margaretLO: 7 years Lexapro - 1 year off

[margaretLO]

Hello. 

I want to share my story to you and try to find some hope in this tuff journey. I am sorry for my English, is not my native language. 

I was 25 when I got some panic attacks  from weed use and did the mistake and visit psychiatrist. After deny medication he convinced me and took 20 MG of lexapro. First month I got hppd, that he claims it's not the drug and general mild reduce of my intelligence. I stayed on it and hppd went away, so I believe is a receptor thing. I stayed there and did three attempts get off all this years with his advice taper in one month the max dose. First attempt at 2016 after one  year use I got extreme terror and anxiety, second extreme social fear and loss of weight, third is the last one I got extremely sick on it with reactions and extreme fatigue and all day migraines plus inflammation marker on blood so I cold turkey. Never heard of tapering before until this year. All My  symptoms that I have and had severe after get off the med it was mild on Lexapro and I had signs for all. 

First months I get off even I didn't have my character etc I wasn't bedridden. 

My symptoms so far I deal with them are:

Symptoms that got better at 20-70percent:

Extreme vertigo, balance issues, walking issues, hand shaking, legs restless, spinning vision, severe oscilopsia, crashing sounds, smelling things didn't exist, couldn't sit on chair because felt my body collapsing for months, swallow issues ate only soups for months, fever, anxiety not severe like muted, toxic anxiety, extreme weight loss, cold dysfuction, hair loss, tmj, extreme fatigue, one sec working memory, extreme anger, extreme happiness, extreme crying spells,burning brain, missing brain feeling,(still have most of them but not in a range of make me bedbound). I regain 60-70percent of my hearing even left with tinitus. Started feel some music, started seeing dreams, gain 20 percent of visualization. (I had lost all of them on lex and didn't know from lobotomized) 

Symptoms that persist or getting worst: blank mind apathy, tinnitus, severe cognitive dysfuction, severe detached from world, words problem, severe confusion even do simple tasks, time problem perception, both long term and short memory loss, visual snow, hppd, akitenopsia, bomb exploding feeling on head

General I deal with all kind of possible symptoms. 

This concern me it's that I had all this mild on Lexapro and I had esr inflammation marker.. So I believe is chronic damage. 

The severe dementia started ten months off. 

My personality has nothing to do that I was but I am worst even from my severe pssd I had on Lexapro. 

Did anyone got this one year off to his cognition and get better? I started go to my office with brother try do some things I used to but suffering 24/7  with no thoughts and brain. 

Can the cognition get better one year off? 

Love you all

Edited May 21, 2023 by manymoretodays
name to topic title

[Carmie]

Welcome @margaretLO I’m sorry to hear about all the symptoms you’ve had or still have. These medications certainly cause a lot of havoc. Everyone on this site is going through an myriad of different symptoms. 
 

What date did you go off the Lexapro? Would you please put that into your drug signature. I’m gathering you may have tapered off it really quickly? Just go to the top of the Introductions and Updates page and you’ll see a thread asking you to start a topic about yourself. In the first paragraph there’s a link showing you how to do your drug signature. Please put in all medications you’ve been on, especially in the last two years. Thank you so much. 
 

If you read other people’s threads you’ll see that there are many people that are still suffering with symptoms years after coming off their medication, so you’re not alone. Feel free to pop over to other threads to have a chat. Cognition problems are really common. If you go to the Symptoms and Self-Care section there’s a thread entitled: “ Brain fog: blank mind, comprehension, concentration, cognitive and memory problems,” if you want to check it out.

 

Sending hugs🤗

[Carmie]

How are you doing @margaretLO ? 💛

[margaretLO]

Hello Carmie. Thank you. Not good. 

I am dealing with brain fog and xtreme ocd thoughts (not mine). Blurry vision dissappeared three days now.. General very bad.... I ll update My signature. 

[Carmie]

I’m so very sorry you’re suffering so much @margaretLO, thank you for doing your signature when you get around to it. If you have trouble doing it, I can get someone to send you a link, I don’t have a computer. 
 

I see you live in Greece, I was just looking at some pictures of Greece, it looks like such a beautiful country. Do you live near the water at all? 
 

Sending you hugs🤗

[margaretLO]

On 5/31/2023 at 3:18 PM, margaretLO said:

Hello Carmie. Thank you. Not good. 

I am dealing with brain fog and xtreme ocd thoughts (not mine). Blurry vision dissappeared three days now.. General very bad.... I ll update My signature. 

Thank u much..

