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Bellatrix

Bellatrix: 16 yrs on Lexapro, 8 months off, including 4 in withdrawal

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Bellatrix

I'm so happy to have found this site.

I was on Celexa and then Lexapro for 16 years.

I took my last dose of Lexapro in early November 2016 after a multi-year taper. After being on 2.5mg, I stopped completely and was fine. No withdrawal effects until 4 months later - March 2017. To steal from Stephen King's phrasing - My ears started ringing...and anxiety followed.

 

The past 4 months have been horrible. I was trying to "tough it out" but i finally decided to try reinstating Lexapro last week. I took 5mg for 3 days and was ok, until the 4th day when i suddenly got struck by just incredible fatigue. And I had thought i had felt exhausted all the time before! I didn't take the Lexapro that night, and the next day I still had the extreme fatigue, and in addition I felt like i couldn't get enough air, and my pulse was lower then normal.

 

I stopped taking the Lexapro and the following day my breathing was OK again - but the fatigue has remained. Whereas before I was able to go to work, now I can't even do that. I couldn't understand why some days would be ok, and then the next day would be horrible - but I found this site and Windows/Waves made it make so much sense.

 

I'm hoping to find other people who had a 4-month delay on their withdrawal symptoms, and people who have had success after long-term SSRI use.  I'm trying to decide if I should try the Lexapro again at 1 mg, or if at this point, being 8 months off, it's not worth it. I'm scared of the breathing problems and I hate that I am now worse off then i was before trying the Lexapro again.

 

I could go on, but this is an intro post. I've lost 10 lbs. due to what I call "Anxierexia", and I have no more weight left to lose - so every day is a struggle to try to get more then 1000 calories in me. I've been to several doctors, blood work, etc. thinking that there was something wrong with me -- but the idea that this is withdrawal just makes so much sense and is giving me hope that if I give myself time - my system can heal.

Edited by KarenB
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KarenB

Hello Bellatrix,

 

I'm sure you'll find plenty of people here who have also had delayed withdrawal.  And yes, with time you will heal.  I'm glad you found the Windows and Waves page useful.


After being off for four months, we'd have suggested a much smaller amount than 5mg as your brain will have adapted to some degree to being on nothing.  At this stage you might try 1mg and see how that goes.  Or, if you prefer to be even more cautious, 0.5mg.  Tips for tapering Lexapro

 

It can take at least four days for a drug to get steady in your bloodstream.  Taking notes on paper about what happens will help you to make future decisions.  Further down the track when you are nicely stabilised again you could start tapering off according to our 10% monthly guidelines.

 

Thanks for writing a signature.  Can you add to it the details of your recent attempt at reinstatement? 

 

Have a read of those and then you can come back to this thread to discuss things further.  This can be your journal to record your tapering and healing progress, and to ask questions. With time and good care, you will be able to one day be off this drug. 

Welcome to SA,

Karen

 

Welcome to SA,

Karen

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Bellatrix

Thank you so much for writing Karen! I can't tell you how much it means to me. I woke up this morning and the first thing I did was to check and see if anyone responded. My mood over the past 12 hours has improved incredibly just by finding this site and your response. 

 

Ive actually been off Lexapro for 8 months now. 4 months fine, then the past 4 months with the withdrawal. My doctor is supportive of the liquid dosing, I just think 8 months may be too long and after how bad this week has been after trying 5mg for 3 days - I'm nervous about even a tiny dose. 

 

I feel like my words are clumsy - but I will start posting/update my signature. 

 

I hope you have a wonderful day. 

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Bellatrix

Oh - also - is it possible to edit the title of my post? "16 years on Lexapro, 8 months off. 4 months withdrawal"

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Bellatrix

I have been off Lexapro for 8 months, but didn't get withdrawal symptoms until 4 months ago. I am so scared that I waited too long and reinstating even at a tiny dose won't help. 

 

 

Edited by scallywag
moved from reinstatement topic

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Bellatrix

So here's my story. I went on Celexa 20 mg back in 2000. I was in college and struggling with a lot. I had a constant feeling of nausea and would get crippling panic attacks in which i'd actually "white out" - no vision, no hearing, and then fall down. After refusing to believe that this could possibly be caused by anxiety, I had a really bad panic attack and said "screw it", and gave Celexa a try. It gave me my life back. Within 2 weeks I was feeling better. I still had the nausea and the panic from time to time - but it wasn't every day and it wasn't crippling.

