Pokeshaw: tapering off Lexapro

[Pokeshaw]

Wishing you all of the best from one 3% taperer to another. I had a couple of tough days since the cut as well… They say Lexapro is a strong SSRI and I believe it. I intend to ride it out and hope for smoothness in a week or two also.

 

RU

Thanks, RU -- these transitions are tough!  I wish you a smooth transition too!

[Pokeshaw]

Hi Poke, been thinking about you. How's it going? Are you still holding on the 0.5?

 

Also, I love your doctor. I think we have a list somewhere of reasonable doctors, maybe we could add her name to the list. 

Hey Rhi - not sure you saw my reply to your note above.  Here is what a wrote a few days ago. wanted to be sure you got it especially re the doctor info.

I am now 9 days into a 3% cut. it was rough for a few days but seem to be settling in now.  hope all is well with you. 

Poke

 

 

Hi Rhi -

just signed on to say that i have made a small cut and saw your note. 

was at 0.5 mg for 3 months, one week.  the side effect symptoms were increasing (constipation, awake 4 am, neck pain, irritability, eye twitch)  so i just made a cut of 3% to 0.485 on Thursday.  After being constipated, had a normal bm today but now some dizziness/nausea and the anxiety and panic that go along with that. not too bad though.. i understand that a bump is to be expected. of course will give it some time to see how it goes.

i read so many accounts here of people not being able to reinstate after a few months. i reinstated after almost 8 months. have you seen any cases of reinstatement after more than 2 or 3 months? just curious.

it is still remarkable to me how after staying at 0.5 for a good stretch the side effects start again. some days i feel so angry about what 'stopping' this medication did to me. @##$

 

Yes, my doctor is great. her name is Shelly Menolascino and she is in Manhattan. once my GP suggested that all the problems i was having had to do with the medication, she was on board. the GP is Leo Galland who is a well respected dr of integrated medicine who specializes in complex cases and gastro issues. Unfortunately, both are expensive and the only reason i was able to see them is because i have a very good insurance plan thru my job. it has a low deductible after which out of network docs are covered at 80%. when i was at my worst - discontinuation syndrome from hell, Gall bladder surgery then parathyroid surgery, then suicidal- i had been to many specialists in my network then decided to go to Galland regardless of cost. Shelly is very open to alternative modalities and is keen to see me recover but at the same time encourages me to take this very slow. she saw me at my worst. but i only started seeing her about 7 months into discontinuation. she did encourage me to reinstate. it took a month before i agreed. 

all that to say that anyone going to her with suggestions from this site will not encounter any resistance.

 

today we are having a stoop sale. it is a lovely day. went to a 7:30 am 12 step meeting up the block.  i took Friday off for a mental health break from stressful job.

grateful for the little things! and always grateful for this site.  wish we could have a 'Surviving' picnic!

 

Hope all is well with you!

 

Poke

[bubble]

Hello Poke,

 

I'm not Rhi but wanted to say hi and tell you that I liked what you wrote on BlueMonster's thread very much. In particular that bit about taking time for the advice to sink in You were a quick learner and I'm so happy you are seeing your reward.

 

When you go this slowly you will have a chance to agree with your brain on what suits it best. It seems that it's in agreement with the 3 % plan It's interesting for me to notice that my pattern with  benzo taper is different: after the cut I don't feel any change for 5 days and only get wavy from day 5 to 15 after which things settle. (My recent cut was smaller than before and my brain seemed to have liked it a lot better so it didn't grunt).  

 

greetings to Brooklyn

[Pokeshaw]

Hi Bubble - Good to see you!

 

yes - i so identified with BlueMonster and so many others as they begin this journey. i felt compelled to reach out, especially re the Dr. Hinz protocol.

 

And yes, 3% cut was a good idea. even at that small a cut i still was messed up for a week. but really grateful to be evening out now. and able to sleep again - oh joy!  Rhi's advice on micro-tapering was right on.

even though i waited 8 months or so to reinstate, (and that was a year and a half ago) i feel lucky that i was able to. i dont read of many people here who have been able to reinstate that far out. have you encountered anyone?  just curious.

