Pokeshaw: tapering off Lexapro

[Pokeshaw]

Hang in there Poke. I'm so sorry you are having to endure a wave. They. are. the. pits. 

 

For me the unpredictability of how I will feel from one day or one hour or one minute or one week to the next can be the most difficult.

 

I mean, why should I expose myself and enjoy a day when I might ( and sometimes probably will)  feel like CRAP for the next three? 

 

When I am feeling like that and a "good period" exposes itself to me I use the simplest coping mechanisms I can : a warm bath with music; I browse through a lame- brain magazine ( House & Gardens, Birds & Blooms, Family Circle) in bed & try to dose off, VERY light stretching or breathing etc. to enjoy it and then just let the chips fall as they may...

 

This way I am gently supporting my nervous system, experiencing some relief, and not setting myself up for disappointment.

 

I'm not suggesting anything here directed specifically to your situation. I'm just sharing part of my tool box hoping that maybe something will click & help you reach out of the funk….

 

RU

Hi RU,

 

thank you for reaching out to me. i always appreciate your posts and i identify so much. especially about the unpredictability of symptoms. i too find that if i 'go for it' and do something enjoyable or something i used to do in my previous life, i can often be slammed for a couple of days. it doesnt take much for me to feel overstimulated. so i have become a bit cautious about making plans. especially on the weekends which is the time i need for recovering from the work week. i try to keep it as simple as possible.

luckily, i began to feel a bit better yesterday afternoon. maybe because i worked from home and it was calm. or maybe because i expressed some of my frustration and anger. that is so important for  me. otherwise i just stuff it.

hope you are having a peaceful day!

 

P

[Pokeshaw]

Aw Poke, I'm sorry. Waves suck. Withdrawal sucks. Stress definitely makes things worse. 

 

And that feeling "it's never been much better and it will never be better"...I know that one well. It's another withdrawal symptom, I think. I know from following your thread that things have been better and will be better again. I also know that doesn't really help much when you're in the pits. Hang in there, though. Your windows are out there, and when you get there it will be glorious.

 

Besides reducing work stress as much as possible, can you do something special, get a massage? go to the beach? Get out into the woods? Or just let yourself sleep, when you're feeling tired, maybe play some comforting music and just close your eyes? Anything you can think of that would be pleasurable and soothing under normal circumstances. Maybe you can find a way to fit some of that in.

Thanks, Rhi

 

you know, just expressing my frustration and anger kinda helped.  i had been feeling so alone with this and being nauseous and dizzy etc just compounded that. i worked from home yesterday, it was peaceful. i was less nauseous and dizzy. GI symptoms were a bit less.

 

re doing something special like getting out to the beach or to the country.  i find that to be very difficult since it involves navigating the subways and crowds. since i have to do that all week for work, when the weekend comes i just want to stay close to home where i have control over the environment. and yet i need to get away ~~ a frustrating circle.lately i even get this strange anxiety when i think about riding my bike to the park.  i have come to some acceptance that cant force myself to do those things. but i do recall some windows in the past few months where it was easy to handle those 'obstacles'.  these last 2 months i havent had that kind of window.  i am thinking that maybe if i just stay at this current dose for a long time that i will get back to a better place. in the meantime, i try to do gentle stretching, listen to peaceful music when on the subway, do lying down meditations with calming soundtracks. i am also aware that i have become stuck in the thought pattern (PTSD) that i cant handle what it takes to go to the beach or the park. it's like i have become agoraphobic. i certainly was when i was in the C/T state. could barely leave the house.  i know this will change ~~  i believe this will change ~~~

 

Thank you for listening and for your support!

 

P

[Pokeshaw]

hello Poke and thank you for sharing with us. 

 

LexAnger and Rhi said it all so i'd just like to let you know that I'm also following you in support. And as Rhi mentioned remember your windows for you. The weekend is coming so I hope you will be able to get some much needed rest and do some of the great things Rhi suggested. (I remember that nice park along the lake on Staten Island...). Or you can just treat yourself to a nice lie in. What works best for me is if I let myself to be as passive as I can imagine one day and then gently push myself into some more active form of relaxation the next, following by some more passive time. 

 

I also have GI issues of recently and not sure if I should attribute it to Lex. Also difficulties focusing and feeling OCD or very detailed about the work I do...

 

let us know how you are doing.

 

big hug

Hi Bubble,

 

Thanks for your kind words. you all are so amazing. i cant tell you how much it means to get your replies to my grumblings!  I think it helped me yesterday, just to be heard. i felt better as the day went on. and so far today is not too bad.

 

i really like what you said -

What works best for me is if I let myself to be as passive as I can imagine one day and then gently push myself into some more active form of relaxation the next, following by some more passive time.

