Hi everyone, I hope you are all as well as you are able to be. I joined SurvivingAntidepressents.org in 2024 after I CTed Lexapro, and found out pretty much right away what was going on with me. Since then, I have had less typical WD symptoms but have developed some type of MCAS... Three months after my CT, I suddenly began to react to every food I tried, and since late July, I have only been able to eat a specific brand of frozen chicken, butter, and sweet potatoes. Some exceptions include olive oil, salt, and steamed broccoli, but I lost all of those along the way, unfortunately.

 

The main thing I am struggling with are all of my weird symptoms that seem to be MCAS related including itching, tingling, constant drippage in the back of my throat, buzzing feeling, etc. I have some really bizarre symptoms that make what I am going through difficult to talk about because I fear being gaslit for sounding crazy. Something I deal with are in increase in these symptoms whenever I try to fall asleep or whenever I am concentrating. Another weird thing I deal with is that sometimes lights flash behind my eyes when I am trying to fall asleep. 

 

One of my WEIRDEST symptoms has to do with blankets and certain clothing fabrics. I kid you not, whenever I put a blanket on my body I experience weird buzzing and twitching throughout my whole body and other hard to describe unpleasant symptoms. This also happens to me when I wear certain cotton clothing- not all cotton clothing, but certain items I have notice consistently give me the same symptoms and I have no idea why.

 

All that to say, I am really struggling having only been able to eat 3 foods for almost 2 years. It is socially isolating. I will be graduating college in May and I feel like a failure. I need to get a job, but alo I feel like I should focus on my health. However my biggest concern is that because of MCAS, I can't eat anything really without reactions or take supplements, but my protracted w/d stands in the way of me trying literally ANYTHING since my system is so hypersensitive. Believe me, I even got prescribed cromolyn sodium, which is a liquid medication that is supposed to help calm the mast cells in your gut, and supposedly it works for many MCAS patients to help them to regain certain foods. I tried that a couple times a few months ago and unfortunately was brought back to some symptoms from the beginning of my w/d experience, such as tiny pupils, headaches, and intense anxiety/restlessness. I truly feel like I am stuck between a rock and a hard place, and nothing has improved in the last year. I honestly do not think there is anything I can do about this. I don't know how much longer I can keep waiting for what I hope is protracted w/d to go away. However, I was diagnosed with MCAS via a urine test, so I do not know if those symptoms will stay with me forever. My allergist even said that certain things just "turn it on" in the body, so even if protracted w/d goes away, I am not sure if these hypersensitivity issues will.

 

Lastly, I want to put it out there that I am Catholic, and my faith is the biggest part of who I am. In case anyone can relate or wants to share spiritual encouragement.

 

Thank you all for reading.

 

Here is my first, original post on SurvivingAntidepressents:

 

Hi all. I have been on 20mg of Lexapro since Dec. 2021 for extreme physical anxiety symptoms. I could not sleep. The Lexapro helped me significantly and I experienced no effects except when upping my dose.

 

However, everything changed March 2024. I have been suffering stomach bloating and other related issues since the fall, so I decided to try a probiotic. After a few days, the probiotic seemed to be helping, but then I suddenly had an adverse reaction to Lexapro and am unsure if it is related or not. Because of this I got worried and only began taking 15mg for the next two weeks but experienced the same symptoms: increased heart rate, headache, nausea, muscle spasms, leg twitching, emotional bluntness, chills, etc.

 

My doctor wanted me to cross-taper to Zoloft, starting at 25mg while dropping down to 10mg on the Lexapro. I took them together for two nights in a row and had horrible symptoms, like those listed above but my hands and legs were shaking badly and my teeth were chattering. This obviously concerned me so I stopped taking the Zoloft completely and was only on 10mg of Lexapro for a few days until one day I felt horribly numb, like I got crippling depression overnight. I felt so unhappy and suicidal, I decided to try the Zoloft again to stabilize me. So, for three days I took 25mg of Zoloft in the morning and 10mg of Lexapro at night. My symptoms were not as bad as they were when I took them together, but I still suffered reactions to both of them.

