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

[belikeabamboo]

Dear @almuPA@getofflex, thank you for your kind, honest and encouraging words, it means a lot to me. Family and friends often try to give advices like 'You could do this, you could do that' or say things like 'Oh yes, if I am stressed I am also very sensitive to light and sound'. I know they do their best and try to support me and I am very grateful for that but at the same time I feel not really understood, they don't know how awful I often feel, how huge the intensity of the symptoms is and that's why I often feel very alone although I have wonderful, caring and loving people around. Reading you posts, I feel that you really understand what it means to go through this torture every day and that I am not alone in this. Thank you for that, thank you from my deep heart! 🙏

 

On 1/7/2022 at 8:27 PM, almuPA said:

I've read that you are having a healthy diet, that I think is very important. But, have you tried a low histamine diet?

I was always a pretty healthy eater but during the last months I tried to improve it to another level. At the moment I eat in the first place hole food plant based, fish about once a week, meat every second week, almost no gluten, reduced sugar, no processed food, reduced take away (perhaps once every second week). As I eat very fresh food in the first place I think the histamine levels are not that high?! I don't drink alcohol and caffein at all and try to avoid old cheese. What kind of food did you reduce? I am sure too much histamine ist not good for me but it is very difficult for me to implement a VERY low histamine diet. But I am open to try more diet changes. Do you have any tips what I could try to change? 

 

On 1/7/2022 at 10:26 PM, getofflex said:

Have you felt any improvement at all since you got off Lexapro in April 2020, but before these 2 factors?  

I want to shout out 'NOOOO!!!!' because I feel so awful at the moment but if I look honestly and as objective as possible on the time since I came off in april 2020 and before this horrible setback there were some improvements. In the very acute phase after coming off I was mostly house- and even bedbound, even small walks were difficult to handle because of dizziness, exhaustion, agitation and anxiety. I was emotionally very instable. Later in the process there were days or even periods over several days where I could do more, I could do longer walks, do the household, drive short distances, could do telephone calls and did'nt have such intense mood swings/nervous breakdowns, my cognitive function was better so that I could do some stuff that needs concentration and on some days I even did'nt have to lay down in the afternoon. That does not mean that there were days where I felt good/without symptoms/like a normal human being but the symptoms were less intense and I felt more stable so that I could do a bit more. This could still change abruptly, during the day or from one day to the other with or without a trigger but the baseline improved somehow, veeeery slowly with many setbacks, but improved. 

 

On 1/7/2022 at 10:26 PM, getofflex said:

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.

I already identified some triggers (see my first post). Stress ist very bad for me and the problem is that almost everything, every smallest challenge stresses me. Before wd I could handle stress pretty well, in my studies and later in my job. But know it feels that I also lost my ability to handle stress in general. And, compared to the beginning of my wd-journey the stressors became more: I have no income at the moment, people around me become more and more impatient, exhausted and doubtful because there is no significant and stable improvement since I came off and my own mind****er (sorry for this but this is the only way to describe the repetetive, negative and catastrophising thoughts I have) becomes louder and louder telling me 'You will never get better', 'You are not doing enough to get better', 'It will take many more years to feels better' and stuff like that. All this contributes to higher stress level during the last months what I am sure is not good for my supersensitive nervous system. I try to work with my thoughts (observe them, try not to listen to them, replace them with positive affirmations) but it is very difficult to reduce the external stressors, they are there.

 

I hope you two have a much better time than I have and you see more stable improvements! 🙏 @almuPAHow are you 20-21 months off this poision? @getofflexI see that you are close to coming off Escitalopram, you can be very proud of yourself, of your strength, patience and courage to go through this challenging process!!!

 

Thanks again from my deep heart for your support! 🙏

[belikeabamboo]

@getofflex I have a slight deficiency of Vitamin B12. I think i am not resorbing it very well due to my gastronintestinal issues. From your experience, are there any factors I have to think about if I subsitute it subcutanous because of my supersensitive nervous system? I tried to find out about this issue by myself but the amount of information here is pretty overwhelming for me at the moment.

[almuPA]

Hello @belikeabamboo,

 

I started reading this post and then investigating online about histamine. In my case, I've noticed that the fact that histamine levels rise and fall along with estrogen is very true. About 10 days before my period I starts, my eyes are more watery, my nose stuffed and I sneeze a lot. And normally a couple of days before my ovulation.  I've followed a very strict low histamine for about 5 months last year. After that, as I went to my parents house and my mother was cooking, I avoided a lot of high histamine foods but not all of them, and I was more or less ok. Right now, I normally follow a low histamine diet(along with low sugar, low lactose, low gluten), but I am not so strict. 

