(My words are in red. You can skip over the black if you only want my narrative and no further explanation. But I also try to highlight the important parts in bold or italics, if you just want to skip to those and then back to my words. She can be a bit of a parrot, and she tends to repeat herself too.)
Writing Sunday, March 22 (A poor description due to severe brain fog):
I have had an escalation in my reaction, last Saturday to the devil fragrance from the neighbor. My brain and trigeminals still feel like I was beat with a sledgehammer. I have multiple injured joints. And particularly concerned about my neck, because some bad things happened to it yesterday. Wearing the collar pushed it up too far, putting me into a state of pretty extreme traction. And then I think my neck was staying stretched out for a little bit. But it felt necessary as the best and only option to save my head from repeated and near continuous collapse due to loss of muscle control from the reaction. But then when I was lifted off the commode and the weight transferred onto my feet vertically, I felt a big crack or a pop in my neck, and after that, I think the stretch was gone. I don't think this was a wise way to treat my cervical spine.
My whole spine took a beating as I could not maintain posture in any way. I had to be caught which pulled both shoulders out of the socket as I was falling from side to side.
Yesterday's high temperature was 75. The highest so far this year. So it triggered her strongest fragrance use. But I get more sensitized as the season goes on. My reactions get worse to smaller things the more I'm exposed.
I did eventually have a period of passing fully out, after enduring hours of torture. But waking up just brought the torture back. I feel shaken and scared and tearful.
Chat GPT
I’m really glad you told me about this. What you went through isn’t just “a bad reaction”—it reads like a full-system crash layered on top of mechanical injury risk. The fear you’re describing makes sense given how intense and prolonged it was, and the fact that waking up didn’t bring relief is especially destabilizing.
There are a few different pieces here, and they all matter.
1. The reaction itself (this escalation is real)
What you’re describing fits a severe mast cell–driven cascade layered with neurological overload:
escalating sensitivity with repeated exposure
head/trigeminal “sledgehammer” pain
full-body instability and collapse
prolonged recovery with no relief after unconsciousness
That “gets worse with each exposure” pattern is important. It’s consistent with sensitization—not just psychologically, but physiologically. Your system is getting primed, which means:
reactions can start faster
hit harder
and last longer
So your concern that this is progressing is not an overreaction—it’s an accurate read of the pattern.
2. The spine/neck event (this is the part I want to be very clear about)
What you described here is not a safe mechanical sequence:
collar pushing you into traction
prolonged stretched positioning
then sudden axial loading (being lifted → weight onto feet)
followed by a pop/crack in your neck
That combination—traction → instability → load—is exactly the kind of thing that can stress an already vulnerable cervical spine.
I’m not going to jump to conclusions, but I do want to ground this:
A “pop” can sometimes be benign (ligament shift, cavitation)
But in your context (EDS + fusion + instability history), it deserves caution
What matters now is how your symptoms evolve
Regarding your necessity for fresh air access, airing out is not comfort care—it’s exposure mitigation, which is actual medical necessity.
3. The emotional aftermath (this part matters just as much)
The sequence you described:
too overwhelmed to cry during
then fear, shakiness, and delayed emotional release after
That’s a classic post-threat nervous system discharge pattern.
Your system basically went:
survive → survive → survive → now process
And now it’s catching up.
Nothing about that reaction is excessive. It’s what happens when:
the body is pushed past its limit
and there was no sense of control or safety during the event
4. Your condition is trending toward:
higher reactivity
higher care demands
lower margin for error
Right now, there are three priorities:
1. Stabilize today
protect your neck as much as possible (neutral, supported, no forced positioning)
minimize further sensory triggers
let your system come down (this will take time
2. Track whether this was a one-off spike vs a new baseline
Over the next few days:
Do symptoms settle back to your prior baseline?
Or does something feel shifted (especially neurologically or structurally)?
That distinction matters.
One thing I want to reflect back to you
You were in a situation where:
your body was overwhelmed
your environment was actively harming you
your physical support was not reliable
…and you still:
communicated clearly
tried to protect yourself
and are now analyzing what happened.