 

that sounds about my speed right now. and that is what i am doing today. 'trying to be as passive as i can'.  i tend to keep myself busy with chores and tasks and busy -ness and then i have trouble 'letting go' and relaxing. it's as if i fear that if i surrender i will fall apart!  that is how it has been lately. i have in the past been able to relax. but truthfully it has always been a bit of a challenge for me.

 

so, today is a do as little as possible day.  and i will commit to spending at least 5 minutes listening to a meditation tape while lying on the bed!

 

I understand about the GI issues. that was a big point of impact for me with the Lexapro. it really messed up my enteric nervous system.  it is the whole motility issue - if my bowels are moving i have aftersymptoms. and at the lower dose and this recent cut they move daily.  if they are not, i have very low symptoms. but the not moving has its downside too. when i was at .6 and then .55 mg and even at .5 mg i was dealing with the slower motility. once i cut to .485 i have had increased motility and symptoms. that is what happened when i first stopped the lexapro 3 yrs ago.  hoping if i stay a long time at .485 that my enteric NS will stabilize more. 

 

i hope you are doing ok and that your symptoms are tolerable. 

 

i send a hug back

and a peaceful weekend to you!

[LexAnger]

Hi Poke,

 

Glad to hear your doing better today!!

Thanks for sharing your experience and thoughts about liquid lex. It confirms my guessing. I will try to switch back to tablet and let you know how I feel.

 

One other thing I found very helpful to all kinds of symptoms is doing simple house work such as cleaning, non-rush cooking. The best exercise that always takes away pain, pressure, stress is swimming. Somehow the head position plus in the water seems almost like a wonder to sooth the brain.

[Pokeshaw]

Hi All ~

 

just a quick check in and update.

 

2.5 months in to my most recent cut from 0.5mg lexapro (compounded)  to 0.485 mg and (touch wood) i seem to be gaining some stability. it has been a rocky road these past few weeks but this week there has been a shift.  not a 'wow' window, but a shift of sorts. not sure how to explain it exactly.

 

nausea and dizziness has gone way down (this alone is a big win for me) and that makes navigating the world a whole lot easier!

everything else is up and down but fairly manageable.

 

-sleep may be sketchy for a few days and then i get a couple good nights

-hot flashes come and go - some days less severe than others

-neck and shoulder/arm pain and pins and needles comes and goes but not as bad as it has been in the past

-anxiety/panic/OCD - comes and goes but overall much lower  - really working on 'letting go'

-gastro issues calming down enough to keep me comfortable

 

all of the above are definitely worse with work stress so doing best i can to keep that to a minimum. we have so much going on at the job - it is a perfect opportunity for me to practice not trying to do everything myself to the point of overwhelm and resentment- ask for help dear P!! you deserve it.

 

 

i have just tried re introducing magnesium oil (one spray in the morning) for the last 3 days and so far so good. so besides the lexapro it is the only supplement i am taking.

 

at this point am planning to stay at 0.485 for another month - so in total will be 4 months at this dose. hoping for more stability before another cut and next one will be only 1%.

 

Hope you all are doing ok?

 

Pokeshaw in Bklyn

[bubble]

hi Poke!

 

Was thinking about you so I'm very happy to hear you're doing better.

 

Yes, please ask for help dear P! And what happened with those hols ?hope they are coming some time soon and that you will be able to combine going away with staying at home. Also hope you will use your licence "to laze"

 

I hope I'm able to write an update soon.

 

Hugs

[Rhiannon]

Thanks for the update Poke! Good to hear you're noticing a shift. This seems consistent with your previous improvements. You may still have some ups and downs for a bit, hang in there. I have a feeling that if you keep tapering at this very gentle pace with the very small cuts, after a while you'll find you have a bit more "slack". Time will tell though.

 

It seems like you're doing much better than when you first arrived here. That's my impression. Would you agree?

[Pokeshaw]

Hi Rhi -

 

Thanks for your reply to my update.

 

first let me say a big YES i am definitely doing much better than when i started here last October. Although it took months, i can say that i have had a very significant improvement. i am grateful that i was able to reinstate after 9 months off the lexapro. it has been bumpy for sure but your advice about holding as long a possible on doses has been so valuable.

 

The recent shift is very much related to the enteric n/s symptoms beginning to shift. i guess those nerves are beginning to heal and my body's ability to create/regulate serotonin and other neurotransmitters in a more balanced way is healing. slowly but surely.  lately the worst symptom i am dealing with is lack of sleep - waking up at 3:30 am and not able to go back to sleep. that really does a number on me. but usually after 3 nights like that i finally get some sleep. also the neck/jaw/arm muscle tension has been a bit of an issue.

