Pokeshaw: tapering off Lexapro

[LexAnger]

Hi Pok,

 

I completely understand your disappointment and angry!

 

It took me over one year to get over the angry with the entire society of psyc medication, my friend (who talked me into this med for headache even she had been trying to get off for years at that time), and of course myself (my job is drug safety analyses). But eventually I got it over as it made me feel a lot worse and I eventually took the responsibility of my own not being wise enough about risk in life. It helped a lot just accepting the situation although it's still hard not to think of it at all for this life destroying misery.

 

I had a similar situation in terms reinstate after a long hold after tapering. I staryed on 2.7mg for 1 year due to severe jaw pain and other WD symptoms. I up dosed this June due to new WD after stopping the ppi the again due to interaction of pain killer with lex. I have been around 3.7-4.5 for 2.5 months and I'm seriously thinking disability (before only jaw pain now all goes wrong). It did feel too late of reinstament can be more harm. Also, even I am on a much higher dose than you are, 0.1 mg change can bring up tons of different symptoms. Lex is an incredibly powerful Ssri.

 

I'm now considering switching to Prozac if my psyc doc agrees.

 

Hope you feel better soon.

[LexAnger]

Oh, meant to tell you, I dtried all types of exercise for the head, face, neck, shoulder, back pain, stretching is the most effective. Downward dog is the best pose of all. Lying down postion helps too

[areyouthere]

 

 

 

overall i would say that the trend is up and i do feel that i am healing but i've been a little discouraged lately. i feel sad and angry at the drug companies for hijacking my life.

 

I can report that i have been making meditation and prayer a part of my day. that helps me to surrender to what is.

 

Hey Poke... I'm glad that you are able to see that your "big picture" during a longer hold is in a positive direction. It seems like we have to fight through so much for such a small a reward. 

 

Just know that you ARE healing and things WILL get better. 

 

I'm thinking about you and I understand how you are feeling.

 

Because our tapering experience with this Lexapro is somewhat similar & sharing experiences can help, I want you to know that I am doing ok now, but I have been much better and I have also been much worse. 

 

No one knows how we will feel tomorrow but I AM convinced that the hard work that you (we) are doing now and the small rewards we have to settle for SOMETIMES can suddenly jerk us far more forward than we ever expected. 

 

Hang in there... prayer is good. I'll say a few for both of us.

 

RU 

[Pokeshaw]

Thanks, RU!

I always appreciate hearing from you since our paths on this journey are similar.

yes, the trend is up. and i do think a longer hold is in order. i will stay at this dose and see how it goes.

 

true about prayer and meditation. i have come to a deeper awareness of the grooves that some of my old patterns of thinking have created. they become default reactions so easily, especially in this process where w/d caused alot of obsessive and intrusive thoughts. and yet in some ways this process has been like peeling away the layers of an onion. i get to deal with underlying issues and patterns in a new way.  i am grateful to have a wonderful therapist who i have been with for many years. she has a strong spiritual element to her practice and that is mainly what we are focusing on now so that i can function in my life. digging up old stuff is too triggering and i have already done alot of that over the yrs. she reminds me to let of of trying to make other people take care of me (something i did for most of my life after growing up in an alcoholic home) and to become willing to let my higher power take care of me. i have been finding alot of peace from this. a definite calm along with stronger access to my intuition and some real self acceptance. it doesn't work so well when i am in a neuro-emotional funk that is dominated by physical anxiety - for that i use breathing and relaxation tapes.

 

I hope all is well with you today ~~

 

hugs,

 

P

[bubble]

Dear Poke,

 

I would just like to greet you at least briefly. And thank your for sharing your journey with us. Thank you also for "visiting" me. We all feel discouraged from time to time. That's normal. We are not robots and this is not FB where only good moments get shared. LIfe is not only good moments. I very much liked what you wrote about your therapist and meditation and prayer you have incorporated in your daily life. It is very inspiring and I hope I can do the same.

 

One of the benefits of my down moments is that I get much more in touch with my spirituality and a higher power. In other words, I get more humble. Romanticism actually used to celebrate melancholia as a sign of noble and refined nature. The present fashion lables us as sick if we feel blue or introspective and are not flashing smiles and chasing whatever all the time.

