u/caffeinehell

Its all too common in stories where basically someone is very high functioning all their life and then suddenly they take some substance or get a virus or even in rare cases from an intense stressor or out of nowhere develop debilitating anhedonia that seems to respond to nothing. The system just snaps. . Its like a nervous system shur down type thing but the reality is the meme “oh ignore it, do nervous system regulation exercises, etc” does not work

This is clearly a different entity than whatever is being called as depressive anhedonia.

Often times there are other autonomic symptoms too like gastroparesis, exercise intolerance, POTS, and more. Some people develop sensitivities where one small thing causes the system to crash further

Its a very severe state and psychiatry is completely missing it. Even the “anhedonia” literature does not describe this kind of severity of consummatory anhedonia with substance blockage, blank mind, sensitivities. They still list CBT and behavior activation or the new meme “positive affect therapy” which are all just insulting for what is otherwise basically a medical emergency.

What is it going to take for real recognition of this severe state?

Its one of the most gaslit things in the field right now.

So many people are told to just “get a hobby”, “do therapy” by providers. And so on.

Its like doctors don’t truly understand the condition of consummatory anhedonia. The most severe cases are in constant agony, can’t even feel basic comfort in the bedsheets or taking a hot shower

And somehow the field thinks therapy, behavior activation and hobbies fixes this? Most medicatiojs also do not target it and there is often a substance blockage. The ANS doesn’t function well.

What is it going to take for this condition to be more widely recognized and properly treated?

Its NOT loss of interest motivation type of depressive anhedonia. And gets confused with that. Its also not related to any belief patterns or anything. Its purely a neurobiological state. Right now the way it is, it seems like only ECT treats such a severe state. There are no medications for consummatory anhedonia, only anticipatory.

Horrific symptom, what to even do about it? Prevents social interaction completely. No ideas to engage, no complex thoughts and verbal fluency and vocabulary. Sensory input doesnt trigger daydreaming

What helped with it if you had it?

Like brain fog/blank mind and anhedonia?

Mine get a lot worse and do not rebound from flares

Post hoc meaning after a ton of reactions have already occurred.

Lets say you get on mast cell stabilizers and everything to try to prevent future reactions

But each reaction you already had caused a massive crash.

What do you do about the crash? And especially what if the crash was neuropsychiatric neurocognitive symptoms like severe anhedonia which has no treatments and causes SI?

I have an MCAS diagnosis and I will be getting on Xolair soon for insanely high 2000+ IgE.

The thing is at this point im so severe in anhedonia that treating this is not going to resolve it.

My anhedonia became progressively more severe from abrupt crashes over a few years. I now realize that a lot of these probably were mast cell reactions.

My brain feels like it does not have the plasticity resilience to recover from merely stabilizing the mast cells now. Because I have severe consummatory anhedonia and that involves blockage to substances too (not getting their reward effects).

I had done ECT in Fall 2025 and got to 30% better only to crash a few weeks later from a reaction to fried food. Physical symptoms like itching went away but mental persisted. Mentally anhedonia crashing also causes an anxiety spiral because the symptom is a nightmare, and I cannot calm down without access to pleasure. I *need* pleasure to be calm and comfortable. It’s the most anxiolytic thing in existence.

Im not sure what to do in this situation. Its a major problem when anhedonia is a presenting symptom, because this symptom can crash due to MCAS but not necessarily get resolved post hoc from stabilizers unlike other physical symptoms like itching

The only thing I can come up with after talking to doctors is to first get on Xolair, support the body with nutrients and then do ECT or psychedelics in parallel for the severe anhedonia aspect

I dont mean loss of interest type anhedonia. I dont have an issue with interest nor motivation. I mean the type where the actual signal doesnt land in the head. No buzz from sensory inputs. Not able to feel atmosphere and even passive pleasure gone, which creates constant restlessness

Its not the type thats like “oh just do what you used to enjoy”, exercise get sun bs. That is useless. Its the “actively can’t exist due to lacking the sensory input stimulation” kind. Not about specific activities, its about just existing in peace kind. I also have exercise intolerance anyways from POTS. I get sunlight already and try walks.

Especially when substances are blocked what can be done? So far it seems like the field only conventionally has ECT.

And the thing with psychedelics at least for me is that they don’t bring back the consummatory aspect. I have done Aya and after it while I did get an afterglow where my general well being and anticipatory and anxiety about the condition itself were improved significantly like 70%, blank mind and consummatory tone only improved by +10%. And it only lasted a week.

The actual “brain jizz” and blank mind is the issue. And I know its not just dopamine. Its like something is fundamentally cut off ever since my rifax crash 1.5 years ago. I didn’t have this feeling of the wire being cut before. Its like even if something tries to come, it doesnt land. I did improve my gut health and did 5 FMT last year and confirmed on testing my gut improved but the issue still persisted.

The consummatory aspect is significantly gating everything. Its like im not getting that release and comfort.