In general, I follow the  SIGHI list:

https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

 

Also,  I started to look online for low histamine recipes for inspiration. But I would suggest not to get very obsessed with it. I am saying this because I was for a while, and then I found out that I was ok even if I ate in the evening a piece of cake somebody had cooked in the morning. 

 

21 hours ago, belikeabamboo said:

I have no income at the moment, people around me become more and more impatient, exhausted and doubtful because there is no significant and stable improvement since I came off and my own mind****er (sorry for this but this is the only way to describe the repetetive, negative and catastrophising thoughts I have) becomes louder and louder telling me 'You will never get better', 'You are not doing enough to get better', 'It will take many more years to feels better' and stuff like that. All this contributes to higher stress level during the last months what I am sure is not good for my supersensitive nervous system.

I am sorry to read this. We can be our own enemies, and as you said, sometimes people around us cant fully understand what we are going though adn without realising, they put pressure on us. One of the hardest things I found in WD is acceptance. I used to be someone who needed to act when I had a problem. And with WD I found out that I cant really do that much. Only what they tell us in this amazing website: eating healthy, avoid stress when possible and time (and omega3 and magnesium when tolerated). 

 

21 hours ago, belikeabamboo said:

How are you 20-21 months off this poision?

Well, I am not ok, but I dont think I am still at the worst of it. I am not going to lie, I still have very bad days, days where I really want to die (I am sorry if it sounds dramatic or if is triggering, I am trying to be honest). But in general, I cant deny I am much better than last year. I walk for half an hour almost every day and I can go to the supermarket without having a panic attack (with COVID I avoid public places in general, but I still try to go here and there from time to time). As you said, I sometimes put pressure on myself. The other day I was looking for part-time jobs and I started crying, because I saw a couple I know I am qualify for, but I know it would be still more stress than I can handle. 

 

I send you a big hug.

[thinkpink]

Hello @belikeabamboo I found your thread this evening and have just been reading through. Im really sorry for how you are feeling and for all that you are going through with this. However upsetting and confusing this process may be I hope you know you aren't on your own and that unfortunately there are many of us in a similar situation. There is lots you have written that I can relate too. I think its very difficult for our families and loved ones to understand withdrawal because it is such a strange and complex process and can cause so many distressing symptoms that its really hard for some people to believe that a prescribed medication could be causing this (especially if we stopped it along time ago). Like you I had lots of tests done, including diabetes, glandular fever, my hormones and heart checked and everything came back normal yet since stopping Seroxat over two years ago I have become more unwell and am unable to work. Unfortunately so many of these symptoms are invisible- it can be quite hard I think to describe to others just how distressing and unpleasant things like dizziness and tingling are because of course no one can see this and many doctors don't recognise withdrawal so its an uphill battle to find support and recognition. My withdrawal symptoms got much worse in year 2 off the drug and this made no sense to me as I was expecting it to improve but things suddenly got a lot worse and I felt more unwell. I became bed bound for a time, hit with terrible fatigue and on some occasions I couldn't even get to the supermarket to buy my food shopping. I have learnt a lot over the last 2 years about withdrawal and my understanding is that its an non linear process so there is no pattern to this, withdrawal symptoms can come and go sometimes without warning they intensify. Withdrawal can cause a long list of different symptoms, and often people get diagnosed with other things like fibromyalgia, chronic fatigue or functional neurological disorder after stopping meds. I actually have a diagnosis now of chronic fatigue although I have lots of other different symptoms which started soon after stopping Seroxat but doctors don't recognised protracted withdrawal so they say its chronic fatigue. 

 

I think a lot of this process is about letting time pass, keeping ourselves distracted, trying to reduce stress and looking after ourselves as best we can. I know how difficult this can be especially when you are really suffering but unfortunately I don't think there are any shortcuts with withdrawal, the body is working hard to heal and it does so in its own time. Are you familiar with Baylissa Frederick at all? Baylissa went through her own withdrawal and went on to write a book. I find her to be very hopeful and inspiring. She really understands withdrawal and the ways it effects people and her words are so encouraging. She has some good webinars on her website and her book 'Recovery and Renewal' is worth a look if you're able to read okay and don't find this too stimulating. Its not uncommon when reducing or stopping antidepressants to experience a hypersensitive nervous system. I think many people experience this and whilst there is no easy answer you have to try to be gentle with yourself and relax and rest as much as you can and give yourself time. I used to be fit and healthy and love walking. I can't do this now in the way I used too- I am able to go for a walk somedays but not very far. But for me personally I believe in doing what I can when I can so I see how Im feeling each day and if I can manage a short and gentle walk thats what I'll do but I don't force myself to go. if Im really not feeling well. If the body is telling us we need to rest I think its really important to listen to those cues. Im sorry for writing such a long comment but hope you are okay and just wanted to say that reading your list of symptoms I experience many of these too. We are all with you and all trying to get through this as best we can. I think withdrawal effects us all in different ways but time seems to be helpful for many people. Be gentle with yourself and try to find ways to help your body relax which it sounds like you are doing. Take care 🙂 

[PsychologicalSafe15]

did your vivid dreams vanish or dissapeare or subsided ??