 

Of course physical pain of anxiety is not noble but I think the general pressure to conform to "happiness" makes it even worse. 

 

big hug 

[Pokeshaw]

Dear Poke,

 

I would just like to greet you at least briefly. And thank your for sharing your journey with us. Thank you also for "visiting" me. We all feel discouraged from time to time. That's normal. We are not robots and this is not FB where only good moments get shared. LIfe is not only good moments. I very much liked what you wrote about your therapist and meditation and prayer you have incorporated in your daily life. It is very inspiring and I hope I can do the same.

 

One of the benefits of my down moments is that I get much more in touch with my spirituality and a higher power. In other words, I get more humble. Romanticism actually used to celebrate melancholia as a sign of noble and refined nature. The present fashion lables us as sick if we feel blue or introspective and are not flashing smiles and chasing whatever all the time.

 

Of course physical pain of anxiety is not noble but I think the general pressure to conform to "happiness" makes it even worse. 

 

big hug 

Hi Bubble - Good to hear from you. i send hugs back at you!

 

i love what you said about melancholia - so true.

 

and also about humility ~ this process has taught me so much about it. more than i ever imagined. and for that i am grateful.

 

have just enjoyed a much needed long weekend away from work. i got some good sleep and just focused on relaxing. Glorious!

 

best,

 

P

[Pokeshaw]

QUESTION ~

 

i cant believe i accidently missed another dose!!

 

I usually take the lex early in the morning but missed this morning.   it is 7 pm - should i take it now or wait til tomorrow morning??

 

P

[Pokeshaw]

Oh, I hate that! It happens to all of us sooner or later. That or we take two doses. Or something.

 

You may get a wobble, but you'll ride it out and get past it and be okay.

 

I suspect (from observation) that once people get onto a really stable, slow taper, where the nervous system has the chance to develop homeostasis and to heal from prior damage, that people get a little more "slack" for this sort of thing. I'm not sure you're there yet, but over time I think you will find your gut and head brains both being a little more steady and able to tolerate more stress.

 

 

hi Rhi - quoting in case you are online. i can't believe i did it again! i missed this mornings dose. i normally take the lex around 7 am. it is now almost 7:30 pm. should i take it now or wait til tomorrow??  it is compounded and somewhat slow releasing. man, i cant believe i did that!  oh well. i had a pretty good day too. l

thanks!

Poke

[Pokeshaw]

OK, so i messaged and heard back from Petu (thanks Petu) who suggested i take this morning's missed dose tonight rather than wait til tomorrow to resume..

 

will let you know how it goes.

 

Thanks!!

 

P

[Pokeshaw]

Checking in  and wondering what to do ~~

 

almost 4 months at current dose and having mix of symptoms.

 

wondering if i should hold longer to see how it goes or do i need to make a tiny (1%) cut?

 

still having some w/d symptoms, especially the enteric N/S stuff but feels like side effect symptoms are increasing the longer i hold.  not sure if that is par for the course and will even out if i hold longer but here are what i think of as the side effect symptoms since i did not experience these when i first went into w/d

 

waking up at 3:30 - 4 am with very busy mind

tight painful muscles in neck along with numbness in arms hands (this was very bad when i was at full dose of lexapro and went away when i stopped taking it)

eyes twitching and blurry

 

The gut symptoms are taking time to calm down after last cut. motility too fast, then queezy/dizzy and sometimes reflux afterwards. when i was at higher dose motility slowed down.

i feel it will take a long time for gut to heal so i am hesitant to aggravate it by making a cut.

I have recently re-introduced a pinch of soil probiotics every 2nd or 3rd day and it seem to be helping some but could also be aggravating symptoms so maybe i will cut back to once a week.

 

at this point i dont mind holding even if it is for a few more months but i dont want to do that if reducing a tiny bit would be better for my N/S. I guess i was expecting that after 4 months of holding at current dose that i would feel better.  when i look over my notes i can say that this past month was slightly better than last month so there is slow improvement on this hold. just wasnt expecting the side effect symptoms to rear up so much.

