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

[peaceandlove]

Hey how are you feeling? I hope your doing better 🙂

 

I have similar issues with reflex & bowl problems indigestion. I was wondering if those cleared up for you? Or do they go away completely & then come back again?

[Ariel]

@belikeabamboo

Just a note to say I'm thinking of you and sending healing vibes <3

[belikeabamboo]

Dear @peaceandlove Thank you for asking. Yes, I am back to my old baseline before Covid again. I am still very symptomatic but not as bad as during my Covid-infection. I still have intensive stomach and bowel problems, changing in intensity all the time (like most of the other symptoms). It is very similar to irritable bowel/stomach syndrome I think. I hope, this symptom will - like the others - improve with time. 🙏 I try to eat as fresh and healthy as possible and avoid sugar, histamine, convenience food, alcohol and caffeine. And I practice relaxation techniques as often as possible because in my case overstimulation/dysregulation of the autonomic nerve system is a main part of wd. I would go to a gastroenterologist once to make sure that everything is alright with you stomach and bowel and that it is indeed part of your adverse reaction. It is so crazy that you only took one pill and you have this reaction. I am so sorry. What are your main symptoms? I deeply hope that your symptoms improved already and will stop soon. 🙏

[belikeabamboo]

On 8/6/2022 at 8:22 AM, Ariel said:

Just a note to say I'm thinking of you and sending healing vibes ❤️

@Ariel Thank you from my deep heart for thinking of me. 🙏 This means a lot to me. After a few really horrible weeks with Covid and intensified wd-symptoms it feels as if I am back to my old baseline again, which means that I am still very symptomatic but not bedridden all the time.

 

I would like to share some thoughts with you and the community here and I would be very grateful if you (and perhaps others) would share your personal thoughts about this topic with me. All my symptoms are difficult to handle but the most difficult one is the extreme intense anxiety. I had anxiety issues before taking Escitalopram but what I experience now after the CT of Escitalopram is so much more intense, complex, generalized. It feels as if my brain reacts to input, stimulation, stress (also very small amounts of stress) with a maximum fight/flight/freeze-reaction. The anxiety is so intense that I almost can't breathe or speak and I get extreme dizziness and dp/dr with it. When I remember the anxiety before medication, it is a completely different level. In the past I did CBT and read different books about anxiety and how to handle it but when I get this intense surges of anxiety the only way to reduce it is to leave the trigger (sun/heat exposure, sensory input, speaking to someone). I learned 'normal' anxiety lasts for just an hour or so but my anxiety now gets triggered and triggered again if I don't leave the situation. Before medication I had some agoraphobia (nothing compared to the agoraphobia now) but now the anxiety is extremely generalized, I have also fear of heights (never had that before coming off Escitalopram) and an extreme social anxiety (I was a very open and social person before coming off Escitalopram, before and on the medication). It sometimes feels as if anxiety is the reaction to everything. I learned about the therapy of anxiety issues that most important is exposition and I force myself to do things with anxiety. But it feels that it does not depend on how much I expose myself if the anxiety is mild, intense ore unbearable, it feels as if it just depends on how the state of my brain is on the day and I have now influence on it. It feels as if the inhibiting part of my Amygdala is not working and as if it is a dysfunction like the dysfunction of my stomach/bowel for example. I don't know if that makes sense to you. I struggle a lot with this symptom, doubt myself a lot and often panic that it is not wd but a complex anxiety disorder. How do I know if it is wd-related or just me without the drug? Is there a chance that it becomes better with time? I would be very grateful if you could share you personal thoughts about this topic with me.

 

How are you at the moment? I see that you are an angel for so many people here, I hope that you feel supported and embraced, too. I send you a lot of positive energy and healing vibes. I deeply believe there is so much wonderful ahead for you! 🥰

[Believer]

Hi @belikeabamboo

3 hours ago, belikeabamboo said:

But it feels that it does not depend on how much I expose myself if the anxiety is mild, intense ore unbearable, it feels as if it just depends on how the state of my brain is on the day and I have now influence on it. It feels as if the inhibiting part of my Amygdala is not working and as if it is a dysfunction like the dysfunction of my stomach/bowel for example.

