belikeabamboo: 18 months off Escitalopram, struggling badly, very desperate and full of doubts (trigger warning!)

October 16, 2021

Hello!

First of all I want to thank all the beautiful heros around here, who share their storys, it helped me a lot to read the success storys again and again to stay focussed and motivated, to keep hope and not give up during the last 2,5 years.

I am 35, female. Last friday I hit the 18 months mark after coming off Escitalopram for the third time in April 2020. Most people, especially professionals doubt that the physical and mental symptoms I experience are due to coming off Escitalopram and think it is all in my head. I am very exhausted of the horrible symptoms and having to fight all the time for being supported or even believed. Probably loosing my job and getting no financial support any more at the end of this month, the pressure becomes higher and higher and I am close to giving in and going back in the psychiatric system...and back on meds. I don't know what to do at the moment and hope to get some helpful advise here.

Here is my whole history especially of the last about 3 years of struggling:

- On holiday in Spain in 2011, while on a city tour, I had a panic attack after feeling faint. After that, I developed agoraphobia with panic attacks – something that has become manageable after psychotherapy.

- Having sat the medical exam in 2012, I worked in internal medicine in a hospital setting from 2015 to 2016, with enormous workload and pressures, constant understaffing and a feeling of being out of my depth and overwhelmed while also having incredibly high expectations of myself and my care for the patients. Having reached exhaustion, the panic attacks returned 12 months into the job, and I left.

- I restarted psychotherapy, and in September 2016 started taking 15mg Escitalopram (prescribed by a psychiatrist)

- I stabilized quickly and took a job as an occupational GP in a very large company in November 2016. I enjoyed that job, felt valued by my colleagues and managers and did’nt feel overwhelmed. It gave me a good work-life balance, and I started volunteering at a charity offering medical support to homeless people, something I thoroughly enjoyed. I had a great relationship, supportive family and friends, enjoyed being active and sporty.

- In July 2017, after about 9 months, I attempted to come off the drug, having discussed it with the psychiatrist, tapering by 5mg/ per week over 2 weeks. After that, I felt unwell, was restless, anxious and had stomach issues. The psychiatrist said this was a sign I wasn’t stable enough and 15mg Escitalopram was reinstated. I stabilized and felt better.

- In summer 2018, I made a second attempt to come off the drug, but tapered much more slowly. Having reached 10mg we celebrated a beautiful wedding in August 2018, and I then reduced further to 8mg before going on honeymoon in September 2018. A couple of days later I began experiencing panic attacks again, along with exhaustion. I reduced further to 6mg, but then went back up to 15mg because I felt too bad, following psychiatrist advice. I stabilized again.

- In March 2019, I attempted tapering for a third time, reducing by 5mg/week over 2 weeks, because the psychiatrist thought the slow tapering might be introducing a psychological issue that was making me feel worse. During the tapering process I started experiencing symptoms, and 3 days after I reached 0mg I was completely floored, with massive physical and mental symptoms. I was unable to work for 3 months, having never been off sick in the 2.5 years before.

- There was no improvement after 6 weeks, and so after taking advice from 2 psychiatrists, I started taking the medication again – increasing the dosage by 1mg every 2 days. I had to stop that at 6mg because my symptoms became too severe.

- I found a psychiatrist in Berlin who is aware of withdrawal issues, and he recommended to reduce to 2.5mg, which I did in July 2019, the aim being for me to stabilize. At that dosage, I was able to work reduced hours (20-24 hours/week), but it was a constant battle and I felt unwell all the time.

- I began to think that maybe I had developed an intolerance to the medication, and so after months of no improvement, I began to taper off it again, following the Horowitz-paper, and reaching 0mg in April 2020. The symptoms got continuously worse as I tapered and got more severe when I reached 0mg. I have been unable to return to work since July 2020.

This is a list of my symptoms – although their intensity and the range I may be experiencing on any given day varies. While I never experienced all of them, I haven’t felt “normal” or really well.

- autonomic dysregulation: stomach and gut issues (nausea, reflux, stomach cramps, abdominal tension, gut-hyperperistaltic, flatulence and many more), incontinence (in 2019, I wet myself 3 times during the night), difficulty breathing, orthostatic dysregulation, palpitations/irregular heartbeats, sweating

- adrenalin rushes/overstimulation of the autonomic nervous system, even smallest stimuli can lead to a fight and flight response

- emotional dysregulation: crying fits, extreme mood swings, overwhelming emotions

- extreme anxiety: general, agoraphobic, social, paranoia (can’t stand someone walking behind me, feel observed and judged all the time)

- depressive symptoms: feeling extremely down, hopeless, desperate, coming and going randomly

- myalgia (legs, back, neck, shoulders, arms, whole body)

- neuralgia (toes, fingers, earlobes, shoulders, neck…)

- headache, neuropathic face, jaw and toothache

- abdominal pain

- tingling paresthesia (legs, neck, head)

- trouble regulating temperature (very sensitive to heat or cold, feeling very hot, shivering with cold), hot flushes, hot skin and feet

- extreme sweats at night

- trouble swallowing

- extreme sensitivity to light, sound, movement and smells, quickly overwhelmed with sensory input, driving or cycling has become difficult, often impossible

- dizziness, vertigo

- vivid dreams, horrible nightmares, oversleeping

- restlessness, agitation

- panic, flush, palpitaions, sweating, muscleache in the morning

- eye-issues (trouble focusing, burning, dry feeling)

