26 minutes ago, ALonelySoul12 said:

Sadly this is an invisible disease, so I doubt I'll get all the benefits a "real" disabled person would get.

Sadly this is all too common.

It is hard to accept. But we must work towards this state of mind. For our own benefit. Change what you can and let go of the rest. Sometimes I’ve found there are certain things I can’t put off so I try to get them done on a day I feel a little better. Or take the less efficient approach if there is one but it works better for me logically. Basically I think of anything I can to make the task I have to do, and I can’t avoid doing, less stressful. Anything I can put off, I will. Only thing that matters is getting better, however long that takes. I’m unapologetically selfish at this point. Gotta put your mask on first!

On 6/15/2026 at 3:20 PM, ALonelySoul12 said:

Plenty of stories of people that got permanent dysautonomia after quitting.

There are also a LOT of stories of people who had a significant downturn around this kind of time, and then began to improve again and got better.

As @Chippy 92 days is not long relative to withdrawal syndrome, and it's definitely way too premature to start thinking you're permanently disabled, especially as you were functioning much better before this period.

It's much more likely that it will be pretty difficult for a while, as it has been, before getting better again.

I had significant dysautonomia, for a long time. It got better, to the point where I'm not disabled anymore.

You will likely also get better.

Hi @ALonelySoul12 , just watched Melissa Boutilier”s video where she talks about a “10th month” wave. Meaning she noticed a pattern where people go in to a severe wave at month 7 through 12. I’ve been following your thread and I think that’s what’s happening to you, unfortunately. She also says that once this wave subsides a lot of people turn the corner.

14 hours ago, Dnepr1234 said:

Hi @ALonelySoul12 , just watched Melissa Boutilier”s video where she talks about a “10th month” wave. Meaning she noticed a pattern where people go in to a severe wave at month 7 through 12. I’ve been following your thread and I think that’s what’s happening to you, unfortunately. She also says that once this wave subsides a lot of people turn the corner.

I truly hope so. Being more or less functional through withdrawl, its been a devastating blow. I had my mental health routine, was able to work remote, go shopping or have satisfying walks where i could take nice, satisfying deep breaths. I would do laundry, wash some dishes, call my friends at night and play some game, sleep between 6 and 10 hours depending on how tired I was... It wasn't anything crazy, I was limited in some more demanding physical tasks like more heavyweight laundry, DIY stuff, gardening, traveling within my area or exercise... And had plenty of digestive symptoms, some depression and crying spells, sexual dysfunction, neuro stuff... I could manage, but man, everything went out the window real fast.

From that point I slowly became agoraphobic, scared of my own friends, scared of my family, scared of the weather, fireworks, all the things I love. Can't tolerate strong emotions, some videos, videogames... It's as if I lost my personality, became paranoid about everything, and don't even recognize myself anymore. I'm heartbroken because I met an awesome friend online not long ago, but I've almost ghosted her because it makes me so anxious to call, so we mostly text if I have the energy to reply. And of course, physical symptoms that rotate daily and weekly. Doing something as simple as standing up will already skyrocket my heart rate, muscles twitch and spasm, pain everywhere specially a knee I had surgery on, pain under my ribs, skin feels cold or burning, I bloat extremely badly, shake for hours on end, can barely eat some days, balance issues, ears ringing, goosebumps, can't swallow or chew properly, my ankle twists as if I didn't know how to walk, at night I wake up with a racing heart or get jolted awake... The longer I stand or more things I do, the worse it all gets. It's absolutely mental the long list of things that I'm experiencing from head to toes.

I've been leeching off my family to get groceries or whatever I need, for I only go out if I really have to. The hot spanish weather isn't helping with temps over 30 degrees, up to 36 this weekend. The worst of all is that I already started feeling bad in January 2025, so I've been sick for a year and a half. That's when I was... 6-7 months after quitting lexapro tapering originally? I got h pylori, which I don't know if it was related. Most people have h pylori without issues, so maybe when quitting lexapro, my metabolism changed month after month, breaking the balance, motility or stomach acid PH level that kept it in check. Could also be age, or I got it by traveling to work or the UK to see my ex, no way to know. But ever since that I stopped functioning good enough to go to the office or exercise. Then I got antibiotics by february, chronic gastritis and weak LES diagnosed in april with endoscopy, started ppi, reinstated lexapro, tried all kinds of gastritis remedies like iberogast, probiotics, prokinetics, mirtazapine crumbs for appetite... And the adventure started with all kinds of pains and issues, ER visits where I got fed IV painkillers, interactions between lexapro and PPIs... So after 3 months, i removed all of those things one by one, eventually quick tapered by cutting 5mg into 2,5 for a week, and then stopped. And now, here I am. Just taking my PPI at minimum dose and alternating days. Don't feel a difference in symptoms wether I take it or not.