I relate to this, as well as fear of heights, which I never had before. I never had anxiety before taking sertraline, anxious or nervous moments (I.e. speaking in front of a room full of doctors as an admin assist ,haha, but with practice I overcame this) only since tapering have I experienced anxiety like this. I don’t believe this is me off the drug, or the “unmaking of a new disorder”, I believe this is me harmed by the drug. I don’t think I have developed agoraphobia, but being in crowds amplifies my symptoms due to the stimulation. I am per say not afraid of crowds, never have been, and I have never been one to avoid them. I used to enjoy large venue concerts, people watching, fairs… Now I can get overstimulated by conversing with a few people at the same time and don’t like the way it makes me feel or sucks all of my energy. Same with driving, I find it very stimulating, riding in the car on the highway is very difficult for me, the speed of everything, ugh… Never bothered by this before. 
 

When I expose myself to things that cause my system to be stressed, driving, going to the grocery store, etc., I do it on days when my symptoms are lower, and when I do, do these things, I find that they wipe me out. I believe this is all caused by a dysregulated CNS. I guess you could say it is me right now, but the cause of it I don’t believe is me or my thinking. Sometimes that makes it a little easier to accept, but it’s still hard. My world has become very small. 
 

I think your situation and everyone else on this forum is similar, why would so many people have the same struggles when discontinuing? Harm from the drug. In time, maybe a lot of time, I think things will improve. In the meantime, I would encourage you to not find fault with yourself. Be compassionate towards yourself and try (every minute if necessary) to accept whatever is happening and if you can, avoid things that ramp up your symptoms. 
 

I know it’s hard not being the active, competent, confident person you were before this happened, but she is still there.  There is hope that our brains/body will reestablish homeostasis with time and self care.
 

Blessings and prayers for healing to you.

 

Believer

[Ariel]

Hi @belikeabamboo

I'm sorry the Covid was so hard on you. Glad to hear you're feeling better from that, although I know it's no picnic coming out of viral illness only to be returned to WD and PAWS. 

 

On 8/23/2022 at 12:47 PM, belikeabamboo said:

I would like to share some thoughts with you and the community here and I would be very grateful if you (and perhaps others) would share your personal thoughts about this topic with me. All my symptoms are difficult to handle but the most difficult one is the extreme intense anxiety.

 

I hear you. Extreme intense anxiety is definitely one of the hardest parts of WD for me, too. 

Do you know the topic on neuro-emotions? 

Learning about the concept of neuro-emotions really helped me understand and accept what was going on with the severe fear, paranoia, and anxiety I was suddenly experiencing -- i.e. neuro-fear, neuro-paranoia, neuro-anxiety, etc.

It is very different from normal, everyday versions of emotion. 

 

On 8/23/2022 at 12:47 PM, belikeabamboo said:

In the past I did CBT and read different books about anxiety and how to handle it but when I get this intense surges of anxiety the only way to reduce it is to leave the trigger (sun/heat exposure, sensory input, speaking to someone). I learned 'normal' anxiety lasts for just an hour or so but my anxiety now gets triggered and triggered again if I don't leave the situation.

 

Yeah, CBT doesn't work for me with the neuro-emotions. Sometimes it even makes things worse, because I start to feel like I'm failing at CBT management. 

I can relate to what you're saying about needing to leave the situation. That's what I do, too, when it gets really bad. I have to just seek safety, and more often than not, that means solitude and quiet with no other people and no unwanted stimuli.

This is all normal WD stuff. 

 

On 8/23/2022 at 12:47 PM, belikeabamboo said:

I struggle a lot with this symptom, doubt myself a lot and often panic that it is not wd but a complex anxiety disorder. How do I know if it is wd-related or just me without the drug? Is there a chance that it becomes better with time? I would be very grateful if you could share you personal thoughts about this topic with me.