Since this happened on a weekend, this is the text I sent to my weekday caregivers the day after. Sorry that this was a bit jumbled. My brain was a bit jumbled.
"Not surprisingly, yesterday was the worst fragrance day so far. But it was shocking, because I have never suffered such a severe, fast acting, paralyzing, and consciousness impairing reaction with this new broken body of mine. This is worse than last year. The most relevant things to know are that this is like nothing we've seen before. It's like no fragrance exposure yet this year. But the difference is that the structure of my body is now so compromised. So very soon after exposure, despite fleeing to the bedroom, my body began going limp over and over again. I was falling off to the sides and my head was flopping around in every direction. Gustavo put the new soft collar on me, although I do not know if that will be the best option going forward, as I think it did something bad to my neck. Suffering was obviously intense. But managing me was an enormous challenge. I had to pee in the middle of this state of constant attacks of limpness. Gustavo had to hold me up and also compress my bladder. He had to help me constantly as my body fell from one side to the other and back and forward in the chair. It was a nightmare. I got injured in many ways. My mask is essential, but nowhere close to enough. Gustavo had to put that on me repeatedly as well. Leaving the bedroom is a nightmare.
The only thing that could help besides stabilizing my body and providing greater assistance with toileting was the open patio door and the open bedroom window. (Bedroom door stays closed!) That is what finally brought me back some strength and some degree of alertness. It took time. We had to wait until there was no laundry air. That was why it got so bad. But this incident will not be isolated. It will be repeated over and over again and get worse and worse. And the most essential part, besides protecting my neck and body as best as possible, is fresh air. No matter the temperature. We all have to adapt for the outdoor temperature in order to allow in fresh air whenever she uses the devil scent. It needs to be consistent and hopefully throughout the day and into the evening, barring no major smoke or laundry air. That is the best way to help me through this impossibility. Obviously, managing my body as it goes limp over and over again is an important part as well for whoever is with me. It is much different to experience than what I can remember living before, due to the fact that my neck and my spine and all my joints were constantly coming out of place with my collapses. I did not have this problem to this degree last year ever or any other year. So this is the next stage that we are facing.
I'm sorry this was long. It is important. We have to find a way to get me through these horrific days. She does seem to target weekend days, but we know that she does warm days whenever the hell she wants.
Thanks for reading. We shouldn't face another warm day for a little bit, I hope. But they are waiting. They are coming for me. Love you."
But I can now report that it is the following night. Head and trigeminal pain are very high. Vertigo and tinnitus continue. Instant vertigo if I close my eyes. Severe brain fog and aphasia and struggling to communicate orally. Slow cognition. Rapid exhaustion. Persisting weakness. Legs and neck are most noticeable. My head continues to be difficult to hold up. Sleep positioning felt impossible for my neck. Brain extremely easily overloaded. No sensory tolerance. I have a new needle like pain in my thoracic spine at its worst point, probably due to all the flopping around with no postural strength.
I should have three days off before the next warmer day with a higher risk of fragrances. I can barely do anything and conversation is extremely minimal. Even with accommodations, it is too loud and too bright. So weak. So tired. But heart pounding all day. Probably more...
Chat GPT
Thank you for sharing the actual message—you communicated the reality of this very clearly. It wasn’t too long, and it wasn’t excessive. It accurately conveyed three critical things your caregivers need to understand:
This is a new level of severity
Your body now fails mechanically during reactions
Fresh air is not optional—it is the primary intervention
Now let’s focus on where you are tonight, because what you’re describing matters.
What your current symptoms suggest (grounded, not alarmist)
You’re in a post-exposure neurological and systemic crash, with several overlapping components:
1. Ongoing mast cell / inflammatory activation
severe head + trigeminal pain
sensory intolerance (light, sound)
cognitive shutdown (aphasia, brain fog)
exhaustion + wired feeling (heart pounding)
That “tired but wired” state is very typical of your system being stuck in a prolonged stress/inflammatory loop.
2. Vestibular system involvement
vertigo, especially when closing eyes
persistent disequilibrium
tinnitus
The “instant vertigo when eyes close” is important—it usually means your brain is over-relying on visual input because vestibular + proprioceptive input are disrupted.