I hope I turn a corner soon so I can at least do the small things I've been doing the past year to keep me sane. And if I survive or even better, fully recover... I'll probably post the most detailed success story to date because of my diary. And after that, I'll contact a lawyer and start chopping heads in the Catalan health institute for blocking me from getting future medical leaves. All because I've been taking 1 or 2 week leaves in november, february and may because waves became unbearable. All becaue this illness isn't recognized. I'm even thinking on reaching out to TV programs or interviews to expose all this shit. But that's a long way as I'm socially anxious by default and now it's all turned up to 11. Maybe if I can stabilize enough to take a benzo for the occasion, for I always forget to breathe when i'm speaking anxious 😆

Anyway, that's a long rant. Having a rambling and anger day today I guess. Maybe it's a positive sign, having more energy? I've probably jinxed myself now as I've already started to feel some twitching, oh well... We keep marching forward to the unknown.

5 hours ago, ALonelySoul12 said:

I hope I turn a corner soon so I can at least do the small things I've been doing the past year to keep me sane. And if I survive or even better, fully recover... I'll probably post the most detailed success story to date because of my diary

I will keep my fingers crossed for you to turn that corner soon. But regardless, you will get through this! I look forward to reading that success story 😊

5 hours ago, ALonelySoul12 said:

I truly hope so. Being more or less functional through withdrawl, its been a devastating blow. I had my mental health routine, was able to work remote, go shopping or have satisfying walks where i could take nice, satisfying deep breaths. I would do laundry, wash some dishes, call my friends at night and play some game, sleep between 6 and 10 hours depending on how tired I was... It wasn't anything crazy, I was limited in some more demanding physical tasks like more heavyweight laundry, DIY stuff, gardening, traveling within my area or exercise... And had plenty of digestive symptoms, some depression and crying spells, sexual dysfunction, neuro stuff... I could manage, but man, everything went out the window real fast.

From that point I slowly became agoraphobic, scared of my own friends, scared of my family, scared of the weather, fireworks, all the things I love. Can't tolerate strong emotions, some videos, videogames... It's as if I lost my personality, became paranoid about everything, and don't even recognize myself anymore. I'm heartbroken because I met an awesome friend online not long ago, but I've almost ghosted her because it makes me so anxious to call, so we mostly text if I have the energy to reply. And of course, physical symptoms that rotate daily and weekly. Doing something as simple as standing up will already skyrocket my heart rate, muscles twitch and spasm, pain everywhere specially a knee I had surgery on, pain under my ribs, skin feels cold or burning, I bloat extremely badly, shake for hours on end, can barely eat some days, balance issues, ears ringing, goosebumps, can't swallow or chew properly, my ankle twists as if I didn't know how to walk, at night I wake up with a racing heart or get jolted awake... The longer I stand or more things I do, the worse it all gets. It's absolutely mental the long list of things that I'm experiencing from head to toes.

I've been leeching off my family to get groceries or whatever I need, for I only go out if I really have to. The hot spanish weather isn't helping with temps over 30 degrees, up to 36 this weekend. The worst of all is that I already started feeling bad in January 2025, so I've been sick for a year and a half. That's when I was... 6-7 months after quitting lexapro tapering originally? I got h pylori, which I don't know if it was related. Most people have h pylori without issues, so maybe when quitting lexapro, my metabolism changed month after month, breaking the balance, motility or stomach acid PH level that kept it in check. Could also be age, or I got it by traveling to work or the UK to see my ex, no way to know. But ever since that I stopped functioning good enough to go to the office or exercise. Then I got antibiotics by february, chronic gastritis and weak LES diagnosed in april with endoscopy, started ppi, reinstated lexapro, tried all kinds of gastritis remedies like iberogast, probiotics, prokinetics, mirtazapine crumbs for appetite... And the adventure started with all kinds of pains and issues, ER visits where I got fed IV painkillers, interactions between lexapro and PPIs... So after 3 months, i removed all of those things one by one, eventually quick tapered by cutting 5mg into 2,5 for a week, and then stopped. And now, here I am. Just taking my PPI at minimum dose and alternating days. Don't feel a difference in symptoms wether I take it or not.

