feel more withdrawal symptoms. 

--about every 3 months (in fact, almost exactly!) I have what I might call a "significant wave," which may last a week or more, and may involve several days in a row of poor sleep. Daytime symptoms can vary, but usually they stay low-grade. Working a job through such weeks is not fun to say the least, but I can do it. Of note, this doesn't necessarily correlate with when I decrease my lexapro doses. My wave in March happened 3 weeks after a dose decrease and I was also sick with an infection. My wave in June was a week after a dose decrease. My current wave in September happened at almost the exact same time as a dose decrease.

 

I know I should be happy and grateful for the above - in the grand scheme of things it's so much better than at the beginning of my journey. I also know a lot of other people have it a lot worse on this website, and I'm thankful for that every day. But still I'm sad that this is happening. I wonder, if this is happening now, how will I do later in my taper? What else can I do to make this better? I already try my best to avoid stress and exertion, eat healthy, get plenty of downtime to the point of saying no to a lot of activities I would love to do. I did make the mistake the last couple months of burning the midnight oil a bit too often with some projects at work and for my hobby (back when I *could* sleep really well - out like a light/don't wake unless there's an alarm or someone shaking me awake, as per my normal). Maybe I shouldn't do that. I guess I need to prioritize sleep a little better when I am not having a wave and when I don't have any problems. But who knows if even that is the answer. I think a lot of this process is about giving up power and just rolling with the punches.