 

Last night, I took 25mg of hydroxyzine which I have been taking for the last week to help me sleep due to insomnia and anxiety surrounding my symptoms. I had the same reaction as I usually do when I take Zoloft or Lexapro, and I read that hydroxyzine can influence serotonin, so this concerned me. Because I had a reaction from the hydroxyzine, I wanted to be cautious and skip my dose of Lexapro for risk of further toxicity.

 

Today, I feel horrible. I am super nauseous, have had some chills, and have a very intense headache like pressure in my face.

 

I am lost.. Should I reinstate the Lexapro at the lowest tolerable dose for me and try to stabilize from there? I don't know what to do anymore, if I am suffering from adverse reactions plus withdrawal. I am so scared of beginning this journey because it seems like it will be a long road of unknowns and suffering.

Welcome to the forum. I'm really sorry to hear about the difficult health issues you've been having since stopping Lexapro.

 

  

11 hours ago, StDymphna said:

The main thing I am struggling with are all of my weird symptoms that seem to be MCAS related including itching, tingling, constant drippage in the back of my throat, buzzing feeling, etc. I have some really bizarre symptoms that make what I am going through difficult to talk about because I fear being gaslit for sounding crazy. Something I deal with are in increase in these symptoms whenever I try to fall asleep or whenever I am concentrating. Another weird thing I deal with is that sometimes lights flash behind my eyes when I am trying to fall asleep. 

 

The first thing to say is that I believe you, and you are welcome to share the other symptoms.

 

Secondly, although I have not experienced everything you have (mostly no food sensitivities and some of your physical symptoms), I have experienced some of it as part of withdrawal, such as the overreaction to physical stimuli (I really struggled with showering for more than a year), and the flaring up of some of the more bizarre, dysfunctional symptoms when trying to sleep. This is something that still happens to me, but less so now.

 

  

11 hours ago, StDymphna said:

I don't know how much longer I can keep waiting for what I hope is protracted w/d to go away. However, I was diagnosed with MCAS via a urine test, so I do not know if those symptoms will stay with me forever. My allergist even said that certain things just "turn it on" in the body, so even if protracted w/d goes away, I am not sure if these hypersensitivity issues will.

 

It's hard to know. All I will say is that at coming up to two years off, there is still precedent for healing.

 

My experience and symptoms have mostly been different to yours, but I was in a mostly pretty terrible state form 18-24months, and then most of the time towards 30 months was still pretty bad and I was non functional.

 

However, in 6 weeks it will be 3 years off for me, and I am improving steadily all the time, with setbacks. Our symptoms were mostly different as I said, however I was extremely ill and really quite disabled, and now I am not, so recovery from severe symptoms that seem unrecoverable is possible, when they are caused by withdrawing from these drugs.

 

 

I don't know much about MCAS, but what I would say is that it is entirely possible that much of this is withdrawal-related, and the reaction and worsening of withdrawal symptoms after trying the new drug sounds like "classic" withdrawal sensitivity. 

 

If you cannot tolerate medication that dampens MCAS symptoms, I would say that I can see two options:

1. Reinstate a small dose of lexapro- there is no guarantee that this will work and that you will not have a bad reaction to this- I'd be very, very wary of doing this.
2. Give it more time. Often with difficult health conditions like MCAS and others, you're resigned to giving things time to improve anyway even when not in withdrawal, my hope would be that you do improve in time and lot of this is triggered by withdrawal, but I do think it's worth continuing to engage with specialist clinicians about what else is possible in terms of MCAS symptoms, although I'd exercise a lot of caution trying further drugs.

 

I hope that in time your health improves. It's good that you have managed to work towards graduating through this.

Welcome to the forum!

