I've had reflux once before, and this pain is not reflux pain, it's neuropathic the way it feels, exactly like a physical nerve injury (Ive have those before too, so I know the difference and it's very different)

The burning pain went long ago in my esophagus, but I can oddly taste though my throat and esophagus, as in actually taste food inside myself as it goes down as if my tongue was placed inside my esophagus and back of throat.
I know we all have taste receptors along much of our upper GI track, but they aren't wired to the conscious perception, but that has appeared to have happened to me among other crossed or previously subconscious sensory inputs coming into perception.

I can hear changes in my visual field as shifts in the pitch and intensity of the hiss in my tinitus. I can consciously control some aspects of the HPPD/VSS and I was for a long time able to start the sweat glands in my hands when I noticed they got too dry just by noticing and looking at them (had very bad autonomic dysregulation at the start, with skin moisture and sweating heavily effected, especially in the hands)

So I think all sensory inputs were garbled and intermixed/cross wired and that causes all kinds of weird sensory changes, and I think the burning and aching pains are part of that messed up sensory pathways and or loss of certain pathways might result in phantom sensations and pains, much like how a lost limb does.

Also, the burning pain I had in my upper GI was very mild compared to the rest of my body and even then, it was the very same identical neuropathic like pain and all pain locations change to different versions of neuro pain all of the time, min by min, hour by hour a lot of days, and all areas change together. I never had one type of burning in my place and then another type somewhere else, they are all the same pain at the same time, even though the exact feeling of pain changes all of the time. Sometimes its a sharp stinging burn, sometimes it's raw, sometimes it's a heat/hot like burn, other times it's like a caustic soda chemical like burn, sometimes more like sunburn, other times it's like a nerve compression hot like burning pain. Then I go though periods of absolute bone marrow aching pain, often it flip flops from neuropathic pains, to just flu like intense bone and muscle dull aching that comes in large rhythmic pulses.

I find that PE, PGAD, BMS and RSL in me personally have been all linked together in one way or another.

On 7/8/2026 at 2:50 AM, 6Eggs said:

Yep, UK is leading the way with PWS and also PSSD too.

Yes, and my point is that this has resulted in essentially 0 meaningful change to how these drugs are prescribed, used, perceived by doctors, perceived by the public etc

The patient experience in the UK is not better at all, unfortunately.

12 hours ago, 6Eggs said:

I've had reflux once before, and this pain is not reflux pain, it's neuropathic the way it feels, exactly like a physical nerve injury (Ive have those before too, so I know the difference and it's very different)

I know what you mean. I understand. All these altered sensations you get are a big mystery but the only specific thing i wanted to express is that your altered taste and BMS were probably caused by acid reflux and are probably not a part of neuropathy feelings or altered sensory input. Don't you think?

No, I don't think either of those were from reflux, I had no relux issues during my whole WD, only bowel and bladder control issues that resulted in inconsistent number 2s, only once when I used paxil for a short while as a teen had I experienced relux, I had it then and heartburn immediately after each tablet. That is the distinct hydrochloric acid taste and irritation. This however is the same as my other neuo pains.

Altered taste coincided with my visual hallucination (perceptional distortions fractals etc) during the end stages of the moclobemide taper along with the PGAD and PE it produced too. In fact, 80% of my pain and sensory issues came from the moclobemide WD rather than the Rexulti, even though the Rexulti did initiate those symptoms at the beginning, those symptoms improved over time as I tapered the Rexulti, but once I got started on tapering the moclobemide, it was obvious it produced these symptoms the lower the dose got. The altered taste was a hallucination of sorts, I could taste something like co2 gas (soda water) when I had a flare up in my other sensory symptoms. I also primarily drink soda water as my fluid intake, so it is no surprise my brain went with that taste to hallucinate over anything else.

FYI, hallucinations are well documented with MAOI withdrawal which Moclobemide is one, so all this makes total sense to me.

