success KarenRose: what a journey

[KarenRose]

 

Success story:  karenrose-i-successfully-came-off-after-years-of-trying

 

Hi everyone.
 
It is great to have a forum like this. I am so grateful to find qualified help.
 
I was given an antidepressant 13 years ago to help with a deep depression that no psychotherapy or alternative approach would help with. Paxil was a godsent at the time. However, with my first attempt to come off, I learned how destructive these drugs can be and had to go to Cymbalta, then Lexapro. I came off again, this time with aminoacids and was succesful for about 6 months. I got very depressed again and went back on Lexapro.
 
After several traumatic events I learned that I had Hashimoto's and finally understood how to treat this. My depression abated. Over the last two years I have tapered off Lexapro - very difficult, but succesful to the point that I am now on 1mg instead of 45. I am struggling with the last mg and have horrible symptoms when I try to go off. Looking in this forum to try to find ways to taper more slowly off 1mg.
 
Will elaborate on this later. This is my quick intro for now. Thank you so much for this life saving forum.

 

Edited July 8, 2020 by ChessieCat
added success story link

[scallywag]

KarenRose -- Welcome to Surviving Antidepressants (SA)
 
I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but am glad that you found us.
 
Thanks for posting. A request: Would you summarize your history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-18 months particularly?

• Any drugs prior to that can just be listed with start and stop years.
• You don't need to include symptoms or diagnoses other than the initial condition that led to prescribing the first drug.
• We ask for this information in your signature so that we can see it at a glance. A list is easier to understand than one or multiple paragraphs.
• You can find instructions in this topic: Please put your withdrawal history in signature

My "job" is to point you to information that you can use to safely taper off Lexapro. Here are some discussion topics that are relevant to your situation:
Why taper by 10% of my dosage?
Tips for tapering off Lexapro (escitalopram)

We suggest that people taper 10% from their current dose at the time and that people make dose reductions no more often than once per month. So for you the next few doses would be 0.9 mg, 0.81 mg, 0.73, 0.66 mg. To get these non-standard doses with Lexapro, you can either weigh the doses or make a liquid:
Using a digital scale to measure doses
Making a liquid from a tablet or capsules
Using an oral syringe and other tapering techniques

 

This is YOUR introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community. 

 

Please read the links above and feel free to ask questions about your situation here in your introduction topic.

[KarenRose]

I hope I understood correctly that this I where I ask questions and so on.

 

Am going through a hellish time having terrible anxiety, hopelessness and brain fog after a slow taper down to 1mg over almost two years, then came off three weeks ago and reinstated four days ago at 1mg (could not get a smaller dose at the time) due to suicidal thoughts and wanting to give up. I think this happened because I came off before fully stabilizing at both 2mg and 1mg. Got impatient and acted on it (prompted somewhat, I think, by my holistic psychiatrist who wants to shorten my exposure and teach me to be with the suffering) for the first time during the whole hard taper process.

 

I am still looking to do the last step and getting med free, but this time after I stabilize a lot more - even if I have to stay at 1mg for a while. To this end I am reading up on the info on how to get smaller dosages for microtaper.

 

I am having trouble getting help from the compounding pharmacies here in Europe, have written quite a few and am still hoping for a positive reply from some of them. As I understand it I can't use the pills I have as they are film-coated and have no beads.

 

Anyone have experience finding compounding help in Europe for tapers? Or other ideas for how to get a microtaper with coated pills and or liquid Lexapro. I am working my way through the links but think I have tried all of them.

 

Thank you - am a bit anxious to write here - I hope I am not breaking rules but just feeling deeply in need of help and encouragement.

 

Warmly, Karen

[scallywag]

This is exactly the right place for you to ask questions and to let us know how you are doing.

 

It can take several if not many weeks after reinstating to stabilize.  There will be many small, barely noticeable improvements until one day you notice that you are feeling significantly better. You may find the discussion topic at this link informative:

After Reinstating or Updosing, How long to stabilize?