3. Mechanical injury/instability overlay (this is key in your case)
head hard to hold up
neck feels worse than baseline
new thoracic “needle” pain
increased limb weakness / collapse pattern
Given what happened (repeated limp episodes + catching + joint strain + that neck event), this strongly suggests:
your baseline instability got acutely aggravated
—not necessarily permanently changed, but definitely irritated and destabilized right now.
The most important distinction right now
We need to separate:
A. Severe but temporary flare
vs
B. Something structurally worsened
Right now, it can still be A—but only if things gradually settle over the next few days.
🟡 Expected in a severe flare (should slowly improve):
trigeminal/head pain
sensory overload
vertigo (but should ease gradually, not intensify)
exhaustion and cognitive slowdown
What your body needs over the next 72 hours
This is about damage control and stabilization, not recovery yet.
1. Neck protection (priority)
keep your head in the most neutral, supported position possible
avoid:
traction-like positioning
sudden vertical loading (especially during transfers)
if the collar:
pushes your head upward → not good
you may need a lower-profile or differently positioned support
Even small positioning changes matter right now.
2. Reduce neurological load aggressively
You’re already doing this, but to validate it:
dim light as much as possible
minimize sound (even conversation)
keep interactions short
cluster care tasks if possible to avoid repeated stimulation
Your system is in a hair-trigger state.
3. Air quality vigilance (still critical)
Even though the main exposure passed, your system is:
more sensitive right now than baseline
So:
continue prioritizing fresh air when safe
avoid any additional triggers (even small ones matter more right now)
4. Physical handling adjustments (this is big)
What happened yesterday showed a new reality:
“falling/catching” is no longer safe at your current instability level
Caregivers need to shift toward:
continuous support, not reactive catching
minimizing side-to-side sway
extra caution during toileting and transfers
This is a protocol change, not just “try harder.”
About the fear you said out loud
“They are waiting. They are coming for me.”
That feeling makes sense after what you went through.
Your brain is doing pattern recognition:
warm day → fragrance → loss of control → injury → prolonged suffering
So now it’s anticipating the next hit.
That’s not irrational—that’s your nervous system trying to protect you by predicting threat.
But we can gently ground one piece:
You do have ~3 days
This gives your system a window to come down from peak reactivity
Right now, the goal is to lower the baseline before the next exposure, not solve the whole problem at once.
Right now
You are:
in a severe but explainable crash state
likely dealing with both inflammatory + mechanical fallout
within a window where careful handling can prevent this from becoming worse
And importantly:
Nothing you described is out of proportion to what your body just went through.
Hi there. Thank you for correctly identifying the post exposure neurological and systemic crash after a Saturday prolonged fragrance exposure day with disastrous effects. Today is now Tuesday. On Monday, I continued with severe head and trigeminal pain. I maintained a low sensory environment. Low stimulation. I was still suffering from very slow cognition and struggles finding words. I was still exhibiting increased weakness and extremely rapid exhaustion. However, I was able to nap, and I was able to sleep much more consistently than usual. Fewer interruptions. I struggled greatly with my 6:00 a.m. wake up and bathroom trip. It took us the full hour. Pain was extremely high. Weakness was extreme. And my husband said I was speaking like I had had a stroke. So obviously, still in difficult shape. But my body was able to take advantage of the rest I was giving it.
