MirandaN: Severe Escitalopram withdrawal after too fast tapering, is reinstatement an option?

[MirandaN]

@AltostrataI will try switching to Citalopram today to see if it is milder for me with regard to side effects. And as you earlier suggested I will take a dose of 0.15 mg citalopram to see if I will tolerate it. Fingers crossed now...  

[CharlieBrown13]

Dear MirandaN,

 

even if I haven't written much in the last few days, I'm following your story very closely.  I often think of you and keep my fingers (very 😊) crossed that you can tolerate the citalopram and that it brings relief for you.  
 

Warm greetings 

 

Charlie

[MirandaN]

Thanks dear Charlie, it really means a lot to get your message! It is always so scary to see what happens when one tries a new drug. Take care over there! 

[CharlieBrown13]

Dear MirandaN,

I have read your whole story again, somehow it concerns me a lot.

First- I think you are really an incredibly brave woman, how you endure it all and fight your way through there, I take off my hat!  
You had Covid in December 2020, right?  And obviously not “the light version” when you were in the hospital?!  
And after that you were "hit" with various antidepressants and neuroleptics.  I read that you were examined by a Long Covid expert?  

But maybe you should take up the topic again.  You got all this medication on what was and is probably an already very irritated nervous system.  Brain fog,  dizziness and insomnia, for example, are also very common symptoms of Post / Long COVID, and overall it is still relatively unexplored.  Since both withdrawal symptoms and viral nerve damage are probably very similar, I could imagine that this is a mixed form for you and not all just withdrawal symptoms.

Here in Germany, for example, there is a hospital especially for long COVID patients.  Do you have something like that, where you could maybe go again for a few weeks and have another detailed neurological examination and maybe even be recommended therapies (no medication)?  
And discuss whether even tiny doses of AD are more likely to be harmful?  I also find the symptom with the changed color vision somehow noticeable ... Ultimately, one (withdrawal) as well as the other (Covid) revolves around a damaged nervous system. I know it's often difficult with costs and insurance and such, but it's your life!

As I read it, you are a young woman with a child and you still have a life ahead of you that should be beautiful too (and it will be!!!) 

I think of you and tonight, before sleeping, I'll include you in my night prayer (although I usually don't actually say night prayers) 😇

 

Warm greetings Charlie

[MirandaN]

Dear Charlie, you are really so kind and considerate! Thank you from my heart!

 

3 hours ago, CharlieBrown13 said:

You had Covid in December 2020, right?  And obviously not “the light version” when you were in the hospital?!  
And after that you were "hit" with various antidepressants and neuroleptics.  I read that you were examined by a Long Covid expert?  

Yes, this is correct. But already before covid-19 I was actually in a bad shape due to over-work and fatigue. Sadly, I over-worked because of covid-19 related issues at my job, very ironic. So the covid-19 infection really hit me at the worst time. And then the drugs... a huge mistake, but I cannot really blame myself now. At the time I did not know anything about these drugs and I believed the doctors instead of listening to my body.  

 

3 hours ago, CharlieBrown13 said:

Here in Germany, for example, there is a hospital especially for long COVID patients.  Do you have something like that, where you could maybe go again for a few weeks and have another detailed neurological examination and maybe even be recommended therapies (no medication)?  

Unfortunately, we do not have that in Sweden. You cannot stay at the hospital due to post covid symptoms for further examinations (the hospitals are full as it is...). The Swedish covid-19 strategy has been a real disaster as you may have heard. So many people have died unnecessarily and so many people now have a variety of long covid-19 problems.

 

However, there are neurologists in Sweden that have taken an interest in post covid symptoms and do such examinations. In my case I doubt they will do any further examinations. Me and my husband fought very hard to have them examine me this spring (the resources in Swedish sick care are scarce). So they examined my lungs and made a thorough neurological examination (including brain scan). I now go to follow-up meetings with a neurologist once every 4 months. I see a physiotherapist once a month and I go to CBT once a week for my fatigue and stress problems (I am learning techniques for how to say "no" to too much workload and "no" in general when I feel something is not good for me etc.). Other than that no special therapy is available that we know of.  

 

3 hours ago, CharlieBrown13 said:

And discuss whether even tiny doses of AD are more likely to be harmful?

Yes, you are probably right, but I doubt any doctors here have experience in this area. But it is true that I have not tolerated any drugs that I have tried. I have never experienced any "beneficial effect" whatsoever, but instead lots of side effects. And now the reinstatement is not going well. 