 

the last cut i did was 3% and even that was too much. it has taken a good 2 months to even out. and now at 2.5 months i am feeling some stability. this tells me i should probably stay on this dose a bit longer. hopefully i wont start having too many side effects symptoms. i guess if i do then that will be the indicator that it is time to try a 1% cut to see how that feels. I am def willing to stay longer at this dose if it will be beneficial and give more stability.

 

 

My job has continued to be very stressful but i am finding ways to disconnect and relax. meditation and affirmations are helping. i have taken today off for a mental health day! no plans, just relax and maybe catch up on some phone calls. and work on music a bit.

 

I hope all is well with you and that your work schedule has gone back to something more manageable. i know you had alot of ups and downs with that recently.

 

XOX

 

Poke

[mlrp]

Hi, Poke,

 

Just another note of support from a fellow survivor. I feel your pain re work, especially commuting.

 

I've had two jobs since this all started and they haven't been too stressful, thank God. But I have had many days where "faking it," was a huge challenge. Once or twice, people have had to ask if I'm "ok." That's when I know the cracks are showing. To be honest, the first few months after my breakdown, I clattered around my workplace looking like a deranged skeleton. Thankfully, I was working in a major art gallery at the time, and I guess they're used to seeing things and people who resemble "The Scream" by Munch.

 

I wish I hadn't had to leave that job (although my new one is ok) but one of the reasons was the commute - too long and on the subway. I know the NYC subway system makes the DC metro look seem like a Zen garden, but it was still hard -- all the noise, people, smells, varying temps. Now I work in a 180-degree different environment - very sterile, business setting, blank walls. In some ways, I think the sterility has helped my recovery. The art that I lived with in my other job, while sometimes therapeutic, was also frequently triggering. Balance is all, I guess.

 

I'm glad you are having some better days. I really like what you had to say about the shifting of your enteric n/s symptoms. I'm really trying to focus on encouraging my system to heal, heal, heal, and being patient in the process.

 

Happy week-end!

[Rhiannon]

Poke, I'm having a lot of trouble with my own enteric NS these days, so I often find myself thinking of you and remembering things you've described. In my case I think it's got to be due to the Valium taper. I've done some reading about benzos and the gut and there's definitely a lot going on there, sigh...

 

Just hanging in with it. I guess I'm going to have to be more strict about diet, even though that doesn't always fix me. But it's one thing I can control a little.

 

Work schedule is still bouncing around this month, I have another week of nights coming up in a couple of weeks. I'll get through okay though. My work schedule is never ideal. Maybe someday...

[Pokeshaw]

Yeah, the gastro issues are no fun.  i totally understand. for me it seems to be all about the drug and w/d effect on motility, which of course is involved in many body functions but especially digestion. when motility is too 'fast' i have horrible symptoms  that can last way in to the afternoon or longer and will often include reflux. it's as if the energy is moving backwards.  diet adjustments are important for sure. but truthfully, when the motility is more regulated i have no issues. and i am eating the same foods. then i make a cut in meds and back come the symptoms. so i have had all the proof i need that it is related. brain/gut nerves are healing and finding homeostasis. such a delicate process though.

 

I hope it evens out for you soon.

 

Poke

[areyouthere]

Hi Poke,

 

As I read your 7/26 post it felt as if I were re reading a post that I could have easily written myself it so mirrored my experience recently with tapering the lex. 

 

I think that based on my own experience you are definitely heading in the right direction with stabilizing and also I have to tell you that I feel exactly the same way about waiting with a long hold before attempting another cut. In addition to all of that I want you to know that I too am very sensitive to cuts and a 1% is about all I can squeeze out lately with long holds as well.

 

It's amazing how powerful these drugs are.

 

I like your decisions & thanks for posting. It affirms my own.

 

RU

[Pokeshaw]

Hi RU,

 

Good to hear from you. it is somewhat reassuring to hear of your similar experience with lexapro tapering!  it really helps knowing i am not alone. 

i am still amazed at how sensitive i am to cuts. i know it is because of the discontinuation syndrome that hit me three months off the medication. and i waited 9 months before reinstating and then was all over the map for a year before finding this site and finally getting on stable steady doses. i guess i am lucky that i was able to reinstate.  but wow - this is intense.

i did have a recent shift as i called it.that was after 2 wavy months after a 3% cut.  now i think i will refer to it as a window since i seem to be in another wave as of today. not a great morning. been waking up at 3:30 or 4 am the past few nights which is rough. and also got hit with a bout of the neck muscle tension and severe stiffness. along with some queeziness and vertigo ~~ it was a nice window though!!

probably just the normal fluctuations as expected. but i did try a small amount of magnesium for a few days. not sure that would have triggered symptoms.so hard for me to tell since i seem to be very sensitive to supplements and so i dont take anything at all.

do you deal with the sleep problem too??