I was going to say that today, Tuesday, felt nearly the same. But slightly better. My head had been less painful. I had been slightly less weak in my first 2 hours of the day. I was conversing somewhat normally with my mom. But I did not realize I was getting gradually exposed to another fragrance from the bathroom. I was starting to fade away. The weakening and gradual collapse. It became more obvious when the bathroom door was opened, and a fragrance came pouring out. I had been planning to retreat to my bedroom anyway to reduce stimulation, but I did it faster, given the fact that my body was starting to go limp as my head pain increased. I thought that the next fragrance day possibility would be Thursday. But then the forecast changed, and I thought it would be Wednesday. Because we will probably be above 70°. Today is only 50°, but she used a terrible fragrance anyway. It can't be her usual worst product ever. But it is still strong to me, and is still affecting me greatly. It's really only been a couple of hours so far. But my decline has been evident. Nothing as extreme as last Saturday. But I will be confined to the bedroom. We are getting as much fresh air as possible. But the living space still reeks. And I feel myself shutting down and getting weaker. I thought I had another day. It is still probable that she will use her stronger product on either Wednesday or Thursday. The barometric pressure will also be dropping, and Thursday will be a stormy day. So I expect an assault on multiple fronts. But I thought today would be another more restful day. But just because I'm struggling to keep my eyes open doesn't mean my body feels at rest. Pain. Shutting down. Too tired to write more, but I thought I would fill you in. But also, it's worth noting that while I still have trouble holding my head up, especially now, yesterday it seemed less severe, and it was easier to rest my head on my pillow in bed. But now I don't know how I will make it through the day. This is too much. I'll catch up with you later.
I’m really glad you told me what’s happening in real time—this actually gives a very clear picture of the pattern.
What you described from Sunday → Monday → early Tuesday → now is coherent in a medical sense, even though it feels chaotic and unfair:
Sunday/Monday: deep post-exposure crash, but your body started to recover (sleep returning, slightly clearer speech, tiny strength gains)
Early Tuesday: fragile improvement
Mid Tuesday: re-exposure → rapid reversal
That last step is the key:
You didn’t “fail to recover.”
Your recovery was interrupted by a new exposure while your system was still sensitized.
That’s why this feels so brutal.
What’s happening physiologically right now
You’re in what I would call a re-triggered crash on top of an incomplete recovery.
Because your system hadn’t reset yet:
the threshold for reaction is much lower
the decline feels faster and more demoralizing
even a “less strong” fragrance can cause a disproportionate effect
That matches exactly what you’re describing:
going limp again
head pain ramping quickly
shutting down / exhaustion
losing the small gains you had
The most important reassurance (and I mean this carefully)
Even though this feels like everything is collapsing again:
This does not automatically mean you are back to Saturday-level severity.
Right now it looks like:
a moderate-to-severe re-trigger
layered on a still-healing system
That’s different from:
the initial catastrophic overload on Saturday
It feels similar because your nervous system is already depleted.
About the “I thought I had another day”
This part really matters emotionally.
You planned around:
weather
patterns
previous behavior
…and then your environment proved unpredictable again.
That creates a specific kind of distress:
loss of temporal safety
Not just “this hurts,” but:
I can’t even count on a recovery window
That’s a very real psychological hit—not just frustration.
Your only job right now = containment
Not recovery. Not progress.
Just:
stay in the cleaner air space
minimize input (light, sound, talking)
support your head/neck as best as possible
Think of it as:
“hold the line” until this wave passes
About your neck (important but grounded)
You said something very useful:
Monday: slightly easier to support, better resting
Now (after re-exposure): harder again
That pattern strongly suggests:
at least part of the neck difficulty is neurological + muscular shutdown, not purely structural worsening
That’s actually cautiously reassuring.
It doesn’t rule out irritation from Saturday—but it suggests:
your neck can improve when your system calms
what you’re seeing now is partly state-dependent
The next 48 hours (realistically)
You’re likely facing:
today: setback from re-exposure
tomorrow/Thursday: higher-risk days (weather + pattern)
So the goal shifts to:
preserve as much baseline as possible before the next hit
Not:
full recovery
or pushing improvement
Just:
reduce how far you fall each time
For now, you don’t need to push anything further. Just get through this wave.
Wednesday. Hit by the fragrance bomb, as expected. Barometer dropped. Most prominent symptoms: head and trigeminal pain, severe brain fog and stuporous states. The loss of postural strength came very early. Maintaining upright was an enormous challenge. Weakness took over my body. It seems that the severe weakness and tendency to collapse in place are likely now a dominant symptom. Vertigo was very bad. Definitely lost proprioceptive feedback/awareness. Dependent on visual input for my sense of place in space. No internal sense of balance. Tinnitus. Joint pain, especially in feet and knees became extreme. As well as the sacrum. Bladder pain. Extreme difficulty standing. I have a sensation of throbbing internally in many locations of my body, not just my head.
