Jera: possible Lexapro tapering fail - trying to save it

[Jera]

Thanks for having me here, somewhere I never thought I would need to be. 

 

I dont have have a history of depression or serious anxiety, I was but on these medications in 2014 to help me deal with treatment for Lyme disease.

im now off all medications/ Lyme treatment and have been for over a year so I thought it was time to tackle getting off Lexapro and eventually Rivitrol.

Lexapro 5mg daily

Rivitrol 500mcg daily in three divided doses 

 

For some reason I chose to drop the Lex first...... upon further reading it seems it would’ve been better to drop the benzo (Rivitrol) first. 

But anywoo.... I didn’t.

 

Dr said I was on such small doses of both it wouldn’t be an issue, couple of weeks tops.

 

I knew I needed to go slower, I made up a sensible spreadsheet and had 6 months in my head.

started July 2018;

because I was only on 5mg i underestimated small cuts and went straight to 2.5 mg daily.

it was a bit rough, I cried more than usual, I didn’t like being alone, I was tired.

 

my pharmacist advised skipping a day, and then another and then another...... which I did.... getting to 2.5 for 2 days, skip 3 days. 

Miraculously I stabilised, I was happy and my journal entries from that time say things like “I’m feeling really good’, “ I can cope with whatever life throws at me”, “I’ve got this and I can do this”.

(just for context I was widowed at age 38 in Jan 2016, my spouse of ten years was killed on a pedestrian crossing outside our home leaving me with our 4 year old and our 3 week old. So the last three years have been challenging to say the least - however I never increased any of my brain med doses or went on anything new, or drank, or smoked..... chocolate was my only vice).

 

Jan 2019, I was feeling stable and good on 2.5mg... so I went down to 1.25 mg (an eighth of a crumbly tablet) thought I’d get through it over the summer holidays.

( I do realise that this is actually a 50% taper - idiot, just wasn’t thinking that way as it’s such small amounts)

Initially I was agitated and short tempered, it took about 4-6 weeks for full blown anxiety to set in.

now the anxiety appeared as I started a new full time job teaching at university and my new partner and I were having some major relationship issues. 

All stress related I thought. 

 

But it then the fatigue hit me and then the DP/DR, the body aches, twitches,  waking up at 4am with anxiety and shaking all through the morning, headaches from hell, tight brain pressure, painful neck, dry mouth, diarrhoea so bad, sore watery eyes, loss of muscle and now my hair. 

 

I put it all down to stress, as did my doctor, chiro, family.

then my brain turned to mush ; cognition, confusion, disorientation, couldn’t remember what I’d just said or where I keep my toothpaste.

 

Which are also Lyme symptoms..... oh no, I thought, I’m relapsing due to all this stress driving down my immune system.

Then I checked in with my Facebook Lexapro group and had a light bulb moment - Could I be going through Lex withdrawal symptoms???

 

spoke to my GP was instructed to go back up to 2.5mg, or maybe 5, she was vague ..... did 2.5 for two weeks but the anxiety was still really horrid so I upped again to 5 mg.

Ive been on 5mg for 2 weeks but feel horrendous, so dizzy and tilted and fatigued, I’m barely getting out of bed and have had to call in help to look after my kids..... My brain just doesn’t work.

 

Now im reading about kindling, serotonin syndrome etc and freaking myself out.....

 

Have I royally stuffed this up or is there still hope that I will get my brain, my personality and my emotions back? I really need them. 

 

Thank you. 

 

[WiggleIt]

Hello Jera,

Before getting to anything else, I'd like to answer your question that you asked about whether you'll get your brain, personality, and emotions back.  My opinion is a resounding, "YES!"  Not only do we have Success Stories on SA about recovering from psych meds, but I can also attest that my emotions and mind came back to me.  Like you, I was put on meds for off-label (meaning non-mental health) reasons, and I now understand much more than I used to about the risks involved with on-label and off-label meds.

At some point in this response, I'll be sure to link you to the Success section of SA so you can have light and hope to look forward to!