 

I have nothing to add to what Luke has said other to say I agree with Luke, option 1 wouldnt be what I would go for. You clearly have developed a lack of tolerance to most things. I don't think what you are mostly experiencing is WD in the sense your brain is missing the drug. It appears you have developed a very sensitive system which is rejecting many things. Adding back Lexapro wouldnt likely help with this IMO and probably would make you worse as I suspect your body will reject it, if its rejecting most foods!

 

I would just try to eat anything you can manage, which you are doing, your body needs as much vits and minerals as you can get in it. I know this is tough but I hope in time your body, as it heals, can start to cope with more food/groups. Time is your friend. It can feel endless this healing process but the body is designed to heal and yours will do this for you. 

 

We are all here for you.

 

Chgippy

Hello @StDymphna

I'm sorry you're going through this. I also developed a histamine intolerance when my WD started. In the first months I honestly thought I had MCAS and visited so many doctors and specialists. But in my country almost no one knows about MCAS and it is basically impossible to get a diagnosis.

I only managed to get a DAO test and through that a doctor concluded I "probably" have a histamine intolerance. I've been eating low histamine since the beginning of my WD and trying to work on my DAO with green pea sprouts.

 

As time went on I kind of decided to forget about MCAS and just accept it as a part of WD. I've read/heard so many WD stories with people having the same issues (intolerances/allergies/reactions) and it got better for them as time went on. So, I am hoping the same will be for us. 🙏🏻

 

I also have muscle twitches, buzzing in my head when falling asleep and lights flashing with eyes closed. These symptoms are not uncommon. I've seen other people mentioning them.

I don't have reactions to clothes and fabrics (yet!) but I've heard/seen many people that do. Don't worry, you are not an isolated case!

 

Also, glad to meet a fellow catholic. ❤️

Even though, my faith has been severly shaken throughout WD... It's hard to feel connection with God (or anything really) while experiencing derealization/depersonalization. Feels like I'm in a "Godless territory" and abandoned/punished by God.

Glad your faith is helping you. ❤️🙏🏻

6 hours ago, Luke said:

Welcome to the forum. I'm really sorry to hear about the difficult health issues you've been having since stopping Lexapro.

 

  

 

The first thing to say is that I believe you, and you are welcome to share the other symptoms.

 

Secondly, although I have not experienced everything you have (mostly no food sensitivities and some of your physical symptoms), I have experienced some of it as part of withdrawal, such as the overreaction to physical stimuli (I really struggled with showering for more than a year), and the flaring up of some of the more bizarre, dysfunctional symptoms when trying to sleep. This is something that still happens to me, but less so now.

 

  

 

It's hard to know. All I will say is that at coming up to two years off, there is still precedent for healing.

 

My experience and symptoms have mostly been different to yours, but I was in a mostly pretty terrible state form 18-24months, and then most of the time towards 30 months was still pretty bad and I was non functional.

 

However, in 6 weeks it will be 3 years off for me, and I am improving steadily all the time, with setbacks. Our symptoms were mostly different as I said, however I was extremely ill and really quite disabled, and now I am not, so recovery from severe symptoms that seem unrecoverable is possible, when they are caused by withdrawing from these drugs.

 

 

I don't know much about MCAS, but what I would say is that it is entirely possible that much of this is withdrawal-related, and the reaction and worsening of withdrawal symptoms after trying the new drug sounds like "classic" withdrawal sensitivity. 

 

If you cannot tolerate medication that dampens MCAS symptoms, I would say that I can see two options:

1. Reinstate a small dose of lexapro- there is no guarantee that this will work and that you will not have a bad reaction to this- I'd be very, very wary of doing this.
2. Give it more time. Often with difficult health conditions like MCAS and others, you're resigned to giving things time to improve anyway even when not in withdrawal, my hope would be that you do improve in time and lot of this is triggered by withdrawal, but I do think it's worth continuing to engage with specialist clinicians about what else is possible in terms of MCAS symptoms, although I'd exercise a lot of caution trying further drugs.