- ear-issues (pain, sore feeling)

- issues with perception (flickering lights, colour distortion, static items appear to be moving, the floor goes blurry, sounds where there are none)

- depersonalisation, derealisation

- extreme exhaustion, lack of energy and strength

- brain fog, confusion, desorientation, like being on a drug (not off)

- cognitive issues with memory, concentration, finding or writing words, reading, understanding

- flu-like symptoms

- trouble regulating stress (feel overwhelmed quickly)

- trouble calming my thoughts, very intense, ruminating thoughts, interrupting cognition

- flashbacks (to all kinds of situations, some totally banale)

- travel sickness

Trigger that provoke/intensify symptoms:

- stimuli of any kind, such as light, sound, movement, noice

- multitasking

- driving (also being a passenger)

- eating

- physical activity (exercise almost impossible and has been for months, but even walks or getting dressed can overstimulate the autonimic nervous system and lead to a fight and flight response)

- screen time

- reading

- being on the phone

- music

- conversation, especially talking myself

- being in the sun

- period and ovulation

- social contact of any kind

- napping during the day

Of course, there have been issues in my life along the way, if that was not the case I would not have started taking Escitalopram in 2016. I struggle with anxiety, but it is something I am addressing. What I have been living through for the last 2,5 years does not compare to anything I have previously experienced, and most of the symptoms I experience I never experienced before I started to take the SSRI. The anxiety I feel since tapering is extreme, complete terror. It is, to be honest, hell. Since April 2020, it has got worse, and I alternate between days where I can cope and do things like take care of the household, go for walks or go to the supermarket, to days where I have to rest a lot, and days where I am house- and bedbound for most of the day. I have found nothing that eases the symptoms, having tried a whole range of things from homeopathy and acupuncture to food supplements (fish oil, magnesium). I meditate daily, do Yin Yoga a number of times a week, eat healthy, don’t drink alcohol or have caffeine, and try to walk out in the fresh air whenever possible. I sleep and rest plenty, but nothing has led to a lasting easing of the symptoms so far.

I have had a neurological checkup, including an MRI, have had my bloods and heart checked, all results were great.

After all this time, I can’t help but feel huge doubt whether the path I have chosen – accept and hang in there – is the right one. I was convinced I could live without the drug, but 3 years of fighting coming off and the intensity of the symptoms have taken me to the edge of what I can suffer through. My goal to lead a normal life feels a very long way off. I am terrified that I have misjudged this and overestimated my mental health and am questioning myself and my decisions constantly.

I am hoping that with your experience, you can give me your objective assessment of whether this indeed is withdrawal, and if I am right in that, if there is anything that might help with the symptoms or move the healing process forward.

Thank you in advance from my deep heart for your time and advice. 🙏

Edited October 16, 2021 by ChessieCat
change font, size and added som spaces

October 17, 2021

Hello, and welcome to SA. We are a volunteer-run community of people who have been or are getting off of psychiatric drugs. You have come to the right place. I'm so sorry you have been on this merry go round of getting on Lexapro and then off again, and on again. I applaud you for your attempts to get off this drug. It appears that you tapered off the drug faster than your nervous system was able to adjust. You will understand this better when you see the links I will provide. Our tapering suggestion at this forum is to taper extremely slowly, and we generally taper by 10% of the current dose no more than once every 4 weeks, so that the taper becomes exponentially smaller. Many of us taper even more slowly than this. After several taper attempts and reinstatements, it is possible that your nervous system has become increasingly sensitized, making subsequent reinstatements and tapers more difficult.

Can you please give us specific information about your drug history for all drugs you are on and have been on, especially for the past 18-24 months? It would be especially helpful to have the details of your drugs in a concise vertical list (no symptoms), only drug names, specific dates (as best you can say for example early March if you don't recall the day) and dosages of each medication decrease or increase. Please read the link below for instructions. This will allow us to give you the best guidance.

How to List Drug History in Signature

Here is some information about how these drugs actually work. This explains why we get symptoms from going off of these medications.

How Psychiatric Drugs Remodel Your Brain

This helps you understand what withdrawal syndrome is:

Video on Recovery from Psych Drugs

What is Happening in Your Brain

Windows and Waves Pattern of Stabilization

Also, as we are recovering, we suggest keeping things slow, simple, and stable.

Keep it Simple, Slow, and Stable

Here are some techniques to cope with symptoms:

Non Drug Ways to Cope with Withdrawal Symptoms

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you.

Magnesium

Omega 3 Fish Oil

Finally, going back on a small dose of your drug, or a similar drug, which we call reinstatement, may help to ameliorate your withdrawal symptoms. This is temporary, and after stabilizing you would then taper gradually off of this. There is some risk involved, but we can start with a tiny dose to minimize this risk. I would suggest trying to reinstate to 0.25 mg of citalopram, escitalopram's gentler sibling.

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

This link will explain how to dose the citalopram at this very small dose:

Tips for Dosing and Tapering Citalopram

Thank you for describing your symptoms diligently and in detail. They are all classic withdrawal symptoms. I'm very sorry that you are going through it. I understand, I've been withdrawing from escitalopram myself. I've experienced most of what you have described myself. This checklist will help you see what are common WD symptoms. It is not exhaustive.

Dr Joseph Glenmullen Withdrawal Symptom Checklist

I want to conclude by saying that you can, and will, get better. The keys are time, and patience. Healing is very slow and gradual, but it does happen. Please stay in touch and keep us posted.