Also, please do not think that you "messed up."  The fact is that the medical and pharmaceutical communities give zero decent guidance about how to taper off these meds, and none of us are psychic, which means plenty of us have been where you are with fast tapers, kindling, cold turkey, etc.  Nonetheless, there are recovery stories from kindled people, CT-ed people, and fast-tapered people.  You did not stuff anything up.

Because you have updosed again, how would you feel about holding at that amount for a bit to see if you stabilize, and then doing a 10% taper?  The 10% taper method means you taper by 10% of of your current dose, not by 10% of the original dose.  Essentially, your reductions get smaller, which can mitigate some of the worst WD effects.  I'll link the 10% taper info below:

https://www.survivingantidepressants.org/topic/1024-why-taper-by-10-of-my-dosage/  

I'm sure you have figured out by now that skipping days is not the way to go, so even if another doctor or pharmacist tells you to do that, don't!

People without Lyme or other illness do report the same type of psych med WD effects that you described.  Because of your Lyme, you need to be incredibly attuned to listen to your body to determine whether what you're feeling is Lyme relapse or WD.  It sounds like you already know how to listen in that way, so keep paying that level of attention, and keep journaling your symptoms to see what kind of patterns pop out.  For the record, I do know someone who came off psych meds and had Lyme, and this person made it through WD and went on to be able to manage her Lyme.

WD tends to go up and down, in waves and windows, with the overall pattern being forward toward healing, even when you take a step back or a step sideways.  Here is where we talk about the meandering journey, so you know you're not alone:

https://www.survivingantidepressants.org/topic/82-the-windows-and-waves-pattern-of-stabilization/
 

Worrying that we'll never heal is actually an effect of WD itself.

These Success Stories can help keep you looking forward:

https://www.survivingantidepressants.org/forum/28-success-stories-recovery-from-withdrawal/

Because this was a rather long message, let me recap the small tasks I'm hoping you can do:

1.) Read about 10% tapering
2.) Read about Windows and Waves of healing from WD
3.) Read some Success Stories
4.) Tell us how you feel as you hold on 5 mgs before you make a new taper plan

Please accept my condolences on the loss of your spouse <3 

 

Edited April 29, 2019 by WiggleIt
Deleted extra info and spacing

[WiggleIt]

To clarify:  You're still on the benzo, right?  So you upped the lex and have stayed on the benzo the whole time?  I'm going to double-check about which to taper first.

Edited April 29, 2019 by WiggleIt
Clarified my wording

[Altostrata]

Welcome, Jera.

 

Do your symptoms follow any daily pattern?  Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms. You can post them in this topic with a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[Jera]

1 hour ago, WiggleIt said:

To clarify:  You're still on the benzo, right?  So you upped the lex and have stayed on the benzo the whole time?  I'm going to double-check about which to taper first.

Yes, I didn't touch the benzo. 
I take a 500mcg tab; 1/4 in morning, 1/4 at lunch and 1/2 before bed. 
 

I really notice it if Im even an hour late for the benzo dose...... anxiety, prickly brain. 
I tried to reduce it a couple of times of the years but it was an anxiety disaster. 

This may sound odd but taking my lunchtime Benzo seems to be giving me a different effect now than it was even a few weeks ago....makes me more agitated than calm. 

 

Wigglet you have been so helpful, I didn't expect such a thorough, well thought out answer... thank you so much.

 

[Jera]

Symptoms since 11 Feb 2019 (tapered to 1.25mg Lexapro on 1st Jan)