 

The neuro-panic is itself a WD symptom, and those insistent thoughts that tell us: You are no developing new problems and disorders and you are going crazy -- those thoughts are also a WD symptom. 

Bamboo, I believe with all my heart that what you describe are WD symptoms, they are not "you". There is a real you in there, underneath the WD noise on the surface. As you heal you will begin to feel more and more like yourself again. WD is temporary, it will pass. Yes, it gets better with time. Healing is happening all the time, even when we don't consciously feel it. 

 

Do you know this essay, What is happening in your brain?

I often revisit it when I'm feeling unpleasant symptoms and it calms me down to read about the many incredible things my brain and body are doing behind the scenes, around the clock, 24/7/365 working hard to heal -- even when I don't consciously feel it! 

 

I can also second what @Believer has shared. Beautifully put, Believer. 

WD may make our worlds feel very small while we're going through this, but it's temporary and it does get better. It's not anything inherently wrong with us, it's our brains' healing process that causes these illusions along the way. 

 

Our brains are trying to keep us safe, they are always doing their best, working hard to help us survive. In WD as we heal our brains are re-learning how to evaluate and process stimuli, it's like a long, slow process of re-calibration in order to be able to function properly without the drugs. In the meantime while we are in the process our brains perceive our vulnerability and over-correct on the side of fear, signaling us to prioritize safety above everything else. This is one way our brains try to keep us safe. Like a very eager, very devoted guard-dog that barks at everything and everyone in order to protect us! And this beloved dog needs to learn that not everyone and not everything is a threat. Until the dog learns this, though, there's certainly a lot of barking!

 

On 8/23/2022 at 12:47 PM, belikeabamboo said:

I send you a lot of positive energy and healing vibes. I deeply believe there is so much wonderful ahead for you! 🥰

 

Thank you so much, bamboo. I trust the same is true for you!

Healing is happening <3

In solidarity and support, sending healing vibes <3

[Ariel]

@belikeabamboo

 

SunnyRainyDays once wrote a great post on WD-related emotional/mental symptoms, incl. neuro-anxiety, neuro-fear, neuro-panic, etc. 

Sharing it here in case it's helpful to read. You are not alone <3

 

On 7/6/2022 at 12:05 AM, SunnyRainyDays said:

Normally reassuring and challenging the thoughts with solid proof and facts makes my anxiety go away, but not this one - withdrawal anxiety won’t go away no matter what I do - I just have to sit with it.

 

The neuro-anxiety puts me 24/7 in a flight-or-fight mode. My anxious brain now interprets every single thought and action as “danger”.

I daydream for one minute:

You must have maladaptive daydreaming.

My mind wanders for a few seconds while doing a hour long task:

You must have ADHD

I want to play a video game that has a few drops of blood:

Don’t play it, it will make you violent

I scratch my skin because it itches:

You might go ill and scratch your skin bloody to excess

And so on and on. There aren’t even the “what if you have …” questions that anxiety normally does, but it’s straight out “You (must) have …”

Today I was afraid to leave my house for no reason. The fears come and go as they wish, one day I’ll have them and on another I don’t.

The combination with other neuro emotions that appear from time to time like random hostility out of nowhere make it worse.

 

Weird though that it is afraid of every mental problem but anxiety disorders - if it would be then it would practically eliminate itself by avoiding worrying. But it’d rather be scared of daydreaming, logically. Why is it scared most of daydreaming??? Probably because it’s so common and human that it’s unavoidable, and anxiety hates unavoidable things…

 

I tried reassuring, showing proof that the thought is impossible and stupid, but no matter what I do it won’t even decrease a bit. (I researched the topics my mind is afraid of and it didn’t help - it’s like talking to a moron. It holds to its belief no matter what. I compared the “mental disorders” to myself and even though I fit none my anxiety still insists I probably have it. I even took the official test for Maladaptive daydreaming which you need a score of 40+ points to even be considered a MDer, my score was 17,5, not even the half of it, but my anxious mind doesn’t care and won’t shut up. Each time my mind wanders off my anxiety flares up. Same with every topic. Can’t concentrate once in a while? Danger, very, very bad.) Everything that I do is accompanied by extreme judgement from my anxious mind.