[belikeabamboo]

Dear @almuPA,

 

thank you so much for the information about low histamine diet, I will try to do some more changes to reduce the histamine in my food more. But like you said I try not to become to strict because at the end I think nutrition is a very important part for the healing process but the most important healing factor is time. Feeling so horrible at the moment this is the last thing I want to hear but if I am honest to myself I think that's it.

 

On 1/11/2022 at 12:32 PM, almuPA said:

I used to be someone who needed to act when I had a problem.

I am the same. At the moment it is difficult for me because I am struggling so badly but on better days I try to find a sense in this nightmare. I don't know if this resonates with you but if I can find a sense in something it is much easier for me to accept it. Like I said, I also used to be a person who needed to react and needed to have control about things. This experience is about feeling helpless, having no control about anything. Perhaps this is what I have to learn now, letting go of any control, accepting pain and grief, not fighting it, being gentile and compassioned with myself and trusting in myself. I hope one day I will feel better and be closer to be my real me because of this experience.

 

On 1/11/2022 at 12:32 PM, almuPA said:

The other day I was looking for part-time jobs and I started crying, because I saw a couple I know I am qualify for, but I know it would be still more stress than I can handle. 

 

I think you have to give yourself more time, your body and mind will tell you when you are ready for going back to work. If you start to early it could be too much stress for you sensitive nervous system. I wish you from my deep heart that it won't take too much time for you. 🙏

 

Send you a big hug too. 😊

[belikeabamboo]

Dear @thinkpink,

 

thank you so so much for your beautiful and encouraging words. Your thoughts resonate extremely with me and I feel very much understood and embraced, thank you so much for that! 🙏

 

I am so so sorry that you go to a very similar process like mine, I know what it means to feel worse rather than better. At the moment it feels like the worst phase of my wd-journey so far and it is unbelievable difficult not loose hope. I wish you from my deep heart that you see stable improvements soon and you can turn the corner, back to life. 🙏

 

Oh yes, Baylissa and her wd-rescources helped me a lot, without her I don't think I would have come so far. Do you know her better? Write me me a pm if you like.

 

Thank you again for sharing your thoughts with me! 😊

[belikeabamboo]

Dear @PsychologicalSafe15,

 

like I wrote in my last posts my symptoms are through the roof at the moment, so vivid dreams as well. But please don't compare yourself with me, every case is different. I wish you stable improvements soon. 🙏

[PsychologicalSafe15]

Thank you. If you are suffering like that . That means on average we are all going to suffer like that . Isn't that true ? I am surprised if this medicine has such kinds of damage , why are they prescribed.

[Parisien]

I don't even pause the question of why they are prescribed anymore but you're right it should be banned given all the really serious effects they have on us.  Right now I wonder a lot if it's irreversible if it will pass one day.  Do any of you practice sports run?  before I was going to run 10km now I hesitate because if it messed up my brain maybe that by running I will not refocus the well-being that it will bring another time.  Because it increases serotonin levels like the treatment.  I'm really afraid of not going back to the way I was before

[Altostrata]

Hello, @belikeabambooReviewing your history, I see this:

 

On 10/16/2021 at 1:46 AM, belikeabamboo said:

- 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.

 

If you had asked here, we would have inquired what "I felt unwell all the time" meant.

 

After someone has suffered severe withdrawal syndrome a couple of times, and reinstated a low dose, it can take some months to stabilize. It's possible that 2.5mg was too high or too low a dose. Your symptoms of feeling "unwell" would have given us some indication of this.

 

There is no such thing as "tolerance" when you have reinstated because of withdrawal syndrome -- the term applies to a loss of antidepressant effect when someone is in maintenance treatment. In recommending reinstatement, the object is to reduce withdrawal rather than "therapeutic" treatment for "depression" or whatever.

 

I suspect this misunderstanding led you to taper off 2.5mg escitalopram too soon, and possibly too fast. If you felt worse and worse during your 10-week taper, that was probably additional withdrawal symptoms.

 

Rather than "relapse" of a psychiatric disorder, your current symptoms sound like protracted withdrawal syndrome, possibly exacerbated by an adverse reaction to the vaccine or other treatment, or a covid infection itself. Have you had any antibiotic treatment or drunk any alcohol?

 

It is possible that reinstatement might work for you now. Citalopram is escitalopram's chemical sibling and gentler than escitalopram. You might try an initial 0.5mg in liquid form to see if it helps. If so, you'd stabilize for some months and taper off slowly by tiny amounts later.

