☼ Katy398: I’ve tapered too quickly, what should I do?

[Katy398]

Thank you @Leila, @mstimc, @Johni and Chessie Cat. I really appreciate your time and consideration. Yet another strategy,  anxiety adopts to ‘try’ and to take control hey,  The epitome of

 ‘kicking someone when they’re down.’  

 

After the intensity of a said symptom subsides,  I often imagine  the referencing  in my success story ......and then one day I realised I’d listened to a whole album, filled  with those old, warm, joyful memories !!! .....

Take care folks,  we will all get through this and write that  Success Story! 

[Katy398]

_I just wanted to say that my  2 year anniversary is today!!!.  For any Lexapro/ Escitalopram sufferers I wanted to share that there is light.  I am definitely healing. It’s not  time for a success story yet,  it’s slow but reflecting on my 2019 Christmas/ New Years Eve  I can see my symptoms are definitely less intense.

We will get there,  maybe not as quick as we would like but I have absolute faith that we will all heal in time, 

 Best wishes K 

[manymoretodays]

Yay Katy398!  That's good news, and good update.

Which symptoms are less intense?

Balloons and confetti, and into 2021......very soon!  Best.

🤗

 

L, P, H, and G,

mmt

(may I do the honors, and add a sun symbol yet?)

Edited December 31, 2020 by manymoretodays

[mstimc]

Great news Katy!  So glad to hear you're doing so well.  Congratulations!!

[Katy398]

Thank you MMT and Mstimc, You’ve been so wonderfully supportive over the last two years. I hope I step into that ‘3rd year of intensive healing’ that some people talk about. You do such an amazing job on this site. I am so grateful. Warm Regards to you both Kx

[Ballardbeer]

great to read about year 2 progress katy! intensive healing can be a choice. for me it was choosing the right support and cutting out toxic energy in my life. that allowed me to focus on some past due work that got put on hold during WD. i'm not sure what intensive healing will look like for you but the fact that you're thinking about it means it's probably going to happen soon 😉 

[manymoretodays]

Because you're feeling better, I added our cheerful "here comes the sun" symbol ☼ to the title of your Intro topic, to show you're recovering.

 

Please continue to let us know how you're doing. I hope you will add your story to our Recovery Success Stories eventually!

 

Oh Katy398, that was fun.  And I accidentally added 2, so had to do some magic to get it back down to one.

Congrats on your sun symbol.......Let it shine, shine, shine.  I know it's still tough, but look how far you've come now, and hold on, because it does get better.  This healing thing sure takes time sometimes.

 

L, P, H, and G,

mmt

 

 

Edited January 5, 2021 by manymoretodays
purple

[Katy398]

Thank you @Ballardbeerand @manymoretodaysI’ll have to look at my notifications for some reason, I’m not getting replies to my own introduction. 

I have had a major setback. I had a very stressful event at work which seems to have triggered a relapse in recovery. My daily morning cortisol rushes have gone back to high intensity.  I’m having high anxiety spikes throughout each day again, I’ve lost motivation again, my facial tick has come back,  to be honest the list goes on and on. I feel like I’m back in the first year of WD ‘again’ . 

That generic  question continues to arise. IS THIS NORMAL? I know there’s no pattern but does anyone have any experience of this. I’m hoping it’s a blip and I’ll be back on track again but I fear I’m back to square one ( maybe two) and have to do the journey again. 

Any thoughts or insight would be gratefully appreciated. 

Warm Regards K

 

[mstimc]

Hi Katy

Short-term setbacks are very typical.  Its perfectly normal to feel you've "slipped back" to being in full-blown  WD symptomology.  That actually happened to me a few years ago after a stressful encounter in a supermarket of all places.  My therapist had to remind me that I was able to rebound a lot faster than I did during WD and recovery, and that I could see it for what it was.  Trigger events may come up, but its not a "forever" thing and its doesn't mean you have to start all over again.  It really is a temporary blip and you'll be back on track before you know it.  

[Katy398]

Thank you so much @mstimc that’s just what I needed to hear, word for word!!! Just a blip, just a blip. I must remember, it’s so easy for my repairing  brain to forget things. I hope you are well and that Covid in Portugal is improving. 