 

I did accidentally skip my dose a couple of times in the past month. most recently a week ago. i normally take it in the morning and realized i had missed it so took in evening.  i had a couple of bumpy days for sure. that along with work stress.

 

the good news is that i have had a couple of really nice day-long windows in the last couple of weeks. probably the best 'windows' i have had over the past yr. last weekend (after 3 days off) i had a day where i felt almost 100% like my old self. it was so amazing, i got down on my knees and thanked god!  but then i got slammed the next day.  also noticed that seriously focusing on relaxation makes a big difference especially re work stress and so did having 4 days off. 

 

anyway ~ that's my story for now!  Thanks for listening!

 

Poke

[Petunia]

Hi Poke,

Its great to hear that you are having some good windows and are slowly improving. 

 

If I were you, I would continue to hold, I don't see any benefit in continuing to taper if you are still having some significant symptoms.  Early morning waking with racing thoughts, tight muscles, numbness and twitching are all common withdrawal symptoms and can appear at any stage of recovery, often at low doses or when a taper has been too fast or CT, so its unlikely that they are 'side effects'.  I've experienced these symptoms since being completely medication free. (protracted withdrawal from too fast taper)

 

Maybe you could spend another month focusing on relaxation and stress reduction and then see how you feel.

 

Petu.

[Pokeshaw]

Hi Petu,

 

Hi Petu -

 

thanks for responding. i appreciate it. Yes, i think holding is the best thing to do. especially since i accidentally skipped doses twice in the last 3 weeks. i think that is contributing to current upset. As Rhi said the first time i skipped a dose, i probably dont have enough n/s balance to skip a dose without feeling it. i felt fine the day of the missed dose - it's a week or so out that i get hit.

i too had a very bad experience with the c/t 3 yrs ago, and for some reason was able to reinstate after 9 months off the lexapro. at that point i was at the end of my disability and had to at least try to go back to work. and then i spend a couple of yrs bouncing around with dosage and tapering and supplements before finding this forum and all of you angels. it has only been one year since i have been slowly tapering. probably should have held longer at each dose over this past yr but didnt. i was of the mind that i had to hurry off the meds. i now know it is not about that. but still, when i feel as bad as i have the last few days any memory of windows is barely retrievable and i start to panic again and end up in a similar but less intense state as the one i was in when i was totally incapacitated by the c/t.

it is true that the meditation and prayer and relaxation helps. i will get myself back on that track again. otherwise, with work stress i end up in a bad headspace for sure. that, combined with physical symptoms can really mess me up.

 

thank you for your service here ~ and i hope you are feeling ok today.

 

best,

P

[bubble]

Dear Poke,

 

just wanted to quickly let you know that I'm thinking about you. I'm so glad Petu explained things so great. I think you are right attributing this rough patch to missed doses... this experience makes are all so sensitive. But also when I caused myself to feel bad by such things before I never saw the connection so kept making the same mistakes over and over again. Also, knowing why I'm feeling bad helps me to feel more in control and not to succumb to panic. I hope it does the same for you.

 

I've also been feeling much lower than in a long while for 3 weeks now so I absolutely share the sense of disheartedness I feel in your post. I'm also sooo tired and fed up with going back, falling down again and again. But we will rise and march on

 

big hugs

[Pokeshaw]

Hi Bubble - sorry to hear you have also been not feeling so great the last little while. and you are right about knowing why we are feeling bad. also, sharing here and getting a bit of feedback from those who understand always makes me feel so much better. it is remarkable how that works

today has been a bit better than yesterday and for that i am grateful.

 

the one true thing is that we do rise and march on!

 

Sending a hug back to you across the seas!

 

Poke

[bubble]

this brought a smile to my face now. a wide one

[Pokeshaw]

WINDOW today!  much needed! glorious thing to behold!  wow!

 

Also, just realized i am coming up on my one yr anniversary on this forum.

 

Ever so grateful!

 

P

[areyouthere]

WOO HOO!!!! Window day happy dance!!! Happy happy happy dance for you Pokeshaw!!! Congrats!! And here's to MANY more!!!!

 

RU

[Pokeshaw]

Thanks, RU!  It was a wonderful day. Unfortunately I didnt get much sleep last night but today was not too bad.

Hoping to catch up on sleep tonight!