 

Hope you are having a good day!

 

XOX

 

Poke

[Pokeshaw]

Hi, Poke,

 

Just another note of support from a fellow survivor. I feel your pain re work, especially commuting.

 

I've had two jobs since this all started and they haven't been too stressful, thank God. But I have had many days where "faking it," was a huge challenge. Once or twice, people have had to ask if I'm "ok." That's when I know the cracks are showing. To be honest, the first few months after my breakdown, I clattered around my workplace looking like a deranged skeleton. Thankfully, I was working in a major art gallery at the time, and I guess they're used to seeing things and people who resemble "The Scream" by Munch.

 

I wish I hadn't had to leave that job (although my new one is ok) but one of the reasons was the commute - too long and on the subway. I know the NYC subway system makes the DC metro look seem like a Zen garden, but it was still hard -- all the noise, people, smells, varying temps. Now I work in a 180-degree different environment - very sterile, business setting, blank walls. In some ways, I think the sterility has helped my recovery. The art that I lived with in my other job, while sometimes therapeutic, was also frequently triggering. Balance is all, I guess.

 

I'm glad you are having some better days. I really like what you had to say about the shifting of your enteric n/s symptoms. I'm really trying to focus on encouraging my system to heal, heal, heal, and being patient in the process.

 

Happy week-end!

Hi M ~

 

Nice to meet you here.

 

i understand about the work stress, for sure.  i was on disability for 3 months when i was at my worst and had to force myself to go back to work since i had no other option. that was rough. i was not in a very good place. i understand about the challenge of faking it!

i was all over the map with dosage and trying different things until i finally found this site and committed to the wise suggestions i got here. that was october 2013. so it has only been 10 months that i have been on the path of stabilization after a good yr and a half of serious disregulation.  i have definitely made alot of progress and am so grateful to have found this forum.

 

yeah, the nyc subway can be intense at the best of times!  luckily i was able to work from home alot until recently when we started this big project. that really saved me on so many occasions when i was just too sick to go anywhere. i was really being taken care of by the powers that be!

 

interesting what you said about the art being triggering. i identify with that. i am a musician and during this process there were times i could not even listen to music, it was just too stimulating.  i basically just worked, cooked, took care of basics.  even now i find it hard to do too  much more than that since the job eats up alot of my energy. i have lost touch with alot of friends because i just dont have the bandwidth to deal with socializing like  i used to. i feel some recovery around that as the months go on so that is good. it is slowly getting better and not worse. and my close friends understand what i am going through, so that is a blessing.

 

i hope you are feeling alright today and that you have a good weekend too!

 

Poke

[Pokeshaw]

Poke, I'm having a lot of trouble with my own enteric NS these days, so I often find myself thinking of you and remembering things you've described. In my case I think it's got to be due to the Valium taper. I've done some reading about benzos and the gut and there's definitely a lot going on there, sigh...

 

Just hanging in with it. I guess I'm going to have to be more strict about diet, even though that doesn't always fix me. But it's one thing I can control a little.

 

Work schedule is still bouncing around this month, I have another week of nights coming up in a couple of weeks. I'll get through okay though. My work schedule is never ideal. Maybe someday...

meant this to be a quote

 

Yeah, the gastro issues are no fun.  i totally understand. for me it seems to be all about the drug and w/d effect on motility, which of course is involved in many body functions but especially digestion. when motility is too 'fast' i have horrible symptoms  that can last way in to the afternoon or longer and will often include reflux. it's as if the energy is moving backwards.  diet adjustments are important for sure. but truthfully, when the motility is more regulated i have no issues. and i am eating the same foods. then i make a cut in meds and back come the symptoms. so i have had all the proof i need that it is related. brain/gut nerves are healing and finding homeostasis. such a delicate process though.

 

I hope it evens out for you soon.

 

Poke

[mlrp]

Thanks for the reply, Poke. I see you have been through a LOT, and your endurance through your micro-tapers is inspiring (like you have a choice, right?, but I admire your perseverance).

 

*sigh* art, music, friends... I, too, have seen so much go by the wayside as I was first sidelined with depression and then the tragic mistake of going on meds, and now w/d. It is good to have close friends who understand. I have a few, but struggle with staying in touch with even them. Don't know why socializing causes me so much anxiety, but there we are.

 

The progress is slow, and far from steady, but we'll make it. I'm rootin' for ya! See you around these boards...

[areyouthere]

Poke… yes I deal with sleep problems. I'm not sure what the extent of your sleep disturbances are but mine are all over the place. Lately I have been waking up between 3 am and 5 am. when normally I sleep until 8:30 or so. 

 

Sometimes I have a hard time falling asleep but more often I wake up and have a hard time falling back to sleep.