Take care,  Warm Regards K

[gentlehermione]

On 3/2/2021 at 6:05 PM, Katy398 said:

I’m hoping it’s a blip and I’ll be back on track again

 

 

@Katy398

Hi! Just wanted to let you know you are not alone. I've been experiencing the odd "blip" (horrible anxiety, cortisol spikes) myself over the past weeks and I'm 40 months out 😳 And up until recently I had been feeling so much better! This really is some roller coaster ride. Just try and take it in your stride and you will soon be back on track 😉

[Katy398]

Thank you @gentlehermionefor your kind words. I’m sorry you’ve hit another wave, I had hoped this would soon be behind us, I hope your ‘blip’ moves on soon. 40 months!!! Oh my word. 🙏

[Katy398]

I know I will have asked this before but  not sure if things change the longer one is drug free. At 31 months without any antidepressants (!Fast track taper from 40 mgs Lexapro). How dangerous is it to reinstate and what is the procedure if it doesn’t work? I’m very frightened of getting worse but I’m not sure I can continue with these debilitating waves. 

[Nevertoolate]

I'm so sorry to hear you're still getting those nasty waves. Are they lasting long or getting more severe? Can you think back and see any glimmer of improvement to encourage you to keep going? You've come soooo far 💖💖 especially from such a high dose. 

I can't give you any advice on reinstatement but I hope an admin will jump in with that 

[Katy398]

Thank you so much for getting back @NevertoolateTo be honest it’s hard to see any perspective when in the thick of a wave. I feel back to the beginning so frightened. I did see some improvements earlier in the year but this one is a stress induced wave. The stress has passed but the wave remains. Sorry to revert to the generic question. Is this normal? I know stress induces waves but why?  And why does the wave continue? 

[Nevertoolate]

I think it's perfectly normal what you're experiencing. You're brain and nervous system is trying to find its way back to pre-drug status. Anything can throw it out of balance I believe but you will get there. One day you suddenly think oh yeah that symptom has gone! 

[Ballardbeer]

katy i can definitely imagine what you are going through is somewhat predictable. 20 years twisting your CNS to the will of a pill... it'll take some time to unwind and find stasis. not sure this helps but i found a lot of relief last year in vagus nerve therapy (google vagus nerve reset and exercises, also just generally yawning is awesome), along with big doses of fish oil, and the best diet i could possibly manage. drug free is definitely the way! the body has amazing healing power.

[Katy398]

Thank you @Ballardbeer, It makes such a difference just having someone encourage me in this way. ‘. ‘The Will of the Pill’ hey! When in the thick of a wave it’s hard to imagine this broken brain can heal, but when I get encouragement like this I get motivated to put my head down and soldier on. Thanks again, it means so much,  I’ll do more research. 😶 

[getofflex]

I just wanted to encourage you @Katy398.  I also did a fast taper of Lexapro back in 2017 and 2018, until I found this forum.  I was also on Lexapro for 16 years when I started my taper.  I've slowly gotten better, so I believe you will too!  Keep up the good work! I know how discouraging and frustrating those waves can feel.  

[Katy398]

Thank you @getofflexIt helps to know there is someone else in the same boat sailing these rocky waters with me. These waves are terrifying when in a boat alone. Thank you for being there. 

[Erell]

Hello @Katy398

 

How are you doing ?

 

I've been a huge admirer of your strenght during this journey, I wanted to send you my support.

I do strongly hope this year brings you some peace.

 

 

I often remind a post you made about a number of waves, each wave meaning there was one less to go through...well that was a huge post for me and I often use this idea : thank you dear inspirational soul ❤

 

Sending you my very best wishes !

[Katy398]

Hi @Erell,

Thank you so much for dropping by, it means a lot. This journey  can still feel quite lonely. I’m actually doing ok. Out of my last wave and now back to WD normal. My waking anxiety has reduced from being daily for 2.5 years to maybe 3/4 times a week which is such a welcomed shift. It rekindled my faith in recovery, I look back and can see such progress. I’m not quite at the stage of writing a success  story but I don’t think it’s far away. It feels like my symptoms ‘flare up’ these days rather than grip me on and off throughout each day.  That life of terror now feels like episodes. 
Thanks again @Erellfor your kindness. How are you doing? 