I hope I turn a corner soon so I can at least do the small things I've been doing the past year to keep me sane. And if I survive or even better, fully recover... I'll probably post the most detailed success story to date because of my diary. And after that, I'll contact a lawyer and start chopping heads in the Catalan health institute for blocking me from getting future medical leaves. All because I've been taking 1 or 2 week leaves in november, february and may because waves became unbearable. All becaue this illness isn't recognized. I'm even thinking on reaching out to TV programs or interviews to expose all this shit. But that's a long way as I'm socially anxious by default and now it's all turned up to 11. Maybe if I can stabilize enough to take a benzo for the occasion, for I always forget to breathe when i'm speaking anxious 😆

Anyway, that's a long rant. Having a rambling and anger day today I guess. Maybe it's a positive sign, having more energy? I've probably jinxed myself now as I've already started to feel some twitching, oh well... We keep marching forward to the unknown.

I relate so much!! what a cruel hellish brutal journey this is..

Keep moving forward with courage and cope as best you can @ALonelySoul12 you will recover.

Wishing you blessed long relief.

Yep, confirmed jinxed. Shortly when going to bed, my mind got flooded out of the blue with irrational intrusive thoughts like what if a thief breaks into my home. Ignored them and tried to sleep anyway, but woke up an hour later with my heart beating the fastest I've ever felt in my life. It wasn't pounding strongly, just ridiculously fast. Stayed awake until 5AM as I could not fall asleep again, my face felt tense all over, started shaking and my heart rate has been elevated since.

Today seems like another painful day, I wonder if i'll be able to eat at all without making all symptoms worse.

@ALonelySoul12 could you please add mirtazapine to your signature?

You cycled through a lot of drugs, it's not surprising that this caught up with you. As I've said, it's not uncommon to worsen around this timeframe, but it's also not uncommon to then improve again after some months. Hopefully you will too.

I haven't seen stories of people who could function ok for a long time, who then got worse and didn't get better and functional again.

4 hours ago, Luke said:

@ALonelySoul12 could you please add mirtazapine to your signature?

You cycled through a lot of drugs, it's not surprising that this caught up with you. As I've said, it's not uncommon to worsen around this timeframe, but it's also not uncommon to then improve again after some months. Hopefully you will too.

I haven't seen stories of people who could function ok for a long time, who then got worse and didn't get better and functional again.

Done, added everything I could remember. Might have gone too far

Jesus, I don't know what I've done today but I feel extremely sick. My entire face feels tense and painful to the max. Front, eyes, jaw, cheeks, nose... Added to that, I've been sneezing, coughing, my left eye and nostril are constantly watery... I literally used a whole toilet paper roll. Tried to wash my face to flush anything that might be causing an allergy flare, but nothing helps. What's going on, what do I do 😭

14 minutes ago, ALonelySoul12 said:

Jesus, I don't know what I've done today but I feel extremely sick. My entire face feels tense and painful to the max. Front, eyes, jaw, cheeks, nose... Added to that, I've been sneezing, coughing, my left eye and nostril are constantly watery... I literally used a whole toilet paper roll. Tried to wash my face to flush anything that might be causing an allergy flare, but nothing helps. What's going on, what do I do 😭

Hi @ALonelySoul12 ,

I read somewhere that muscle tension, bruxism, etc. are ways used by the body to relieve intense stress. I do quiet activities when I can, such as cooking, reading or listening to relaxing music, even if I don’t feel like it. I noticed that it helps a little to reduce the intensity of the tensions.