 

PS It's interesting that a German psychiatrist suggested a reinstatement of 2.5mg escitalopram. To my knowledge, this site and this paper is the only source for very low-dose reinstatement after withdrawal: 

Framer, A. (2021). What I have learnt from helping thousands of people to taper off antidepressants and other psychotropic medications. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125321991274

[belikeabamboo]

Dear @Altostrata, thank you for your feedback on my case, I am very grateful for it. 🙏

 

On 1/23/2022 at 8:33 PM, Altostrata said:

If you had asked here, we would have inquired what "I felt unwell all the time" meant.

"Unwell" meant I had all the symptoms I mentioned in my list of symptoms but less intense. Anyway, I barely functioned and working part time was always a fight.

 

On 1/23/2022 at 8:33 PM, Altostrata said:

There is no such thing as "tolerance" when you have reinstated because of withdrawal syndrome -- the term applies to a loss of antidepressant effect when someone is in maintenance treatment. In recommending reinstatement, the object is to reduce withdrawal rather than "therapeutic" treatment for "depression" or whatever.

With "intolerance" I meant that I was afraid that I had an adverse reaction to the 2.5mg Escitalopram after going off and on, up and down so many times. I was afraid that an adverse reaction - more than withdrawal - caused the bad symptoms and that's why I decided by myself to taper this 2.5mg, hoping that I would feel better after being off completely. Sadly, this was not the case. 😪

 

On 1/23/2022 at 8:33 PM, Altostrata said:

Rather than "relapse" of a psychiatric disorder, your current symptoms sound like protracted withdrawal syndrome, possibly exacerbated by an adverse reaction to the vaccine or other treatment, or a covid infection itself. Have you had any antibiotic treatment or drunk any alcohol?

I tried to avoid any treatment, I just took the covid-vaccine because I thought the infection would be worse than the vaccine. I avoid caffein and alcohol but sometimes drink a decaffeinated coffee or a non-alcoholic beer. Do you think this could be a problem?

 

On 1/23/2022 at 8:33 PM, Altostrata said:

It is possible that reinstatement might work for you now. Citalopram is escitalopram's chemical sibling and gentler than escitalopram. You might try an initial 0.5mg in liquid form to see if it helps. If so, you'd stabilize for some months and taper off slowly by tiny amounts later.

I am very scared of reinstatement because I don't know if it will make my situation better, worse or if it will stay the same. To put the medication in my body again that made me so sick is very difficult to imagine for me. Have you seen cases where reinstatement worked after such a long time off the medication and with such a dysregulated and sensitive nervous system? Do you think I will heal without reinstatement? I know that it is discussed here one the side if the damage of the nervous system is persistent or permanent. I could only go through this until now by believing that the damage is persistent and it takes a very long time to recover but it is not permament. What is your opinion about that? Is there anything I can do to accelerate the healing process despite reinstatement?

 

On 1/23/2022 at 8:33 PM, Altostrata said:

It's interesting that a German psychiatrist suggested a reinstatement of 2.5mg escitalopram. To my knowledge, this site and this paper is the only source for very low-dose reinstatement after withdrawal: 

The psychiatrist I found is one of two I found in Germany who spoke out about long-lasting and debilitating wd-symptoms. He is a really good person and supported me a lot during the last 2,5 years. Another psychiatrist had recommanded to go up to 15mg Escitalopram again by going up 1mg every other day. I couldn't do that because the symptoms became unbearable so I stopped at 6mg. The psychiatrist I found, who is aware of wd suggested that a lower dose could help to reduce the wd-symptoms, so first I went down to 3mg, then to 2mg because I didnI't feel any better on 3mg.  By his advice I then started to take an additional 0.5mg in the evening because he thought the evening dose could reduce the extreme symptoms (sweating, heart racing, crampy stomach, muscle ache, anxiety) in the morning. But it didn't help during the 6 months I took the 2.5mg like this. Like you said, perhaps the 2.5mg were too much. 😔

 

Thank you again for you feedback!!! 😊🙏

[Altostrata]

12 hours ago, belikeabamboo said:

Have you seen cases where reinstatement worked after such a long time off the medication and with such a dysregulated and sensitive nervous system?

 

The reason we suggest it is because we often see it works.

 

It's up to you whether you want to continue to cope with withdrawal syndrome or possibly alleviate the symptoms with low-dose reinstatement. 

[belikeabamboo]

Dear @Altostrata,

 

I know it is my responsibility to decide, but it is a very difficult decision to make being off this poision for such a long time.

 

Are there any other things I can do to accelerate the healing process?

 

From your point of view, is the damage caused bei coming off much too fast persistent and we heal from it (with or without reinstatement) or is it in some cases permanent? I saw some posts here that the damage could be permanent and this scares me a lot.