 

Lexapro (escitalopram) is available in some countries as a liquid produced by the brand owner and by generic pharmaceutical manufacturers.  In the UK, liquid escitalopram is available and one of the generic manufacturers of it is Swedish, Lundbeck. You could call your pharmacy to ask if it's available for prescription in Denmark or search the website of the Danish drug regulatory agency. In the US it's the federal FDA (Food & Drug Administration). In Canada it's the national Department of Health which maintains an online health and drug products database.

 

Many people have tapered and are successfully tapering Lexapro by dissolving their tablets.  I have not seen information about a coating on Lexapro tablets. Who told you about a coating that makes cutting or dissolving the tablet a bad idea?

[KarenRose]

Scallywag, thank you so much!

 

This gives me some hope.

 

The coating on lexapro (generic) was just my assumption because it says on the box that the pills are coated with a "film" and are smooth and shiny.

 

And I guess I was foggy and unclear in my writing: I do have access to liquid Lexapro here in Denmark. I have just been afraid of diluting for making lower dosages because my psychiatrist says it does not dissolve evenly in water and therefore it is not safe to lower dosage in this way. This is in spite of the fact that it says on the bottle to take it in a glass of water or juice. Any thoughts on this?

 

I am guessing people in here have experience with diluting it and or using a tiny syringe to draw up smaller drops, from what I have been reading?

[scallywag]

About using liquid to dilute the commercial Lexapro liquid, ask a pharmacist where you pick up your prescriptions. She/he is far more knowledgeable about this than your psychiatrist. Even a pharmacist on their first day after graduating is likely to give you better information than any p-Doc.

 

About syringes: I posted a link about using a syringe to get small doses.

[LexAnger]

Hi KarenRose,

 

Just to say hi to welcome you to the forum!

Amazing accomplishment getting down from 45 mg to 1 mg in just 2 yrs!

 

I'm in a Simlar position at 1.2 mg Lexapro, big struggle with dilibarting symptoms physical and mental.

It will be nice we can keep each other company on the rest journey to be out of this hell.

 

Lex

[Skeeter]

KarenRose,

Am so glad you are here and are on the right track to finding a way to taper successfully.  I had never heard of a holistic p-doc before.  Very interesting.  You can look on the outside of the bottle of the liquid Lexapro to see if water is one of the ingredients.  If it is, you should be able to dilute small amounts at a time with water. GREAT point about the bottle saying to follow it with a glass of water or juice.  I hope you will wait until you are stable before you try to decrease anymore.

 

I would be interested to hear more about what your p-doc means by "to teach me to be with the suffering".  I am not being judgmental, I just honestly do not understand why one must be okay with suffering if that is what the doc means.  That is an awful lot to put off upon someone, IMHO.  Maybe this person has suffered through this exact withdrawal before, so they are coming from a place of intimate knowledge?  If not, I am not sure that I would be comfortable with that one part of it personally (but that is just my opinion), though if this person has been with you for the rest of the taper, that is great!  Is this an ND psychiatrist, or a MD psychiatrist, if I may ask?  Again, no judgement, just interested, not heard of it before this is all!

 

I really hope you will be feeling much better soon.  And as promised on your first day here, I am following your thread!!

Skeeter

[Happy2Heal]

hi KarenRose,
I am going thru something similar, tapering off lexapro, although I've screwed up several times before finding this forum and at least a couple of times since (slow learner I guess )

 

I am now on 1/5 of a mg of the liquid, divided into 2 doses, one in the am and one in the pm

 

I am looking to micro taper as well but am not sure it's ok to add water to the liquid lexapro.

 

I posted elsewhere what I read on the instructions that someone linked me to, it said not to add any other liquid besides the water, orange or apple juice that you take the lexapro with- so I'm confused (but that's not uncommon lol)

anyway welcome and congratulations on doing such a nice slow taper! that can't have been easy

[KarenRose]

Hi everyone, I have not been here for a while, was too anxious to read anything related to SSRIs. But so good to see your responses and happy we can support one another.