October 18, 2021

Hello getofflex,

thanks a lot for your quick response! I put my drug history in my signature. Beside Escitalopram I did'nt take any meds. After my second taper in 2019 I tried fish oil and magnesium for several months but stopped it because I did'nt notive any benefits from it.

Since I came off Escitalopram for the third time 04/2020 I haven't seen any significant and stable improvements and had no windows where I felt somehow like a normal person. The quality and combination of symptoms changes in quick cycles, often from one day to another, sometimes even within hours. On some days I feel a little better and can do some small things like a walk or going to the supermarket (far away from a normal every day life), on other days I feel so awful that I am house- and bedbound just trying to survive. Before coming off Escitalopram I was a very active and social person, now this person seems like a faded memory for me. I am very scared that this is my new me now, that this is how I am without Escitalopram.

Is it possible to become better again after such a long time of suffering without significant and stable improvements? I don't want to give up but this is unbelievable hard, I am exhausted, fed up and desperate.

I would be very grateful for your assessment and advise. 🙏

October 21, 2021

On 10/18/2021 at 9:09 AM, belikeabamboo said:

Since I came off Escitalopram for the third time 04/2020

When you came off for the 3rd time, did you come off cold turkey, or taper? If you tapered, please put dates (approximate if you can't remember) and dosages of each dose change in your drug signature.

On 10/18/2021 at 9:09 AM, belikeabamboo said:

The quality and combination of symptoms changes in quick cycles, often from one day to another, sometimes even within hours. On some days I feel a little better and can do some small things like a walk or going to the supermarket (far away from a normal every day life), on other days I feel so awful that I am house- and bedbound just trying to survive.

Yes, our symptoms often morph and change, and get better and worse. It can be scary and unpredictable.

On 10/18/2021 at 9:09 AM, belikeabamboo said:

Is it possible to become better again after such a long time of suffering without significant and stable improvements? I don't want to give up but this is unbelievable hard, I am exhausted, fed up and desperate.

Yes, it is absolutely possible to get better, but it takes a very long time. Depending on the situation, it takes months to years to fully recover. Yes, WD is unbelievably hard. I feel the same way about my own WD. I will say, I'm very encouraged by the fact that I'm better now that I was 8 months ago, and vastly better than when I first came to this forum in March of 2019. Try reading some of the success stories:

Success Stories

Have you considered the idea of reinstating to 0.25 mg citalopram? This may help to decrease the severity of your withdrawal symptoms. What do you think?

October 24, 2021

On 10/21/2021 at 9:20 PM, getofflex said:

When you came off for the 3rd time, did you come off cold turkey, or taper? If you tapered, please put dates (approximate if you can't remember) and dosages of each dose change in your drug signature.

I came off cold turkey twice 07/2017 and 03/2019. The third time I came off I reduced slowly over several months (today I think not slowly enough) down from 2.5mg to 0mg. Before that I tried to updose from 0mg to 15mg Escitalopram after about 6 weeks off Escitalopram by going up 1mg every 2 days like recommendet by a psychiatrist. I had to stop going up after reaching 6mg Escitalopram because of the severity of symptoms. I found a psychiatrist who thought it was wd and he recommended to go down to 2.5mg again to try to stabilize on this dose. After about 6 months on 2.5mg I did'nt feel any better and was scared to have an adverse reaction to the 2.5mg Escitalopram. That's why I tapered down by myself - what I thought was slowly - and so reached 0mg for the third time 04/2020. I don't know if this is by definition a cold turkey. What I can say is that I felt very bad when I started tapering the 2.5mg and felt worse and worse going down so that I could'nt work any more after reaching 0mg again. I think going down and up and down and up several times in a - what I now know - very short period of time was the biggest mistake I could make but I did'nt know it any better and did'nt get the support I needed from several psychiatrists I spoke to.

I can't rememember exactly but think I tapered the 2.5mg by following the Horowitz paper 'Tapering of SSRI treatment to mitigate withdrawal symptoms' and reduced about every second week over the steps 2mg, 1.5mg, 1.0mg, 0.5mg, 0.25mg, 0mg. I will put this in the signature.

On 10/21/2021 at 9:20 PM, getofflex said:

Have you considered the idea of reinstating to 0.25 mg citalopram? This may help to decrease the severity of your withdrawal symptoms. What do you think?

Oh yes! I think I have considered tons of options to reduce this horrible symptoms over and over again during the last 18 months. The idea to put the drug in my body again that harmed me to this great extent not knowing what will be the outcome scares me so much that until now I decided to stay away from it trusting my body's ability to heal and holding on to patience, hope and belief that I will feel better one day anyway. But at the moment - after such a long time of intense suffering without significant and stable improvements - I doubt that this is true.

October 24, 2021

I forgot to write: Thank you so much for your support. 😊🙏

October 24, 2021

I think you may benefit from a temporary reinstatement. I suggest citalopram because that is a escitalopram‘s gentler sibling. It’s a very low dose so it’s less risky than reinstating to a higher dose. The more we go off and on drugs, the more our system has a tendency to become sensitized. Did you read the link about reinstatement in my first post? Think about this and let me know what you decide.

Even at very low doses these drugs, especially escitalopram, have a significant effect on us. I’m currently taking only 0.06 mg and I can feel it (mildly) whenever I do a taper. I believe that your taper speed and jumping off at 0.25 was too much for your system. So I believe you may be dealing with a combination of withdrawal as well as adverse reaction to Escitalopram.