 

I don't regret going on the Celexa. I do wish that I had been more aggressive with therapy, then maybe i could have dealt with my underlying issues and gone off it much sooner. My attitude was that i felt fine and I'd take Celexa for the rest of my life if i needed to.

I went to grad school and the Celexa dose went up to 40 mg

I moved and started a job and the Celexa dose went up to 60 mg, felt like a zombie - and didn't really seem to be working.

So in 2005, my doctor switched me to Lexapro - 20 mg. Everyting evened out again, and I continue to bop along on my merry way.

I got married, got a great job and was doing well. I went up to 30 mg of Lexapro as it started to "poop out" again.

 

My job can be very stressful, as in, people's lives can be at stake, and after a particularly stressful incident in 2013 i had a "breakdown" where I was just non-functioning in a state of total panic for several days. I came out of it but decided that clearly the Lexapro wasn't working anymore and it was time to start a new strategy.

 

I began intensive Freudian Psychoanalysis. You know -on the couch, talking about your parents. I went 4 times a week. And guess what - i got better. I got amazingly better. I went down to 20mg of Lexapro and stayed there for a year or so. Felt fine - panicy episodes would come up, but we would deal with them, and i'd always come out of it after a few days or a week. In 2015 I went down to 10 mg Lexapro and held there for another year or so. My husband wanted to have children, but didn't want me on Lexapro for the pregnancy.

 

So in 2016 i went down to 5mg Lexapro, came back up to 10mg, then back down to 5mg. My tapers would be at least 6 weeks before going down. In August 2016 I went down to 2.5 mg. In November I stopped completely.

 

The only issue I had was relearning emotions. After 16 years on SSRI's i was basically an emotional toddler. No matter what the issue was - a burnt pancake or something more serious - it came in emotionally at 100 and I would have a tantrum. Slowly I went from emotional toddler, to emotional child - and now despite the other symptoms. i identify emotions and react more normally. "Ah! This is frustration!" "Ah! This is anger!"

 

Between November and March, a lot of things happened, and if you follow US politics you'll know some of them...

Christmas Day i found out I was pregnant

A month later, my husband was present during one of our nation's lovely mass-shootings (he was OK, but the minutes it took to get in touch with him were unbelievably terrifying)

A preposterously stressful work event happened

I had a miscarriage on inauguration day

 

i'm going to take a typing break. But a month after the miscarriage, 4 months after Lexapro discontinuation, Having gone through ALL THAT; the physical withdrawal symptoms began. First as tinnitus (constant, still have it), then crippling anxiety, lightheadedness, acne, rashes, waking up every morning at 4:30 am in a state of terror that lasts for several hours, not eating, exhaustion.

 

Last week I decided to to go back on Lexapro (before i had found this site). My doctor suggested 10mg - I asked if I could do 5mg because my system seemed soooo sensitive to everything. The 4th day back on the 5mg I had an adverse reaction and have had unbelievable fatigue ever since. I thought it was bad before - but at least i could work. Now I can't work. My job is very understanding, but i hate not being able to work. I can't believe i'm longing for how I felt 2 weeks ago, which i thought was rock-bottom.

 

I'm scared I'll never get better. I'm scared that if I try a tiny dose of Lexapro (.5mg) that it's been so long that it won't work. I'm tired of forcing myself to eat (i've lost 10 lbs. and i can't afford to lose any more).

 

I'm also incredibly isolated, and pretty desperate to connect to other people. I don't really have a lot of friends, i'm not close to my family - who live 3000 miles away. So I really hope that finding this site - and talking with other people in the same boat will help.

 

Wellness and Healing to anyone who read this far (and even if you didn't)

 

~Bellatrix LeStrange~

 

 

 

 

 

 

 

 

 

 

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Henosis
3 hours ago, Bellatrix said:

I have been off Lexapro for 8 months, but didn't get withdrawal symptoms until 4 months ago. I am so scared that I waited too long and reinstating even at a tiny dose won't help. 

 

 

 

 

FWIW, I didn't run into withdrawal problems for two months and was in severe withdrawal for approx 4-5 months before reinstating. 

Most of the symptoms immediately resolved (at least to 90% or so), but I did end up with anhedonia and apathy. This was with Paxil.. 