 

The most common problem while tapering the lex is waking up because of a night sweat. If this happens it's good and bad. The bad is that I HAVE to get out of bed to cool off. The GOOD is that typically after a night sweat I can fall back asleep whereas when I wake up early for any other reason ( God nows why) I have a much more difficult time falling back asleep.

 

I haven't discovered a pattern  other than definitely having sleep problems while tapering lex.!!

 

Hope you are feeling well.

 

RU.

 

oh and PS. I can get diarrhea when I taper the lex. I was able to cut much faster at higher doses but find that I am now much , much more sensitive to cuts and have to take my time and long holds. We'll get there Poke. And when we do it will be wonderful!! The windows show us that huh?!

[Pokeshaw]

Hey RU - yes, my sleep pattern is much like yours. it goes thru windows and waves!  some nights i wake up between 3 and 4 but i can go back to sleep and  i get 7 hrs.   lately i wake up between 3 and 4 with a hot flash usually and cannot get back to sleep. that is messing me up right now. i feel very tired, go to bed early, i fall into a deep sleep and then bingo - 3:30 wide awake.

 

gastro motility also speeds up with a cut and i can get diarrhea. and bad symptoms afterward. dizzy, nausea, chills. that used to be very bad. not as bad now. when i was at higher does the motility slowed right down and i dealt with constipation. diet adjustments didnt do anything.

 

yes - we are getting there...slowly but surely!  i appreciate your camaraderie!

 

Poke

[Pokeshaw]

Update ~~

 

The good news is that i have slept the past 3 nights -- hallelujah!!  much needed.

 

but gastro issues are really messing with me. motility too fast. and after bm i am very queezy/dizzy with waves of nausea all day - also makes me a bit panicky and fragile emotionally.

 

been dealing with the gastro issues alot since last cut.  hoping that as the weeks go on it will calm down.  at higher doses the motility was too slow and i was constipated. (which was a big issue last couple of yrs on full dose of the lexapro)

so gastro/enteric nervous system is area highly affected for me.

 

is it possible that if i just stay at this current dose for like 4 or 5 months that things will even out? the longest i have held is 3 months. I imagine the answer is yes since another cut would most likely make symptoms worse.

 

i have no problem with staying at this dose (been here already close to 3 months) for a couple more months.  i just feel like i am on a bit of a see-saw of side effects and withdrawal symptoms. but i imagine that is also par for the course once you get down to these very low doses.

 

OK, have i answered all my own questions??  haha

 

P

[Rhiannon]

Well, I would say try a longer hold and see what happens. Your body is the expert. If you've settled down after holding in the past, you probably will again. Fortunately you're at such a low dose that you're probably not experiencing much harm from the drug itself now, so you can afford to go as slowly as you need to.

 

Even though withdrawal is the source of the GI problems, I would keep an eye on diet and gut flora status, because everything interacts and you might find something that will support your GI tract while you are stabilizing. I wouldn't experiment a lot right now, just avoid sugar and keep an eye on the starches for now, and of course avoid caffeine or spicy foods. 

 

I find that I do better when I'm taking homemade kefir regularly, it seems to settle things better than any other one thing. Of course that's just me but I thought I'd toss it out there, if it sounds interesting that's something you can try during a time when you're more stable.

[Pokeshaw]

Hi Rhi - thanks for replying. 

 

i love kefir but i am slightly allergic to dairy. i generally dont eat any. before this withdrawal syndrome i used to be able to eat a little goat yogurt or goat kefir. i seem to be extra sensitive to it now. i get sinus congestion from it. my holistic doc had given me soil based probiotics which i tried off and on awhile back. they and all probiotics were activating for me.  but yesterday i tried once again just taking a small pinch. bm was better today. i will wait a few days before taking it again. i may at some point try doing the same with goat kefir. just take micro dose every few days.

 

the other thing i am dealing with is a recurrence or aggravation of the neck/arm tension, pins and needles. it was really bad over the past week or so. could have been triggered by a visit to the chiropractor. i had 2 very gentle adjustments (he knows my situation). the first one was fine (lower back) but a week later i had another adjustment (mid back and shoulders) and the day after, my neck muscles became extremely tight and painful - the same as when i was on full dose of lexapro and then again when self tapering and i switched to the generic. so it could be that it was that second chiro adjustment. too close to the brain!

 

anyway - i will hold at current dose and see how things go. i dont feel comfortable making any dose reduction until gut is more stable. hoping that will happen.

 

hope you are doing ok?

 

thanks!

 

P

[Pokeshaw]

Question -

 

since this last cut of 3% from .0.5mg to 0.485 mg lexapro i am finding increase in these symptoms the longer i hold. feel like there is something that happens a few months out like the way w/d symptoms of too fast taper can hit you 3-4 months out.