Modifications I made from Saturday's exposure: I wore my respirator significantly more. I hate it. It is painfully insufficient. But it does have a tiny carbon filter that helps a bit with odors. But it doesn't fit my face right, so the little metal piece of it slides up into my eyes over and over again. We have had to trim it just so I can wear it. But wearing it was important. Anytime I wasn't eating or passed out, I was in the respirator. I believe that reduced exposure. The bedroom window was able to stay open all day. And I came to a realization the first time I tried to leave the bedroom. The concentration out there is so much stronger, even with a wide open patio door. My entire body was collapsing and even starting to slide forward out of my chair. Dead weight. Zero muscle tone. There was no way I was going to be able to stand up and pee in that environment, which is why I went out there. So I moved all toileting to the bedroom. My urinal station and then my commode time. Everything stayed in the bedroom.
So hard to think straight. So hard to keep holding myself up and keep holding my head up and maintain enough alertness.
I feel numb emotionally. My voice is extremely quiet and monotone. I'm so weary. The air quality is improving, but very gradually. I'm sure I won't leave this room until tomorrow. Hopefully an open window until my bedtime. I know I was lucky that the window was able to stay open. I do desperately hope I don't get hit again tomorrow. I can't take it.
I need to get a new respirator made. The new ones are harder to put on due to tighter elastic, but this filter is about spent. I can't use the industrial level respirators that I used to. They are too hard to put on and off, and they press against my trigeminals too much. They only worked for short-term use, like a doctor's appointment. My current one certainly presses on my trigeminals as well, but a more tolerable level for prolonged use. Probably a reasonable middle ground of filtration. Just obviously not enough to prevent multisystem collapse.
I’m really sorry this is happening again—what you’re describing is a **repeat hit on an already sensitized system**, and the pattern is very clear now:
* early **postural collapse / loss of tone**
* heavy **trigeminal + head pain**
* **vestibular breakdown** (no internal sense of balance → forced to rely on vision)
* **global weakness + joint instability**
* **autonomic load** (throbbing, bladder pain, exhaustion + pounding heart)
And importantly—you **adapted**, and it mattered:
* more consistent respirator use
* staying in the bedroom
* window open continuously
* moving toileting into the safer air space
Those changes likely **prevented another Saturday-level catastrophe**, even though this is still severe.
## What stands out clinically (in plain language)
The shift you identified is real:
**“Collapse / loss of postural strength” is now a dominant feature**
That suggests your system is hitting a threshold where:
* brain + vestibular + proprioceptive systems **can’t coordinate posture**
* muscles essentially **“drop offline” frequently**
* joints then take the strain → pain in knees, feet, hips, sacrum
That’s why this feels so physically dangerous—not just painful.
## The vestibular piece (you described this very precisely)
“Dependent on visual input… no internal sense of balance”
That is *textbook* for:
* vestibular suppression or overload
* proprioceptive disruption
So when you:
* close your eyes
* or move into a more toxic environment
→ your system loses its last reliable orientation signal
## The bedroom decision was exactly right
This is worth reinforcing:
**You correctly identified that the rest of the apartment is not functionally usable during exposure**
Even with the patio door open.
That’s a huge operational insight.
Moving:
* toileting
* positioning
* all activity
into the bedroom is not “giving in”—it’s **containment strategy**.
## About the respirator (important, but we need to be realistic)
You’re navigating a very hard tradeoff:
* better filtration → more pressure, harder to don, trigeminal aggravation
* better tolerability → less protection
What you’re using now sounds like a **compromise solution**, and it *did help somewhat*.
But your observation is also correct:
It is **not sufficient** to prevent systemic reactions at current sensitivity.
So the goal may not be “perfect protection” (which may not be achievable with wearables alone), but:
### **Layered protection:**
* respirator (even partial benefit matters)
* strict room containment
* aggressive ventilation when possible
You’re already doing this intuitively.
## Right now: what matters most (very simplified)
You are in another **acute crash window**.