2 hours ago, poulette38 said:

Hi @ALonelySoul12 ,

I read somewhere that muscle tension, bruxism, etc. are ways used by the body to relieve intense stress. I do quiet activities when I can, such as cooking, reading or listening to relaxing music, even if I don’t feel like it. I noticed that it helps a little to reduce the intensity of the tensions.

Sadly I have no control over it and can't really do anything. Mostly I listen to relaxing music or play a mobile game. I can't really move around the house much without heavily spiking my symptoms. Didn't think I would be here 11 months off, but this is my life now as a vegetable.

3 hours ago, ALonelySoul12 said:

What's going on, what do I do

37 minutes ago, ALonelySoul12 said:

Sadly I have no control over it and can't really do anything.

@ALonelySoul12 , do you see the paradox your anxious mind has you in? You are seeking ways to deal with your ruminations and then your anxiety tells you that you can't do them. Anything you can do, no matter how small, will help you break the mental and physical loop you're trapped in. But you need to make the effort, no matter how scary it is. It will pay off, believe me.

17 hours ago, ALonelySoul12 said:

Sadly I have no control over it and can't really do anything. Mostly I listen to relaxing music or play a mobile game. I can't really move around the house much without heavily spiking my symptoms. Didn't think I would be here 11 months off, but this is my life now as a vegetable.

@ALonelySoul12 this is not your life, this is just what you are dealing with at the moment. 11 months off is not that long, as I and others have said before, so thinking that you would be fine at 11 months, whilst totally possible, was a high bar to set yourself. I am 2+ years off and still suffering quite a bit on a daily basis, slowly I'm improving. We will all get there eventually. Try to stop making these negative comments, like 'Im a vegtable', they don't serve you, they are not true. WD will teach you super powers that will help you once you are healed, make sure you take the oppurtunity to learn them.

5 hours ago, Chippy said:

@ALonelySoul12 this is not your life, this is just what you are dealing with at the moment. 11 months off is not that long, as I and others have said before, so thinking that you would be fine at 11 months, whilst totally possible, was a high bar to set yourself. I am 2+ years off and still suffering quite a bit on a daily basis, slowly I'm improving. We will all get there eventually. Try to stop making these negative comments, like 'Im a vegtable', they don't serve you, they are not true. WD will teach you super powers that will help you once you are healed, make sure you take the oppurtunity to learn them.

It's just how I feel, you know? My routine is absolutely miserable, although I do my best to survive each day. I'm mostly sitting or lying most of the time, because moving around means I'll start shaking externally or vibrating internally, bloating to the max, reflux, ears ringing, nausea, pain under ribs, dizziness, cough... It still happens if I don't move, but if I do, it's gonna be hellish. Some days I'm able to do more than others like wash some dishes, maybe shower, see my plants, but still. It's the bare minimum of breathing and feel like I'm still getting worse, for I managed to go out or shop the previous month at least once or twice. Without my father taking care of it all and cooking most of my meals, I would be dead by now with malnutrition. It is this bad.

Still can't believe I used to do all these things daily. Even when I had the active h pylori eating away my stomach I felt better. It's easy to fall into the trap of wondering what is withdrawal and what is a new illness anymore. Like maybe all this bad bloating, chronic cough and sedentary life gave me worse reflux because i developed a hiatal hernia, for lately I can barely eat without feeling sick after 2 bites or feeling weird burning. But of course, no way to know without the test, and I should have had it already. My GP requested a gastroscopy to see if I still have gastritis after a year, but because of withdrawal and sedation required for a gastroscopy, I chickened out. I waited and postponed month after month, waiting for the moment I felt better, or good enough to risk a possible setback. But it never came.

I know it's tiring how I keep venting and complaining, and I get told it's normal for a worsening to happen in this period. I try my best to be positive in this forum or avoid it completely if I feel better... But it's so hard and extreme... Like if I had leg pain, the worsening period would be the pain being more constant and stronger... But in my case it feels like I got both legs chopped off, twisted my insides upside down, and got locked in a cage surounded by flames to burn me alive if I dare crawl out as an extra gift. Also added an electroshock if I dare fall asleep to rest.

Edited June 22Jun 22 by ALonelySoul12

5 hours ago, ALonelySoul12 said:

Without my father taking care of it all and cooking most of my meals, I would be dead by now with malnutrition. It is this bad.