 

i guess the main issue for me with reinstating that late is that i am extremely sensitive to cuts. so 10% is def out of the question. i sometimes get a bit freaked that it will take forever at this pace, but am getting used to that now. i project a bit into the future and think - what if i move and there isnt a compounding pharmacy or a doc who will write these tiny dosage scripts for me??  i suppose i could make liquid dose if i had to. just concerned that it would be another 'adjustment'.  But, just for today, i am not moving!! haha  so that is a movie i dont need to run in my head.

 

raining in Brooklyn...going to have dinner i just cooked and watch a movie.

peace,

 

Pokeshaw

[bubble]

The question about successful reinstatement after 8 months is very, very interesting. Other mods with more experience might give some examples.

 

I would just say that it is rare but it obviously happens (I would personally always try to reinstate. If it doesn't work, you will notice it very quickly and can stop immediately and there is a chance, slim but still, that it might work). 

 

I understand your concerns about changing the tapering method. But I managed to do my own suspension and if i can do it, anyone can Except that it might not be necessary for you. This is just to tell you that if it happens, you will manage. I appreciated sharing your experience on Dr. Heinz protocol very much. I even think we should put it in one of specialised topics so that everybody has a chance to see it, if that's ok with you. 

 

it took 2 days fro the rain to come here from Brooklyn but here it is now

 

all the best!

bubble

[Rhiannon]

Hi Poke! Good to hear the smaller cut went well.

 

We do have some people who do well with small reinstatements further out. Maybe I'm reading your sig line wrong, but it sounds like you were up and down on doses throughout the fall of 2013? I don't have time right now to go back and reread your thread and get it straight, so I can't really address this very carefully. I would say that after a complete CT and eight months of no drug at all, if someone was having severe symptoms I would probably recommend trying a very small reinstatement, but that it wouldn't be a panacea and it might not help at all. But yes, sometimes it does help.

 

Don't worry about the future. Focus on what's working for you right now and on enjoying your life. Fortunately it's not hard to get prescriptions for ADs--doctors aren't as weird about that as they are about writing scrips for benzos--and if you have to, it's really not that hard to make your own liquid suspension.  And you have a supportive doc now who would certainly give you enough refills to tide you over until you found a new doc to help you. 

 

I know the "time" thing is daunting, but really, all you can do is what you can do. Your side effects will probably reduce as the dosage goes down and as you get more and more stable, so actually you'll probably be feeling better and better long before you get all the way off.

 

I'd still like to see you someday give a try to the really tiny microtaper, 1% cuts more often. If that ever appeals to you, probably the most convenient way to do it would be to make your own suspension. But no hurry. You're doing better now than you were a few months ago. Enjoy your life, enjoy feeling better, enjoy knowing that you have control and from here on out it will never be as bad as it was and you're only going to get your life back more and more!

[Rhiannon]

One more thing: I've lost so much due to these drugs. My children were harmed irreparably by what the drugs did to the mother they needed, too. That's a pretty hard thing to live with. And the way that I live with it is by taking what I've experienced and what I've learned and using it to improve the lives of others and hopefully keep them from losing as much as I did. 

 

So thanks for hanging in there, listening and working with us, and being a success story. It's a victory for me too.

[Pokeshaw]

Hi Rhi - good to hear from you and as always, thanks so much for your valuable feedback. You are definitely a power of example for me.

i am so moved and inspired by the service you and others give here. it is truly honorable. and your story helps me put mine in perspective. I am happy to be a small victory!

 

 

re my original taper

i went off 10 mg lexapro 3/11 and reinstated at 5 mg 12/11 - so aprox 9 months before reinstating but i did so because i was in very bad shape and felt i had no alternative.i also had to go back to work or go on long term disability.

then i was trying to taper slowly but not successful and def inconsistently until i landed here and finally got on a consistent dose in 12/13. so it really has only been a few months  that i have been evening out.

 

yes, smaller taper was better, for sure. i did have 6-7 days of feeling pretty bad but it was manageable. the interesting thing is that now, at day 11 it seems the side effect symptoms are returning. constipation, head/jaw/neck muscle clenching, eye twitch, waking middle of night (3:30 - 4:30 am) with hot flashes and trouble getting back to sleep. restlessness, trouble relaxing, mind wont stop. not as intense as before but still noticeable. not too bad today.

so i  guess i will stay at this dose .485 for a bit longer and see how it goes?