I would be greatfull if you send me the link how to make the signature.

Yes the sea is almost above my house but I can't feel my surroundings 

[Carmie]

@margaretLO I’m glad you live near the water, but it’s sad that your emotions are so numb that you can’t enjoy it. It’s very common in withdrawals to have anhedonia and have trouble feeling pleasure in anything. Brain fog and feeling detached from the world is so very common. 
 

You said that you had extreme emotions, like extreme angry, extreme happiness, extreme crying spells. These are neuro-emotions caused by the meds. There is a thread in the Symptoms and Self-Care section on neuro-emotions if you want to have a read of it. It’s also very common with withdrawals. All our emotions can be extremely heightened, it’s not us, it’s the medication. 
 

You mentioned dementia. Did you actually get diagnosed with it? Withdrawals can also affect our memory etc, and what you have may be the effects of this if you weren’t officially diagnosed with dementia. I’ve had chronic fatigue syndrome for three decades and it feels like I have dementia, because my memory is so very bad. I’ve learnt to live with it and make peace with it, as I can’t change it unless I one day get over my illness. As regards withdrawals, you’ll see that quite a number of people on this site who have recovered ended up getting their cognition back. Even when going through withdrawals, many have said that they slowly started to feel better. 

 

I sent a note for someone to send you the signature link. I don’t have a computer and can’t send links. 
 

Sending hugs your way🤗

[margaretLO]

6 hours ago, Carmie said:

@margaretLO I’m glad you live near the water, but it’s sad that your emotions are so numb that you can’t enjoy it. It’s very common in withdrawals to have anhedonia and have trouble feeling pleasure in anything. Brain fog and feeling detached from the world is so very common. 
 

You said that you had extreme emotions, like extreme angry, extreme happiness, extreme crying spells. These are neuro-emotions caused by the meds. There is a thread in the Symptoms and Self-Care section on neuro-emotions if you want to have a read of it. It’s also very common with withdrawals. All our emotions can be extremely heightened, it’s not us, it’s the medication. 
 

You mentioned dementia. Did you actually get diagnosed with it? Withdrawals can also affect our memory etc, and what you have may be the effects of this if you weren’t officially diagnosed with dementia. I’ve had chronic fatigue syndrome for three decades and it feels like I have dementia, because my memory is so very bad. I’ve learnt to live with it and make peace with it, as I can’t change it unless I one day get over my illness. As regards withdrawals, you’ll see that quite a number of people on this site who have recovered ended up getting their cognition back. Even when going through withdrawals, many have said that they slowly started to feel better. 

 

I sent a note for someone to send you the signature link. I don’t have a computer and can’t send links. 
 

Sending hugs your way🤗

Goodmorning! 

I didn't know about neuroemotions. I ll check it out thank you. I got them at withdraws. 

Yes both memories are super effected to the point not have a clue what I did previous days plus severe confusion to do daily tasks... 

Thank u for all the info... 

I hope get better to a point that ll make peace of it.. Because it's very xtreme. 

I got binocular motion issues and many symptoms unfortunately and cfs too

Now I am out try take some vitamin d.

Sorry for ur memory issues. Hope resolve ❤️

[Doctorsrcrap]

Hiya.  Just wanted to welcome you to the community and wish you luck on your journey. 

Sending healing vibes your way 

[Carmie]

23 hours ago, margaretLO said:

Goodmorning! 

I didn't know about neuroemotions. I ll check it out thank you. I got them at withdraws. 

Yes both memories are super effected to the point not have a clue what I did previous days plus severe confusion to do daily tasks... 

Thank u for all the info... 

I hope get better to a point that ll make peace of it.. Because it's very xtreme. 

I got binocular motion issues and many symptoms unfortunately and cfs too

Now I am out try take some vitamin d.

Sorry for ur memory issues. Hope resolve ❤️

Yes, neuro-emotions are definitely something we contend with when going through withdrawals Margaret, I feel like crying today myself. I have a lot of health issues on top of withdrawals and I’m feeling quite overwhelmed today. I let myself feel the emotions, but I continue to do things that matter to me anyway. 
 

I’m sorry you have CFS as well, how long have you had it? Having had it for three decades, it’s just part of my life now, I can’t really remember what it’s like to be well. It’s just new health issues over the last few years (unrelated to withdrawals) that are hard to deal with. 
 

Hope you find a little joy in your day💛

 

[margaretLO]

1 hour ago, Carmie said:

Yes, neuro-emotions are definitely something we contend with when going through withdrawals Margaret, I feel like crying today myself. I have a lot of health issues on top of withdrawals and I’m feeling quite overwhelmed today. I let myself feel the emotions, but I continue to do things that matter to me anyway. 
 

