starryskies: my 4th Lexapro taper with multiple chronic illnesses - this time super slow

[starryskies]

Hello there!
I started Lexapro with 10 mg back in 2003. Stopped cold turkey around one year after without any problem. Went back one day (recurring depression). Again stopped 1-2 years later. That time stopping wasn´t as easy anymore, yet doable. And yet again went back on the drug when battling depression. Did my 3rd withdrawal in 2012, again way harder than the two withdrawals I had done until then. I reduced within half a year to zero in 4 steps. All hell broke lose after, developed a mast cell activation syndrome (MCAS) and had a burnout diagnosed. I actually knew I should never ever take Lexapro again, I saw that each withdrawal got 10 times harder than the previous one, but my doc pressured me to get back on it. He knew nothing of MCAS, thought I was just hypochondric and depressed. Eventually I gave in, against all better knowledge. My only rebellion was that I went back to only 5 mg instead of 10 mg. That was in 2013.
I got my MCAS under control within the next years, it´s very mild now. Unfortunately I since developed ME/CFS. I also got hypermobility syndrome diagnosed in 2018, possibly it´s mild hEDS though.

 

I started my fourth and last (this time for real, I won´t ever again let any incompetent gaslighting doc talk me into it) withdrawal on October 30 in 2018. Managed to get down to 3.08 mg so far. The first 2 reductions went fine, but boy it´s no fun anymore. I am hoping to manage to withdraw within 5 years. Currently doing a very slow taper. I started out with 10% reductions, then continued with 5%, but now even that seens too much, so I am doing reductions around 1% only. So I went from 5 mg to 4.5, then to 4.0, 3.6, 3.5, 3.33, 3.16, 3.13, 3.1 and now 3.08.

 

My withdrawal symptoms would be managable, if it wasn´t for the impaired sleep. I´m a life long insomnia sufferer and that issue gets very bad while in a wave. Something I cannot afford with ME, if I don´t want to risk a major crash and possibly lasting deterioration in health. 
 

My other withdrawal symptoms are on the MCAS resp. histamine side of things, problems breathing, a bit of dysautonomia, a bit of euphoria and such. The latter is very nice actually. I am lucky that so far mood wise withdrawal has been kind to me. I have to say though that sometimes ME symptoms and withdrawal symptoms are hard to tell apart. Crippling fatigue, low grade fevers, sweats, heart palpitations etc., sometimes I am not sure what is what. But then I also get a weird window, which I am positive is from withdrawal, where I feel slightly manic and experience more physical stamina then normal with ME. 

 

One of the reasons why I´m withdrawing at all is me gasping at straws - ME being a neuro(!)immunological disorder, I am hoping that maybe longtime Lexapro use did some damage to me which will hopefully in the far future be reversed, even if it might take very long to heal from taking it that long.

 

In short: Hello and nice to meet you!

[Gridley]

58 minutes ago, starryskies said:

I am hoping to manage to withdraw within 5 years. Currently doing a very slow taper. I started out with 10% reductions, then continued with 5%, but now even that seens too much, so I am doing reductions around 1% only. So I went from 5 mg to 4.5, then to 4.0, 3.6, 3.5, 3.33, 3.16, 3.13, 3.1 and now 3.08.

 

Congratulations on getting down so low, Starryeyes.  I'm tapering very slowly too and  have just made it into the 2's.  You sound like you have everything under control.

 

Like you, sleep is my major issue.  Some nights I just get 4 hours, other nights up to 6.  

 

When you have a moment, please add a signature.  Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

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• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
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Edited May 30, 2019 by Gridley

[starryskies]

Hello Gridley,

 

thank you for your response!

Played around with the signature... had to make it very short so the system accepts it 😁Hope I did it right.

 

Yeah, insomnia is no joke. Sorry you´re struggling, too. I´m lucky as I started to have nights with lots of sleep (10 hours) here and there, at least since I started LDN. A bad night however can mean only 1 hour.

[Eastcoastgirl]

We have similar stories. I have ME , POTS & histamine intolerance. Tried to get off meds numerous times in hopes of better health and each time it got more difficult. I'm holding on a reinstated dose of 1mg. Wishing you the best in your taper ! You got this

[Gridley]

Thanks for adding your signature.  Here is a thread from SA on ME/CFS that might contain information helpful to you.

Chronic Fatigue Syndrome, ME, CFS - Surviving Antidepressants

And here's a link on the type of micro-taper you're doing:

Micro-taper instead of 10% or 5% decreases

 

You're an old hand at tapering Lexapro but FYI here's a link specifically about tapering Lexapro:

 

Tips for tapering off Lexapro (escitalopram)

 

This is your Introduction topic, the place for you to ask questions, provide updates and connect with other members.  I'm glad you found your way here.