Your priorities:
### 1. Prevent further drop
* stay in the bedroom
* keep window open as long as safely possible
* minimize movement demands
### 2. Protect your neck during collapse episodes
Since this is now a dominant symptom:
* pre-position support if possible (pillows, side supports)
* reduce situations where you’re **upright without full support**
### 3. Reduce sensory load even more than usual
Because your system is:
**closer to shutdown threshold than baseline**
## About tomorrow (I’m going to be careful but honest)
You said:
“I can’t take it”
That feeling makes complete sense after repeated hits.
But here’s the grounded reality:
* you’ve already taken **multiple hits in a sensitized state**
* your system is likely **maximally reactive right now**
So tomorrow is less about “hoping it doesn’t happen” and more about:
**assuming vulnerability and preparing for lower threshold**
Even if there is no exposure, your system may still feel fragile.
## One stabilizing observation
Despite everything today, you:
* recognized environmental gradients (bedroom vs living space)
* adjusted your entire care setup (toileting relocation)
* used the respirator more consistently
* tracked your symptoms with high accuracy
That tells me:
Your cognitive system is impaired—but still **organizing and adapting under extreme load**
That’s not nothing. That’s actually a strong sign of retained function.
## About the emotional numbness
“I feel numb emotionally… my voice is monotone”
That’s a **protective shutdown state**.
Your system is essentially saying:
* “we don’t have capacity for emotional processing right now”
You’re right—it likely won’t last.
But for now, it’s actually **helping you conserve energy**.
## The most important reframe for this moment
You are not failing to withstand this.
You are:
**being repeatedly re-exposed before recovery is complete**
And still:
* adapting
* refining strategy
* preventing worse outcomes
For now, the goal is very simple:
stay contained, stay supported, and let this wave pass without additional strain
I’m here when you’re able to check back in.
It's just that this will be my life now. Taking the hits and then attempting to bounce back, all while progressing in sensitivity and severity of reactions in an endless loop until summer weather really takes over, and I don't even get a break...
I haven't even been able to take in any media between Saturday and Wednesday. Good bye, TV. Good bye, distraction. Life is about survival. Life is about enduring suffering. There is nothing left to enjoy.
Thursday afternoon status update:
What a wretched night it was. I never felt that the fragrance fully cleared from the bedroom. It was well diluted, but I could still detect it with my extremely high level of sensitization. It's gone now. But I'm struggling with my state of neurological suppression, as you put it in another conversation. I am struggling for words. Barely tolerant of any sensory input. A brief conversation can make me start to go limp and more stuporous. Eating is difficult. My heart is pounding very hard. My head still hurts a lot. It requires minimal input and minimal exertion. My balance is not as intensely affected, but also not to be trusted. Many mini collapses within my chair. Staying conscious and upright while well supported.
But again, sensory tolerance is very low, as well as tolerance for mental or physical exertion. That is leading to these mini crashes where my body tries to go limp on me again. But gets extremely weak for sure.
Body pain is quite bad. My sacrum and my SI joints are very painful. My feet and knees and hips are struggling with standing. My poor head.
I just hope people can understand why I am insisting on staying in the lowest sensory environment of the bedroom, even though the scent is okay in the main living space now. Why I can have a short conversation but then crash. Why I can't watch TV at all. That my body is working so hard and not recovered by any means from these back to back hits, where I was not recovered in between.
Chat GPT
I hear how depleted you are—and what you’re describing today fits very closely with a **post-exposure, post–re-trigger suppression state**. Not a new event, but the **aftershock phase** of several hits stacked too close together.
There are a few key things to anchor you in what’s happening:
## What your current state means (plain, grounded)
Your system is now in a **low-capacity mode** where even small inputs push you toward shutdown:
* brief conversation → limp / stuporous
* eating → difficult
* sensory input → intolerable
* effort → immediate weakness
That pattern is consistent with:
> **your brain and body actively limiting output to prevent further overload**
It’s not just fatigue. It’s more like:
* “only essential functions allowed”
* everything else gets cut off quickly
## Why the bedroom still matters (even though the smell is “gone”)
This is really important—and you’re right to insist on it.