I’m sorry you have CFS as well, how long have you had it? Having had it for three decades, it’s just part of my life now, I can’t really remember what it’s like to be well. It’s just new health issues over the last few years (unrelated to withdrawals) that are hard to deal with. 
 

Hope you find a little joy in your day💛

 

I am really sorry for your symptoms Carmie. 

I had fatigue on Lexapro but last year I developed it severe one day like couldn't lift the stairs. Then I get off lexapro and this continue and become severe. Now I have waves and windows of xtreme fatigue to housebound to moderate fatigue walk to work or do some stuff, never normal ofc for my age, not even close. 

💓

[manymoretodays]

 

[Carmie]

Hi @margaretLO , thanks for your kind words and thanks for putting in your signature. I’m sorry you’re struggling with fatigue too, it certainly makes day to day living a challenge. Mine isn’t from the medication, but from my illness. Yeah, I know the feeling of barely being functional, not fun! Some days I don’t even have the strength to walk downstairs to check the mail. I spend lots of time in bed. One of the worst things about CFS is the effects on the brain, I can barely think to save my life some days. 
 

I hope that you’re coping okay💛

[margaretLO]

Suddenly the colours become dull and grayish... 17 months off. Does this never end? 

Cognition and emotions still bottom

[manymoretodays]

Hi margaretLO.  Any windows?  Even partial day ones?  For me, it did get much better.  And at 17 months off everything.....I still struggled quite a bit, with some WD symptoms....yet if I paid attention and checked my journals, or calendar......I could or would always see the Windows for the Waves and know I would get lifted back to a better and easier baseline.  I can't pull off links to great topics here right now.  Do seek out new practices, if needed, to give yourself a pause from worrying about staying stuck.  Oooh sweetie, it can sure try us....prolonged or protracted WD.  I sense you'll improve and feel it soon too.  L, P, H, and G.  mmt

[RachelSusan]

@margaretLO I'm sorry to read about what you are going through. I hope you see some improvement soon. When you feel up to it, please let us know how you are doing.

[margaretLO]

On 8/4/2023 at 11:23 PM, manymoretodays said:

Hi margaretLO.  Any windows?  Even partial day ones?  For me, it did get much better.  And at 17 months off everything.....I still struggled quite a bit, with some WD symptoms....yet if I paid attention and checked my journals, or calendar......I could or would always see the Windows for the Waves and know I would get lifted back to a better and easier baseline.  I can't pull off links to great topics here right now.  Do seek out new practices, if needed, to give yourself a pause from worrying about staying stuck.  Oooh sweetie, it can sure try us....prolonged or protracted WD.  I sense you'll improve and feel it soon too.  L, P, H, and G.  mmt

 

Hello. Thanks for your interests. Wish spread recovery to you. 

I am not doing well. Cognition, memory, brain fog, vision, apathy and fatigue are my main problems. 

Most people left me and just spend the time on bed grieving my life. I am very sick. 

I cook for me and go out once in a while but the severe Dr and fog doesn't let me. 

[margaretLO]

I think I am worsening. The confusion memory loss and brain fog are 100percent, I can't even go out. 

[manymoretodays]

Hi margaretLO,

Hugs.  When's the last time you went out?  Any home people or people close by that you can talk with or visit with every now and again?

I know.  And I remember when it all felt scary......the DP/DR stuff especially.......when I did not really know what it was, that it WAS temporary.

 

Hoping you'll find something helpful, calming in the topic below:

-derealization-or-depersonalization-dr-and-dp/

 

Windows and Waves

and remember ^ 

 

I know that right when you posted you felt horrid, and cognitively challenged.......I am hopeful however, that by now you feel a little better or improved.  I mean maybe not all the way to where you wish to be someday, but better, even a little.

 

You posted.  You used big words.  Good, good.

 

Oh sweetie, hang on.  Hoping you can find someone locally to connect with too.  I used to use....."I had a drug reaction" to explain what was going on with me, when it was bad and tough.  Don't over isolate.

 

Love, p, h, and g,

mmt

[margaretLO]

Thanks a lot... I am xtreme severe and for what reading my post seems that I am better but I am in a very bad situation. 