I no longer have altered or phantom taste, but I still get mild burning mouth when my legs and skin burn and I also get PE and genital hypersensitivity, soft glans, ED etc... all at the same time.

23 hours ago, Luke said:

Yes, and my point is that this has resulted in essentially 0 meaningful change to how these drugs are prescribed, used, perceived by doctors, perceived by the public etc

The patient experience in the UK is not better at all, unfortunately.

That's a real shame.

They need to treat these drugs the same way they treat thalidomide. Useful and even life saving in certain circumstances, but high risk of catastrophic adverse effects.

@6Eggs Thanks for sharing everything? I'm asking you, because in my case everything is so similar, even though I have never had PGAD or PSSD or hallucinations.

But you have never visit a gastroenterologist? Never had an endoscopy?

You mentioned you had "CO2 aftertaste"? Have you ever had plastic aftertaste after eating something from plastic package? Like yogurt?

Edited July 10Jul 10 by The Dust

No it was just the prickly CO2 taste and feel and it wasn't really an aftertaste, rather was there without eating or drinking.

Sometimes I could swear that I could taste a phantom sweet/sugary taste in my arms and legs during the worst parts of the Mocbobemide withdrawal, it was weird AF.

Ok, I see what you mean, but...

7 minutes ago, 6Eggs said:

Sometimes I could swear that I could taste a phantom sweet/sugary taste in my arms and legs

How did it looked like? If you touched your arm with you tongue or what?

Well no, of course not. I had the sensation of these tastes in those areas of the body, kind of how WD itchiness is felt in multiple places at once but are always the same itch, often not felt where the itch actually is, you have to scratch around randomly until you find the place that that actually gives the relief which is never where you feel it. Essentially it's like your brain crosses wires and "relocates" the sensory experience to another body area that is not where the actual location of the sensory input is.

It's a sensory/body map issue, I can only assume it's same sort of neurology that people with phantom limb sensation/pain have or that foreign limb syndrome people have. I had that extreme foreign body part sensation and thoughts about my genitals when they were completely numb, it was an absolutely horrifying and consuming mental loop that you can't get out of, I had it really bad in my lower jaw and mouth too, It eventually went away in all areas after reinstating the rexulti and re-tapering much slower but it took over a year at least.

Referring to several posts back, I think it might be related to problems with the thalamus that occurred when many of my sensory inputs were severed, and my brain upon regaining sensory input over time has had real trouble rewiring signalling to the right places and in my opinion on my own conscious experience, I think a lot of it is cross wired now. Thalamocortical dysrhythmia is thought to be the underpinnings of phantom or neurogenic pain, with sensory deprivation/loss thought to be one of the triggers and drug withdrawal/addiction is another largely studied cause from what I read up on the matter, I seemed to have had both triggering condition that may have disrupted and de-synchronized those key brain networks. Oh and VSS/HPPD is part of that Thalamocortical dysrhythmia framework too and VSS/HPPD have been a huge part of my WD the whole time. This is my best educated guess with all the info I have researched over the last few years so far, but no one can confirm or deny that for me though, as I'll never have access to those sorts of research clinics or tools with common tools like MRI and neurological exams not showing much.

@6Eggs Yes, you explained very well, but as you see, you can spend millions and there will be no expert who will solve your puzzle. Your explanations makes sense, but who know what it was... As @Luke mentioned, the diagnose FND doesn't say anything, it has just a pragmatic function. You put a lot of efforts to get a diagnosis, didn't you?

It's also hard to say if it was something like altered neurology or WD symthoms or anything else.

There is also some another dilemma. Were your sensations phantom and/or trans-located or they (or some of them) were just - altered and gained...

All of the above for the last one. I had none of these symptoms before taking these drugs, and pretty much none of them before attempting to get off them, so they are def part of the WD spectrum of symptoms. I gained the symptoms, and they constantly mutate, come and go and move around my body.

The worst ones being the pain mostly stick around their normal locations, but they do vary exactly where. I suppose their intensity as it goes up also increases their area of reach, spreading out farther from the epicenter so to speak.