[Erell]

Hello @Katy398

 

Well to be honest not very good, it seems that I'm not the "window type" so I'm more in a constant wave with moments "somehow more bearable" since 16 months.

 

BUT stories like yours give me a lot of hope ! 

 

I'm truly happy to read you are seeing progress : what a path you've walked, and with so much strenght, you deserve peace ❤

Sending many healing vibes your way!

[Katy398]

@AltostrataI finally found a psychiatrist who believes wholeheartedly in antidepressants withdrawal but he insists that the inner agitation, terror and restlessness that I still experience periodically now  (2.5 years out after a cold turkey) is not akathisia because it is not accompanied with a movement disorder.
Why is this?  

Is there any official medical documentation I can send him to convince him otherwise?

It seems ironic that I finally find someone who acknowledges WD yet does not understand the most challenging of all symptoms. A fellow SA friend once said she wished ever single MD  could experience just 5 mins of akathisia to gain some idea of what many of us go through day in day out. Any ideas anyone, I’ve sent him the Rxisk article but haven’t found another as good. 

[Altostrata]

You do not need to get this psychiatrist to agree you have akathisia in order to work with him.

 

A diagnosis of akathisia will not get you any closer to effective treatment.

[Katy398]

I know  I don’t ‘need to’ get the psychiatrist to agree on the definition and I’m not looking for a diagnosis. All I want is to find a way to explain that this is so much more than anxiety and depression so that he has some understanding of what I’m going through.   Giving it the label of anxiety just doesn’t fit the bill.

The definition seems to have changed over the years. Akathisia means ‘never sitting down’  it’s still often described as a movement disorder.

Is there an official label I give to this symptom of inner agitation restlessness and sometimes absolute overwhelming  terror.

I’m confused is this akathisia or not? 
 

[getofflex]

@Katy398it is frustrating when someone who is supposed to know about withdrawal doesn't get what we are going through, especially something as severe as akathisia.  I'm sorry you are having to deal with this. Here are some threads that may help you. 

 

This one talks about akathisia versus restlessness.  Hopefully it will help you determine whether or not you suffer from akathisia.

 

Akathisia vs Restlessness, Anxiety, and Agitation

 

Here is a thread that helps know how to talk to our doctors about withdrawal.  It has some printable leaflets to share with doctors.  I know you doctor already knows about WD, but perhaps something here will shed more light on it and further educate him/her.  

 

How to Talk to Doctor About Tapering and Withdrawal

 

 

[getofflex]

Prior 4 posts moved from thread "Blog: My akathisia experience by akathisiainfo".  Please keep all questions and discussion about your personal situation in this one thread to minimize confusion and avoid duplication of effort.  Thank you.   

[Altostrata]

@Katy398 are you saying he doesn't think you can have withdrawal symptoms for this long? Show him

 

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

 

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

 

Whatever you want to call it, has he suggested any treatments? Do you want him to treat it or are you looking for a diagnosis for insurance etc.?

[Katy398]

No @Altostratahe does believes in withdrawal, even protracted.
I am confused about the symptoms of Akathisia. He says it’s a movement disorder and I don’t have movement attached to symptoms.
The Rxisk definition of akathisia states that movement can be present but not always, other definitions say it’s primarily a movement disorder caused by  the inner restless.  
I have periods of deep inner restlessness, fear and absolute terror, which then lead to suicide ideation. I refuse to label this as anxiety or depression,  it so much more. I want to know what to call this symptom.  Is it akathisia or not. I called it akathisia because I followed the Rxisk definition now I think I might be wrong. 

[Erell]

Hello @Katy398

 

 

I see that you're confused about wether you're suffering from akathisia or not.

 

I understand : the states we go through during WD can be so intense, we are looking for words to share with others a bit of our load, words that can help one understand that one is not alone, that others have had similar experiences and that these experiences can be named and described.

 

But at the end of the day, the words are only words. The psychiatrist you talk about, even if he does believe in withdrawal, cannot understand these states if he didn't experience them, he cannot feel them, so all he has to try to understand your situation are words.

And the only words he has to describe your feelings are « depression » and « anxiety ».