 

I cant feel time at all, neither surroundings, I have blank mind, I cannt understand world around me, my vision  almost doesn't exist, static halos visual snow distorted light sensitivity objects are distorted and colours, shaking vibrating, all blurry, anger issues, I have zero memory both long and short, xtreme fatigue to the point can't go out, some days cant go to toilet, completely lost of personality, not normal behavior and ruminations, my right eye is lagging, aphasia, slurring my speech, generally I am housebound and have trouble even do food shopping.I feel trapped out of reality and live in another planet., severe Dr, pressure at the head and eyes, dry eyes, can't make conversations neither pretend, anhedonia, hearing loss tinnitus ....if I move my head the motion doesn't follow my head movement, cant feel my hands..I don't remember at all how look normal, can't stand more than some minutes, walking feels weird . I feel severely brain damage.... 

[RachelSusan]

@margaretLO I am sorry to hear that things are so bad. These drugs are truly awful and it can take some of us a long time to recover. I too have been in the hell you describe however relief did come to me and it should come to you. Your brain has indeed been injured by the Lexapro but the brain can recover.  It does take the brain a very long time though.

[AmitV]

On 8/26/2023 at 5:37 PM, margaretLO said:

Thanks a lot... I am xtreme severe and for what reading my post seems that I am better but I am in a very bad situation. 

 

I cant feel time at all, neither surroundings, I have blank mind, I cannt understand world around me, my vision  almost doesn't exist, static halos visual snow distorted light sensitivity objects are distorted and colours, shaking vibrating, all blurry, anger issues, I have zero memory both long and short, xtreme fatigue to the point can't go out, some days cant go to toilet, completely lost of personality, not normal behavior and ruminations, my right eye is lagging, aphasia, slurring my speech, generally I am housebound and have trouble even do food shopping.I feel trapped out of reality and live in another planet., severe Dr, pressure at the head and eyes, dry eyes, can't make conversations neither pretend, anhedonia, hearing loss tinnitus ....if I move my head the motion doesn't follow my head movement, cant feel my hands..I don't remember at all how look normal, can't stand more than some minutes, walking feels weird . I feel severely brain damage.... 

 

talk to your neurologist about this. Only a few neurologists have knowledge in this area. I have this and very slowly getting better. 

 

https://www.visualsnowinitiative.org/wp-content/uploads/2023/06/visual-snow-diagnostic-criteria-v10.pdf

 

https://vestibular.org/blog/visual-snow-syndrome/

[margaretLO]

On 8/27/2023 at 2:50 AM, RachelSusan said:

@margaretLO I am sorry to hear that things are so bad. These drugs are truly awful and it can take some of us a long time to recover. I too have been in the hell you describe however relief did come to me and it should come to you. Your brain has indeed been injured by the Lexapro but the brain can recover.  It does take the brain a very long time though.

Thanks a lot ♥️ I appreciate that

[margaretLO]

8 hours ago, AmitV said:

 

talk to your neurologist about this. Only a few neurologists have knowledge in this area. I have this and very slowly getting better. 

 

https://www.visualsnowinitiative.org/wp-content/uploads/2023/06/visual-snow-diagnostic-criteria-v10.pdf

 

https://vestibular.org/blog/visual-snow-syndrome/

Thanks a lot

[margaretLO]

Hello! I know that it doesn't matter now but I have curiosity. I want to ask about 4 months off lexapro I got very vivid contrast colours and severe light sensitivity, I become bedbound with fatigue. With your experience here did anyone have this from withdraws or drugs? 

I am afraid I got toxicity from tumeric, which I saw need cyp2d6 (poor metabolizer) and I took to big amounts because I didn't know. I feel guilty... 

[Jakeblack14]

Hey @margaretLO, 

I am exactly 4 months off of Lexapro. Light sestivity and color contrast are not as prevelent, I would more describe mine more as sound sensitivity and just any kind of stimuli, but the others are not uncommon. 

Personally, Fatigue and Nuesea have been my biggest physical symtoms. Here is a list that we can use to visualize most common symtoms. Please note, this is not an “all inclusive” list. There are some symtoms you may exeperience that are not on this list and it may be helpful to ask your peers like you have, about symtoms you are experiencing. 

 

https://www.survivingantidepressants.org/topic/1779-using-dr-glenmullens-checklist-to-track-symptom-patterns-and-progress/#comment-23798

 

We all make mistakes in this journey, so we recognize them, pick ourselves back up, and move forward. 

Good luck. 

[andy96gr]

Hello @margaretLOHHow are you doing?

On 11/18/2023 at 2:34 PM, margaretLO said:

I am afraid I got toxicity from tumeric, which I saw need cyp2d6 (poor metabolizer) and I took to big amounts because I didn't know. I feel guilty... 