1 hour ago, 6Eggs said:

All of the above for the last one. I had none of these symptoms before taking these drugs, and pretty much none of them before attempting to get off them, so they are def part of the WD spectrum of symptoms. I gained the symptoms, and they constantly mutate, come and go and move around my body.

Hopefully this means that in time they will fade and improve.

@6Eggs Thank you for responding. Your case is so creepy and mysterious. I was asking, because I have/had something similar.

You read a lot about these things... But what do you think about getting similar issues years after quitting everything. I didn't take anything since 2018, but I get these cramps, jerking, burns and a bit of VSS and strong tinnitus last year. Do you think that my brain is making his "map of sensation" again and it is confused or what?

Yes I think it's pretty normal for new and random symptoms to first appear so long after the initial WD. I have had 100s if not 1000s of one off or temporary symptoms that came and went, some never to been seen again, some come back years later again for a short while. I had some episode of sensory/motor focal seizure maybe? and extreme panic maybe a month ago for a few min and all the symptoms faded by morning. I have not had that since late 2021 I am pressure sure.

I get changing and new versions of old symptoms come up all of the time, which indicates whatever process in my brain that is attempting to return back to normal is still progressing.

Although I have still many of the "same" symptoms from the beginning, the versions of those now are not exactly like they were like a year ago, and those were not exactly the same as the year before that and so forth. Comparing now to the beginning, wayyy different and lots of progress. It just doesn't always feel like it because I often forget how bloody horrific it was that first couple of years.

I like to say I didn't start at 0, I started at negative 50, so it's taken multiple years to even progress to the 0 I am at now, as an analogy if that makes sense?

On 7/12/2026 at 6:25 PM, Luke said:

Hopefully this means that in time they will fade and improve.

I think it will, a lot of things have and some really scary symptoms are for all intents and purposes gone.

I think that the severity of the initial WD symptoms probably influence the duration of the recovery in a lot of cases.

@6Eggs Thanks, your analogy makes sense.

@6Eggs Sorry, but I have an another question. You survived so many different symthoms, but have you ever experienced the filing of having flu-like symthoms? It feels like you have fever or cold or like you are infected?

Edited July 13Jul 13 by The Dust

On 7/14/2026 at 2:45 AM, The Dust said:

@6Eggs Sorry, but I have an another question. You survived so many different symthoms, but have you ever experienced the filing of having flu-like symthoms? It feels like you have fever or cold or like you are infected?

Yes, a lot and only in the last 2-3 years after coming off the moclobemide, didn't happen with the Rexulti as far as I could tell though, but my understanding is the flu like symptoms are synonymous with ADs rather than APs.


Also, I figured I might post this information page I found a while back with what appears to be more well rounded and up to date on WD syndrome, at least what it is and it's typical symptoms. There is a nice handy table of the different classes of ADs and the types of symptoms common. It's not super in depth but does show that data on symptoms have been known for some time, just it's always wasn't always public and often fragmented. Nice to see some tables like this to get context on how WD presents and how there are sometimes subtle differences between the drug classes and forms of each.

Mocbobemide is classed as an MAOI which on this table appears to be one of the worse ones for neurological symptoms, mentioned in the article to have been thought as psychosomatic in the past when those older classes were more common, that word is the core to FND theory.

This actually a really good read and I am thinking of forwarding this to my neuro rehab/FND people once I start going there, as they know my med history, but admitted that they hadn't really heard of this condition in the context of psych meds.

https://consultqd.clevelandclinic.org/discontinuing-antidepressants-pearls-and-pitfalls

On 7/13/2026 at 12:14 PM, 6Eggs said:

I think it will, a lot of things have and some really scary symptoms are for all intents and purposes gone.

I think that the severity of the initial WD symptoms probably influence the duration of the recovery in a lot of cases.

Maybe. I had extremely severe symptoms for a long time, so it makes sense to me that it has taken a long time to begin to meaningfully improve.