 

Catnapt, I agree it is confusing to find a way with the microtaper for Lex, my brain is too foggy to figure it out. I will just wait until I feel far better to even touch on the subject again. I wonder if powder and a microscale could help?  How are you getting your 1/5 of a mg of the liquid at this point? I hope we can support one another, thank you for your kind words. And you are right - the slow taper has been NO fun. But I guess worth it.

 

Skeeter, thank you for those tips. I think I will be able to use them when I feel better. I am not as unwell as when we first met on this thread, feeling less anxious and less depressed, but still unable to work and very dark. You picked up on MY judgment of my psychiatrist's opinion about  "staying wiht the suffering". She's been a great doctor (she is an MD with a strongly holistic philosophy) but for some reason she sees the coming off as a chance for transformation in a spiritual sense through suffering. While I can get that theoretically, I frankly find it irresponsible and unempathic. And I happen to know that she has not been through this. So I appreciate your support and am taking my own path from here, while I still will check in with her.

 

Lexanger, I feel for you (I feel for all of us) and I am impressed with your slow taper too. Not easy!

 

I hope we can talk more here about how to get tiny dosages to microtaper this horrid Lex and be free.

[KarenRose]

Hi everyone,

 

I am back here after enjoying 8 months of being OK with minimal symptoms. During this time I tapered all  the way down to 0,05 mg of Celexa and then tried to jump off - felt horrible and reinstated at the same amount after 3-4 days. I have been struggling intensely now for 2,5 months. The past few weeks I have been feeling a bit better, but then this morning made a stupid and very unsettling mistake: after painstakingly measuring out my 0,05 mg with a syringe, I took it but then by mistake gulped down the whole of the rest of the liquid, thinking it was just water (or, more precisely, not thinking at all). I've had bad anxiety and nausea all day.  This means I took a full 1 mg which is 20x more than I am used to at this point. Can this reaction really just be from taking a too high dose for one day? Has anyone had this experience. I truly, truly hope to be "back on schedule" tomorrow as I am at my wits end and so sick of struggling.

 

Thank you. Just had to ask, feel so alone in all this....

[baroquep]

Hi KarenRose, sounds like typical brain fog caused by withdrawal.  Don't fret too much, you should just go back to your regular dose and any symptoms caused by this one off up-dose should settle down within a couple of weeks.  Someone told me once, that when we focus on something it expands, so when I'm in distress, I try to remember this and divert my attention elsewhere.  I'm not always successful, but oftentimes it does help to try and take the focus off the anxiety.  Hang in there.  

Edited November 1, 2017 by baroquep

[Jake64]

Hi Karen, I have been on paxil for 17 years now and feel like if not working like it used to. my doctor wants me to switch to Lexapro. I am a little afraid of the paroxetine withdraws. was it a bad switchover for you?

[KarenRose]

Hello baroquep and Jake64

Thank you so much for responding. It is very soothing indeed to know that I am not alone. I think you are right Baroquep, that this will settle in a few weeks. I am already better (not well) but not fretting is a very good idea. I try to find ways to be present in my body instead of my head. I see that you are hypothyroid too and tapering slowly off SSRI, so we're in the same boat in a sense.

 

Jake, I hear you about the switchover. I believe I withdrew cold turkey as per my psychiatrist's sugggestion off the Paxil and then fell into bad WD, then took Cymbalta and THEN Lexapro. The last switch was not bad at all, but it is hard to say because I had such bad WD already. All I can say is that I would go slow and perhaps read up on Lex first.

 

All the best to you both.

 

Karen

[KarenRose]

Hi all,

 

I seem to be getting better at them emtional level. However, I am hit with infections again and again. Am in bed with a cold and cough that is very hard to get rid of. My work and finances are down to the bare minimum.