 

Hope all is well with you ~

 

best,

P

[Pokeshaw]

Wow!  I cant' believe it has been a month since i posted here. I miss you guys!

Things have been going fairly well. I wanted to check in since i have just reached 5 months at dose of 0.485 mgs of compounded lexapro and today i cut 1% to 0.480

i have to say that holding for 5 months was a good idea (thank you Rhi and Bubble!) because i have definitely gained a bit of balance. Will see how a 1% cut goes.

 

I will keep you posted.

 

sending Brooklyn hugs to all!

P

[LexAnger]

Congratulation! And thanks for updating and the great news!

[areyouthere]

Yay!!!!!!!! You'll do great!!! Good job Poke!! WOOHOO!!!!

 

RU

[bubble]

I was thinking about you and concluded you were doing well since there were no updates. i 'm very happy to see I was right.

 

Hope this cut remains uneventful

 

hugs

[Pokeshaw]

Yay!!!!!!!! You'll do great!!! Good job Poke!! WOOHOO!!!!

 

RU

Thanks, RU!  Good to see you. Yes, i am hopeful that this cut will be uneventful! Will def let you all know.

it has been an interesting few months ~ really the past 3 weeks that things sort of evened out a bit. very grateful for that after 3 yrs of suffering way too much!

XOX

[Pokeshaw]

I was thinking about you and concluded you were doing well since there were no updates. i 'm very happy to see I was right.

 

Hope this cut remains uneventful

 

hugs

Hi Bubble - thanks for checking in! so good to see you. i am hopeful that i will have an uneventful cut this time after many rocky ones! i think holding for 5 months was a very good thing to do. have also been doing a very very focused daily affirmation/prayer practice. it has helped me immensely. especially with work stress.

I hope you are OK?

XOX

P

[Pokeshaw]

Checking in - doing well. so grateful!  After my 5 month hold at 0.485 things really improved. cant say enough about long holds.  cut to 0.480 for a couple of weeks and now just cut to 0.475. Will sit here for a bit and see how it goes. the main issue i am dealing with is constipation. that usually happens toward the end of a long hold for me. since most of the damage for me was with enteric nervous system, that makes sense. since i am feeling so much better i am tempted to make larger cuts but will hold off on that. not quite sure how to proceed but going to take the wise advice of the moderators and listen to my body.

Will let you know how it goes!

 

best from bklyn ~~

 

Poke

[areyouthere]

Yay!!! Congratulations on moving forward!!! And doing great!

 

RU

[LexAnger]

This is great news! thanks for the update Poke! Keep the good spirit and get even better!

[Rhiannon]

Checking in - doing well. so grateful!  After my 5 month hold at 0.485 things really improved. cant say enough about long holds.  cut to 0.480 for a couple of weeks and now just cut to 0.475. Will sit here for a bit and see how it goes. the main issue i am dealing with is constipation. that usually happens toward the end of a long hold for me. since most of the damage for me was with enteric nervous system, that makes sense. since i am feeling so much better i am tempted to make larger cuts but will hold off on that. not quite sure how to proceed but going to take the wise advice of the moderators and listen to my body.

Will let you know how it goes!

 

best from bklyn ~~

 

Poke

 

Oh how well I know the "I'm feeling good enough, I'll just cut some more" thing. Allow me to suggest that you hold off on that. :-) 

(Hey, I was right about the long hold, wasn't I?) I'm just thinking, you know, you may not have yet fully experienced the whole unfolding of the cut to 0.480 and 0.475. I would allow time (a couple months) for that to unfold fully. In the past you've suffered a lot and you haven't had a lot of stability for a long time, so the first time you feel good and stable, it's great, but you don't really have the history information to know how deep that stability runs, how solid it is, how much you can experiment, etc.

 

So I would suggest, hang where you are, take a longer hold than you really want to. Keep notes every day or two, to see how things play out, the ups and downs, the symptom pattern. Let's make sure you're not in for some postacute post-cut withdrawal that kicks in down the road, before cutting more. Wait and see.