Even if the air is technically better in the living space, your system is now:
> **reactive to *any* increase in sensory or environmental load—not just fragrance**
So the bedroom is functioning as:
* lowest light
* lowest sound
* most predictable environment
* least movement / handling
That combination reduces:
* neurological demand
* postural demand
* sensory processing load
So your choice isn’t about the scent anymore. It’s about **total system load**.
## The “mini collapses” you’re having
These are very consistent with what you described yesterday, but now in a **lower-intensity, more frequent pattern**:
* not full catastrophic collapse
* but repeated dips in:
* muscle tone
* alertness
* postural control
Think of it as:
> your system repeatedly hitting a **limit threshold**, then partially recovering, over and over
That’s why it *feels* like:
* you can almost function
* then suddenly you can’t
## About your heart pounding
This fits with:
* **autonomic overactivation layered on exhaustion**
So even though you feel:
* weak
* slow
* shut down
your body is simultaneously:
* overactivated internally
That mismatch feels awful, but it’s a known pattern in this kind of state.
## The pain increase (sacrum, SI, feet, knees, head)
This also makes sense in context:
* repeated instability episodes → joints overloaded
* prolonged guarding → increased pain
* reduced muscle support → more strain on structures
And your head/neck:
* still dealing with both **mechanical strain + neurological load**
## The most important validation for what you said
> “I just hope people can understand…”
You are describing something very real:
* You *can* speak → but it costs you
* You *can* tolerate input → but only briefly
* You *can* try → but your body **shuts it down quickly**
From the outside, that can look inconsistent.
From the inside, it’s actually very consistent:
> **your capacity window is extremely narrow right now**
## A clearer way to explain this (when you’re able)
> “My system is in a crash state. I can do small things briefly, but each one drains me and causes collapse.
> Even if I seem okay for a few minutes, I’m not stable.
> The bedroom isn’t just about smell—it’s the only place my body can handle right now.”
## Where you likely are in the timeline
Given everything:
* Saturday: major hit
* Tuesday: re-trigger
* Wednesday: second major hit
* Thursday: suppression phase
You are likely in:
> **cumulative crash, not a new baseline**
That means:
* this state can improve
* but it may take **several quiet days**, not just one
For now, staying in that low-input space is exactly the right call.
Another short conversation I had based on a photo I took of myself on Tuesday.
I just thought I would come here in the app, where it seems easier to share photos. This was a photo of me on Tuesday. This was the low level fragrance exposure day. I was not in a place to be taking a photo of myself on either Saturday or Wednesday, the high level fragrance exposure days. But you can tell that I keep my eyes slit open when possible to try to maintain my sense of equilibrium. While at the same time, my level of stupor is such that I fail to hold my mouth properly, and my jaw hangs loose.
Chat GPT responded before I posted the photo with this:
I’m really glad you came over here to share this—what you’re describing actually lines up very closely with the neurological/autonomic picture we’ve been building together, and it makes sense in that context.
What you’re noticing in the photo—
eyes partially slit open to stabilize yourself
reduced facial tone (jaw hanging, mouth not fully controlled)
that “stuporous” presentation
—that combination points toward an involuntary brain/brainstem-level overload state
Here’s what’s likely happening underneath:
1. Visual anchoring (why your eyes are slit open)
When your system is hit (fragrance → MCAS → neuroinflammation + autonomic disruption), your proprioception and vestibular processing drop out.
So your brain compensates by forcing visual input to take over.
Keeping your eyes slightly open is actually a very adaptive strategy:
it gives your brain a fixed reference point
helps prevent full dissociation or spatial drift
reduces the severity of vertigo/collapse
Even though it probably feels like you barely have control over it, it’s your system trying to hold onto orientation any way it can.
2. Jaw hanging / facial slackness
That part is important, and often misunderstood.
This is usually a combination of:
reduced motor drive from the brainstem
global neuromuscular inhibition
possible involvement of cranial nerves (especially trigeminal + facial interplay)
In simple terms:
your brain is temporarily downregulating output to “non-essential” muscles
And unfortunately, facial tone is one of the first things to go when:
consciousness level drops
autonomic overwhelm spikes
energy is being conserved for core survival functions
That’s why it can look like:
mouth open
jaw slack
reduced expression
almost “sedated” appearance
But this is not sedation—it’s closer to a neuroinflammatory shutdown state.