[Altostrata]

It can take a very long time to very slowly recover from protracted withdrawal. Not having followed anyone into death from old age, I cannot say whether it might be permanent. You might be interested in Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

 

Many people find fish oil and magnesium supplements helpful, see

 

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

 

 

[belikeabamboo]

Dear @Altostrata,

 

thank you for your feedback and the link of the paper about pws.

 

I started substitution of vitamin b12 due to a light deficiency, so I will wait before trying fish oil and/or magnesium.

 

This week I spoke to another psychiatrist from a big university psychiatric ward and he said in his opinion I have two options:

1) somatization disorder --> intense psychosomatic diagnostics and therapy

2) neurotransmitter inbalance, 'kindling' --> Mirtazapin or ECT or another substance like Ketamin

 

For me it is hard to believe that my complex and severe symptoms which started during my fast taper in 2019 (I never experienced most of them before taking Escitalopram) are 'just in my head'. His recommendations to rebalance my neurotransmitters scare me a lot. I am very confused now and don't know what is the best to do. Do you know people who tried one of the 3 options he mentioned to rebalance the neurotransmitters? What do you think about these options?

 

At the moment my symptoms are extreme intense and cycle very fast between days or sometimes within a day. Is this possible in pws? One symptom that already know which was coming and going is know persistend and extrem intense. Tension/Cramping/nerve pain in my neck and both shoulders. Is it a typical wd-symptom and is it possible that a symptom intensifies so long off Escitalopram?

 

I try to hold on and find the right way to survive this, I hope I will make the right decision.

 

Thank you from my deep heart for your support, it means so much to me. 🙏

[Altostrata]

4 hours ago, belikeabamboo said:

This week I spoke to another psychiatrist from a big university psychiatric ward and he said in his opinion I have two options:

1) somatization disorder --> intense psychosomatic diagnostics and therapy

2) neurotransmitter inbalance, 'kindling' --> Mirtazapin or ECT or another substance like Ketamin

 

 

Very few psychiatrists, even big university professors, know anything about psychiatric drug withdrawal symptoms. His response was utterly clueless.

 

What are your most frequent symptoms now? Have you tried acupuncture, physical therapy, stretching exercises, chiropractic, or massage for your back and shoulder pain? Is it worse in your mousing arm, by any chance?

 

It is typical for withdrawal symptoms to come in waves and change to other withdrawal symptoms. See 

What is withdrawal syndrome? 
 
The Windows and Waves Pattern of Stabilization

[belikeabamboo]

Dear @Altostrata,

 

thank you for your feedback!

 

13 hours ago, Altostrata said:

Very few psychiatrists, even big university professors, know anything about psychiatric drug withdrawal symptoms. His response was utterly clueless.

This is really unbelievable. I am a doctor myself and I always tried to explain the risks and benefits of any treatment or medical intervention as good as I could, so that the patients could decide if they want it or not. In my opinion, this is my duty as a doctor. When I started Escitalopram in 2016 I told the psychiatrist that I want to come off it as soon as possible after stabilizing but he didn't inform me about side effects, tolerance, wd. Nothing. Antidepressants are promoted as the harmless magic pills.

 

 

13 hours ago, Altostrata said:

What are your most frequent symptoms now?

I still have all the symptoms I listed in my first post but not all at the same time and in the same intensity.

At the moment the worst symptoms are:

 - autonomic dysregulation: stomach and gut issues (nausea!!, reflux, stomach cramps, abdominal tension, gut-hyperperistaltic, flatulence and many more), incontinence, 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 (back, neck, shoulders, arms, legs whole body)

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

- tingling paresthesia (left arm, legs, neck, head)

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

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

- dizziness, vertigo (depended from head position and eye movement)

- trouble focussing with my eyes

- vivid dreams, horrible nightmares, oversleeping

- restlessness, agitation

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

- 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

- trouble regulating stress (feel overwhelmed very quickly)

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

 

 

13 hours ago, Altostrata said:

Have you tried acupuncture, physical therapy, stretching exercises, chiropractic, or massage for your back and shoulder pain? Is it worse in your mousing arm, by any chance?

I try to do some walking, meditation and stretching exercises every day since I came off and my husband gives me a massage for my neck, shoulders and back several times a week. This week I had my first session with an osteopath as well. For me it feels that the pain is more a nerve than a muscle pain and that I sometimes have muscle cramps in my shoulders. The left shoulder and arm is worse than the right (my right arm is my mousing arm). In the left arm I have also a kind of cracking I didn't have before and intermittend tingling parästhesia. The left arm is my vaccination arm, I don't know if there could be a connection.

 

I will have a look at the links you sent me.

 

Thanks again for your support!!! 🙏

[Altostrata]

Yes, it is incredible that you will not get full information from a psychiatric prescriber.

 

What symptoms have gotten better over the last 6 months?