 

I have actually started looking at alternatives - such as traditional Chinese medicine (acupuncture and herbs) and cranioscral therapy. During the past month I have tried acupuncture twice and it has alleviated some of the pain. So that is perhaps a way forward. Also, I feel that my qigong practice and meditation has helped somewhat. I have also changed my diet (no sugar, caffeine, gluten, lactose), since I noticed these things made my symptoms worse. I may make futher diet changes to see if it helps. I was actually intrigued when you mentioned you practise "biofeedback". I had to google it, because I had not heard of it before. It sounds really interesting! Does it help?

 

3 hours ago, CharlieBrown13 said:

As I read it, you are a young woman with a child and you still have a life ahead of you that should be beautiful too (and it will be!!!) 

I think of you and tonight, before sleeping, I'll include you in my night prayer (although I usually don't actually say night prayers)

Yes! We all have a life ahead of us, all of us do! We just need to pull through this horrible experience! 

 

Thanks for thinking of me. I can really feel your kind thoughts flying to me from far away, giving me hope! Sleep well, dear Charlie, and I hope you will have a good night and feel better soon! 

 

[CharlieBrown13]

Dear Miranda, 

17 minutes ago, MirandaN said:

And then the drugs... a huge mistake, but I cannot really blame myself now. At the time I did not know anything about these drugs and I believed the doctors instead of listening to my body.  

You shouldn't blame yourself for it at all!! You trusted the doctors that they were doing the right thing (like I did). I am a doctor myself and yet my doctor never listened to me when i said that i could not tolerate the medication.

 

23 minutes ago, MirandaN said:

I now go to follow-up meetings with a neurologist once every 4 months. I see a physiotherapist once a month and I go to CBT once a week for my fatigue and stress problems (I am learning techniques for how to say "no" to too much workload and "no" in general when I feel something is not good for me etc.

That's definitely good!

 

25 minutes ago, MirandaN said:

4 hours ago, CharlieBrown13 said:

 

Yes, you are probably right, but I doubt any doctors here have experience in this area. But it is true that I have not tolerated any drugs that I have tried. I have never experienced any "beneficial effect" whatsoever, but instead lots of side effects. And now the reinstatement is not going well. 

From what I have read, even the very small dose seems to be not good for you and I doubt that it will be much different with citalopram.  
I, in any case, will never again take any serotonergic active ingredient (I had previously not tolerated serotonergically active non-antidepressants, e.g. tramadol), because this tiny amount of 0.5 mg ultimately triggered this entire process with acute toxicity.  

 

31 minutes ago, MirandaN said:

 

I have actually started looking at alternatives - such as traditional Chinese medicine (acupuncture and herbs) and cranioscral therapy. During the past month I have tried acupuncture twice and it has alleviated some of the pain. So that is perhaps a way forward. Also, I feel that my qigong practice and meditation has helped somewhat. I have also changed my diet (no sugar, caffeine, gluten, lactose), since I noticed these things made my symptoms worse. I may make futher diet changes to see if it helps. I was actually intrigued when you mentioned you practise "biofeedback". I had to google it, because I had not heard of it before. It sounds really interesting! Does it help?

I'm a fan of alternative medicine, I think you can achieve a lot with it in other ways than conventional medicin. Biofeedback is a technique that synchronizes breathing and heart rate in order to stimulate the vagus nerve and so calm the autonomic nervous system.  It was good for me.

 

And if it doesn't get any better in the next months, make an appointment, get on a plane, rent an Airbnb and come to Germany and get a second opinion from a Covid expert. Maybe also in connection with drug toxicity, withdrawal and side effects from ADs.

Or, perhaps, for example, a preliminary interview is also possible online, email the medical history beforehand and then a video consultation?!

In the clinic where I work, many patients have come from abroad for this and for therapies.  And I'm a big fan of second opinions.  Nobody will be able to pull all of your symptoms away at once, but sometimes a different perspective is not bad.  
If I should research there, let me know!