Edited October 24, 2021 by getofflex

October 28, 2021

Do you know people who reinstated a small dose after such a long time and were successful?

October 28, 2021

Are you still experiencing vivid dreams ? Do you still got gut issues ? Do you still have bloating ? How much improvement have you seen this areas ?

If your sleep and gut improve everything gonna improve .

October 30, 2021

On 10/28/2021 at 4:24 PM, PsychologicalSafe15 said:

Are you still experiencing vivid dreams ? Do you still got gut issues ? Do you still have bloating ? How much improvement have you seen this areas ?

Hello PsychologicalSafe15,

Oh yes, my dreams are extreme intense, vivid, crazy, sometimes horrible, it feels as if I am in the REM-phase all night long. Nothing I had before coming off Escitalopram. My gastronintestinal issues are still pretty bad as well. Extreme Nausea, sometimes constantly over a period of time, sometimes coming and going in waves. Stomach and abdominal pain and cramps, coming and going as well as gastric reflux, diarrhea and bloating. The symptoms I listed in my first post are cycling rapidly between days or even within a day, changing in intensity and combination. On some days the physical symptoms are the worst, on other days the mental symptoms. Although I found some triggers that intensify symptoms, it is all very random and out of my control. Most of the days are torture. If I compare it to 18 months ago when I came off Escitalopram for the third time, the baseline is a perhaps a little bit better I think, the days where I am bedbound are a little less, but with many horrible setbacks. I am still not able to live something like a normal day life, I am still in the surviving mode. If you ask about vivid dreams and gastronintestinal issues, like all other symptoms it depends on the day, but in general both symptoms didn't improve much since I came off.

October 31, 2021

That means gastrointestinal and vivid dreams really takes lot of time to subside . 18 months is huge time still OMG. I never knew such thing can happen if so I would not take such medicine. Why dont the doctors tell about side effects OMG. Right now I want bomb them.

Due to vivid dreams our body is exhausted and next day we get super tired

October 31, 2021

MAn why on internet it is written withdrawl symptoms last 3 months and compltely subside by 6-9 month. But while talking to everybody it takes minimum 2-3 years for normal functioning and subside by 4+ years.

October 31, 2021

Haven't the vivid dreams even slightly decreasd ? Are they with same intensity ?

October 31, 2021

17 hours ago, PsychologicalSafe15 said:

Haven't the vivid dreams even slightly decreasd ? Are they with same intensity ?

Changing in intensity from time to time but not decreased constantly. When I started this journey I never thought this nightmare could last so lang but it can. But not for everyone, everyone is different, and my story does not mean that your story is the same. I think it is a very individual process, like we all individual human beings.

October 31, 2021

Hello @belikeabamboo,

I am just passing by to say hi. I've just read your thread, and let me first tell you that you are very Brave. Being 18 months(plus the previous tappers) It is hell. I know It because I CT'ed the same time(april 2020), maybe thats why your story resonated with me. But you are hanging in there and that itself is a great achievement.

On 10/30/2021 at 7:21 PM, belikeabamboo said:

If I compare it to 18 months ago when I came off Escitalopram for the third time, the baseline is a perhaps a little bit better I think,

Believe or not, thats a sign that your system is healing. It is muuuuch slower than we'd like, but It is still something.

On 10/28/2021 at 2:58 PM, belikeabamboo said:

Do you know people who reinstated a small dose after such a long time and were successful?

That is a tricky question and maybe somebody more knowledgeable than me should asnwer It. You can find in this website a lot of different experiences (if you want I can share some links tomorrow), but the truth is, the final decition is yours to make.

Who knows, maybe better days and your healing are much closer than you expect.

Sorry for muy poor English.

I send you a hug.

November 1, 2021

7 hours ago, belikeabamboo said:

Changing in intensity from time to time but not decreased constantly. When I started this journey I never thought this nightmare could last so lang but it can. But not for everyone, everyone is different, and my story does not mean that your story is the same. I think it is a very individual process, like we all individual human beings.

I having vivid dreams since 3 years ago and not subsided . Many people's vivid dreams dissaperae by 1 year But some of them said not dissaperad even after 2 years. I am so scared

November 1, 2021

@belikeabamboo I live in third world country. Do you see my signature ? I told them about vivid dreams but further they prescribed so many medicines and I come to take 8 different drugs . I got misdaigones and misdiagoned one after another. My body is completely deteorated seems like I might not live long ,

Psychiatric medicines are most dangerous drug in the world.

Have you not tried anything for your gut ? It might be some sorts of infection by bacteria or overproduction of ammonia something like that . YOu can also join reddit .

What do you mean by change in intensity ? they decrease or increase(vivid dreams ) ?

November 1, 2021

Hello almuPA,

thank you for your kind words. It is good to know that there are people who understand what this journey is about and what I am going through the last three years. I hope you are better than I am and you cane see more improvements than my very little baby steps. I try to see this as kind of spiritual journey, but it is incredible hard, suffering so intensely for such a long time. But I still hope in my deep heart that this is not the end of my story and I try not to give up.

13 hours ago, almuPA said:

That is a tricky question and maybe somebody more knowledgeable than me should asnwer It. You can find in this website a lot of different experiences (if you want I can share some links tomorrow), but the truth is, the final decition is yours to make.

If you could send me some interesting posts for this topic I would be very grateful. I hope I will get some more feedback from the moderators. But you are right, at the end it is my decision and every journey is different.