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Bellatrix

Thanks Henosis - that's good to know. I never had to deal with depression before until the withdrawal. Sometimes I don't know which is worse. Anxiety is about constantly struggling to survive, Depression is ... the opposite. Such a dark and scary place.   

I wish you the best. 

?

I'm not sure if emojis show up, but thinking about a cow mooing always makes me smile a bit. Moo. 

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Blondiee1915

Bellatrix -

 

I just read your story quickly and was compelled to comment .  I was also on lexapro for 10 years with a few unsuccessful attempts at tapering .  I withdrew rather quickly (actually more of a cold turkey ) last summer and still suffer .  My symptoms got worse 3 months after last dose I reinstated like you at 5 mg stayed there for 3 months and with little success switched to another SSRI Luvox .  The dizziness I experience daily is intense but the fatigue is something else I do not even know how to describe it .  I am still having no relief with that and struggle greatly with working full time .  I hope for all of us it will get better .  I take supplements - fish oil, vitamin d, folic acid, vitamin b complex but nothing is lifting this crushing fatigue .  

 

Sorry I do not have helpful advice but wanted to let you know you are not alone 

 

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KarenB

Yes, 8 months is a lot different to 4 months off.  Will you read the reinstatement thread so you can form a better idea of the possibilities? 

 

I still think, after reading what happend when you resinsted the 5mg, then stopped again, that reinstating 0.5mg would be helpful.  (But obviously I can't gaurantee anything!) 

 

Read that thread, then pop back in here to let us know what you're thinking, or ask any more questions. 

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bubble

I agree with Karen.

 

If you had been on the drugs less than 16 years I would be calmer about let's try to tough it out approach. But 16 years is a long time and I fear your brain will get even more distressed as it realises this substance is no longer there.

 

I would also try out 0.5 mg. Even if there is a negative reaction you can stop taking it without consequences. At least you will know that you have tried. It might save you from lots of suffering.

 

As Karen said, we can't guarantee but personally I would give it a try.

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Bellatrix

I just wanted to let folks know that I started taking Lexapro in liquid form in July and as soon as I hit .4 mg it was like magic. I had started at just one drop and slowly moved up. I'm still not 100%, but the lions share of symptoms were greatly reduced. I reintroduced 8 months after stopping Lexapro and so much suffering. So just to let people know, there is hope!

 

ive managed to find 3 peer-reviewed articles that mention the idea of acute post-withdrawal from ssri's - from a journal called Psychotherapy and Psychosomatics. It's frustrating to be in medical "grey area". There just are no studies done on long-term ssri use and then following the patient for several months. Everythings like "we gave them 6 weeks of Paxil and watched for withdrawal symptoms for a week after"

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Bellatrix

Oh - I should also add - I started taking prenatal vitamins again - not for trying to conceive, but because they have omega 3 and lots of iron and other good stuff in them at a higher dose then a regular multi-vitamin.  They also seemed to cause an improvement in symptoms when coupled with the .4mg of Lexapro. 

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nz11
1 hour ago, Bellatrix said:

I just wanted to let folks know that I started taking Lexapro in liquid form in July and as soon as I hit .4 mg it was like magic. I had started at just one drop and slowly moved up. I'm still not 100%, but the lions share of symptoms were greatly reduced. I reintroduced 8 months after stopping Lexapro and so much suffering. So just to let people know, there is hope!

wow this is a stunning update.

Please do keep posting of your progress.

 

1 hour ago, Bellatrix said:

ive managed to find 3 peer-reviewed articles that mention the idea of acute post-withdrawal from ssri's - from a journal called Psychotherapy and Psychosomatics. It's frustrating to be in medical "grey area". There just are no studies done on long-term ssri use and then following the patient for several months. Everythings like "we gave them 6 weeks of Paxil and watched for withdrawal symptoms for a week after"

You are onto it.

We are not so much in the  medical grey area but rather in the medical guinea pig area.

 

1 hour ago, Bellatrix said:

I started taking prenatal vitamins again

Are you able to give some specifics regarding these vitamins. 

What are their names?