 

I will go to sleep now and hope that the coming morning will not be as bad as the last one ... 😬

 

All the best 💕

 

Charlie

 

 

 

 

 

 

 

 

[MirandaN]

@AltostrataAnd I had an adverse reaction to Citalopram... I experienced several "attacks" with severe swollenness in nose, throat and chest, which constricted breathing. It felt as if I had to really push my abdominal muscles to make breathing continue. This happened both in the evening and early this morning when I was in bed. This was not just "normal congestion" but much, much worse. I recall having the same sensation when trying Sertraline earlier this year (every day during the weeks I tried that drug, it never went away). It feels as if all air is suddenly sucked out of your lungs and the chest muscles are barely moving. 

 

So I will now go back on escitalopram again (which is also bad for me).

 

I am seriously beginning to think that I will rather have all the withdrawal symptoms such as muscles pain, more brain fog, electricity through my body etc. rather than having all these breathing, ear and sinus problems. After all, proper breathing is a very vital part of healing. 

 

[MirandaN]

Dear Charlie, 

 

12 hours ago, CharlieBrown13 said:

You shouldn't blame yourself for it at all!! You trusted the doctors that they were doing the right thing (like I did). I am a doctor myself and yet my doctor never listened to me when i said that i could not tolerate the medication.

 

Thank you. I really helps to hear this, especially from you.

 

12 hours ago, CharlieBrown13 said:

From what I have read, even the very small dose seems to be not good for you and I doubt that it will be much different with citalopram.  
I, in any case, will never again take any serotonergic active ingredient (I had previously not tolerated serotonergically active non-antidepressants, e.g. tramadol), because this tiny amount of 0.5 mg ultimately triggered this entire process with acute toxicity.  

And you were right. I had an adverse effect to Citalopram. Interesting that you mention Tramadol. I had no idea it was a serotonergic active ingredient (and I am not sure what it means either). I was actually prescribed Tramadol for my back pain last year, but I could only take it for two days because I felt sick after I took it and had to stop. So you think you want to go through withdrawal without reinstatement then?

 

12 hours ago, CharlieBrown13 said:

I'm a fan of alternative medicine, I think you can achieve a lot with it in other ways than conventional medicin. Biofeedback is a technique that synchronizes breathing and heart rate in order to stimulate the vagus nerve and so calm the autonomic nervous system.  It was good for me.

It really sounds interesting! Unfortunately, it seems there is no provider of biofeedback in my town. But I recall there are other ways of stimulating the vagus nerve, such as through slow, belly breathing with longer exhale than inhale. Maybe I should do that more often. Recently, I have found it difficult with breathing exercises due to my nose and sinus problems. 

 

12 hours ago, CharlieBrown13 said:

And if it doesn't get any better in the next months, make an appointment, get on a plane, rent an Airbnb and come to Germany and get a second opinion from a Covid expert. Maybe also in connection with drug toxicity, withdrawal and side effects from ADs.

Or, perhaps, for example, a preliminary interview is also possible online, email the medical history beforehand and then a video consultation?!

 

Don't you think the opinion will still be that "you will eventually heal, but it will take time and patience"? Sometimes I play with the thought that I should get myself to the Himalayas and spend a few years in a monastery while I slowly heal "the natural way"... 

 

12 hours ago, CharlieBrown13 said:

If I should research there, let me know!

 

Thank you, Charlie. I will let you know if, after another few months of nothing happening, I feel I want a second opinion from a covid expert.  

 

 

[CharlieBrown13]

59 minutes ago, MirandaN said:

nteresting that you mention Tramadol. I had no idea it was a serotonergic active ingredient (and I am not sure what it means either). I was actually prescribed Tramadol for my back pain last year, but I could only take it for two days because I felt sick after I took it and had to stop. So you think you want to go through withdrawal without reinstatement then?

Serotonergic agents are agents that increase the serotonin level (such as tramal, eg metoclopramide against nausea, triptans against migraines, etc..

All medication I don’t tolerate. Google that!  Perhaps that would be an indication that you do not tolerate it as well and that you are not doing yourself any good with the escitalopram ...

And yes, I think, I have to… we will see.

[Altostrata]

What time o'clock did you take citalopram, what dosage, and when did these symptoms occur?

[CharlieBrown13]

Hey, @MirandaN,

 

how are you doing?

I was just thinking about you, interestingly when I was feeding the squirrels and birds (I live near the hospital) 😊!

 

warm greetings 

Charlie

[MirandaN]

Hi @CharlieBrown13

I was thinking of you too! Things are pretty unchanged for me. I just went to see the doctor again for my ear and sinus problems. The doctor seemed very grateful for a health problem he knows something about (as compared to my "other problems"). I could see he really enjoyed explaining how sinus drainage works.