Send you hug, too. 😊

November 1, 2021

5 hours ago, PsychologicalSafe15 said:

Have you not tried anything for your gut ? It might be some sorts of infection by bacteria or overproduction of ammonia something like that . YOu can also join reddit .

No, the gut issues started when I stopped Escitalopram, so I trust that this is the problem and it will resolve itself in time.

5 hours ago, PsychologicalSafe15 said:

What do you mean by change in intensity ? they decrease or increase(vivid dreams ) ?

Both, sometimes they are more intense and vivid and sometimes less.

I think everybody around here is very scared but I try not to compare to other cases because I think every case and every journey is different.

I wish you that you see more improvements soon. 🙏

November 1, 2021

This is the main thread, where you can find the best information about reinstatement:

https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

I took the freedom to look for some personal stories of people who reinstated, so you can see what they went through. These are a small amount:

https://www.survivingantidepressants.org/topic/21728-lucidity-lexapro-off-but-reinstating/?tab=comments#comment-455724

https://www.survivingantidepressants.org/topic/21169-hopefloats-prozac-amino-acids-withdrawals-–-reinstating-prozac/?tab=comments#comment-441698

https://www.survivingantidepressants.org/topic/25519-seekinganswers-struggling-after-completed-tapering-off-celexa/?tab=comments#comment-558846

https://www.survivingantidepressants.org/topic/25184-kat66-should-i-reinstate-or-plough-on-drug-free/page/5/

November 1, 2021

@belikeabamboo Can you see my signatue I took all those for vivid dreams and semen leakage , THey are the withdrawl doctor instead of telling it takes lots of time they ******* prescribed , Now I have tons of side efects left in my body, what shall I do >? If withing 2 years they dont lessen I am gonna quit this world .

THis world is of lots of sinners , Noone cares. What they care is ******* money. These doctors I want to bomb these , How can

These legal drugs do such side effects >>?? they are not even banned >>>???? How did FDA signed it ??? Recent report showed they were payed by companies to sign.

November 1, 2021

7 hours ago, almuPA said:

I took the freedom to look for some personal stories of people who reinstated, so you can see what they went through. These are a small amount:

Thank you so much for the links, I will have a look at them. I hope it will help me a little bit to decide what to do. 🙏

Did you reinstate? You are also a hero, being off Citalopram since last april. How are you doing? Do you still have symptoms? I really hope that you are better than me and that you can live a normal everyday life. 🙏

November 7, 2021

@belikeabambooplease keep me updated on what you decide about a reinstatement and how it goes.

my story is similar but more complicated than yours. I did several on/offs of escitalopram all very rapid tapers. On top of that I tapered a benzo after the last rapid taper. I had no idea that coming off the escitalopram could be causing the symptoms I associated with the benzo.
almost 25 months off AD and 15 months off benzo and still am basically disabled.

November 22, 2021

@JustBella I will write it down here if I decide to reinstate. I hope you will see improvements very soon. 🙏

November 22, 2021

On 10/28/2021 at 3:58 PM, belikeabamboo said:

Do you know people who reinstated a small dose after such a long time and were successful?

Hey @getofflex , perhaps you didn't answer because I forgot to put the @ with your name in. Now I found out how it works and I <bhope you can share your experience about reinstatement after such a long time with me. Although I feel very bad, on some days horrible, I still can't imagine to reinstate, even a tiny small dose. On some days when it is just torture I see no other option than going back on med but this is more sign of my desperation than a concrete plan. My neryous system is unbelievable sensitive to everything and I am very scared that a reinstatement will make things worse and the taper process will be again torture. The fact that I am off Escitalopram and I "only" have to give my body the time to heal is an important aspect that keeps me motivated, focussed and hopeful that I can do it. I don't know if you can understand that.

I often ask myself which of the many symptoms I experience are the worst. I think all of them are very challenging but the two most debilitating symptoms, for me personally, are

1) the hypersensitivity to everything, especially to light, sound and movements, it feels as if my nervous system is not able to filter and process the sensory input, it feels as if everything is crashing down on me, and

2) the overexcitablity, it feels as if the inhibitory part of my nervous system is missing, on some days just putting on my clothes or walking overstimulate me.

Both symptoms put me in the fight and flight mode very easily, so that incredible intense anxiety/panic is with me almost all the time whren I try to be proactive and do some stuff like going out for a longer walk, going to the supermarket and so on. It feels like a very bad agoraphobia, that's why I try to expose myself again and again and I try to go through the anxiety/panic but the intensity is so extreme that it is very difficult to stand. I don't know if this is real agoraphobia or if it is due to the hypersensitivity and overexcitability of my nervous system. I don't know. Sometimes it feels as if long walks and exposure to sensory input are not making things better but worse.

@getofflexHave you heard of that due to wd? I always thought that exercise and exposure are very important to reduce anxiety/panic but perhaps there is a difference between anxiety/panic in wd and anxiety/panic in general.

I would be very thankful for feedbacks and experiences concerning my two most difficult symptoms hypersensitivity and overexcitability (Does anybody else experience them? Are they typical for SSRI-wd? Are there special coping techniques for these symptoms?) and the unbelievable intense anxiety/panic (Is this a common symptom in wd even more than 19 months off? Are exercise and exposure good or is it possible that they are bad for a sensitised nervous system?)