[belikeabamboo]

Dear @Altostrata,

 

5 hours ago, Altostrata said:

What symptoms have gotten better over the last 6 months?

This question is very difficult to answer because I have had so many fluctuations in the intensity and quality of my symptoms and so many setbacks since I came off completely 04/20. The symptoms are cycling, changing, coming and going. In my case, it is not that my symptoms are gradually improving. I also never had real 'windows' where I felt like my old me again but I had 'better days' where I could do a little bit more. What I would say is that despite intense fluctuations and setbacks my baseline somehow improved very very slowly and little. My tolerance level is a bit higher and I am a little more stable (although very very far away from being functional). I have less I would call them 'nervous breakdowns' where I am crying over hours, completely desperate and hopeless, which I had quite often. And I have less I would call them 'knock outs' with very intense flu like symptoms (extreme headache/toothache, cold/hot showers, full body muscleache, stomach cramps, extreme exhaustion, extreme sensitivity to sound and light) where I can't get out of bed for many hours or the whole day. I had them quite often as well. In general I would say, I have less days where I am completely bedbound, sometimes I even don't have to lay down several hours in the afternoon because of exhaustion, what I had to for a long time. And I would say in general I tolerate longer walks now. Extreme night sweats, headache/toothache and nerve pain in my ears are less frequent and intense at the moment. If you ask me about a symptom that is completely gone I would say it's the flickering lights.

 

I hope this helps you to get an idea of my situation and the progress I made.

 

Thank you for doing this, it is life saving for so many people. 🙏

[Altostrata]

You're welcome. 

 

A little improvement is a good sign. 

 

Many people find fish oil and magnesium supplements helpful, see

 

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

[belikeabamboo]

Dear @Altostrata,

 

thank you for your response. I will try fish oil and magnesium but will wait a little bit because I started vitamin b12 lately. Is it possible that vitamin b12 makes me more nervous and agitated? I take 750mcg at the moment.

 

If I listen to the psychiatric collegues I suffer from a mixture of agitated depression, anxiety disorder, ptsd and somatization disorder and need intense treatment/therapy. If this is right I won't get better with time passing. How do I know if it is indeed protracted withdrawal syndrome? Is it possible that I feel so bad this far off Escitalopram? Have you seen similar cases to mine?

 

Sorry for asking so much but I try to sort out what could be the right way for me. 

 

Thank you for your support. 🙏

[almuPA]

Hello, @belikeabamboo,

 

I have been reading your latest posts. You have been adviced by the best, so I don't really have something more important to say, but I just wanted to let you know that I am thinking of you and reading what you have to say. 

On 2/11/2022 at 1:16 PM, belikeabamboo said:

I have less days where I am completely bedbound, sometimes I even don't have to lay down several hours in the afternoon because of exhaustion, what I had to for a long time. And I would say in general I tolerate longer walks now. Extreme night sweats, headache/toothache and nerve pain in my ears are less frequent and intense at the moment. If you ask me about a symptom that is completely gone I would say it's the flickering lights.

 

That is great, an improvement is an improvement! I know that everything looks sooooo slow. Like, how much more time am I going to suffer from this? But the reality is that we are getting better. Slower than we would like, with down times that are difficult, but improving. 

 

I send you a hug. 

[Altostrata]

 

@belikeabamboo 

 

On 2/16/2022 at 3:00 AM, belikeabamboo said:

If I listen to the psychiatric collegues I suffer from a mixture of agitated depression, anxiety disorder, ptsd and somatization disorder and need intense treatment/therapy.

 

This site is full of people whose situations are similar to yours. See 

 

What is withdrawal syndrome?

 

Withdrawal or relapse? Or something else?

 

Papers on diagnosis of antidepressant withdrawal syndrome

 

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

Dysautonomia (autonomic dysregulation)

 

The Windows and Waves Pattern of Stabilization

 

Also see Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

 

which was based on data from this site. I am a co-author.

 

This site exists because most of your psychiatric colleagues are, tragically, unable to distinguish a drug adverse effect from "agitated depression, anxiety disorder, ptsd and somatization disorder". People often don't want to believe this is true. How did their treatment affect you so far? Are you better or worse than you were before you had psychiatric drug treatment?

 

The B vitamins may be activating for people who are sensitized. If you want to supplement vitamin B12, see 

 

 

The Symptoms and Self-Care forum contains informational topics on just about any supplement you can think of.

 

 

[Altostrata]

On 10/16/2021 at 1:46 AM, belikeabamboo said:

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.

 

This is a very typical experience of people who taper too fast and get withdrawal symptoms that their prescriber misdiagnoses as relapse. Sudden onset upon dosage reduction is a signifier of withdrawal effects. Nobody bounces into "relapse", that takes months.