What is that ?I aslo did a mistake which maybe made things worse ,I took maca and from then on I had very bad symptoms.Should I do that test? What is the meaning of this gene test?I also taking lyrica and everyday is becoming worse annd more worse.Maybe i should do this but which doctor should see this after?

[margaretLO]

13 minutes ago, andy96gr said:

Hello @margaretLOHHow are you doing?

What is that ?I aslo did a mistake which maybe made things worse ,I took maca and from then on I had very bad symptoms.Should I do that test? What is the meaning of this gene test?I also taking lyrica and everyday is becoming worse annd more worse.Maybe i should do this but which doctor should see this after?

Hey! I am not doing well unfortunately! How are you? 

Its a test show cyp450 enzymes we have in body, which they break medications or herbs or general they are responsible for metabolizing things. I found a online place they do it and called.  They came to my house and took saliva for the test 

 

[margaretLO]

5 hours ago, Jakeblack14 said:

Hey @margaretLO, 

I am exactly 4 months off of Lexapro. Light sestivity and color contrast are not as prevelent, I would more describe mine more as sound sensitivity and just any kind of stimuli, but the others are not uncommon. 

Personally, Fatigue and Nuesea have been my biggest physical symtoms. Here is a list that we can use to visualize most common symtoms. Please note, this is not an “all inclusive” list. There are some symtoms you may exeperience that are not on this list and it may be helpful to ask your peers like you have, about symtoms you are experiencing. 

 

https://www.survivingantidepressants.org/topic/1779-using-dr-glenmullens-checklist-to-track-symptom-patterns-and-progress/#comment-23798

 

We all make mistakes in this journey, so we recognize them, pick ourselves back up, and move forward. 

Good luck. 

Hey! Wish u quick healing! Yes the symptoms are a lot and many include in the list

Xx

[andy96gr]

Feel really sorry for you ,hope you see improvements in the future.Me too , I'm not doing well no idea what is really happening.I have pain all over my body and my cognition is going worse and worse.

31 minutes ago, margaretLO said:

cyp450 enzymes

 

On 11/18/2023 at 2:34 PM, margaretLO said:

cyp2d6

Are these different or one test?  In cyp450test  is included cyp2d6? These are two different tests right? You did these both ?And where did you do these?

[andy96gr]

On 11/18/2023 at 2:34 PM, margaretLO said:

afraid I got toxicity from tumeric, which I saw need cyp2d6 (poor metabolizer) and I took to big amounts

Cannot understand that? Tumeric is supposed to help with neurotoxicity and toxicity.

[margaretLO]

23 minutes ago, andy96gr said:

Feel really sorry for you ,hope you see improvements in the future.Me too , I'm not doing well no idea what is really happening.I have pain all over my body and my cognition is going worse and worse.

 

Are these different or one test?  In cyp450test  is included cyp2d6? These are two different tests right? You did these both ?And where did you do these?

Thanks a lot. Wish u spread recovery.

About the test, it's one general cyp450 which Includes cyp2d6 too and some other enzymes. 

I read tumeric needs cyp2d6 which I don't have... So most possible to get toxicity 

 

[andy96gr]

Thank you @margaretLO,I wish you the same ,its frustrating all this situation.Where did you do this test Im searching and cannot find here in Greece anywhere to do this.And thank you for your answering 😊.

[margaretLO]

On 11/19/2023 at 10:12 PM, andy96gr said:

Thank you @margaretLO,I wish you the same ,its frustrating all this situation.Where did you do this test Im searching and cannot find here in Greece anywhere to do this.And thank you for your answering 😊.

There is two companies in Athens they do it. I ll pm

[margaretLO]

Literally I feel mental after disconnection lexapro. 

I can't stop write to my ex even we broke up, I ruminate constantly about how he gaslighted and I don't lose the chance to send msg. I can't hold myself. I feel crazy. 

I never ever annoy anyone when I was normal. I cant think clear and nornal. I am weird and confused all the time. I lost completely myself and Noone will believe me for the mental issues. Even my family and friends believed me for the cognitive and psychical issues. I have anger out of nowhere. I feel dangerous. Not in a way I ll hurt someone, in a way I am not acting normal. 

I don't want this anymore. I think my life ie is over. Surviving every second... 

[Jakeblack14]

Hey @margaretLO,

Sorry its been such a beating recently. 
How long have you been off of Lexapro now/how long has this wave been for you? 

 

Keep taking it one day at a time. We are with ya.