Thank you in advance for the feedbacks and experiences! 🙏

November 23, 2021

Hello @belikeabamboo,

I am so sorry to read that you are having a bad time. This experience is so changelling every step of the way. We really are survivors.

I know you are asking for the opinion of a mod, but I hope you dont mind that I reply to you.

About reinstatment, unfortunatelly you are only the one who can make a decision.

17 hours ago, belikeabamboo said:

Although I feel very bad, on some days horrible, I still can't imagine to reinstate, even a tiny small dose.

It looks to me(I may be wrong) that you feel like is better not to do It. I know the pressure and the confusion that is to feel so bad that you would do/give whatever just to feel a bit better, but yet reinstate may not be the asnwer. My advice is that with the information you have, go with your instinct.

17 hours ago, belikeabamboo said:

Sometimes it feels as if long walks and exposure to sensory input are not making things better but worse.

I have that too, and I know other people going through WD have had It too. It is important to take things slow, even if It is frustating.

I used to be a very active person before ADs, now a 20 minutes walk is torture (now is 20 minutes, last year It was 5).

I am working with the panic of going to públic places, too. What It has helped me is Claire Weekens book and her audios on YouTube. Also, I had CBT therapy for some months. It didnt help with the WD per se, as none of my therapists believed in such a thing 🙄 but I could benefit in identifying how my mind works in challenging situations.

This may sound silly, but I realized that when I sleep better and more, It helps. For that, I find baths with Epson salts, ASMR and Deep breathing benefitial. Also, big Big acceptance(easier said than done, I know).

Obviously, this is only my experience, what works for me may not work for other people.

This is a very hard and long road. Please dont lose hope.

I send you a hug.

November 23, 2021

Dear @almuPA,

oh no, I am very grateful for your answer and that you share you experiences with me. Thank you so much for that!!!

5 hours ago, almuPA said:

My advice is that with the information you have, go with your instinct.

My instict says "Do never ever put this poison in your body again" but my desperate soul often says "I want this to end, NOW!!!". I think you know this inner battles too.

5 hours ago, almuPA said:

I used to be a very active person before ADs, now a 20 minutes walk is torture (now is 20 minutes, last year It was 5).

Me too. Before my Escitalopram CT I was a very active and social person. I did jogging and hiking very intensely and loved to meet friends and family. No it seems as if I am a different person. Most of the time I feel very bad during and after my walks, meeting someone is just to much. This makes me very sad, I miss my old me. But I try to accept how it is because fighting it makes the suffering just worse. But sometimes this is easier to say than to do feeling often just horrible and seeing no significant and stable improvements after such a long time.

5 hours ago, almuPA said:

Also, I had CBT therapy for some months. It didnt help with the WD per se, as none of my therapists believed in such a thing 🙄 but I could benefit in identifying how my mind works in challenging situations.

At the beginning of my wd-journey I had CBT too but it was just too much to handle for me with a therapist who did not understand what I am going through. The things that help me most are things that calm down my nervous system: Yin Yoga, meditation, rest, taking a bath. I try to do that as much as possible, almost every day. It just helps when I am doing it, it does not have a long lasting effect, but it keeps me proactive and focussed.

5 hours ago, almuPA said:

This may sound silly, but I realized that when I sleep better and more, It helps.

Interesting. For me it is the other way around, I am often more symptomatic after a long and deep sleep. I sometimes think this journey has no rules and is completely individual.

Thank you again for your kind and honest feedback, I hope you are doing better than I do and you see some improvements.

I send you a hug back. 😊

November 23, 2021

Hello. Just dropping in to say you’re not alone. We are around the same age, and I am going through all the same symptoms. I had to quit my job, but I am starting a remote job on 12/6. I honestly don’t know how I am going to be able to tolerate it, but I’ll try my very best!

I am also struggling with extreme reactions to stimulation. If I try to get my heart rate via aerobic exercise up it sends me into extreme panic and bad insomnia. Public places are awful. I could barely look our plumber in the eyes today lol. I think our CNS is worn out and is perceiving everything as “danger.” The one thing I’ve found semi- helpful is an app called Curable. It is geared more towards people living with chronic pain, but I find it really applicable to our situations. It helps you dissociate from your symptoms using meditation, brain retraining, journaling, etc.

In any case, feel free to drop me a PM anytime 💗

December 10, 2021

Dear @anna7887,

thank you for your kind words. It is so good to know that I am not alone in this torture although it often feels like it. I had my second covid-vaccination on tuesday and reacted horribly on it. Was bedbound the last days. It seems as if my body reacts extremely to everything, this is so exhausting.

I hope you had a good start in you new job and it is managable for you, my deep respect, I still can't imagine to function on an everyday basis.

Do you know how I am getting feedback from one of the moderators here? Do I have to write to them directly?

Send you a hug full of energy and strength! 😊

December 11, 2021

@belikeabambooI was taking a break for several weeks when you tagged me back on November 22. We are unpaid volunteers dealing with our own withdrawal and life issues. Thanks for your patience.

On 11/22/2021 at 10:04 AM, belikeabamboo said:

Hey @getofflex , perhaps you didn't answer because I forgot to put the @ with your name in. Now I found out how it works and I <bhope you can share your experience about reinstatement after such a long time with me.

My reinstatements were after only having been off a few weeks. I have no experience with reinstating after being off as long as you have. The longer you wait, the less likely it is to work. However, as suggested before by me and another mod, you may consider trying a 0.25 mg reinstatement. It's for you to decide.