 

i am totally open to doing even smaller cuts but would have to switch to making liquid or getting Lexapro liquid.  i imagine there might be some difference in how that works with my system since the compounded version i take now has a kind of time release effect. or so the pharmacist says.

ingredients are:

lexapro

microcrystalline cellulose

Methocel e4m (med viscosity)

 

Yeah, i do get a little obsessed with this. hard to just let go and enjoy where i am!  Thanks for the reminder!

 

I hope all is well with you and that you are having a nice long weekend.

 

Poke

[Pokeshaw]

Just an update -

Been at most recent cut of 3% since 5/15. 0.485 mg lexapro.

at first - a week of withdrawal symptoms, then that calmed down, and  some of the side effect symptoms started up, but then they calmed a bit too.  sleep a bit better. not waking up every couple of hours. but still wake up at 4:30 every morning regardless. i try to be in bed by 9:30 so i can get 6-7 hrs. Some down mood. dealing with 'what have i done with my life' scenario. slightly obsessive/ intrusive thoughts about security, the future, losses, life choices etc. you know, the fun stuff that many humans confront in our 50's!  haha.  So, basically up and down but manageable.

 

today i decided to try taking Vit D again (1000 units) but had a bad day of symptoms. So, i guess i cant tolerate it right now. i was taking it before due to osteoporosis caused by hyper-parathyroid condition i had. it was discovered in the middle of my C/T withdrawal and i had surgery to remove the gland with the tumor. That was an additional part of my nightmare. not fun. but calcium and D3 are back to normal and bone density continues to improve. the Vit D supplement is a good idea for me to take but will have to wait til i can tolerate it and just continue to eat foods rich in D.

 

that's all for me right now.

 

Pokeshaw in Bklyn

[Petunia]

Thanks for the update Poke, you are getting there, glad to hear that your calcium and D are back to normal, I'm like you and can't take D3 supplement at the moment, I know I'm low.  Thank you for mentioning about D rich foods, I hadn't thought of that.

[Pokeshaw]

Hey Petu,  Good to hear from you. yes, Vit D rich foods. i will see the endocrinologist next month for yearly check up.

 

holding fairly steady on recent cut down to 0.485 mg lexapro.  Sleep is inconsistent - some nights good some nights awake every couple hrs with hot flashes. i really cant do much in the evenings past 8 or else I dont sleep well at all. stayed up the other night til 10:30 watching a show and was shot the next day. hopefully one day that will change but for now i am in bed by 9 or 9:30   pretty wild since i used to be much more of a night person.

 

i will try to stay at this dose for a couple more weeks to see how it goes. mainly dealing with side effects creeping back in. also some increase in grumpiness and irritability which may be side effect as well. otherwise OK.

 

Hope all is well with you.

 

Poke

[Pokeshaw]

Would love some advice -

 

Wondering if it is time to make another cut but afraid to do so -

 

Been 3 weeks at recent 3% cut down to .485 mg compounded lexapro

had 1 week of wavy days - all the usual w/d symptoms i get, especially related to the enteric NS and symptoms after bowel movement

got thru that ok and then some leveling off

then the side effects symptoms started to come back

have had some windows but not alot

 

Now i feel i have a mix of W/D and side effects so not sure what's what. Here's what's going on:

 

waking alot during the night with hot flashes

anxiety/wired but tired and easily crying. some panic but more irritable angry

easily dizzy if i turn my head too quickly

muscle tension

constipation returning - (every other day BM)

trouble concentrating

very easily stressed or overstimulated

some depression/hopelessness/ fear

 

 

So, just not sure if i should wait and stay at current dose a while longer or if i should make another smaller cut. i get that as i get to these very low doses i am even more sensitive to the lexapro. not sure if i hold here will i maybe even out?  i dont want to move any faster than i have to.

 

i ordered a 2% cut which will come in a couple of days. so that would be a cut from current of .485 to .475 of the compounded Lexapro. so i will have it for whenever it is best for me to make next cut.

 

going to try one spray of magnesium oil tonight before bed to see if it helps me sleep. i feel right now i am really suffering from sleep deprivation. today was bad. hard time coping with work/life - even therapy was too much.

 

but once again i can say that it is nothing like where i was 2 yrs ago - and for that i am grateful!

 

Thanks again for being out there!