 4-6am - wake with a supposed cortisol spike anxiety hit - pain in the top of my head, pain down arms, jaw clenched, tummy grumbling & brain going overtime. often diarrhoea.
6-9am - brain wanders in and out of weird sleep, weird thoughts and sometimes my life,/ or other images flashing before my eyes, Anxiety - I think Im dying and need hospital.cant feel my limbs, arms and hands twitch a lot.
8-9 am - Klonopin 125mcg
                Lexapro 5mg - reinstated at this dose for only 2 weeks
                Shakey, internal trembles, Anxiety, brain confused, memory bad, body aches, pains in head - Zaps?, feels like my limbs won't work, very Dizzy, odd head sensations throw me around.
11 - 3ish - so tired and could go back to bed, like the life is drained out of me, don't care about anything, just want to sleep. Any physical activity + exhaustion, shakes and sweats. hot flushes.cant take a nap as I twitch and startle back awake. difficulty reading, difficulty swallowing. I just want to lay down.
1pm - Klonopin 125mcg - this usually calms me for an easier afternoon but since changing doses of Lexapro Im finding it makes me a bit agitated & Anxious.
3pm - Energy slump, head still in pain, sometimes confusion lifts sometimes it increases as Im tired, vision blurry, mouth dry. 
5-7pm - need my energy for dinner, bath time etc with kids, usually an active fun time, but currently an exhausted agitated time, i have no patience, their noise hurts my brain. I just want to lay down.
8-10pm - lay on the couch or in bed, listening to my ears ring, unable to focus on television, muscles ache and cramp, vision is blurry/double, eyes water profusely and sting my eyes, feel drugged but brain a little clearer. lots of fear about waking up like this again tomorrow. 
10-12 - wired. Cant get to sleep, eyes twitch under my eye lids, brain won't switch off, some chinese sleep tea helped a little. Twitch and jerk as falling asleep.
10:30 - Klonopin 250mcg
             Liposomal Melatonin - 2mg
 

other Sx:

Cry easily
So tired, ridiculous fatigue
brain/head tight pressure - often feel like someone is poking me in the brain with a chop stick
so Dizzy, like my brain is doing somersaults. 
pain in soles of feet
heavy chest - difficulty breathing. 
Random sweats, chills and heat intolerance
face spasms, twitches and numbness
Apathy, numbness, cant find joy in things I did only 3 months ago
hair is falling out
Have lost weight rapidly
 

[Jera]

22 hours ago, WiggleIt said:

1.) Read about 10% tapering
2.) Read about Windows and Waves of healing from WD
3.) Read some Success Stories
4.) Tell us how you feel as you hold on 5 mgs before you make a new taper plan

 

Very happy to stay on 5MG dose and hope stability comes soon - its been almost 2 weeks, GP said it could take 4 weeks???

Reading lots about 10% tapering, unfortunately we don't get liquid lexapro here in Australia, so the crumbly pill situation can lead to inconsistent dosing - which I think is what was happening when i got down to 1.25mg (1/8th of a pill).
 

Devouring success stories.

Will wait to hear from you in regards to tapering Benzos or Lexapro first. 

Question for you - could re-instating to 5mg  after getting down to 1.25 for 2 months cause seratonin syndrome? or just destabilisation?

 

[Gridley]

24 minutes ago, Jera said:

 

Very happy to stay on 5MG dose and hope stability comes soon - its been almost 2 weeks, GP said it could take 4 weeks???

Reading lots about 10% tapering, unfortunately we don't get liquid lexapro here in Australia, so the crumbly pill situation can lead to inconsistent dosing - which I think is what was happening when i got down to 1.25mg (1/8th of a pill).
 

Devouring success stories.

Will wait to hear from you in regards to tapering Benzos or Lexapro first. 

Question for you - could re-instating to 5mg  after getting down to 1.25 for 2 months cause seratonin syndrome? or just destabilisation?


 

 

It is unfortunately impossible to say when stabilization will occur, though we can say that it will occur.  Two weeks is a very short time.  Doctors know very little about AD withdrawal, and 4 weeks also seems a very short time.  Wait 3 months minimum.  The term "stability" is open to interpretation.  It is best defined as not the absence of withdrawal symptoms but rather a steady state of feeling "blah" with no wide fluctuations. 

 

Many members (myself included) use the the Gemini 20 AWS scale to taper--much better than guessing.  Or you can make your own liquid.  Details are in these links:

 

Tips for tapering off Lexapro (escitalopram)

 

Using a digital scale to measure doses

 

How to make a liquid from tablets or capsules

 

We recommend tapering the activating drug (Lexapro) before the benzo.  (I'm in exactly your situation.)