 

nz11

 

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mona11

Very happy to learn that you got better with 0.4 mg. Isn't it amazing?! It tells me that we should just keep lowering our doses at a 10% rate even when we are at 0.4 mg. You need to be on this dose for some time until you are really stable.:) 

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On ‎24‎.‎9‎.‎2017‎. at 0:30 AM, Bellatrix said:

I just wanted to let folks know that I started taking Lexapro in liquid form in July and as soon as I hit .4 mg it was like magic. I had started at just one drop and slowly moved up. I'm still not 100%, but the lions share of symptoms were greatly reduced. I reintroduced 8 months after stopping Lexapro and so much suffering. So just to let people know, there is hope!

 

ive managed to find 3 peer-reviewed articles that mention the idea of acute post-withdrawal from ssri's - from a journal called Psychotherapy and Psychosomatics. It's frustrating to be in medical "grey area". There just are no studies done on long-term ssri use and then following the patient for several months. Everythings like "we gave them 6 weeks of Paxil and watched for withdrawal symptoms for a week after"

This is great news and thank you so much for letting us know. Given the state of the official medical understanding of what we are going through it is so very important that we learn from each other about what works and doesn't in this unchartered territory.

 

Did you start with 0.1 mg and over what period of time did you increase to 0.4? What was the initial reaction after taking that first drop?

 

Keep us posted. 

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Altostrata

Good to hear low-dose reinstatement worked, thanks for letting us know. 

 

If those papers are not already in the From journals and scientific sources forum, please add them!

 

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Bellatrix

I started with .03 mg (one drop). I did that for 3 days, then went up to 2 drops (.06 mg). I had no reaction at these low levels, either positive or negative. I continued to go up by a drop or 2 every few days. After around 2 weeks I hit .4 mg. I held there for 2 days, and when I woke up the 3rd day, the severity of the physical symptoms I was having (extreme fatigue, burning mouth, foggyhead, etc) were greatly reduced. It has now been over a month and those symptoms have not returned. 

 

I still have a long way to go. While this dosage seems to help with the severe withdrawal symptoms, it's not an effective dose for treating anxiety, and I still have some of the sleep issues that seem to be common on here. And lack of sleep can definitely exacerbate things. 

 

There are still hard days and set backs, but nothing like it was 2 months ago, let alone earlier this spring. 

 

Im hoping this stabilizing dose coupled with therapy, vitamins, meditation, and time can lead to healing. 

 

Im taking a One-a-Day Women's Prenatal1 vitamin (it has lots of iron and also fish oil. my iron levels are low from not really eating for so long. But my fatigue went away from the .4mg, I didn't start supplemententing iron til later). 

 

I go to psychoanalysis 3x a week - if you've done CogBe and have an option to try this, i highly recommend it.

 

I try to do the free meditation sessions offered online by UCLA's meditation center. They range from 3 minutes to 20, and I've found the techniques taught  helpful when I'm very anxious/panicky - especially upon waking up. 

 

I do wish I had family nearby. I think spending time with a sibling or a cousin, or being able to help them out with errands or housework would be fulfilling. 

 

 

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bubble

Thank you very much for these additional details.

 

Anxiety is also a withdrawal symptom. I like your approach. It is good that you recognize you still have a long way to go but are focused on things which improved. I'm a big fan of therapy myself. I would be stuck in my thought processes and personal emotional and developmental history had I not had a support in gaining some insight into it. I also think that psychoanalytically oriented therapy is a great complement to the CBT. The latter helps you change your thinking patterns while the former gives you some insight into why they are the way they are... I also do meditation with the app called calm.com and like it because guided sessions take from 3 min to 30 min so one can gradually build up the meditation muscle.

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nz11

Bellatrax are you able to post an update.

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nz11

Bella how are you at this time?

 

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Bellatrix

Hi NZ!

im about the same as my last post. Maybe a little better. I feel like my "baseline" is calmer. Had a bit of a wave last month, but it only lasted 2 weeks. 

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nz11

Thanks for the update 

You are doing great.

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Bellatrix

An improvement:

 

one thing ive noticed in the past few weeks is that my sleep has improved a bit! I still wake up at around 4-5 am, but i don't wake up in a panic - and the 5-6 hours of sleep I do get are deeper now. For a while, any little thing would wake me up - but now I'm sleeping deeper and even dreaming more coherently. 

 

While it's usually 5-6 hours, I slept for 7-8 hours the other night!! I didn't think that was possible anymore! I woke up and couldn't believe it!

 

still a long way to go - had a bad hypochondria tailspin last week. But even walking 3 steps forward, 2 steps back - you progress. 

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