Blank mind as well, no creativity descriptive cognition is completely shot. Ideas and access to self are gone

I also have mast cell stuff going on and I can have a sudden crash from 15% tone to 0% even if I say eat the wrong thing or get exposed to too much heat or something. And the problem is mast cell stabilizers don’t work “after the fact”, and reactions are unpredictable. It feels like essentially central sensitization but to anhedonia for me. Once they happen it’s like GG because. The anhedonic phenotype of MCAS is truly a nightmare. I have very high IgE like 2000+ and am considering getting on Xolair for this soon. I also have gastroparesis.

I mention ANS because I do notice small ANS fluctuations impact this. Like even eating affects the tone and lowers it, and I already can’t eat much due to the food fullness issue. And climbing stairs multiple times in a row triggered adrenaline and that was also increasing blunting, now I do compression stuff and electrolytes for this. The issue is though if my system gets triggered it doesnt bounce back. Its a nightmare. And those hits added over time

I also believe that cell danger response is a big part of the problem, but there are no fixes for this available as Suramin is not available.

Last year the biggest thing that helped was IV methylprednisone 1 gram 3 day pulse, and I got kind of manic without emotions a few days later, and then lithium and IV NAD smoothed that out and brought atmosphere. But it didnt last and I couldnt replicate.

It seems like my system is stuck in some deep attractor state.

This is like basic things such as comfort in bedsheets, merely sitting down, etc. Lacking comfort leads to a feeling of constant restlessness and it feels like an emergency 24/7 where a solution asap is needed. Like you can’t even chill due to the anhedonia severity

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Im running into major problems with a chronic condition, I need to see clinics that are out of network for medi-cal/medicaid. But the big issue is while I can pay out of pocket, they will not accept money from me.

Its ridiculous. And also no in network provider offers the service.

What can I do? Being on medicaid is actually messing me up. And I am unable to work. I would rather just buy a plan, I have support financially. But the problem is I don’t qualify for covered CA and also I don’t have any way to trigger a special enrollment period.

I also cannot wait for the open enrollment, thats at the end of the year. I need this sorted out like asap.

Stupid medicaid policies are ruining me. It’s dumb that places can’t accept money from medicaid patients even if you are willing to pay out of pocket. This aspect is complicating things for me.

My symptoms are unbearable anhedonia, cognitive problems like blank mind. Substance blockage. I have crash easily from small things like fried food too and allergies.

I wonder if I need to get on Xolair and see if it removes a load

For some reason my body produces neurocog symptoms and not as many physical ones. Though I do have exercise intolerance shortness of breath issues but they affect me more mentally.

My Total IgE is like 2200+. And last year it was like 3500 IU/mL.

Im talking about the kind of anhedonia where literally you can physically not feel the buzz in the head. It often happens from post viral or post drug illness.

Ive done a bunch of stuff and nothing seems to really work except ECT a bit. And even that is just slight like 30% though it does bring back response to like stims. And the major problem I have is that its not reliable, it can oscillate. A session can make me better but the next worse. Is this normal?

And I just had ECT in the fall but I crashed after a mast cell reaction to something. Its been 5 months and despite trying so much I cannot get out of this crash (due to the blockage) and probably need literally emergency ECT again. But I am concerned about the unreliability and the oscillations from it.

Most things are blocked, the buzz from stimulants or benzos is not there and its not tolerance. And things can improve anticipatory but not the actual consummatory pleasure. Its like the parasympathetic system or vagal nerve just won’t activate properly.

Its a constant state of discomfort and its completely neglected by medicine. This kind of anhedonia isn’t just about not enjoying activities, its where even the passive comfort and pleasure of merely existing and sitting down is gone. Because there is no release in the head and thus it’s a constant state of restlessness. Everyone takes the passive pleasure of existence for granted.

Its ridiculous that medicine is not paying attention to all the sufferers of this and coming up with better solutions

Because the issue is pleasure is what itself regulates the nervous system. It makes me so jealous of people without this symptom because I know I could do it too then if I didn’t have this. I would rather have physical symptoms than neurocog ones as anhedonia/blank mind easily drives one constantly insane. Not being able to truly feel relaxation as relaxation itself is comfort which is pleasure.

At the severe end of true consummatory anhedonia its impossible to do it

For anticipatorg I can see it being possible still as the abilitg to feel the buzz in the head is still intact. With severe consummatory, even substances also stop giving the reward.

What can be done for this conundrum where anhedonia itself stops these techniques from working?

Joy is a massive way to regulate the nervous system and thats how healthy people without even realizing are regulating it. Pleasure is the best medicine but with anhedonia one has been denied access to that.

And no, doing things you used to enjoy doesnt work for the consummatory part nor blank mind.

People say somatic therapy. But that doesnt work because i literally don’t feel much in my body, and I have to make up sensations. Its not helpful. I dont get many ideas in my head due to blank mind either.

I get the sense that people for whom these things work for only have anticipatory anhedonia or low mood/anxiety with consummatory largely intact, and that may as well be a different condition. Motivation or interest isn’t my main issue, the actual buzz in the head is

The only thing that works for the consummatory part is ECT by 30%. Except I ended up crashing back due to MCAS. Its extremely frustrating. And I can’t regulate my nervous system to calm mast cells because of the fucking anhedonia.

TLDR: The conditions of consummatory anhedonia and blank mind itself prevent many nervous system tools from working.