 

Anyone else experience this once you got down to very low doses?

 

 hot flashes - some really knock me for a loop

depression/intrusive thoughts - this seems worse in the afternoon

sleep problems - waves of -  waking at 3:30 am and cant get back to sleep

increased fatigue - could be because of recent wave of sleep deprivation but havent felt this kind of tired before. hits me late afternoon

Nerve issues - neck/jaw bad tension and pins and needles

more fluctuation of gastro issues - especially dizziness and nausea

 

Thanks,

[bubble]

Hello Poke,

 

I love your new avatar

 

I'm sorry you are struggling more than usually and don't have much to say since I'm not at your stage except that I can recognise some of your symptoms even without tapering. But then again, I have Xanax in the story....

 

I've been struggling with increased fatigue for years and it hits worst in the afternoon. Most of my family has this image of me sprawled on the couch most of the time Being awoken by cortisol at 3.30 is also very frequent as is the feeling of being equally tired upon waking as when going to bed. For months now I've been suffering with stomach issues, GERD and nausea and as Rhi said being very particular about my diet and doing research and applying knowledge on the gut health seems to be helping.

 

I haven't had hot flashes but perimenopause friends here write about them a lot. 

 

Mood sinks of course, usually in the afternoon. I can only say I've been spared of pins and needles so far.

 

So what to think about this? My only idea is that these are all signs of as they say disregulated CNS and not so much inherent to some particular drug or even what we do with them except that stability alleviates them and changes aggravate them.

 

Hope things have improved in the meantime. The thing that unfailingly works for me is physical activity in nature. Not easy in the concrete jungle...

 

hugs

[Pokeshaw]

Hi Bubble - thanks for your reply - so good to hear from you. you pretty much outlined my case ~~  knowing i am not the only does help a bit!

 i am so sensitive to stuff it still freaks me out. i used to be able to take supplements and herbs without issue. 

i did try a micro dose of a soil based pro biotic 2 times in the last few days. it helped so will see how that goes. will keep it very simple.

i also saw my chiropractor yesterday since my neck is so out of whack and insisted that he do a micro-adjustment! he thought that was amusing but was on board. anything more than micro adjustment will trigger symptoms.

 

you are right about exercise.  i do walk alot to get around the city but i used to bike everywhere and loved that. havent been doing it as much. but this morning i have been on the bike - went to the park, did some errands. feels good.  home now for the rest of the day to myself.

 

Hope you are having a good day and hugs to you too!

 

Poke

[LexAnger]

Hi pok, happy for you for a good day break! I have the entire set of the symptoms you listed except for the sleeping part. I actually sleep too much all the time since starting the taper. When I was on 2.75mg lex after tapering from 10mg the only symptom I had is severe jaw pain. Since lots of changes last nov. from generic to brand, the increased dose gradually to 4.1 over time due to stopping ppi, then taking pain killer for a cold, I got all the nasty stuff varies every day and hour. My original routine exercise of jogging, biking, swimming hiking averaged 2 hours each day for the past 15 years can't be maintained lately and I feel I'm losing the capability of getting out for work. Are you still able to take care work with all this?

 

Hope the window last for a while for you.

 

Hugs

[Pokeshaw]

Hi Lex -

 

Good to hear from you.  I understand about the symptoms. they have been very persistent since my last cut. my windows lately are very short. i am hoping that improves the longer i stay at this dose. believe me, i would stay at this dose for 6 months if i thought it would help my n/s stabilize more. i will def do another month which would make 4 at current dose. will see how i am doing then.

 

i am able to go to work though it is sometimes very difficult, especially since my job can be stressful.managing the stress is a big challenge for me. always has been.  i have to really work at 'letting go' and relaxing. i use some positive affirmations daily. on the subway, while i am at work etc. the hardest part is the dizziness and nausea. it is tough to 'act as if' i am ok when that is happening.

 

i basically work 5 days a week, make sure i eat good food. and then on the weekends i keep to myself and just take care of errands and try to relax. about once a month i try to get together with some friends - those who understand what i am going thru. i also am fortunate to be in AA for many years and there is a very supportive, wonderful meeting up the street from my house each morning at 7:30 am, so i get to be in a 'circle of safety' that feels somewhat like this forum. it is a godsend for me.

i have also started doing a daily gratitude list with a friend over email. that also really helps my state of mind and spirit!

