elleM: Long term Lexapro, Long covid.

[elleM]

Hello, I'm a 34F and I'm here because I saw this site recommended on a piece done by the BBC called The Anti-Depressant Story. A lot of what I heard in that documentary was an eye opener and validating. I have experienced the negative effects of withdrawal, and also the negative effects of long term Lexapro use. I'm over it and my goal is to one day be 100% anti-depressant free. Like many I was promised time and again that I would be on anti-depressants for a short time, psychology would really help, and I could stop easily.
I'm also here because I recently had a very bad experience dropping from 20mg Lexapro to 15mg for 2 weeks then 10mg for 4 weeks which lead to me feeling suicidal and broken.

Here is my background to give all this some context:

~2007 or 2008 diagnosed with depression started Lovan (fluoxetine) unsure of dose and timeframe. Stopped cold turkey. Probably started up again during the early 2010's but I can't remember much of the details or my life during this time.

~2015 - Started Lexapro again at 10mg due to depression/ toxic relationship. I recall going up to 20mg before 2018.

 

2018 -  Felt like 20mg Lexapro wasn't working anymore so my doctor at the time had me drop down the Lexapro to try Fluoxetine and then when that didn't work to Sertraline and when that didn't work I went back to Lexapro 10mg which stabilised me. During that time of transition the doctor recommended the 'standard' drop down of around 2 to 4 weeks of one medication, stopping completely if needed, then starting a new one. Rinse and repeat. Sertraline and Fluoxetine didn't help, and during the whole time I my mood was low, irritable, snappy, crying, hopeless etc. At the worst I was trembling and full of energy that I would yell and tremble to release my pent up energy, while at the same time also being exhausted. It was a horrible experience. For context I was having a hard time at work and was going through some major life events.

 

2019-September 2022: 10mg Lexapro.

Other things of note:

September 2021 - Bells Palsy with post viral fatigue lasting 4-5 months.

March 2022 - Bells palsy again caught early, post viral fatigue again less severe this time, but had a horrible time withdrawing from high dose of prednisolone 50mg per day for 14 days.

 

September 2022 Diagnosed with Long Covid with severe fatigue, heart palpitations, anxiety + panic, recurrence of pain and symptoms associated with the side of my face affected by bells palsy. Discussed upping my dose of Lexapro to 20mg with my new doctor which we began immediately to help with the anxiety. It helped get me stabilised and I saw good, but very slow progress with my long covid symptoms and anxiety. I work from home and the amount I can work per day started at about 2 hours and grew back to almost full time hours by June 2023.

 

June 2023: Spoke to my doctor about lowering dose of Leaxpro back down to 10mg since I was feeling stable mood-wise for some time and Long Covid symptoms were improving steadily. I recalled my sh*tty time switching meds in the past and was resolute to ask to taper down slower than I had previously. I had read an article about hyperbolic dose reduction of Lexapro, and was keen to discuss a slower titre down to 10mg. The doctor said I would be just fine going straight down to 10mg, when I pressed about my bad experiences in the past even suggesting I go down to 15mg first, he stuck firm to the fact I wouldn't need to. I no longer see this doctor for this reason and for his waning support of my experiences with Long Covid.

I lowered my dose to 15mg by taking half 20mg tablet + half 10mg tablet to get 15mg. Duration 2 weeks approximately (I didn't record the exact date I started) experienced brain zaps, low mood irritability, low appetite.

 

July 1 2023: Dropped dose to 10mg tablet of Lexapro. Again, brain Zaps, low moods, irritable etc.

August 5 2023: Went back up to 20mg (own decision) because I had been feeling so low for the last month with no improvement, fatigue was also increasing, heart palpitations were back, felt like my health was also suffering along with my mental health. 

August 8th 2023: Went to ED due to severe thoughts of self harm, felt completely hopeless and unheard by medical professionals. I am now linked in with support services.
One of the services were short term which included a mediccal review by a psychiatrist. The psychiatrist recommended that I stay on the 20mg until I was stable with the potential to up the dose to 30mg if I don't improve. (Because I definitely wanted more Lexapro haha!) He tossed around the ideas of switching meds and even trying anti psychotics, while also agreeing I didn't appear to have any psychotic episodes or symptoms(?!). So it was another meh experience, but at least he did appear to be thoughtfully considering what I was saying and agreed that switching to a different anti-depressant during times of crisis isn't a good idea. I got prescribed some 5mg Valium tablets to only take when I was having panic attacks until the Lexapro 20mg had kicked in. I have taken 2.5mg cut tablet on two separate occasions of a panic attack, and 5mg for a severe down spiral. These were spaced out and are only taken as needed. I don't want to add addiction to the list of issues I have too!