 

How are you doing? Sounds very relaxing to feed the birds and squirrels. We have plenty of squirrels in the forest near where I live. They love to tease our cat. 

 

Cheers, Miranda 

P.S. I sent you an email btw. 

[CharlieBrown13]

35 minutes ago, MirandaN said:

I just went to see the doctor again for my ear and sinus problems. The doctor seemed very grateful for a health problem he knows something about (as compared to my "other problems"). I could see he really enjoyed explaining how sinus drainage works.

😁maybe he needs some motivation too… Was there any way he could help you?

 

37 minutes ago, MirandaN said:

How are you doing? Sounds very relaxing to feed the birds and squirrels. We have plenty of squirrels in the forest near where I live. They love to tease our cat. 

Today not so good, not much feelings apart from that stupid fear in my stomach and thinking is bad. That’s one of the worst things.
I really love watching (and photographing) squirrels, they are so cute! I would love to see them with your cat 🐈‍⬛ 😊

I didn’t get an email, but I have to look again?! Where did you send it?

[MirandaN]

38 minutes ago, CharlieBrown13 said:

😁maybe he needs some motivation too… Was there any way he could help you?

 

Not more than last week, but he explained a bit more about the hydrocortisone drops and Nasonex as well as told me there are stronger medicines (i.e. Fenylpropanolamin) if the sinus problems continue. He urged me to continue with the daily neti pot cleansing. And he confirmed that they remitted me for computer tomography of the sinus area and that with the current shortage of resources in the Swedish health care system it will probably take a few months before it is time for that. Yes, I am glad my treatable conditions (hopefully!) could motivate him.

 

46 minutes ago, CharlieBrown13 said:

Today not so good, not much feelings apart from that stupid fear in my stomach and thinking is bad. That’s one of the worst things.

I am sure your feelings will come back! I remember how I felt after quitting Sertraline last winter - I felt completely without emotions, it was extremely scary. And I had that strong feeling of "not existing" when I looked at my hands. At that time I had no idea it was withdrawal. But the feelings came back, although it took a few months. 

 

56 minutes ago, CharlieBrown13 said:

I really love watching (and photographing) squirrels, they are so cute! I would love to see them with your cat 🐈‍⬛ 😊

 

Wow, it must be difficult to take photos of squirrels, they are so fast. And yes, very cute. Do you happen to like hedgehogs too? Hedgehogs are my absolute "favourites". 😊

 

58 minutes ago, CharlieBrown13 said:

I didn’t get an email, but I have to look again?! Where did you send it?

To the email address in your profile: 

jcjs@gmx.de

[CharlieBrown13]

20 minutes ago, MirandaN said:

Not more than last week, but he explained a bit more about the hydrocortisone drops and Nasonex as well as told me there are stronger medicines (i.e. Fenylpropanolamin) if the sinus problems continue. He urged me to continue with the daily neti pot cleansing. And he confirmed that they remitted me for computer tomography of the sinus area and that with the current shortage of resources in the Swedish health care system it will probably take a few months before it is time for that. Yes, I am glad my treatable conditions (hopefully!) could motivate him.

I really hope, that something of this helps, it sounds really very stressful!!
Wow, a few months…I didn’t know that the swedish health care system has such limitations.

In any case, you haven't lost your sense of humor, that’s very good 👍.

25 minutes ago, MirandaN said:

1 hour ago, CharlieBrown13 said:

 

I am sure your feelings will come back! I remember how I felt after quitting Sertraline last winter - I felt completely without emotions, it was extremely scary. And I had that strong feeling of "not existing" when I looked at my hands. At that time I had no idea it was withdrawal. But the feelings came back, although it took a few months. 

Thank you, I can really use every  encouragement right now, that is scary! 
 

29 minutes ago, MirandaN said:

Wow, it must be difficult to take photos of squirrels, they are so fast. And yes, very cute. Do you happen to like hedgehogs too? Hedgehogs are my absolute "favourites". 😊

Sometimes you catch them quite well.  I also love hedgehogs (actually all animals except for ticks and wasps), unfortunately I only very rarely see them here. I don't know if you're on Instagram, I have a lot of animal photos there , that’s my hobby

(ju.schroeder.13) 😊🐿🐦
 

34 minutes ago, MirandaN said:

To the email address in your profile

I found it, you were in the spam folder, wrote back to you 😊