 

 

 

 

 

 

 

[starryskies]

On 5/30/2019 at 1:40 PM, Eastcoastgirl said:

We have similar stories. I have ME , POTS & histamine intolerance. Tried to get off meds numerous times in hopes of better health and each time it got more difficult. I'm holding on a reinstated dose of 1mg. Wishing you the best in your taper ! You got this

Hi Eastcoastgirl!

 

Thank you so much. Wishing you healing, too. I am still a bit hopeful (not just for myself). I am convinced that if some meds had anything to do with us developing these conditions and if, only if, getting slightly better one day is possible after having withdrawn, then I am sure it will take very long. But I think there is a possibility.

 

Btw, can you always tell withdrawal symptoms and histamine reactions, ME symptoms apart? Sometimes it´s easy, sometimes I am wondering what the heck is THIS now??? 🤣

Edited November 13, 2021 by Karma
name update

[Eastcoastgirl]

On 5/30/2019 at 1:53 PM, starryskies said:

Hi Eastcoastgirl!

 

Thank you so much. Wishing you healing, too. I am still a bit hopeful (not just for myself). I am convinced that if some meds had anything to do with us developing these conditions and if, only if, getting slightly better one day is possible after having withdrawn, then I am sure it will take very long. But I think there is a possibility.

 

Btw, can you always tell withdrawal symptoms and histamine reactions, ME symptoms apart? Sometimes it´s easy, sometimes I am wondering what the heck is THIS now??? 🤣

I can never tell the symptoms apart ! I'm in some sort of awful wave right now & I pretty much drive myself nuts wondering what the cause is. Currently typing from my bed that I have not moved from all day LOL !

Edited November 13, 2021 by Karma
name update

[starryskies]

Folks. It seems I cannot taper further. Not even with my insanely slow micro-taper. I´ve been having insomnia already since childhood, so already way before ever starting Lexapro. But withdrawal makes it 10 times worse. Which again makes my ME/CFS worse, and it´s getting dangerous. I won´t reduce any further. Even though I would indeed one day like to come off of it. I just don´t know how to proceed, even the smallest tapers (smaller than 1%) seem to be undoable now, just because of sleep deprivation.

[starryskies]

Hello Folks,

My latest withdrawal journey started 2.5 years ago. Had been on 5 mg Lexapro. In the beginning I could reduce by 10%, I "managed" to do that twice. Held 1-2 months inbetween. Since then it got exponentially harder. I´m now reacting to micro-reductions of less than 1%. Even though I hold the reductions for sometimes months. So I can now only reduce by 5% in a whole YEAR. Divided by many nano-tapering steps of course.
I´m now at 2.666 mg Lexapro, my next step will be 2.66 in 1-2 months, then 2.65 mg. I hope I´ll manage to be at 2.60 mg at the end of the year. But since it´s gotten exponentially harder, I will not manage to come to zero anymore in this lifetime. I´m 39 now, and I´d need 100 years to withdraw without being bed-bound.

I´ve got ME (neuroimmune condition), not sure if that adds to it. I feel that´s not the reason though. I´ve altogether taken Lexapro for too long IMO (on-off since 2003, so that´s 18 years). But others who´ve taken it for a similar length of time have a hard time, but not THAT hard.

I´m sad, that I won´t manage ever to get to zero, I won´t lie. I could maybe, if being 100% bedridden, suicidal and not being able to sleep for 10 years was something I was willing to accept on top of my chronic illness... I wouldn´t rule out that I´d die from it, even though that might sound over-dramatic to you guys.

Please, I´m not just whiny and over-sensitive, if I was I couldn´t have made those bigger reductions in the beginning. I always hope that maybe withdrawal just accumulated, if I hold for half a year, then I can start with bigger reductions again. But that´s not the case. 

This is my 4th withdrawal, and while the first one was literally no big deal, each consecutive withdrawal was 100 times harder than the one before. The 3rd cause protracted withdrawal. Shouldn´t have gone back on Lexapro, but my doctor bullied me until I gave in.

Edited March 1, 2021 by getofflex
merged from Tapering forum

[Phil52]

@starryskies

 

Wow, just wow. Such similar situations. 
 

how y’a doing now? 1 year later? 
 

i did the drop. I’m 2 years clean and don’t think I should have pushed it to 0. I should have stayed at around 5mg mark. 
 

still paying the hefty price