 

I hope that in time your health improves. It's good that you have managed to work towards graduating through this.

Thank you very much for your reply and encouragement. I am glad to hear that you are finally beginning to improve, it sounded like you were pretty debilitated for so long.

5 hours ago, Marina said:

Hello @StDymphna

I'm sorry you're going through this. I also developed a histamine intolerance when my WD started. In the first months I honestly thought I had MCAS and visited so many doctors and specialists. But in my country almost no one knows about MCAS and it is basically impossible to get a diagnosis.

I only managed to get a DAO test and through that a doctor concluded I "probably" have a histamine intolerance. I've been eating low histamine since the beginning of my WD and trying to work on my DAO with green pea sprouts.

 

As time went on I kind of decided to forget about MCAS and just accept it as a part of WD. I've read/heard so many WD stories with people having the same issues (intolerances/allergies/reactions) and it got better for them as time went on. So, I am hoping the same will be for us. 🙏🏻

 

I also have muscle twitches, buzzing in my head when falling asleep and lights flashing with eyes closed. These symptoms are not uncommon. I've seen other people mentioning them.

I don't have reactions to clothes and fabrics (yet!) but I've heard/seen many people that do. Don't worry, you are not an isolated case!

 

Also, glad to meet a fellow catholic. ❤️

Even though, my faith has been severly shaken throughout WD... It's hard to feel connection with God (or anything really) while experiencing derealization/depersonalization. Feels like I'm in a "Godless territory" and abandoned/punished by God.

Glad your faith is helping you. ❤️🙏🏻

Yes, I really hope we do improve. Sometimes it feels like it won't because my symptoms feel so normal now and there hasn't really been any changes.. It's good to hear that I am not alone with some of those symptoms you have described. I am glad you finally got someone to diagnose you with histamine intolerance. Do you feel like the changes you have made are helping it improve? Also, do you have other histamine-like symptoms even when not eating food? I have almost a constant drip in the back of my throat and when I look in the mirror (sorry if this sounds gross) I see white spit in the back of my throat. It's also really strange that this happens more when I am concentrating, like reading, praying, and even trying to fall asleep.

 

I am so sorry you are experiencing derealization/depersonalization. I had that mostly at the beginning of withdrawal and it truly feels like life becomes meaningless. I can also relate to feeling abandoned by God. Last night I was angry at God, and usually I am a pretty steady person and know I must resign myself to His will, but last night, being home on spring break with my future looming ahead of me, the pressure to get a job and to show that I am doing something with my life, but also the intense fear about my body and my health caused me to snap. I was thinking of the Surrender Novena: "Jesus I surrender myself to You, take care of everything." and feeling frustrated because I'm like, well I don't see You taking care of it. It's been two years just about, what am I supposed to do? I very much am the type of person that likes clear instructions and direction before acting and sometimes I wish God would just tell me what I'm supposed to do. You will be in my prayers!

6 hours ago, Chippy said:

Welcome to the forum!

 

I have nothing to add to what Luke has said other to say I agree with Luke, option 1 wouldnt be what I would go for. You clearly have developed a lack of tolerance to most things. I don't think what you are mostly experiencing is WD in the sense your brain is missing the drug. It appears you have developed a very sensitive system which is rejecting many things. Adding back Lexapro wouldnt likely help with this IMO and probably would make you worse as I suspect your body will reject it, if its rejecting most foods!

 

I would just try to eat anything you can manage, which you are doing, your body needs as much vits and minerals as you can get in it. I know this is tough but I hope in time your body, as it heals, can start to cope with more food/groups. Time is your friend. It can feel endless this healing process but the body is designed to heal and yours will do this for you. 

 

We are all here for you.

 

Chgippy

Thank you for your kind comment. Yeah, I am definitely not going to touch Lexapro.