On 11/22/2021 at 10:04 AM, belikeabamboo said:

I see no other option than going back on med but this is more sign of my desperation than a concrete plan.

It is way less risky to try a tiny reinstatement, such as we suggested, than just going back on the drug.

On 11/22/2021 at 10:04 AM, belikeabamboo said:

The fact that I am off Escitalopram and I "only" have to give my body the time to heal is an important aspect that keeps me motivated, focussed and hopeful that I can do it. I don't know if you can understand that.

Yes, I do understand that, because even though I'm still on a tiny amount, I'm bound and determines that no matter what, I'm getting off of this drug. And I totally agree, the key to this is time and patience. What makes it so difficult, is it takes so long, and also getting hit with a wave can be very discouraging, and make it seem as though we are back to square one, although in actual fact, we are not back to square one, we are just in a wave, and our brain is doing what it needs to to heal.

On 11/22/2021 at 10:04 AM, belikeabamboo said:

@getofflexHave you heard of that due to wd? I always thought that exercise and exposure are very important to reduce anxiety/panic but perhaps there is a difference between anxiety/panic in wd and anxiety/panic in general.

On 11/22/2021 at 10:04 AM, belikeabamboo said:

incredible intense anxiety/panic is with me almost all the time whren I try to be proactive and do some stuff like going out for a longer walk, going to the supermarket and so on. It feels like a very bad agoraphobia, that's why I try to expose myself again and again and I try to go through the anxiety/panic but the intensity is so extreme that it is very difficult to stand.

Yes, the hypersensitivity and excitability are very common in WD. This is because as we are recovering from SSRI drugs, our nervous systems tend to be overly activated. I used to have this, and still do, but it is much less severe than it used to me. Perhaps you are pushing yourself too hard, and need to be gentler with yourself. Remember that these symptoms are caused by your nervous system being physically destabilized. It sounds like you may be applying psychotherapeutic principles for how many therapists help people overcome phobias. However, you are dealing with an actual physical condition of your brain. Forcing yourself to do things that make you highly anxious will cause your body to produce adrenaline, and this can cause a worsening of your anxiety, excitability, agitation, etc. Try to chill, take it easy, and rest more. Give yourself a break. Try some meditation, and some activities that are calming and soothing. Getting in nature is very healing and soothing for me, as are walking outside in the sunshine and fresh air.

Also, intense exercise tends to cause adrenaline production. I would suggest gentle easy going exercise such as walking.

Have you tried magnesium and omega 3 supplements? These can be helpful. The magnesium tends to be calming. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you.

Magnesium

Omega 3 Fish Oil

December 11, 2021

Here is how to do a search on this site. Try searching for things like anxiety, panic, excitability, etc. for more information. Do a search on "Claire Weekes". She has some great techniques for reducing anxiety.

How to Do a Site Search

December 29, 2021

@getofflexThank you for your response, I know that you are all doing this beside you own challenges, I am very grateful for that. 🙏

On 12/11/2021 at 6:30 PM, getofflex said:

erhaps you are pushing yourself too hard, and need to be gentler with yourself. Remember that these symptoms are caused by your nervous system being physically destabilized. It sounds like you may be applying psychotherapeutic principles for how many therapists help people overcome phobias. However, you are dealing with an actual physical condition of your brain. Forcing yourself to do things that make you highly anxious will cause your body to produce adrenaline, and this can cause a worsening of your anxiety, excitability, agitation, etc.

You are probably right, it feels as if exposure - like I learned in my CBT - does not make me feel better and more stable but worse and very agitated/overstimulated. I think after almost 21 months off and still feeling so symptomatic, not able to function in my job, my relationships, everyday stuff, it feels that this is forever and that I have to do more to get better. That's why I try to force myself to do things that are often to much for my nervous system, I think I try to get back control about my life. But obviously it does not work like this. 😪 My husband also looses more and more hope and starts to put pressure on me to try different therapies because there is still no signifikant and stable improvement. Trying different therapies means a lot of stress for me as I am often very symptomatic and overstimulated but it is difficult for him to understand that. He thinks I am not proactive enough, he thinks I am too passive and if he were me he would try every single form of therapy to get better. For me it feels it is the best way to let my nervous system settle down as much as possible and do what it needs to do without intervention, my focus is on acceptance, patience, meditation, yoga, walks in nature, resting a lot. In his opinion this is not enough to get better. I understand his exhaustion with this situation but it makes it very difficult for me because what I am doing the last about 3 years is all I can do with the energy and capacity I have.

@getofflex Two more questions: Do you know cases where the Covid-vaccination intensified symptoms? Since christmas (was a big challenge for me with much socialising) it feels as if I have problems with my eyes like I can't focus normally, they feel very sore, what makes reading very difficult. And it often feels as if my dizziness/vertigo comes from my eye movement as well. Have you heard of such eye issues as wd-symptoms?

I hope you had a nice christmas with loving people around you. 🙏

December 30, 2021

18 hours ago, belikeabamboo said:

That's why I try to force myself to do things that are often to much for my nervous system, I think I try to get back control about my life. But obviously it does not work like this. 😪

this is very true. Please read this post about letting go of control, it may help.

Let Go of Control

18 hours ago, belikeabamboo said:

Two more questions: Do you know cases where the Covid-vaccination intensified symptoms?

Yes, I've heard of this is some of our other members.