 

Once you've taken it extra turtle slow for a while, you will really have some good information about what stability is like for you, and how to maintain it, and what a safe taper is really shaped like for you. If you can't remember why, read back through your whole thread and remember how it was and how desperate that feels, when symptoms are bad and there is nothing you can do to control them but wait it out.

 

Not to be negative--this is about taking care of yourself. You and only you have that responsibility. If I hadn't seen how miserable you can get, I would say sure, experiment a little, but I think for you, conservative is still very much the best way to go, until you have really gotten some good history behind you and you really know what to expect.

 

You're in a place now where you can be in control. Don't destabilize yourself again and throw that away!

 

Okay, lecture over. I am so glad to hear you're doing so well! :-) yay yay yay!

[dalsaan]

Well done Poke on generating taper excitement and well done Rhi on a thoughtful, empathetic tempering of that. : ). Wise woman, wise words. Privilege stability

 

D

[Pokeshaw]

 

Checking in - doing well. so grateful!  After my 5 month hold at 0.485 things really improved. cant say enough about long holds.  cut to 0.480 for a couple of weeks and now just cut to 0.475. Will sit here for a bit and see how it goes. the main issue i am dealing with is constipation. that usually happens toward the end of a long hold for me. since most of the damage for me was with enteric nervous system, that makes sense. since i am feeling so much better i am tempted to make larger cuts but will hold off on that. not quite sure how to proceed but going to take the wise advice of the moderators and listen to my body.

Will let you know how it goes!

 

best from bklyn ~~

 

Poke

 

Oh how well I know the "I'm feeling good enough, I'll just cut some more" thing. Allow me to suggest that you hold off on that. :-) 

(Hey, I was right about the long hold, wasn't I?) I'm just thinking, you know, you may not have yet fully experienced the whole unfolding of the cut to 0.480 and 0.475. I would allow time (a couple months) for that to unfold fully. In the past you've suffered a lot and you haven't had a lot of stability for a long time, so the first time you feel good and stable, it's great, but you don't really have the history information to know how deep that stability runs, how solid it is, how much you can experiment, etc.

 

So I would suggest, hang where you are, take a longer hold than you really want to. Keep notes every day or two, to see how things play out, the ups and downs, the symptom pattern. Let's make sure you're not in for some postacute post-cut withdrawal that kicks in down the road, before cutting more. Wait and see.

 

Once you've taken it extra turtle slow for a while, you will really have some good information about what stability is like for you, and how to maintain it, and what a safe taper is really shaped like for you. If you can't remember why, read back through your whole thread and remember how it was and how desperate that feels, when symptoms are bad and there is nothing you can do to control them but wait it out.

 

Not to be negative--this is about taking care of yourself. You and only you have that responsibility. If I hadn't seen how miserable you can get, I would say sure, experiment a little, but I think for you, conservative is still very much the best way to go, until you have really gotten some good history behind you and you really know what to expect.

 

You're in a place now where you can be in control. Don't destabilize yourself again and throw that away!

 

Okay, lecture over. I am so glad to hear you're doing so well! :-) yay yay yay!

 

 

Oh, Rhi ~ it is so good to hear from you!  I totally appreciate your lecture. Yes, i will take your advice to heart (and mind and body)!

 

I would have stayed at the 1% cut to 0.480 except that after 2 weeks on it i was still having the bad constipation that started about 4 and a half months into my hold at 0.485.  it's pretty amazing that when my bowels slow down to a crawl i have so few symptoms. still not able to take any supplements or probiotics. well, cant say i tried. didnt want to rock the boat. will wait on those experiments.

Granted, going from 0.5 to 0.485 was a 3% cut and i did suffer for a long time with that. But it does seem that the longer i stay at a dose the constipation eventually kicks in. That was a big issue after 5 -6 yrs at 10 mg and one of the reasons i stopped.  So it is a pattern for me with the lexapro.

so i went from 5 months at 0.485 to 0.480 and i expected the gut to start moving again which usually happens after a few days at reduced dose but it didnt budge after a couple weeks so i did another 1% cut and after 4 days at 0.475 things started moving. some symptoms after bm today but not bad. So, yeah, i have reduced by 2% over 2-3 weeks and that is probably more than enough.  i will definitely stay here for a while. hopefully symptoms wont be too bad. fingers crossed. i have no problem with staying at this dose for months if need be.  i like feeling better!  I even had a house guest over the weekend and it went pretty well. That is truly amazing! Having a life beyond just going to work and survival maintanence is such a gift.