Pity my anxious brain doesn’t notice that most of the problems come from the anxiety itself.

 

All I can do for now is to ignore or distract myself and let it pass along with the withdrawal. Mostly it makes me avoid and not do the things that flare it up, this time facing fears is useless as it leaves me in even more distress.

Yup, withdrawal anxiety is something completely else than normal anxiety and now I know that.

 

[almuPA]

Hello, @belikeabamboo,

 

I am sorry to read that you had COVID. It really sucks. I hope you are feeling better and better as days go by. 

 

On 8/23/2022 at 12:47 PM, belikeabamboo said:

The anxiety is so intense that I almost can't breathe or speak and I get extreme dizziness and dp/dr with it. When I remember the anxiety before medication, it is a completely different level.

I was nodding my head while reading that. Yes, it is different. And I also agree  when you say that before drugs, just by removing yourself from the situation, it could make the anxiety go, or at least reduce it. But in WD... Well, different story. 

 

But I agree with Ariel and Believer. And I will share some words that dear Rosetta told me some time ago: when you think that this is the new you, that you will always be anxious and not able to control it or will always be bedridden, those are lies that the WD is telling you. It is WD itself playing with your brain. Don't believe it. You are making progress, so that is a proof that theres a way out of WD, that it is possible to go to the other side. Maybe it takes longer that we would like, but the little steps are there. Yes, I know it is easier said than done. When you are suffering so much it is quite hard to stay positive and not listen to the neuro-emotions. But try to remember the progress, the success stories. 

 

I send you a big hug.

[Believer]

How are you doing @belikeabamboo?

I hope you are seeing a reduction in your symptoms.

Hugs

Believer

[Greatful]

@belikeabamboo

You have b been on a long journey...My heart goes out to you.  Your courage is amazing.

Thank you for sharing your journey.  I bet this is so true for most of us,   I go back and forth with self doubt and then feeling that intuition somewhere deep inside....

 I had many days I wanted to give in these doubts and go back into the psychiatric system believing people who don't me that I am just mentally sick, at the moment I am close to that again but somehow there is something in me, a very last instance insight me that tells me "You are on the right way, it is not you, it is the Escitalopram that caused this nightmare and you just have to accept, wait, trust yourself and it will become better one day". This instance keeps me going. Perhaps this is the inner wisdom everybody has inside that knows what is best for you, that guides you towards health, towards happiness, towards peace. Perhaps this last instance is what other call intuition. 

 

I would like to share this with you about anxiety, I got it out of Baylissa's book Recovery and Renewal--

 "Chemical" feel. Many of the people I have supported say they can tell the difference and with withdrawal-related symptoms feel  "chemical" or organic caused by the imbalance created by the drug.  They describe the "chemical feel as more of a strange physical feeling which involves adrenaline rushes, shakiness, agitation, lethargy etc. accompanied by the most intense organic fear/anxiety or depression with no apparent link.  They usually describe it as being "off the charts" and nothing like they use to feel before withdrawal.