So here we are today, I have a new doctor and we have tackled the immediate issues with my health, she seems to be listening and is thoughtful and encouraging. I am recognising that what happened wasn't a relapse, but most likely withdrawal symptoms which then spiralled. 

I don't want to be on Lexapro any longer than I need to, and definitely not at this dose. I dislike the memory issues I suffer from, dry skin, sexual disfunction (and all the rest that comes with that, which I learned from the documentary could be permanent!! No one told me, all doctors said "hmm thats really sucks"). 

I am back on 20mg for 3.5 weeks now and will wait until my mood and health have stabilised before I discuss lowering my dose again with my new doctor. Having had my life turned upside down with long covid/post viral fatigue for the past year has changed my life and also given me the space and time to work on myself. All of these 'lows' have helped give me the determination to put in the long term time to improve and better my life. 

I'd love all of your support as this all begins; in stabilising, then reducing again sloooowly. I can do this! 








 

[FireflyFyte]

Hello Elle,

 

Welcome to SA. Thank you for summarizing your drug history in your signature.

 

How are you currently feeling on the 20mg of Lexapro?

 

On 8/30/2023 at 2:00 AM, elleM said:

I am back on 20mg for 3.5 weeks now and will wait until my mood and health have stabilised before I discuss lowering my dose again with my new doctor.

 

This is what we would recommend, don't make a drop until you are stable. Once stable, we advise that you don't drop more than 10% of your previous dose per month. You can read more about why at Why taper by 10% of my dosage?

 

For details specific to tapering Lexapro, check out Tips for tapering off escitalopram (Lexapro)

 

You may also want to read How to talk to a doctor about tapering and withdrawal? What to expect.

 

Thanks,

 

Firefly

 

 

[elleM]

@FireflyFyte Thanks for your reply, I appreciate the links!

Only just yesterday or the day before did I finally feel like I have 'clicked' and settled back into the 20mg and the mood symptoms have subsided. I still have some heart palps, but it is much reduced. 

I think I will maintain the 20mg for at least a month since I feel like I need to take things extra slow due to the effect Long Covid has on my Autonomic Nervous System, so I can be extra sensitive to drug changes.

I have a doctors appointment in 3 weeks where I will hopefully have time to discuss trying to drop again and request the liquid form of Lexapro instead of the pills. This will help me test the waters with this new doctor and see if she is agreeable to the idea or hold the same views of her colleague (my old doctor is at the same practise). I have read the post about talking to doctors, so I'm going to take all of that on board to hopefully get the best outcome.

My first goal is to get to 10mg again safely. stop there and reasses, and make sure 'life' issues and long covid are stable enough for me to get off 100%. I know its a long way off, so I don't need to worry myself about it right now, one thing at a time.

At this time, I think the slide method would perhaps be a better fit for me, we shall see.

[FireflyFyte]

11 hours ago, elleM said:

Only just yesterday or the day before did I finally feel like I have 'clicked' and settled back into the 20mg and the mood symptoms have subsided. I still have some heart palps, but it is much reduced. 

I think I will maintain the 20mg for at least a month since I feel like I need to take things extra slow due to the effect Long Covid has on my Autonomic Nervous System, so I can be extra sensitive to drug changes.

 

I think it is a great idea to hold for at least a month. Hopefully your heart palpitations will continue to calm down.

 

11 hours ago, elleM said:

My first goal is to get to 10mg again safely. stop there and reasses, and make sure 'life' issues and long covid are stable enough for me to get off 100%. I know its a long way off, so I don't need to worry myself about it right now, one thing at a time.

 

This is a great attitude.

[N2deep]

On 8/31/2023 at 9:29 PM, elleM said:

 I feel like I need to take things extra slow due to the effect Long Covid has on my Autonomic Nervous System, so I can be extra sensitive to drug changes.
 

Hi elleM, I have Long Covid too, I'm also wary of this issue. My ANS is fried. I hope we are both able to taper without a hiccup. Good luck. 

[elleM]

Thanks for commenting @N2deep. Long cocid definitely adds an extra layer of complication to the mix. 
This past ill advised taper from my previous doctor, and subsequent dose increase has really thrown my body through a loop. I’m struggling with high fatigue again after making so much progress in the last 8 months. So this isn’t helping my mental health despite the higher dose. 
It’s a slippery slope so if you have any wisdom to share I’m all ears.