 

Pokeshaw in Bklyn

[Petunia]

Hi Poke,

If it were me, I would hold a little longer, wait until your symptoms have settled down. For some people, it can become more difficult as the dose gets lower and we need to taper even slower, with longer holds.

 

There is a study which explains this, I'll see if I can find it....

 

http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

 

The link is in the first post .

 

Adding/increasing magnesium is a good idea if you can tolerate it.  Magnesium also can help with constipation.

 

Petu.

[Pokeshaw]

Hi Petu,

 

Thanks for the reply.  I will check out the link.  Yes, holding is probably a good idea.  after a few bad days, yesterday was pretty good. slept well night before, had normal bowel movement and very low symptoms all day (fri).  Was awake this am at 4 with bad hot flashes and then a bit of sleep afterward and today 'mixed' symptoms are back. mainly dizzy, foggy head, some anxiety.  so it seems that at this dose i am up and down. Though yesterday's window was SO wonderful!  Will stay here awhile to stabilize before making next cut and hope for more windows soon!

i have tried one spray of the magnesium oil the last couple of nights.  might continue that and see how it goes.

 

Poke

[bubble]

hi Poke,

 

glad you're feeling better. I would do the same as Petu: just hold. When we don't feel well, we all feel the need to do something about it, that is, change meds. But that's exactly what we shouldn't do. We change when we've felt reasonably well for as long as we can. You know that;)

[Pokeshaw]

Hi Bubble,

 

Yes, i will hold.

this is tough - feel like i am in a milder version of the bad state i was in when i first went off the med. odd since yesterday was a near perfect day. i guess that was a nice window in the middle of this bumpy spell as my body adjusts to the 3% cut. the worst is the inability to sit still. feel exhausted but wired, and the intrusive thoughts really kick up that state i was in 2 yrs ago. it's only 7:30 and all i can think of doing is going to bed to get away from the anxiety and physical unease. maybe the magnesium is not such a good idea. i cant seem to take any kind of supplements at all so i usually dont. wont take it tonight.

 

thanks for checking in with me. i appreciate it!

hope all is well with you!

 

Best,

 

Poke

[Rhiannon]

Hiya Poke! Sorry you're having crappiness. I concur with the consensus--hold. As long as you're still having the roller coaster adventure, you need to hold until you stabilize a little. I know you suspect the med is causing some of your symptoms, and it probably is, but at this point reductions in the med are not going to help as much as they're going to harm.

 

And it's not really all that clear and easy to distinguish side effects from withdrawal effects, I think, because really they're all "drugs screwing up our brain chemistry" effects, so they're a lot of the same effects. 

 

So all in all I think the safest and wisest course of action at this point is to hold for a while longer, maybe even a month, until you're feeling pretty stable and consistent from one day to the next.  As long as it takes, anyway. Your CNS is still reeling from your past experiences.

 

Be nice to your nervous system, it's trying really hard to find and maintain a functional homeostasis for you.

[Pokeshaw]

Hi Rhi -

 

Thanks for tuning in!  yes, i will def hold for as long as it takes to gain some balance before another cut. really is a roller-coaster right now. both emotionally and physically. that one window on Friday was SO wonderful though!  amazing how intense a 3% cut has been. will probably need to stay here for some time since it has already been 3 weeks. am prepared to go 2 or 3 months at this dose of .485 if necessary.  was thinking next time to do 2% but maybe even 1% would be a better idea.

going up to Canada next weekend to visit family. hoping i will feel a bit better by then. will try to focus on taking good care of myself this week.

 

thanks as always for your wisdom and experience.

 

Poke

[Northcoastboy]

Hi Pokeshaw

How are you keeping

Thanks for posting for me and Happy Birthday for today!!

[bubble]

aha, somebody has a birthday here

 

a very many, wide open windows for you!

[Rhiannon]

Oh wow, happy birthday!

[Pokeshaw]

Hi Pokeshaw

How are you keeping

Thanks for posting for me and Happy Birthday for today!!

 

Hey NCB - all is good here and thanks for the birthday greeting. had a peaceful day. hope you are OK?

[Pokeshaw]

Oh wow, happy birthday!