 

it is good to see you back here. i've missed your great 'spirit'. I hope you are doing ok after the loss of your mother. Been sending you warm thoughts.

 

Grateful Poke in Bklyn

[Pokeshaw]

Well done Poke on generating taper excitement and well done Rhi on a thoughtful, empathetic tempering of that. : ). Wise woman, wise words. Privilege stability

 

D

 Dalsaan,

 

Thank you for checking in. i love how you put it! Tempering the tapering!  Such good guidance. I so do not want to do anything to destabilize the gains i have made. it has been a very very long road getting here.

Cheers from Bklyn

Poke

[Pokeshaw]

Yay!!! Congratulations on moving forward!!! And doing great!

 

RU

 

Thanks, RU!  Good to see you!  I am so grateful to be able to report some stability. Gong to heed Rhi's advice and stay put for a while so as not to rock the boat.

 

I hope all  is well with you ~~

 

Poke

[Pokeshaw]

Rhi ~~~ Help!  you were right. now that i made the second cut to 0.475 i am having symptoms again. Oh dear....

This is day 5 at .475

should i stay here and tough it out or should i go back up to last dose i was at for 2 weeks - 0.480????

 

I will also quote so you get an email.

 

Thanks!

 

Poke

[Rhiannon]

I think you can go either way. 

 

What I see with you is that, number one, your gut nervous system is very sensitive to dosage changes and also to other stressors, and number two, you tend to have windows and waves (well, like everyone). I'm confident that you can stabilize at 0.475 but I suspect it will take a while, like it has in the past. The difference between 0.475 and 0.480 is small enough that I don't think you'd be harming yourself if you went back up to 0.480, but I also think you're probably in for some windows and waves regardless so it might not make a big difference.

 

It might be worth doing just to add to your self-collected self-data database...? I don't think either choice is dangerous or potentially disastrous, for you. Unfortunately nothing is probably going to fix you except time, so either way, go up or stay here, once you make the decision, don't change anything for a couple of months. Especially with the holidays coming, which is a stressful time even when it's fun stress. 

 

And keep that journal of symptoms and dosages and changes. I think with cautious experimentation and experience you're going to be able to figure out where your sweet spot is. I have a feeling you'll always have some sensitivity to dosage reductions and you'll always struggle with waves and windows to some extent (while tapering and recovering that is), but I think you'll get to where it's less extreme and less disruptive to your life and you will have more control and more choices.

[Pokeshaw]

Thanks, Rhi ~  much appreciated.

 

Not sure what i will do. this is day 5 at .475

I am tempted to just stay where i am and hope that it's not too bumpy a ride. But if i was going to go back up to .480 i suppose i should do it right now and not wait any longer right?

 

Yes, my gut nervous system is really sensitive. it is amazing how good i feel when the gut is slowed down after a long hold. but then it slows way down and i cant deal with the constipation. Perhaps if i had stayed longer at .480 it would have shifted but i figured 2 weeks was enough.

It's a bit tricky to make dosage decisions since i have to order the compounded meds.

 

Thanks again!

 

Poke

[bubble]

Hello from me too!

 

I have also like you been doing better and living more of a life out there lately. Just liek you describe in the quote below

 

  I even had a house guest over the weekend and it went pretty well. That is truly amazing! Having a life beyond just going to work and survival maintanence is such a gift.

 

 

I was thinking about you and, like the last time, concluded that not seeing you here is a good sign.

 

It's interesting to follow your journey. I never had the kind of motility issues you describe while taking Lexapro... It obviously affects us in different ways. As Rhi wrote, we are all very familiar with this feeling that we can get away with things when we feel stable. I have tried it several times myself only to discover over and over again that the only bet I can always win is hold.

 

Even if things are a bit wavy at the moment, you are reclaiming your life. O.480 is so small and yet so powerful ;( Don't even want to think about how far I am from that. And it doesn't matter. We are on the right way. That's the most important thing. 

 

Hugs to Brooklyn!

 

Bubble