 

I recommend her book and her website  https://mccare.org/  She has a lot of helpful things on here.

https://mccare.org/relatives/  this link is for family, friends and caregivers

 

I would also like to share this with you--Maybe you can print it out to have on hand for encouragement 

 

 

When withdrawal anxiety is high and I am in 'fight' or 'flight 'or 'freeze' mode, it is difficult for me to be grounded and to

maintain perspective. I lose sight of the fact that this experience is temporary and that it is leading me to my long-

awaited recovery. I am consumed with what is happening and it can make me seem self-absorbed and uninterested in my loved ones. This is understandable, as I spend all my time and energy managing the bizarre symptoms, breathing through the pain,and holding on for dear life. I miss important moments in  the lives of those around me and I also overlook just how courageous and persevering I have been and continue to be. So today, I acknowledge my strength and I accept that while I may spend much of my time consumed with coping, this does not mean that I am self-centered or selfish. I am just hypervigilant in the context of being constantly aware of my symptoms, and of my environment, always looking for perceived threats. I know that I will revert to normal when this is over. am compassionate and gentle with myself, in the meantime, knowing that no matter how intense and overwhelming my symptoms are, I will cope well. I trust that eventually I will begin to notice improvements and when the timing is right for me, this challenge will end with my recovery.

 

 

Don't give up on your healing. I know it's difficult to remain hopeful because everyday you struggle with the torture of the intense and bizarre symptoms and it seems as if nothing is changing. So I am here to be the rational, "non-withdrawal" voice in your head and to remind you of the reality : that no matter how long it is taking, this challenge is temporary. One day you will wake up and something will be different. It will be more than a "window", it will be the long-awaited break, the last lap, the finishing line in view.

Then it will be over, and you will be able to navigate your way out from under the rubble, brush yourself off, pick up the pieces and get on with your life.

What awaits you on the other side is worth you holding on for. Nothing in life will ever again faze you. You will have a different perspective on life, and it won't take much to make you feel content. 

 

I also love the one that @Ariel sent you   What is happening in your brain?  I refer back to it  I printed it out to have on hand.  It might be something your husband would read.

 

Your courage and determination is a inspiration to me.

 Lonely at time because those around us don't understand,  but  are not alone when come on here to share...we are strangers walking this journey together, trying to hold each other up 🌞

[Escitalopram21]

On 8/23/2022 at 1:47 PM, belikeabamboo said:

Before medication I had some agoraphobia (nothing compared to the agoraphobia now) but now the anxiety is extremely generalized, I have also fear of heights (never had that before coming off Escitalopram) and an extreme social anxiety (I was a very open and social person before coming off Escitalopram, before and on the medication).

Wow thanks for this. It resonates with my experience! I am not sure if i was afraid of heights before because i wasnt exposed to heights much before going in Escitalopram as a 19 y old. But no i think i wasnt afraid of heights, but now they freak me out. I could barely visit a friend in her apartment because of the height. And agoraphobia is insane too. Thank you. This was something i had started to accept as a part of who i am but i Guess not since you have the same experience.

[belikeabamboo]

@Believer@Ariel@almuPA@Greatful,

 

thank you from my deep heart for your detailed and caring responses 🙏 and SORRY for my late response. The last weeks were extremely intense and wirting was often just too much. Much, no, almost everything you wrote resonates with me and touches my heart on a very deep level, thank you again for reaching out to me, it means a lot to me.

 

@BelieverWhat you wrote about anxiety could exactly be my words, almost a little bit scary, but it could mean that this generalised extreme anxiety is really a result of the damage of these drugs on our brains and not a mental disorder. It is very hard to believe in this anyway because, especially after such a long time (I am off Escitalopram for 2,5 years now), people around me believe that it is "all in my head" and has nothing to do with coming off Escitalopram.

 

What makes me very sad is the extreme social anxiety. In fact, I just can't handle social situations, talking to someone, especially to several people at the same time. It seems as if my brain interprets social situations as a thread and it reacts with fight/flight/freeze, dizziness and dp/dr. Most of the time the symptoms are so intense that I have to leave the social situation. This makes me very depressed because before going on Escitalopram and coming off it I was, despite my anxiety issues, a very open and social person, I enjoyed being around people, talking, having long and intense conversations, going to restaurants and parties together. I am very ashamed of this but I want to share it anyway, perhaps someone experiences the same and want to share it with me.