 

Taking multiple psych drugs? Which drug to taper first?

 

Serotonin syndrome is unlikely in your updose situation.

 

 

 

 

Edited April 30, 2019 by Gridley

[WiggleIt]

Thank you for posting your daily symptoms and schedule!  You take klonopin 3x a day, right?  Or did I miss a dosage as I read through your schedule?

One quick note on the hair loss: It WILL stabilize and even grow back.  I went through years of hair loss due to psych med WD, and my hair is crazy thick again.

[WiggleIt]

Okay, yes, sorry for my redundance: I re-read everything and you do take the benzo in three divided doses.

I'm glad that you're open to holding.  Give the hold a total of 4 weeks and see how you feel.  You may need to hold longer or shorter depending on how you feel, but 4 weeks is a good guideline before you make any new plans to taper.

Please do keep checking in here as often as you'd like during your hold!

[Jera]

10 hours ago, Gridley said:

We recommend tapering the activating drug (Lexapro) before the benzo.  (I'm in exactly your situation.)

 

Taking multiple psych drugs? Which drug to taper first?

 

Serotonin syndrome is unlikely in your updose situation.

 

 

Thank you for the tip on the scales, I had bought some on eBay but they weren't sensitive enough beyond half a 10mg tablet. 

Ok, so I wasn't wrong going for the Lexapro first..... My GP said the Lex was more stabilising and I should have stuck on that to get off the benzo, but she also said, 'you have a benzo addition, we'll probably need vellum to get you off it." - comforting words?!?!

For now I will stabilise back at 5mg... however long that takes and when Im in a good place I will use the scales to do a long slow taper. 

Thank you so much for all this information, Im feeling empowered already.

[Gridley]

2 hours ago, Jera said:

we'll probably need vellum to get you off it." - comforting words?!?!

 

Some people do a Valium crossover to get off a different benzo.  It has its drawbacks (it doesn't always work, and valium can be a depressant).  I plan to go off my benzo (Ativan) by staying with Ativan and tapering it when the time comes.  When the time comes for you to go off your klonopin, we can help you decide what you want to do.

[freeruby]

On 4/29/2019 at 6:34 PM, Jera said:

 

Very happy to stay on 5MG dose and hope stability comes soon - its been almost 2 weeks, GP said it could take 4 weeks???

Reading lots about 10% tapering, unfortunately we don't get liquid lexapro here in Australia, so the crumbly pill situation can lead to inconsistent dosing - which I think is what was happening when i got down to 1.25mg (1/8th of a pill).
 

Devouring success stories.

Will wait to hear from you in regards to tapering Benzos or Lexapro first. 

Question for you - could re-instating to 5mg  after getting down to 1.25 for 2 months cause seratonin syndrome? or just destabilisation?

 

Hey Jera - Have you tried using a compounding pharmacy? I am in Canada - and had a compounding pharmacy make me .5 mg capsules of Lexapro.  They can also make liquid.  I bet they have compouding pharmacies in Australia too? 

[Longroadhome]

On 4/30/2019 at 4:45 AM, WiggleIt said:

Thank you for posting your daily symptoms and schedule!  You take klonopin 3x a day, right?  Or did I miss a dosage as I read through your schedule?

One quick note on the hair loss: It WILL stabilize and even grow back.  I went through years of hair loss due to psych med WD, and my hair is crazy thick again.

@WiggleIt

hi

did you have hair breakage and poor condition as well as hair loss and how long did it take to get back to pre wd condition ? 
 

mine had gone very thin breaks easy can’t use hair dye and is growing back in parts baby fine.,

im still tapering and this started at the beginning of my taper two years ago and has got progressively worse the lower I’ve got.
 

however it does worry me that it could be my age  as to the reason it has gone like this . I’m 60. But there’s no one in the family that has ever suffered with this problem age related. 

I have seen a dermatologist and she said it looks like female pattern hair loss but I don’t buy this. 
 

 

[Yesyes123]

Hey @Jera how are you now? Hope you are well, peace