18 hours ago, belikeabamboo said:

it feels as if I have problems with my eyes like I can't focus normally, they feel very sore, what makes reading very difficult. And it often feels as if my dizziness/vertigo comes from my eye movement as well. Have you heard of such eye issues as wd-symptoms?

Yes, eye issues are common in WD. Please use the search on the site to research this yourself.

January 7, 2022

@getofflexThank you for your reply, I am very grateful for it. 🙏

At the moment I feel very bad, not functioning at all, mostly house- and bedbound. I am not sure but it feels as if this is the worst phase since I came off Escitalopram 21 months ago. I don't know what caused this intense setback, perhaps a combination of the stimulating affect of the second Covid-vaccine and the christmas days which were very challenging for me with family around and communicating and socialising over several hours in a row. I don't know, I am scared, desperate and exhausted and I don't know how to go on at the moment. I have so many physical and mental symptoms but the worst a extreme dizziness/vertigo that has probably to do with my eye movement, extreme sensitivity to light, sound, movement (going out just to the supermarket is to much, it feels as if everything is crashing down on me, unbearable dp/dr anxiety and dizziness/vertigo arise), paranoia/social anxiety (often can't look people in the eyes although they are obviously friendly, anxious of everything and everyone), overexcitability (smallest stimuli like getting on my clothes send me into agitation/fight-flight-mode) and autonomic dysregulation (especially fast and irregular heart beat, gastrointestinal issues, hot flashes, temperature regulation problems). A phone call, the computer screen or even reading stimulate to much, so most of the time all I can do is resting and doing breathing exercises. Eating is very difficult, my stomach is so crampy that it is difficult to get the food down and I get dizziness and nausea during eating very easily. This is torture. I don't how it could become so much worse after so many months off. I am scared that I developed a complexe anxiety disorder or ptsd and this is not wd any more. I would be very grateful for some feedback or advices what I could do to cope and become better especially concerning the extreme anxiety in public/social situations (nothing I ever felt before coming off Escitalopram). As often as I can I try breathing exercises, meditation, Yin Yoga, walking, positive selftalk/affirmations, healthy distractions, taking a bath. I eat very healthily, no coffein, no alcohol. All this helps to feel better when I am doing it but does not improve the symptoms I mentioned above long lasting. I feel so helpless and desperate.

I would be very very grateful for some support and advice. 🙏

January 7, 2022

Hello, @belikeabamboo,

I am sorry to read that you are having a bad time.

On 12/29/2021 at 8:09 PM, belikeabamboo said:

Do you know cases where the Covid-vaccination intensified symptoms?

I am not a mod, but I have read many posts on here saying exactly that. I had my worst wave after my first vaccine. I really thought I was going to die. It took me a couple of months to feel better, BUT after that I had a very good window. Of course, we cannot compare any WD cases, but who knows, maybe your next window is closer than you think.

On 12/29/2021 at 8:09 PM, belikeabamboo said:

My husband also looses more and more hope and starts to put pressure on me to try different therapies because there is still no signifikant and stable improvement.

I am sorry to read that. It has to be very hard for our loved ones to live this whole situation from the outside, not really understanding what we are going through. However, you need to put yourself your own limits. I know It's tough and we can get a bit impatient, wanting to do more and more and wanting to have our lifes back and not wanting to dissapoint those around us. But the thing is, we like It or not, our bodies need time to heal.

I've read that you are having a healthy diet, that I think is very important. But, have you tried a low histamine diet? It is no magic cure, but It helped(and still helps) me to feel a bit better. Again, I am not a mod, so please take my suggestions only as that, and do research for any change.

I send you a big hug.

January 7, 2022

5 hours ago, belikeabamboo said:

I don't know what caused this intense setback, perhaps a combination of the stimulating affect of the second Covid-vaccine and the christmas days which were very challenging for me with family around and communicating and socialising over several hours in a row.

I would venture a guess that these factors above probably have something to do with your current wave. There are others on this forum who have also had worse withdrawal symptoms after their COVID vaccines. From what you describe, it sounds as if your nervous system is destabilized at this time. How were you feeling before Christmas, and before the COVID vaccine? Have you felt any improvement at all since you got off Lexapro in April 2020, but before these 2 factors?

6 hours ago, belikeabamboo said:

This is torture. I don't how it could become so much worse after so many months off

Unfortunately, it often takes years to recover from things like this. Please see this link:

How Long is Withdrawal Going to Take

6 hours ago, belikeabamboo said:

As often as I can I try breathing exercises, meditation, Yin Yoga, walking, positive selftalk/affirmations, healthy distractions, taking a bath. I eat very healthily, no coffein, no alcohol. All this helps to feel better when I am doing it but does not improve the symptoms I mentioned above long lasting. I feel so helpless and desperate.

The coping techniques won't improve the symptoms, but they will help you to cope with them better. I'm very sorry you are going through all of this. I believe that if you are extra gentle with yourself while you are going through this, your nervous system will settle down and things will gradually improve. The good news is, that eventually this withdrawal situation gets better, but it takes a quite a lot of time, and there are setbacks (windows and waves).

One suggestion I can offer, is to keep a daily journal of all your activities, your sleeping, eating, etc, and see if you an find anything that worsens your symptoms. I did this, and found that storms, MSG, and stress worsen my withdrawal symptoms. This can be very helpful. Hang in there, this is not forever, although I know it is very discouraging when we take a turn for the worse.

belikeabamboo: 18 months off Escitalopram, struggling badly, very desperate and full of doubts (trigger warning!)

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