@StDymphna

 

I do feel like my diet helped me to reduce a lot of physical symptoms, but when I'm in a wave or a flare-up I still get all the symptoms no matter what. Stress and our monthly hormonal changes affect the histamine a lot. So, then not even proper diet helps.

I will probably check my DAO levels again soon to see if there has been any change. I really hope it's getting better but who knows.

Today I took iron supplement and vitamin C and didn't react (yet) which I took as a win. Months ago I immediately reacted to iron supplement with terrible pain in my digestive tract + nausea. And it lasted for 24 hours just after one capsule. I hope I continue to tolerate the supplement because my iron levels are dangerously low and it's hard to get iron in through food with such a restricted diet.

 

I think I mostly react to food. Sometimes I notice I am blushed even when not eating, though. 🤔

But, as I said above, I get a flare-up during different hormonal changes in my monthly cycle no matter the food.

 

Hmm, perhaps in your case concentraion raises histamine...? We are very sensitive in this state so maybe even such "benign activities" seem stressfull to our nervous system!

 

I can relate to your prayer and conversation with God - I talk too Him too often that way. 🥺 I hope His plan starts making sense soon. 🙏🏻❤️

 

Thank you! I'll pray for you too. ❤️

Did you notice any other symptoms or issues between April and July 2024? As in, in between stopping the drug and developing reactions to various foods?

18 hours ago, Luke said:

Did you notice any other symptoms or issues between April and July 2024? As in, in between stopping the drug and developing reactions to various foods?

Oh yeah, I had terrible, classic W/D issues. But nothing related to my food reactions. I suffered hypersensitivity reactions to things for sure, but the food thing literally happened to me overnight...

@StDymphna Okay, that further reinforces in my mind that this is quite likely to be withdrawal-linked.

 

That is no guarantee that it isn't a secondary health condition triggered by it, but I wouldn't be surprised at all if it improved eventually with further time off of psychiatric medications. You'll no doubt be aware that on SA there were a number of members with various food and substance sensitivities, histamine issues and even suspecting MCAS who did go on to improve.

 

I understand that it must be quite difficult trying to decide whether to act upon symptoms of that nature or see if more time improves them.

 

Have you observed any trends or change in your sensitivities over time?

 

I should add that I'm very much not an expert in any of this, and fortunately did not experience much of it myself. I have not had food sensitivities to any meaningful degree.

 

 

On 3/14/2026 at 5:11 AM, Luke said:

@StDymphna Okay, that further reinforces in my mind that this is quite likely to be withdrawal-linked.

 

That is no guarantee that it isn't a secondary health condition triggered by it, but I wouldn't be surprised at all if it improved eventually with further time off of psychiatric medications. You'll no doubt be aware that on SA there were a number of members with various food and substance sensitivities, histamine issues and even suspecting MCAS who did go on to improve.

 

I understand that it must be quite difficult trying to decide whether to act upon symptoms of that nature or see if more time improves them.

 

Have you observed any trends or change in your sensitivities over time?

 

I should add that I'm very much not an expert in any of this, and fortunately did not experience much of it myself. I have not had food sensitivities to any meaningful degree.

 

 

I have observed some trends of consistent symptoms and honestly there has not been much change unfortunately. I do not know if it will go away with W/D, my body just seems fundamentally different now or something. There aren't any "waves" where the sensitivities are lessened or changed very much. Even just looking at my skin, pressure or moving the muscles in my face makes it red easily.. But yeah it is quite difficult to discern what I am going to do next. Especially as I will be done with college in May, do I just work or do things for my health I know will not help me?? Idk I am just lost and hoping time will heal me. I'm coming up on two years here, April 5th is when I CTed, and July 2024 is when I started eating in such a restricted way..