That's def something I have noticed among other people as well, the more severe it is at the beginning, the longer it seems to take to see subjective improvement.

While looking into nuts and bolts into pre-sleep itching which I have had for years on and off since I first started meds back in 2015, AI research suggest it might be the sensory aspect of akathisia and lists many common sensory forms it comes from and surprisingly, I didn't even consider that most of my sensory and inner phyical/emotional states to be akathisia, but sure looks similar.


Some interesting insights and could help explain why my case is so servery dominated by sensory and pain issues more than the norm, makes sense given the dopamine targets of both drugs.

When giving more context to how the symptoms evolved over time and what I did to taper and for how long, it says that it changes what the condition is most likely, came back with PWS. The delayed worsening of symptoms long after they were stopped is apparently a hallmark it sees with the data available to it.

Interesting that thalamocortical dysrhythmia is brought up as a possible mechanism to the sensory problems within the WD itself which is what I came up with all by myself a little while ago.

I don't take any of this at face value is it might be well off the mark and talking nonsense, but handy tool for getting your head around all the fragmented ideas and data out there.

@6Eggs I'm sorry for making you tired by asking so many questions, but your story is specific and it remind me of my symthoms.

I know that your situation was later described as FND. You put a lot of effort so find out anything, but have you done every possible neurological test?

Yes, everything under the sun except for a SFN biopsy which I agree with my doctor it's not worth the time as my symptoms remit so often and way too quickly to be SFN even though many of the symptoms at a glance are the same as SFN.

I had probably 50+ blood tests looking for all kinds of rare markers for nervous system diseases, conditions, auto immune of all kinds, antibodies of the nervous system. MS screening, they looked at GBS/CIDP. Extensive nerve conduction studies, head to toe MRIs, multiple CT scans with dyes to see the brain's blood vessels, multiple reflex studies.

All of these were not only normal, but above average, indicating great health. So FND is often used, but they are using my drug withdrawal interchangeably with the FND in most of my medical records and notes under the FND banner, a lot of them mention withdrawal outright in the notes. But like Luke has said, not many counties recognize PWS or withdrawal syndromes as an official medical condition, FND is the closest one we have here in Aus in mainstream medical, only in private drug and alcohol rehab clinics do they use PWS diagnosis offically, but none of those are pubic as far as I know. I've never been able to afford private health insurance, so I used everything public. I am def not complaining about it, the public health has really looked after me well considering.

The only test I would love to have is an EEG, PET scan or an fMRI where you can see brain activity and changes to the neurotransmitter systems. But since I am ASD, it would be hard to pick what is from the drugs and what is ASD since ASD brains are functionally significantly different enough that it would appear abnormal even if I was never ill with PWS, I don't have a baseline for any of those. But that said, an EEG might show subtle changes, as far as I know, the models used to see this sort of things are only in research settings, not at the local hospital or anything accessible to a regular person. Even if I could see what's wrong, what could anyone even do without making it worse?

I had tried gabapentin early on with advice from my doc, it immediately reacted paradoxically to the one and only dose and sent me to the hospital. Proof that PWS should be left alone. Weirdly, diazepam actually made me feel better as it was used a few times early on during some of my worst crisis points in the WD. Same GABA system, different pharmacological pathways, opposite results. Makes no sense to me, but shows that PWS is unpredictable and unstable by nature.

@6Eggs Thanks.

If we wanted to summarize your story, we could say: so far, you’ve experienced every symptom imaginable, and you’ve gone through every test that could possibly be relevant. Because of that, no one else with a history of these medications would really need to go through all of this again - you’ve practically done the investigation for everyone else here...

I am def not complaining about it, the public health has really looked after me well considering.

A little bit surprising... You have never heard any ad hominem argument like "you are not a doctor" or heard things like "everything is just mental" or being called a hypochondriac? I hope not, but you had some good luck in this respect if you had not things like that

What about SPECT scan?

have you ever visit a gastroenterologist because of you digestion problems?

Edited July 24Jul 24 by The Dust