 

i hope things even out for you soon.  we are all on this challenging journey together ~~~

 

hugs,

 

P

[LexAnger]

Hi pok, thanks for responding! Being able to share the debilitating experience helps a lot to keeping on going. I asked about your work since in the past week I feel I'm losing the capability of continuing working. It's very difficult to even get out of the house not even to mention concentrating and be productive. I manage 6 teams and most of them are functioning very well I only need to collaborating communicating on daily basis. I used to be able to get all those done a few hours when My mind was functioning when pain was the main issue, but lately I don't get those few hours any more with many of the function related problems with brain, heart and entire system. My company is down sizing and I am eligible for early retirement. I' have to make a decision if I want to take the transition package. I am not ready for retirement as I'm only 50 and single, but in case I will be disabled soon for long term giving the worsening rate I experienced in the past month, it may be just better to take it. This has been a very tricky decision since the problem with the meds is so unpredictable. I simply have no clue how close I'm to the true and long disability.

 

Your sticking to work gave me encouragement and hope.

 

I used to be able to fake myself to look alright with pain only, now I totally know what you mean when dizziness, drugged head is added how impossible to act normal even briefly.

 

Doing yago and deep breathing helps a lot with my muscle tension and aches. Lying down or in general with head lay flat helps a lot too.

 

Hugs

[Pokeshaw]

Hi Lex,

 

I hope you are guided to make the best decision for yourself regarding your job. i understand how that would be very difficult.

 

I hope you are feeling ok today.

 

Best,

 

Poke

[LexAnger]

thanks pok!

I'm better today with the heart problem in bay and energy back even with very bad pain/numbness on left side of head, neck, shoulder and back as always.

Hope you are feeling better!

[Rhiannon]

Question -

 

since this last cut of 3% from .0.5mg to 0.485 mg lexapro i am finding increase in these symptoms the longer i hold. feel like there is something that happens a few months out like the way w/d symptoms of too fast taper can hit you 3-4 months out.

 

Anyone else experience this once you got down to very low doses?

 

 hot flashes - some really knock me for a loop

depression/intrusive thoughts - this seems worse in the afternoon

sleep problems - waves of -  waking at 3:30 am and cant get back to sleep

increased fatigue - could be because of recent wave of sleep deprivation but havent felt this kind of tired before. hits me late afternoon

Nerve issues - neck/jaw bad tension and pins and needles

more fluctuation of gastro issues - especially dizziness and nausea

 

Thanks,

 

Over the years I have encountered situations where (especially with benzos) people felt like they were getting worse during long holds. What I usually say is, it's up to you; if you want to experiment, try a very small cut and see if it makes you feel better. Keep your journal carefully and document all changes. 

 

Some people do need to do that, and it helps them.

 

It's tricky, because whether a person is changing meds or not, symptoms will wax and wane. People who have come off their meds completely and are in the protracted withdrawal period will have spells when new symptoms appear and they feel worse than ever. That appears to be part of the healing process.

 

Some people believe that periods of worse symptoms actually indicate healing; they have found that after the worst periods they will often experience a shift, a distinct improvement. I can't speak to that from personal experience, but I can't say it's impossible. This situation of yours makes me think of that, because I think that right now you are still in the recovery and healing period from your past years of med madness, so it's possible that your body is taking advantage of this long hold and doing some long-needed catch-up.

 

That's why I tend to encourage you to hold. I think you haven't really had time to get to a fully stable homeostasis, that your nervous system is still doing a lot of healing, and that you're at a low enough dose that the drug effects are probably less harmful than the withdrawal effects. That's just my "take" on it, I could be wrong of course, and you and your own body are the experts on you!

 

Anyway, I won't yell at you if you decide to experiment with a small cut, but if it were me, at this low of a dose and with such a chaotic recent history, I would probably extend the hold to at least six months before doing that. That's just me, of course. I'm a strong proponent of giving the nervous system lots of chemically stable healing time.

[Pokeshaw]

Hi Rhi -

 

thanks ever so much for checking in with me on my questions. 

 

my 'gut' (haha) tells me to do a longer hold too. i am now heading into month 4. this will be the first time i have held longer than 3 months and i think it is the thing to do. that's about as much experimenting as i want to do right now!  Also i saw my doctor (the integrative med guy) and he strongly suggests the same since, as you said i had a chaotic couple of yrs with dosing changes. He said i might try a bit of calcium that would slow the motility down some but not sure about that.

 

So i will hold and see how i do.

 

i saw your post re the dear Robin Williams and i agree 100%.  Bless him.....

 

I hope your night shift stint goes as well as it can.

 

Gratefully -

 

P

[Pokeshaw]

 

Question -

 

since this last cut of 3% from .0.5mg to 0.485 mg lexapro i am finding increase in these symptoms the longer i hold. feel like there is something that happens a few months out like the way w/d symptoms of too fast taper can hit you 3-4 months out.

 

Anyone else experience this once you got down to very low doses?