 

Hey Rhi - Many thanks!  nothing like a birthday window!  been feeling pretty good last few days and so happy to report it too!  now been 1 month since last cut of 3%. will stay here a bit and see how it goes.  worst of it is sleep whackiness but i can live with that for now.

hope all is well with you.

 

Cheers from Bklyn

[Pokeshaw]

aha, somebody has a birthday here

 

a very many, wide open windows for you!

 

Hey there Bubble ~~ thanks for the birthday greeting!  Yes to the windows!  have been enjoying a few days of them actually. partly due (i imagine) to having a long weekend since i took today off. boy, did i need to decompress from the job.  who wants to work in the summer?? not me. i want to be in Pokeshaw! 

 

Hope all is well with you?

 

Poke

[dalsaan]

Happy Birthday Pokeshaw.   Have a great day

 

Dalsaan

[Pokeshaw]

Happy Birthday Pokeshaw.   Have a great day

 

Dalsaan

Thanks, Dalsaan!  it was a peaceful day! grateful for that.

P

[Rhiannon]

I'm so glad to hear how well you're doing. Sounds like you're settling in well and stabilizing well with the smaller cuts and slow taper. Yay! You're going to do great.

[Pokeshaw]

Thanks, Rhi!  Yes, doing fairly well 1 month into this last taper which was 3% cut.  will stay here for a bit longer. i have on hand a 2% cut of the compounded but am thinking it might be better to try 1% when i am ready for another cut since even the 3% was a bit much. i was pretty messed up for a good 2 weeks.  might just stay at current dose for one or even 2 more months. I figure a couple of long holds will be good for my CNS, right?

it certainly has been good so far, especially for enteric NS. gastro stuff is really much better overall. for that alone i am very grateful.  mainly dealing with issues around handling stress, sleep interruption, and still some neck/jaw muscle tension. i find i have to keep my evenings really quiet or i am awake half the night. but i get exhausted and every few days i sleep 7-8 hrs deeply. so there is some catch up!

 

Hope you are doing well!  thanks for checking in.

 

Poke

[bubble]

Yes, doing much better than before here as well

 

I'm so glad you are not thinking about cutting but rather holding to allow for more recovery to happen. I'm working on a benzo still but also noticed that 8 % cut was too harsh for me so opted for much smaller cuts. It's so great to be able to understand what your CNS is telling you...

 

Thinking of how often we had to remind you not to react to symptoms by changing dosing It was so well worth it, don't you think

[Pokeshaw]

Hey Bubble -

 

yes, the multiple reminders!  absolutely worth it!  How difficult it is when you are on a bad wave to take in what someone is suggesting - i am so grateful that i slowly got it.

if it weren't for you guys, i dont know where i'd be. You have the patience of saints!

 

off to work ~~

[Pokeshaw]

Well, after a glorious window that lasted several days i am now experiencing a nasty wave of symptoms. very dizzy and nauseous and wicked hot flashes.   started yesterday, might have been brought on by stress.

will ride it out. WILL ride it out! Will ride it out!!

 

Poke

[dalsaan]

Stress is a usual suspect in these things. Try to relax and breathe through it

 

May a window be just round the corner for you

 

D

[Pokeshaw]

Hi Dalsaan,

 

Thanks!  i will hang in there. Going to bed early. very tired and hoping for a good sleep!

 

Best,

 

P

[Rhiannon]

Hope you're feeling better. If not, don't be discouraged; this happens. You're still doing GREAT.  You're still stabilizing, you've had a lot of improvement overall, and you're going to be able to do this--and have your life too--as long as you just keep going and take it slow.

 

Hugs!

[bubble]

just as much of positive energy for you as possible. Those waves are so ugly coming back when it seems we've left them behind. But now you have that experience of them passing... we just have to endure whatever comes our way... hope it's lessened as I write...

 

big hug

[Pokeshaw]

Hey all - thanks for touching base.

 

Whew - that was messed up.  i had such a wonderful few days then wham - the **** hit the fan.  crazy wave of symptoms. rough emotionally too, and no sleep on top of it. totally exhausted but unable to sleep is rough. i know you all understand.

 

seems to be passing now. grateful for nausea and dizziness lifting. slept about 5.5 hrs last night and today was ok.

 

this happened about 4-5 wks into most recent cut. seems i might have to hold a while longer at this dose. will do that.

 

Poke