I don't know your situation, so it's difficult to comment. I think it's worth focusing on your health and wellbeing as much as you can, and hoping to improve in time, but obviously life also happens.

feeling so discouraged. I don't know what to do. I've only been eating three foods for almost two years I believe my MCAS was caused by withdrawal, yet I still feel like my reactions to meds or supplements are hypersensitive withdrawal reactions. I tried an oral medication called cromolyn sodium today again, which is supposed to help with MCAS, but after one drop I am feeling sleepy, emotionally numb, and just out of it. I don't think this is a normal effect of the medication and rather a result of having a hypersensitive body in W/D?

6 hours ago, StDymphna said:

feeling so discouraged. I don't know what to do. I've only been eating three foods for almost two years I believe my MCAS was caused by withdrawal, yet I still feel like my reactions to meds or supplements are hypersensitive withdrawal reactions. I tried an oral medication called cromolyn sodium today again, which is supposed to help with MCAS, but after one drop I am feeling sleepy, emotionally numb, and just out of it. I don't think this is a normal effect of the medication and rather a result of having a hypersensitive body in W/D?

I am so very sorry to hear things are still so tough for you. I would be careful about taking things, we all tend to react badly to supplements and various substances, I know you are particularly sensitive so perhaps best avoided. Sending lots of healing vibes your way, hope things settle down some what in the coming weeks and months,

@StDymphna From what I've read on Reddit about MCAS - yes, even though those supplements are supposed to help not all people with MCAS react to it well.

It's hard to say if it is MCAS or WD making your body react this way. The common thing with both is a sensitized nervous system. And perhaps MCAS is a manifestation of WD/sensitized nervous system and in time, as you heal, it will all get better and perhaps you won't have MCAS anymore.

If you haven't, please, listen to the podcasts I sent you a few months ago. These two girls/women were in a similar situation as you due to WD - only down to a few foods and in time they healed and now they can eat anything they want. I believe in such a future for you too (and myself). 🙏🏻❤️

thanks for the reminder, I am going to listen to that today

I listened to it! It was cool to see how she also struggled with food sensitivity but it went away. I wish she gave more details about that in particular and the timeline healing her reactions. I am getting discouraged that I will have this forever because since all of this started July 2024 there has been virtually no change in my symptoms. Isn't withdrawal supposed to get better over time? I am worried I will be eating three foods forever because my body is so sensitive to everything it is really scary and I am losing hope because I cannot take medication to treat MCAS while in withdrawal..

@StDymphna Yes, things get better but it's all individual and kind of slow and gradual. Your nervous system has been injured/sensitized and it will take some time for it to get better again. I know it's a lot, but it's not forever and hopeless.

If you remember the other success stories I sent you; it took about 3 or 4 years for Seer for his intolerances/sensitivities to go and Ten0275 - it also took him some years, but it eventually did go away.

We have to believe we'll get better even though it's at snail's pace. 🙏🏻❤️

Thank you, it was good to have a look at those stories again. Really really appreciate you sending me those specific resources.

@StDymphna I am happy to help and offer some reassurance. 😊 It's the stories that keep me going as well. ❤️🙏🏻

Has anyone had success with really late reinstatement? Or is this generally not recommended

@StDymphna I honestly don't think it's a good idea... I re-instated Zoloft 9 months after and I think that was a huge mistake. After that I started having health issues every couple of months. And here I am now, in my second withdrawal with so many mental and physical issues...

That re-instatement resolved my mental problems but definitely destroyed my health (thyroid, digestion, eyes...).

@StDymphna Re-instatement most probably won't help with MCAS/histamine issues. A lot of people developed these issues while still on the full dose (myself, Ariella Sharf (Instagram), Ten0275 (from the old forum) - while tapering...).

The fact is these drugs create these issues. Give your body time to heal itself.

4 hours ago, StDymphna said:

Has anyone had success with really late reinstatement? Or is this generally not recommended

Some have and it can help, but it is more risky the further out you go. RI should be done at a very small dose not at a large dose, this generally not only has a better chance of success but mitigates the risk of a reaction.

I agree with @Marina I don't think it is worth it and your symptoms are unlikely in my opinion to resolve by doing so. I think time is the answer here IMO.