[N2deep]

I had the same thing happen. Ill advised taper by doctor. And I think it also made my LC symptoms worse, or maybe it was just the extra anxiety and stress from the fast taper that did it, who knows. Anyway I'm also not in a great place mentally (worst in my life, for sure), but we are lucky to have this forum and the great people here to give us some guidance. I wish I had more to add per the LC issue, but all I can say is mask up and try not to get reinfected, and have hope that the researchers are able to bring us some goodies at some point. All we can do is taper slow and hope for the best. I wish you the best of luck, we can do it!

[elleM]

@N2deep thanks for the response! 
We can do this!!

[elleM]

Checking in to document my current symptoms of up dose to 20mg lexapro

 

- The week after feeling like the meds clicked and cleared the fog I was sick and bedridden for a day and was very fatigued for the majority of that week. Despite the physical fatigue I’ve felt my mind gain ‘energy’ and I’ve been seeking out different hobbies to do when physically fatigued to help my body and mind enter a ‘safe zone’ which helps stabilise my ANS.

 

-This week I have PMS related fatigue and yet my mind feel like its ramped up the energy even more! The problem is I feel like I’m jumping around in my head and my body is just no where near capable of helping my brain cash the checks it wants to write? Its as if one part of my brain is energised and the other is still slow/fatigued/deconditioned, so it can’t keep up.
Despite this, I’m being kind and gentle with myself so it isn’t hurting my mental health, its just a very strange feeling that I’m attributing to the increased Lexapro in my system. 
 

- Experiencing dry feet, hands, elbows and scalp.

 

- Yesterday I had a social interaction of around 4 hours, came home and did some work, then went on a short walk. Which is a lot for me to do in one day right now. Expectantly, I was tired 2 hours earlier than my usual bedtime and went to bed. I didn’t fall asleep for a further 4 hours due to suddenly feeling awake and being uncomfortable with the dry skin.

I ended up doing a small workout to tire myself out and get some sleep. Woke up in a sweat after 8 hours of sleep. 
 

Reminder to future me. You hate this feeling of dry skin, brain racing with no where to go and spontaneous insomnia which you have felt before on higher doses of Lexapro.
Everything is dry and it sucks. 

[Jools2816]

@elleM everyone is different and experiences symptoms for different reasons but I have experienced very dry skin, and my scalp has been very itchy since starting escitalopram (Lexapro). I have extreme fatigue; it is simply unbearable, and I guess that the excess of 'energy' in your mind is anxiety, but of course is a speculation. However, sleep disruptions are a very well-known side effect of the drug. And night sweats or rather temperature regulation symptoms.  I have been diagnosed with Chronic Fatigue Syndrome that the docs claimed has been aggravated by covid. I truly believe that this is due to the side effects of the drugs as I did not have it before, certainly not the current degree. Very hard to know what is what. Tapering, as per advice here, I think, is the only solution. Sending my warmest thoughts. 

[elleM]

@Jools2816 Thanks for your reply. I’m speculating the extra energy is the drug doing its thing since it can increase energy as one of the side effects (or theraputic effects for some). It isn’t anxiety thankfully.

 

I’m sorry covid has also impacted your CFS, I’d imagine that is very hard and I can only empathise a little from my experience with Long Covid. I did read somewhere there was a link with longterm SSRI use and long covid, I’ll have to search for a source. Perhaps similar mechanisms impact CFS.?

 

Despite everything, yes, slow tapers and getting off the stuff is the only way. Best of luck!

[Jools2816]

@elleM would be so grateful for that info about link between SSRI long term use and long covid. 🙏 if you can dig it out :). I assume there are , in some case, similar underlying mechanisms to long covid and CFS/ME. My drug history is similar to yours, although more long-term use on my part….Keep well! ❤️

[elleM]

Checking in. I went to see my doctor this week and we spoke about my symptoms over the last 2 months, and she agreed it most likely due to dropping the Lexapro too quickly. Due to long covid making my body sensitive to anything and everything, she agreed to try dropping my dose in small amounts (5%) over a long period of time (years) using the liquid Lexapro. We are going to start in one or two months and drop by 5% (20mg to 19mg) to begin with. We were both in agreement that I needed to be stable on the 20mg first, and seeing as though I had only just started to feel better at the start of September, it was best to wait at least one more month before dropping again, but perhaps two months depending on how my body is recovering.