 

I understand the frustration, very well, but I don't think you'll find an « official label » for what you're experiencing as long as WD syndrome is largely denied.

 

One of the main goals of medical science has been to identify and classify experiences, with the hope that a better understanding of the different types of affliction may lead to increased efficiency when it comes to personalizing treatments.
I won't go into the details of all the failures of this system in the field of psychiatry, you already know that too well.
But if you're looking for an official label, the best we can offer, in my opinion, is : you are going through WD symptoms that are the expression of a destabilised nervous system suffering from dysautonomia after a too-fast taper from powerful psychdrugs.
And this condition can manifest itself through feelings of terror/restlessness.

 

Perhaps you can see this as a part of the « un-patienting » process : let's give ourselves the freedom to get rid of the vocabulary of psychiatry if it weighs us down, and to stop identifying ourselves systematically with these labels. Let's also give ourselves the freedom to use the words that help us to name and describe our experiences.

 

You're not alone Katy398. You're part of a community that understands EXACTLY what you mean when you talk about a mix of restlessness/terror/absolute need to jump out of your skin. You can share your load with us, others have had similar experiences and if using the word akathisia helps you to name and describe your feelings, if this word helps you to go through this journey, then you are legitimate to use it.

 

You are telling me that you're suffering from intense spike of akathisia during this windows and waves process of healing from WD syndrome ? I do believe you, and I know what you mean.

 

And those who walked this path before us prove us that, one day, the words we used to describe WD belong to the past and can only be used to evoke distant memories

 

I send you big hugs ❤️ 

 

 

Edited August 30, 2021 by Erell

[mstimc]

@Erell, you've expressed WD perfectly! There is much wisdom in what Erell says, Katy.  Words can only approximate our experience.   Describing and understanding symptoms is valuable,  but so is how we act in managing them.  You, like so many others,  can recover.  It takes time, the right tools and above all patience,  but you can do it!

[Katy398]

Thank you so much @Erellfor your time, support and kind words. I know I’m understood by our community. It’s the fact that I am understood by so many that unquestionably confirms  that this is WD. 
It’s tragic that one has to experience it to understand it. Most medical conditions don’t have to be experienced by an MD in order to be understood. But it’s where we’re at and acceptance is definitely one of the keys to recovery. 
 

 I know words and labels do not help recovery.  Non the less the term akathisia will always confuse me whilst  one website states categorically it’s a movement disorder as it’s name suggests and then anther claims  it’s an “emotional  state caused by over 100 different drugs”   And I quote “ is often misleadingly described as a movement disorder.”

 

Anyway in this wave I stay until it decides to move on. It’s one more wave closer to recovery and as someone once said it can be viewed as  a time where deep healing  is taking place. At 32 months off Lexapro I know the drill all  too well,I practice acceptance,   I know this will pass, distraction will help, as will some talk therapy. Let’s hope we’re talking days for this one not weeks!! Thanks again Erell, Ho hum! Don’t forget to take good  care of yourself. Warm Regards K
 

 

 

[Katy398]

Thanks for dropping in  @mstimc, hope all’s well with you. I know I’ll get there eventually, and that this too will pass.  I’ve been here so many times before. 
I was just was interested in how others on SA defined akathisia,

Is it a movement disorder or an emotional  state that sometimes includes movement?

But it really doesn’t matter  if I don’t get a straight answer. Conflicting definitions are annoying admittedly, I don’t want to use an incorrect term but quite frankly  I’ve got much more to contend with at this precise moment than the definition of a word. Either way I’m in a wave and must ride it as best I can. Take care, hope all’s going well with you. Thanks again K

[mstimc]

@Katy398, I have a personal and wholly unscientific theory about the physical symptoms that plague us during WD.  I think anxiety finds your body's weaknesses and exploits them to gain power.  When I was younger, I managed to injure my ab muscles and rib area more than once.  When I have periods of high anxiety, such as when I was in full WD, my flanks constantly hurt.  All my tests came out fine.  Now, whenever that happens for no apparent reason, I assess the state of my stress and use some management techniques to get back in balance.  Pretty soon, the pain fades.  It may be the same for symptoms like akathisia.

[Phoenixmama]

@mstimc i believe it