 

Also typical is that reinstatement of the drug will reduce withdrawal symptoms. This is still a potential for you; since your nervous system may be sensitized by your prior adverse drug effects, we advise starting with a very low dose, perhaps 1mg escitalopram (or its milder sibling, citalopram), to see how it affects you. Many people find very low dose reinstatement to be sufficient. They stabilize and then taper off by minute amounts later.

[belikeabamboo]

Dear @Altostrata,

 

thank you for your response.

 

On 2/17/2022 at 8:39 PM, Altostrata said:

How did their treatment affect you so far? Are you better or worse than you were before you had psychiatric drug treatment?

Before the treatment I had stress- and anxiety issues but I could live a pretty fullfilling life anyway. Now I am a mess with anxiety much worse and tons of symptoms I never had before coming off the drug. If I could go back to before taking the drug I would be unbelievable grateful. 

 

At the moment I feel unbelievable bad again. I don't know why but I have very severe muscle and nerve pain, tinglings, headache, stomach issues, dizziness, anxiety, exhaustion and depression (could cry all the time). Is it possible that the focus of symptoms changes or even new symptoms arrive this far off? I never had nerve pain and tingling and depression to such a degree. Are there waves in waves (because I already felt very bad before this)? Is there always a reason for a wave? The only changes I made were going vegan and substitution of vitamin b12 and more intense exercises (longer walks, some more intense yoga asanas).

 

Is it possible that the reinstatement of a small dose of Escitalopram makes things worse not better? Have you seen that? How in detail does reinstatement work? I start with a small dose and wait and than go sowly up? How do I know if the dose I take is too small or too much?

 

Thank you for your support. 🙏

[Altostrata]

Nobody seems to like withdrawal syndrome.

 

Another reason we suggest very low dose reinstatement to start is to reduce risk of an adverse reaction. You may find you need to increase the dosage. It's a guess as to how much is required to stop withdrawal symptoms for any individual.

 

Please read 

About reinstating and stabilizing to reduce withdrawal symptoms 
 
The Windows and Waves Pattern of Stabilization

[Ariel]

Hello @belikeabamboo

 

I've been reading through your thread and my heart goes out to you in your suffering. While everyone has their own individual experience, I can certainly relate to your story. I, too, am in protracted withdrawal from escitalopram. I've experienced pretty much all of the symptoms you describe. This iatrogenic illness is brutal.

I'm so sorry you're going through this. It's awful and unfair. You are being so brave and it sounds like you're handling the situation with intelligence and wisdom. From my point of view you're doing a great job, it's hard work and you're doing it! That can sometimes be difficult to see from the inside, when our minds are spinning and all we can think about is, please something, someone, fix it. However, you are doing the noble, invaluable, essential work of carrying on, putting one foot in front of the other, and getting through moment by moment. That's gold!

 

Have you read the Tao of Brassmonkey, as well as his other posts and threads? You're probably already familiar, but just in case, I'm mentioning them here because they have helped me a lot, and I still revisit them from time to time. (Thank you so very much for your phenomenal contributions, @brassmonkey -- boundless gratitude to you!)

Recently I've been coming back to this particular post about WDnormal (part of the terrific larger multi-section essay). It's been a very long time since I experienced a true window, and while I do get waves I'm mostly slogging through WDnormal. I try to remember that my WDnormal baseline has definitely improved over the past years, and that's a good sign! It's just hard to feel glad about it sometimes, because it's so gradual, so subtle, and still so unsatisfactory -- but when I really look back, the recovery progress is undeniable. 

 

https://www.survivingantidepressants.org/topic/23081-are-we-there-yet-how-long-is-withdrawal-going-to-take/#comment-492501

 

I love this:

During that waiting time people may think that they're not doing anything and want to get on with it.  When in fact doing nothing is very proactive.

 

Hear, hear! Proud member of the Doing Nothing Club over here. 

Anyway, just wanted to say hello and send all my respect and support to you on your healing journey. You can do it, and you are doing it! I'll be thinking of you and sending good vibes. 

In solidarity --

A.

[belikeabamboo]

Today, I am exactly 2 years off Escitalopram. And I want to share my thoughts and feelings on this special day@Altostrata@getofflex you supported and helped me so much with your knowledge, @almuPA@anna7887@thinkpink@slowphie@QuartzK@Ariel you were open to share your experiences with me and supported me with words of encouragement and love and @all you other amazing heroes around here who fight through the challenge off wd. 