This is how I lived for a very, very long time. Still, I need support even now, but I'm not really disabled anymore.

I don't think this is forever, but it's brutal.

Sorry to hear you’re so incapacitated at the moment @ALonelySoul12 . I can relate to a lot of what you’re saying. I’m in a similar place feeling incapable of small things, too scared to move a lot of the time. I can’t see a future for myself. I’m hoping this is just temporary, meanwhile it’s purgatory for me 😢

17 hours ago, ALonelySoul12 said:

It's just how I feel, you know?

Oh I know! But I'm challenging you to try to not think along these lines as best you can. I didn't say it was easy, but it is the path of less suffering if you can learn these skills.

It is brutal. No doubts or arguments here.

Small update. I was very worried about the 23rd because that's the summer solstice celebration and you can buy your own fireworks, which means the streets are full of children, teenagers, and adults alike launching exploding, whistling or flying stuff constantly. And I live right in the center of my town between two plazas, so yeah. I got myself some earplugs for that, but apparently I handled it okay. Despite being jumpy many days, I was not too jumpy by then. By night I did get overwhelmed because that's when the festivity peaks, with constant noise all the way to 3 AM... So I used them an hour or two before I went to bed and slept all the night.

The next day I was blessed with a small dirty window too, where my libido returned, although it was overwhelming alongside other symptoms. I pushed myself a little bit to have a some joy after so much suffering, so I'm now in a wave again. Already feeling the inner vibrations return.

Just wanted to share a small victory. I was panicking thinking about this day, and the days leading to this, because the day the firework shop opened, meant that sudden loud noises could appear at any moment and jolt my anxiety. But I made it, using the earplugs only two days.

Edited June 25Jun 25 by ALonelySoul12

13 minutes ago, ALonelySoul12 said:

Just wanted to share a small victory. I was panicking thinking about this day, and the days leading to this, because the day the firework shop opened, meant that sudden loud noises could appear at any moment and jolt my anxiety. But I made it, using the earplugs only two days.

Really, really glad to hear this @ALonelySoul12 😊💜🙌🏼. Thanks for sharing!

15 minutes ago, ALonelySoul12 said:

Just wanted to share a small victory. I was panicking thinking about this day, and the days leading to this, because the day the firework shop opened, meant that sudden loud noises could appear at any moment and jolt my anxiety. But I made it, using the earplugs only two days.

Great news, @ALonelySoul12 Very often, the anticipatory anxiety is much worse than the reality. You did a great job managing your fearful thoughts and staying positive.

@ALonelySoul12 you had another dirty window a little while ago.

These are small, but good signs that your body is working on getting better over time. Hopefully down the line you will begin to come out of the last few months' very difficult period.

So happy to hear of your little window @ALonelySoul12 very good news, more to come.

Aaand another terrible terrible day... Physical symptoms and anxiety being sky high weren't enough... My father gave me a talk because I've been non functional for so long, saying that I need to go to doctors, get tested for STIs (despite never doing anything), or parasites/viruses, find what's wrong with me because every day I'm worse and weaker...

I tried to explain that it was probably a nervous system issue and that it needed to recalibrate. I explained how I felt after last year experience with antibiotics and how it all went upside down... But he kinda just dismissed it, saying I'm not a doctor and that we need to find the right specialist, or else i'm just gonna slowly waste and die.

I'm so done... I can't take more months of bare minimum survival...

9 hours ago, ALonelySoul12 said:

Aaand another terrible terrible day... Physical symptoms and anxiety being sky high weren't enough... My father gave me a talk because I've been non functional for so long, saying that I need to go to doctors, get tested for STIs (despite never doing anything), or parasites/viruses, find what's wrong with me because every day I'm worse and weaker...

I tried to explain that it was probably a nervous system issue and that it needed to recalibrate. I explained how I felt after last year experience with antibiotics and how it all went upside down... But he kinda just dismissed it, saying I'm not a doctor and that we need to find the right specialist, or else i'm just gonna slowly waste and die.

I'm so done... I can't take more months of bare minimum survival...

Im sorry to read, don't listen to what others say, they don't understand and are still spell bound by the system. You are not done, you just need time.