 

Has anyone else seen this as a symptom of WD? Frequent infections and suppressed immune system. I am worried.

 

Thank you, thank you!

[Happy2Heal]

when I did my first super deep cuts, and got down to  2.5mgs from 30 in less than 6 mos, I kept getting sick- I got the flu, then I got a different flu, then I got pneumonia , and then a post infection inflammation that needed steroids to knock out. I had a bad cough for a solid 4 mos.

 

Just skimming some of the other accounts on here,  it seems getting infections and being run down is fairly common.

 

it is concerning, of course. You wonder if you've got something else going on. 

But I've been fine physically since then, I've had the beginnings of a cold a couple of times but my immune system must be really strong now, because I've knocked those down without ever getting sick.

 

I hope things turn around  soon for you.

are  you totally off now, or still on a small dose?

[KarenRose]

Dear Happy2Heal,

 

I am so touched and reassured because of what you said. Really good to know that this is "normal" although all of this WD seems so far beyond what one could have reasonably expected from it. Sorry you struggled so much as you got off yours, and what a great job.

 

I am still holding at 0.05. Decided not to change it until I feel somewhat stable. I have to convince myself every day to titrate, mix and take it, but I know the consequences and want to be all the way clean this time. Will taper in much the same way you did....and nurse whatever comes up in the meantime.

 

 

[KarenRose]

Hello everyone,

 

I wanted to give an update here in this forum that has helped me so much. Since I last wrote, I have tapered down my Celexa to 1/800 of a milligram. Yes, that sounds insane and indeed the proces has been. I have tried to jump  off at 1 mg and 1/20 mg and it has been hell. Now I have given up the idea of jumping off or being done and have put all my focus on healing my body and psyche. I have decided to keep tapering until either I don't have any more Celexa drops or I can't feel the drops in dosage anymore. 

 

I still have symptoms of fatigue and some cognitive difficulties that I never had before, but overall my symptoms are much diminished. I get help from meditation, movement, connection and a very healthy diet. It has also helped to deal with my thyroid and blood sugar issues. I do hope the fatigue and concentration problems will lift too.

 

All the best to you and my hope for us all to heal,

 

Karen

[ChessieCat]

Hi Karen and thanks for coming back to update.  It sounds like you are doing really well.  I understand that you probably feel disappointed about the difficulty in getting off Celexa, but it is good that you have been sensible about reducing it slowly, which is what your brain is dictating.

 

This is a new topic which moderator BrassMonkey, who has been at 0 for at least a year now, created:

 

are-we-there-yet-how-long-is-withdrawal-going-to-take

 

I've quoted your post in this topic.  You might find it interesting to read other members' experiences trying to get off.

 

When to end the taper and jump to zero?

[Happy2Heal]

hi KarenRose, so good to hear from you!
I remember you from my early days of acute WD. 

I do hope you continue to get better and better and eventually feel like you've been mostly or fully healed.

I am getting there myself, finally got to zero in Oct of 2017, and have been off for just over a year now.

I still have some mild waves but overall life is good and I look forward to just a wee bit of 'clean up work' as my brain continues to adjust.

I did go quite a bit faster than what is recommended (and suffered because of that)  I so admire ppl who have the sense and the patience to go slowly!

it's such a smart thing to do, I think.

 

 

 

 

[Carmie]

Hi KarenRose, 

 

How are you doing?💚

[KarenRose]

Thank you, Carmie, for checking in! I am struggling right now since trying to jump off at 1/1000 of Celexa... Feeling almost drunk/drugged, uncoordinated and very sad. How are you doing? I hope you are well. I so appreciate you checking in.

[Carmie]

On 6/21/2019 at 4:32 PM, KarenRose said:

Thank you, Carmie, for checking in! I am struggling right now since trying to jump off at 1/1000 of Celexa... Feeling almost drunk/drugged, uncoordinated and very sad. How are you doing? I hope you are well. I so appreciate you checking in.