 

 hot flashes - some really knock me for a loop

depression/intrusive thoughts - this seems worse in the afternoon

sleep problems - waves of -  waking at 3:30 am and cant get back to sleep

increased fatigue - could be because of recent wave of sleep deprivation but havent felt this kind of tired before. hits me late afternoon

Nerve issues - neck/jaw bad tension and pins and needles

more fluctuation of gastro issues - especially dizziness and nausea

 

Thanks,

 

Over the years I have encountered situations where (especially with benzos) people felt like they were getting worse during long holds. What I usually say is, it's up to you; if you want to experiment, try a very small cut and see if it makes you feel better. Keep your journal carefully and document all changes. 

 

Some people do need to do that, and it helps them.

 

It's tricky, because whether a person is changing meds or not, symptoms will wax and wane. People who have come off their meds completely and are in the protracted withdrawal period will have spells when new symptoms appear and they feel worse than ever. That appears to be part of the healing process.

 

Some people believe that periods of worse symptoms actually indicate healing; they have found that after the worst periods they will often experience a shift, a distinct improvement. I can't speak to that from personal experience, but I can't say it's impossible. This situation of yours makes me think of that, because I think that right now you are still in the recovery and healing period from your past years of med madness, so it's possible that your body is taking advantage of this long hold and doing some long-needed catch-up.

 

That's why I tend to encourage you to hold. I think you haven't really had time to get to a fully stable homeostasis, that your nervous system is still doing a lot of healing, and that you're at a low enough dose that the drug effects are probably less harmful than the withdrawal effects. That's just my "take" on it, I could be wrong of course, and you and your own body are the experts on you!

 

Anyway, I won't yell at you if you decide to experiment with a small cut, but if it were me, at this low of a dose and with such a chaotic recent history, I would probably extend the hold to at least six months before doing that. That's just me, of course. I'm a strong proponent of giving the nervous system lots of chemically stable healing time.

 

Meant to respond as a quote -

 

Hi Rhi -

 

thanks ever so much for checking in with me on my questions. 

 

my 'gut' (haha) tells me to do a longer hold too. i am now heading into month 4. this will be the first time i have held longer than 3 months and i think it is the thing to do. that's about as much experimenting as i want to do right now!  Also i saw my doctor (the integrative med guy) and he strongly suggests the same since, as you said i had a chaotic couple of yrs with dosing changes. He said i might try a bit of calcium that would slow the motility down some but not sure about that.

 

So i will hold and see how i do.

 

i saw your post re the dear Robin Williams and i agree 100%.  Bless him.....

 

I hope your night shift stint goes as well as it can.

 

Gratefully -

 

P

[Pokeshaw]

Update -

 

Been doing fairly ok this past week or so. But i think i missed a dose yesterday, woops!  havent had that experience for the many months that i have been doing a careful steady taper. Not sure what to expect. Hopefully wont have a problem.

 

Poke

[Rhiannon]

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.

[Pokeshaw]

Thanks, Rhi  -- def a bit of a wobble today. will ride it out.

 

Poke

[Pokeshaw]

Checking in ~~

 

Skipping the dose def caused a wave of sorts. though i feel like i have been mostly in a wavy place at almost 4 months at current dose of 0.485 which has me thinking that i probably need to stay here a while longer.

 

the tricky thing is that it seems i had more windows earlier in this 4 month period but now it's as if the lag has caught up with me and like when i first tapered too slowly it was somewhat manageable until  4, 5 and 6 months when it got really bad. so, even though i was able to reinstate after 9 months, it seems to be taking a long time for stability. not sure i will ever have strong stability since i reinstated so late in the game. or maybe that is because even after i reinstated i spent at least a year at inconsistent doses. this is the first time i have held more than 3 months.

it has really only been about 11 months that i have been following the advice here and even with that i think i was making too large cuts for the first few months.

 

i am willing to stay at this dose a couple more months and see how it goes. especially since the enteric NS symptoms are still very present. i do also have what i think of as side effect symptoms as well - especially the neck muscle tension which recently got very bad. i didnt have any of that even when i was at full blown w/d state.

 

i eat no sugar at all, fairly low carbs, have recently reduced gluten to almost zero. i cant really tolerate fermented foods or dairy probiotics but am trying a micro amount of soil based probiotics again every couple of days. def helps the digestion but can still be aggravating to NS.

 

 

fortunately, for the past couple weeks i am able to sleep 6-8 hrs most nights which is good.

 

Neuro emotions are tricky now and always associated with the gut motility issue - when too fast i have alot of symtoms afterwards and can feel really challenged in a scary ptsd way. when slower the symptoms are less.

 

also find i have very low tolerance for socializing. i do it now and then but there is a definite point at which i reach saturation and have to leave. my partner and few close friends basically understand,

 

 

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.

the other choices that occasionally intrude in my head are not good and i try not to pay attention to them.

 

a bit of a ramble but just needed to get it out!

 

thanks for listening ~~

 

P