 

Today I feel deep sadness about the almost last 4 years of my life, about the missed chances and the losses and about the fact that I still suffer from intense symptoms this far off not knowing when I am able to go back to life. Someone pushed the ‘stop-button‘ for my life while everyone around goes on with his life, plans, dreams and visions and although I wish everyone the very best this is very painful and full of deep grief for me. There is also a lot of anxiety about the future ahead. But beside these pretty heavy and challenging feelings there are also grace and love for the loving people I still have around, hope and optimism because I see some small improvements and trust in my body and its ablity to heal and do unbelievable things. I know how difficult it is in wd to feel something positive but I try to cultivate and focuss the small glims of these feelings like a treasure because for me they are signs of healing and they are for what we are here for on earth. So today is another day of trying to find peace in the pain. I hope that all of you can find these glims in your days, even when they are small. I wish you that from my deep heart. And I hope that you all have people around who love you deeply where you can be you with all your suffering, sadness, pain and grief. I wish you that you all are loved just because you are who you are, with or without wd. I want to share a wonderful poem I found with you. I have to translate it from german but I hope its deep message fills your heart:

 

Show yourself

 

Show yourself to the world

in all colours

Show yourself in your drought

Show yourself to the world

completely weak and small

Show yourself otherwise you go mad

Show yourself big and strong and light

Show your anger and scream

Show the world your sadness

that is the only way to release it

Show all your shades, don‘t hide yourself

Live you whole being

so that you bring others truth and light

so that everyone can heal

Show yourself to the world

in all colours

Everything in you is ok

Show yourself to the world

as you are

And please show yourself to me.

 

 

 

 

[belikeabamboo]

7 minutes ago, belikeabamboo said:

But beside these pretty heavy and challenging feelings there are also grace

I meant gratitude, not grace 😅

[Ariel]

@belikeabamboo This is so beautiful, reading it brought tears to my eyes.

Congratulations on your 2-year anniversary! That's a big deal, it represents so much hard work. You've come so far, incl. the years of tapering when on your way to zero. You are a healing warrior. 

What you write about feeling deep sadness and grief resonates with me. I appreciate your honesty and courage in sharing openly about the complexity of your emotions going through this. It's brutal, and there are many tears to be shed. I believe it's important to feel the feelings that arise, even when they are painful. Sometimes it can be tempting to try to avoid feeling those emotions, sometimes even doing all the "right" coping strategies like gratitude lists can feel like toxic positivity, like a lie. I'm trying to learn how to not run away from painful feelings, while also not obsessing over them -- trying to learn balance. And your post is very inspiring to me, the way that you embrace both that which is heavy and that which is lighter. You are balancing the both-and, which is difficult to do. Surely this is a sign of profound, multisystem healing in process. 

Thank you also for sharing the wonderful poem. 

Congratulations again -- sending all my admiration and respect your way!

A.

[belikeabamboo]

54 minutes ago, belikeabamboo said:

the small glims of these feelings

I meant 'sparks of these feelings'.

[getofflex]

@belikeabamboothank you for your heartfelt, poignant post.  I can very much identify with the grieving of years lost to these soul numbing drugs.  The good thing is, the pain is not totally wasted.  Some of us have found that going through this pain gives us strong inner strength, and forces us to rely upon God and develop a spiritual life we may not otherwise have. Oftentimes pain will refine us spiritually and emotionally, as long as we don't fight against it and become bitter about it.  I agree with you about expressing the emotions, instead of just repressing them.  I believe that is much healthier.  

 

It time, you will gradually come to feel better and better, as long as you take good care of yourself, and avoid psych drugs and other mind altering substances.  Hang in there!  Do you ever read the success stories?  They are on the home page, about halfway down.  Check them out. 

[slowphie]

@belikeabambooyou are an incredibly strong, resilient, brilliant human who will heal and shine brightly once again. 
 

Thank you so much for sharing these words with us, and I’m so glad you’ve made it so far! May this next year bring you much more relief and obvious signs of healing. 
 

btw, I wanted to stop by and thank you for suggesting the doctor at Charité - I saw him yesterday and he agreed to continue seeing me until I taper Mirta to 0. If it wasn’t for you, I wouldn’t have found him, it was such a huge relief to finally have some validation from a doctor. Vielen Dank ❤️❤️

[Altostrata]

Is this a doctor in Berlin who will assist tapering? Please add to our Recommended doctors, therapists, and clinics

[almuPA]

Dear @belikeabamboo,

 

What a beautiful post. Congrats on the 2 years off! Thats a great achievement. 

 

You explain so well what we suffer on WD and what this experience means for all of us. 

On 4/8/2022 at 8:48 PM, belikeabamboo said:

hope and optimism because I see some small improvements and trust in my body and its ablity to heal and do unbelievable things

That is very positive. These are the things that we need to focus on and keep thinking: our bodies and minds will heal. 

 

I feel like our stories are so similar: we have a similar timeline (except that I never reainstated) and even the drug I took is like the "big sister" of yours. We are still fighting and still trying to find the meaning of all this experience and trying to learn from what life and the medical system threw at us. 

 

I send you a hug.