 

Hi KarenRose, 

 

I’m sorry you’re sad and struggling. When did you try to jump off? Are you back on the meds? If so, what’s your dosage now? It’s amazing how such low doses can still affect us, isn’t it? If you have a look at Freedom15 ‘s thread you’ll see he’s on really teeny tiny doses and still feels every drop. 

 

Our brains have an amazing capacity to heal, it’s just a really long and slow process. 

 

Thanks for asking how I’m doing. I’m at 6.75mg of Seroquel at the moment. I can only taper small amounts too, it’s going to take me many, many more years to get off that, maybe ten or so. My body is really sensitised from all the drugs I’ve been put on and off and I go through lots of waves every time I taper. I’m tapering under 4% at the moment. What is the percentage of your taper?

 

How are you doing with the Hashimoto’s? Is that still under control?

 

Sending hugs🤗

[KarenRose]

Thank you so much, Carmie. I just saw your message. I am inspired to hear how well you are taking care of yourself. And it was good to read again how long it takes for some of us to come off - safely.

 

My good news is that I stabilized shortly after I posted in June and then was able to come off at 1/1000 mg in late July with no issues. It was a huge surprise how much easier it was than EVERY other time I have tried, but it just felt right to do it. 

 

It has been about 6 weeks now and I have some anxiety and irritability as well as light insomnia and insulin resistance, but I feel confident I will stay off this time.

 

I think the Hashi’s is still gone...

 

Thank you so much.

 

All the best to you,

 

Karen

[Carmie]

Hi Karen, 

 

So glad to hear you’re doing a bit better, and congratulations for coming off your meds.

 

Let us know how you continue to do, sending hugs🤗

[quads]

Hello Karen, I came across you/your thread when reading 'when to jump off'.

It's amazing to see you're finally clear and doing well, I hope it continues long into the future. 

I'm starting my taper off celexa at the end of the month and working on a spreadsheet to work out future drops and see when I'll come off and wondering how the microdosing works?
I'm on a 20mg pill, will switch to a 10mg pill once my dose gets <10mg. From what I gather the liquid celexa is 2mg/drop, do you drop 2mg into a liquid suspension and then withdraw the extra until the remaining amount is your desired dose?

It's a long way away for me yet but I like to plan ahead

[KarenRose]

Hi Quads,

 

Thank you so much for your message. I like the way you are planning in advance and I think what you describe as a way to measure the right amount is just right. I kept coming up with new ways to figure it out and at the end I just withdrew  the same dose from the glass, and kept adding more water. I think you’ve got a great plan. I did not do a schedule but felt when my body was ready for a drop and then did a small drop, all the way down.

 

Best of luck and let me know if I can help more.

 

Karen

[Rhiannon]

Hi Karen--just want you to know it's been helpful to read your experience. I just jumped off citalopram last June at 0.1 mg and thought I had come down low enough. Got hit with delayed WD about 10 weeks later and reinstated to 0.05. I've decided to just keep tapering (after a nice long period of stabilization) until I no longer can figure out a way to make a smaller dilution. It's super helpful to meet someone else who came down to really tiny microdoses. 

 

I'm also struggling with insulin resistance and thyroid problems too, interestingly.

 

Oh well. Keep moving forward. Time to get ready for work, I work an afternoon shift. Anyway, thanks for sharing about your journey, it's encouraging to me.

[KarenRose]

Dear Rhiannon,

 

So happy and touched to hear that my experience helped you. Yours has helped me so much too, from the very beginning.

 

For me the need to go as slow and low as I did was a huge suprise and very confusing but I am validated to know you are having a similar experience with Citalopram (this stuff is very strong, it seems!!) 