 

I started traumatherapy now to work with childhood trauma I have and the therapist believes that I have severe ptsd and anxiety disorder. When I remember how I felt before coming off Escitalopram I had some anxiety issues, yes, but NOTHING compared to what I experience since coming off. It all started suddenly while reducing Escitalopram so, deeply inside me, I believe that it still must be wd, but my therapist thinks it is all a result of suppressed emotions from my childhood. I don't know. At the moment I really don't know what to do or what to believe. The traumatherapy has changed nothing until now, I am still extremely symptomatic and I am not functioning at all, 2,5 years after coming off Escitalopram. I am so desperate, hopeless and exhausted at the moment. Are there people who still feel that bad after such a long time? It feels as if I am the only person in this situation still without evident improvement. I still suffer from all mental and physical symptoms I mentioned when I joined the website one year ago, changing in combination and intensity all the time without any rime or reason.

 

Thank you all for listening to me and that I can share my thoughts and feelings here. I deeply hope you feel better than I do, you experience stable improvements and see light at the end of the tunnel. I send a warm hug to all of you around here, struggling and trying to find your way through this. You are all amazing, strong and brave. I am thinking of all of you. Never give up. ❤️

 

 

[belikeabamboo]

On 9/22/2022 at 9:20 PM, Escitalopram21 said:

Wow thanks for this. It resonates with my experience! I am not sure if i was afraid of heights before because i wasnt exposed to heights much before going in Escitalopram as a 19 y old. But no i think i wasnt afraid of heights, but now they freak me out. I could barely visit a friend in her apartment because of the height. And agoraphobia is insane too. Thank you. This was something i had started to accept as a part of who i am but i Guess not since you have the same experience.

@Escitalopram21 I am so happy that my post resonated with you and helped you to feel a little less alone. This journey often feels very lonely and I know that it makes a huge difference to find someone who experiences the same. As you see in my last post I am struggling and doubting myself a lot, it helped me too to read that you experience similar anxiety issues and you were not like this before. Thank you from my deep heart for sharing your experience with me. 🙏 I hope you see some stabilisation and improvement in your tapering journey, you are right to go very slow and I am sure you  are doing an amazing job. Take care and never give up. You will make it.

[Sinanz]

Oh jeez same story me too i had to try clomipramine and after balance i will taper but this time iam aware , i really cant bare million of symptoms beacuse i abrupt all 7 pills and really near loosing my mind!! I wish you all heals and back to normal and old version of you i really missed my old version of me 😔

[Escitalopram21]

How are you doing? @belikeabamboo

[Akfodey7]

@belikeabamboo

 

i am so heartbroken to read this thread but I am also very relieved to have found someone who is going through literally the exact same thing as me. I thought I was the only one. I sent you a private message! 

[Foxclover6]

This is me. 

[angela9985]

I'm so sorry you are going through these. On the same boat. Dysfunctional. Do you go back to work? 

[Fosca]

Hi, it looks like you've been off Escitalopram for three years at this point.  Have you seen any improvements?  Have you tried any other treatments or meds?  Wishing you the best.

[andy96gr]

How are you doing now @belikeabamboo😊? Coming from a CT and in a bad place.

[Tigz91]

On 10/16/2021 at 9:46 AM, belikeabamboo said:

  

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. 🙏

 

 

 

 

How are you doing now?

[Tigz91]

On 11/21/2023 at 9:58 PM, andy96gr said:

How are you doing now @belikeabamboo😊? Coming from a CT and in a bad place.

How are you doing?

[andy96gr]

31 minutes ago, Tigz91 said:

How are you doing?

Not well @Tigz91,surviving .You?

[Tigz91]

16 minutes ago, andy96gr said:

Not well @Tigz91,surviving .You?

Sorry to hear that, I’m 12 months off and like you surviving and not living. I still have so many symptoms and struggling everyday.

[Ariel]

@belikeabamboo

Keeping you in heart and mind and wishing you well