I'm so happy this doctor was willing to listen and work with me. I'm excited to get my life back on track. I couldn't be more grateful.

At the time of writing, I am on my cycle and my body is weak and I tire easily. I have to go back to walking slowly and pacing all of my tasks. Mentally I am fine, I feel confident that I can get through this and recover fully. My heart palps are back last few days, but I could have over done it physically causing my body to be overly fatigued (another one of those cross over symptoms of WD and LC)

[FireflyFyte]

1 hour ago, elleM said:

Checking in. I went to see my doctor this week and we spoke about my symptoms over the last 2 months, and she agreed it most likely due to dropping the Lexapro too quickly. Due to long covid making my body sensitive to anything and everything, she agreed to try dropping my dose in small amounts (5%) over a long period of time (years) using the liquid Lexapro. We are going to start in one or two months and drop by 5% (20mg to 19mg) to begin with. We were both in agreement that I needed to be stable on the 20mg first, and seeing as though I had only just started to feel better at the start of September, it was best to wait at least one more month before dropping again, but perhaps two months depending on how my body is recovering.

I'm so happy this doctor was willing to listen and work with me. I'm excited to get my life back on track. I couldn't be more grateful.

 

It's very rare to find an understanding doctor but glad that you discovered one. I agree with them on holding for a few months before starting the taper.

[N2deep]

Glad your doctor is on the same page. That has to be a relief. 

[elleM]

Today I finally started tapering off Lexapro. My Long Covid and mental health symptoms are finally stable enough that me and my doctor agreed now is a good time to start the taper. Given my body is so sensitive, we have started on a 5% taper schedule to see how I go, and holding for 8 weeks. I'll check in with my doctor at every 8 week point to touch base and see how I'm going to decide if I go down or hold longer.

I was prescribed the 20mg/ml liquid and have a dose of 19mg, or 1.9ml. I'm wondering if the 10mg/ml liquid would be easier to down every morning as the dose would be .95ml and that would mean 1 syringe instead of two (1ml syringe of 1ml then .90). My husband mentioned there are digital syringes or pipettes (?) I can get if needed, since, this is going to be a long road, and it would make it more precise and easier. I will investigate the literature here and see what the consensus is. 

Wish me luck and stability.

elle

[littlebird]

8 minutes ago, elleM said:

Given my body is so sensitive, we have started on a 5% taper schedule to see how I go, and holding for 8 weeks. I'll check in with my doctor at every 8 week point to touch base and see how I'm going to decide if I go down or hold longer.

Congratulations! Glad you're starting slow. If you find 5% is too hard, scooting down gradually to get to that 5% can be helpful. 

 

9 minutes ago, elleM said:

My husband mentioned there are digital syringes or pipettes (?) I can get if needed, since, this is going to be a long road, and it would make it more precise and easier. I will investigate the literature here and see what the consensus is. 

I had no idea! Gonna keep this in mind when I get to smaller doses and need more accuracy.

 

9 minutes ago, elleM said:

Wish me luck and stability.

Wishing you so much luck and stability! Please keep us updated on how you get on, and please take extra-good care of yourself.

[elleM]

I don’t know why, but this Mcycle has been particularly brutal to my mental health and it’s hasn’t let up after it finished. Its a struggle right now with intrudive thoughts, anger, and frustration. 
I was feeling great up until then, no I’ll effects from the taper. Now, not so much. 
I know it will pass but since this is my first blip, I don’t know what to expect or how long this will last before I stabilise. Ugh! 
 

[Warpman]

Hello @elleM,

 

I read your report carefully. I see you've experienced panic and anxiety attacks a few times, haven't you? So much so that your doctor prescribed valium.

 

The question I ask you is: Before taking psychiatric medication, had you ever experienced panic and anxiety attacks?

 

In my case, I only experienced this type of reaction while taking some type of medication.

[FireflyFyte]

On 3/18/2024 at 8:47 AM, elleM said:

I know it will pass but since this is my first blip, I don’t know what to expect or how long this will last before I stabilise. Ugh! 

 

Cycles can increase withdrawal symptoms. Have they calmed down at all?

[elleM]

9 minutes ago, FireflyFyte said:

 

Cycles can increase withdrawal symptoms. Have they calmed down at all?

Hello,

Yes, they have calmed down a bit, so it all doesn’t feel so intense and overwhelming. Now, I feel as though its present, but manageable for now. I just feel a bit flat.