 

Still, I know the journey is hard. What seemed most helpful to me was to truly take as much time as I needed and to make my own body and intuition my guides and just about nothing else. That way, I finally understood that I could not come off fully and succesfully until I knew for sure I could do it and FELT ready. This readiness expressed itself in not being able to figure out how to taper any further and really not wanting to bother with it.

 

I am inspired to hear about your journey and that you will be going superlow and slow. Let me know if I can support you more as you do.

 

Warmly

 

Karen

[KarenRose]

I think a more serious withdrawal wave has hit me at the 3 month mark of my final jump off. I apologize for this disgusting info: I have had diarrhea for over a week, lots of mucus from everywhere and feel beyond sad and beyond exhausted. 

 

I wonder if this can still be withdrawal and how to handle it....Is this common after three months or does it sound more like I have the flu. I don’t have a fever...

 

Any tips or just connection is welcome.

[Gridley]

 

44 minutes ago, KarenRose said:

Is this common after three months

 

A wave is very common at the 3-month mark after jumping off. Diarrhea is a typical withdrawal symptom.

 

Please be sure to keep yourself hydrated.

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Since magnesium can have a laxative effect, you likely would want to hold off on trying it until the diarrhea resolves.  You could try the omega.

[KarenRose]

Hi everyone. 

 

I guess this is my success story check in. I've been off for almost a year (just a few more weeks) and feel better than I have in years. This forum and the help I got here was literally a life saver. Thank you so much to the people who helped me when I was suffering so much I could not stand being alive anymore. 

 

I still struggle a little bit with blood sugar issues, mucus, and restless sleep but it's getting better. I am no longer depressed - amazing. Not anxious. I have had many waves but the last few ones have been tiny. I am prepared for bigger waves but no longer scared of them.

 

What helped me the most to come off and to heal? I am not recommending any of it - just saying what worked for me after trying just about everything for years.

 

1. Ultra slow tapering - feel free to take a look at my journey here in my thread. The key was listening to my body, not the numbers. It made all the difference and I learned it here. 
2. Whole foods super nutritious diet without allergens. I used the AIP diet. Lots of clean water.
3. EFT tapping and EMDR for pervasive trauma, emotional pain, stress and anxiety.
4. Dancing for exercise and stress release (no need to go out - did it at home). Still working on getting back in shape.
5. Coffee enemas for migraines and feeling toxic and achey. I know this is controversial and may not be for everyone. It worked very well for me.
6. Meditation in the morning - five to ten minutes.

 

I was convinced at several points I could not do it. If this is you, know that you can.

 

Much support and hope,

 

Karen

 

[Artistic1]

Hi, Karen. I am Karen, also! And I am also half Danish (I see you are in Copenhagen.) I read your thread this morning, and first - congratulations on being med free! Your story was just the encouragement I needed this time. I am doing a very slow taper of 10 weeks at a time. I was hoping to shorten that, because it will take me 4 years to get off at that rate, and at 71, that seems daunting. But your list of recommendations is reassuring, especially about listening to your body and not the numbers. 

 

You said, "I was convinced at several points I could not do it. If this is you, know that you can." Thank you for that hopeful statement.

 

Best wishes to you!

Karen 

[KarenRose]

Hi Karen, 

 

Thank you so much for your response. I am so happy I could inspire you to keep going. That's what I needed at some many points during my taper. I took 5 years to come off and decided the time it takes does not matter. What matters is coming off and doing it in a safe way. And being able never to reinstate again. So I encourage you to keep going. 

 

So fun that you are also half Danish! I am too, and now live in Copenhagen. 

 

All the best to you.

 

Warmly

 

Karen

[brassmonkey]

Karen-- congratulations on posting a success story. As is our tradition we will be locking this thread to close out that chapter of your life as you continue with your success. Your new story can be found here:

 

Success story:  karenrose-i-successfully-came-off-after-years-of-trying

 

Brassmonkey.

 

Edited July 8, 2020 by ChessieCat
changed success story link