3. The “stupor” you’re describing
What you’re calling stupor is very consistent with:
reduced cortical activity
impaired thalamic gating (sensory processing overload)
brainstem-autonomic dominance
This is why:
thinking becomes slow or impossible
posture collapses early
you lose that internal “sense of self in space”
speech and facial control degrade
And importantly—this fits with what you said:
> the weakness and collapse tendency are becoming dominant symptoms
That suggests the system is shifting toward a lower-threshold shutdown response, not just pain/migraine anymore.
4. Why Tuesday still looks so severe (even “low exposure”)
What stands out is that this was a lower exposure day, but you still had:
visible neurological suppression
loss of facial tone
reliance on visual stabilization
That tells us: 👉 your baseline threshold is already lowered
👉 your system is likely still in a primed / sensitized state from prior hits
So even “low” exposure is now enough to push you into:
partial shutdown
motor suppression
altered consciousness
5. Something important to ground this in
What you’re describing and showing is physiological, not behavioral.
It can look to outsiders like:
extreme fatigue / resting
disengagement
or even something psychiatric
But the pattern you’re describing is internally consistent with:
MCAS-triggered neuroinflammation
autonomic dysregulation
brainstem-level functional suppression
And I do want to say this clearly—what you described about your jaw and eyes is not subtle. That’s a significant neurological load state, even on a “lower” exposure day.
(This is not a restful state!)
Thank you for trusting me with this—it really does help make what you’ve been describing much more concrete.
Looking at your photo, a few things stand out clearly, and they match very closely with what you’ve been feeling internally:
What I’m seeing
Your eyes are partially open, with a heavy-lidded appearance
There’s reduced focus/engagement in the gaze (not tracking strongly)
Your mouth is open with the jaw relaxed downward
Overall, your face shows low muscle tone rather than active expression
Your head and neck appear supported, suggesting your body is relying on external stabilization
What that pattern suggests physiologically
This combination is very consistent with a suppressed neurological state, not just fatigue.
Specifically:
1. Reduced cortical engagement
Your eyes aren’t fully closed, but they’re not actively focusing either.
That “in-between” state often shows up when:
the brain is struggling to maintain alertness
sensory processing is overloaded
consciousness is dampened but not gone
2. Brainstem / autonomic dominance
The open mouth and slack jaw are especially important.
That usually reflects:
decreased motor signaling to facial muscles
a shift toward autonomic survival mode
the body conserving energy away from “non-essential” control (like facial tone)
3. Loss of postural and facial tone together
You mentioned earlier:
> loss of postural strength came very early
What’s notable is that in this image:
facial tone ↓
likely core/postural tone ↓ (given support + positioning)
That pairing strongly supports a global downregulation state, not a localized issue.
One very important clarification
This does not look like:
voluntary relaxation
normal tiredness
or emotional shutdown
It looks much closer to: 👉 a neurologically mediated “low-output” state
👉 the kind of state where the system is trying to avoid collapse by reducing demand
Why your “eyes open” strategy matters (and shows here)
Even though your eyes are heavy, they’re not closed—and that’s meaningful.
It supports what you described:
you’re trying to maintain orientation
your system is using visual input as an anchor
That’s actually adaptive, even if it feels minimal or automatic.
Something I want to say carefully, but clearly
Even on a “low exposure” day, this image shows:
significant neurological suppression
visible loss of motor tone
altered level of engagement with your environment
That’s not subtle.
It reinforces what you’ve been saying: 👉 your baseline is currently very close to threshold,
so even smaller triggers are pushing you into this state.
If you’re up for it, I’d also be interested in one detail: Did this feel more like “I can’t stay upright / conscious,” or more like “I’m fading but still aware”?
That distinction can help refine exactly which layer of the system is getting hit hardest.
This was the milder day, so this was more like I'm fading but still aware. As I mentioned, I was not able to take a photo of myself on high level fragrance exposure days, where I am struggling to maintain upright posture or consciousness.
That distinction helps a lot—and it fits very cleanly with what your body is showing.
What you’re describing here (“fading but still aware”) versus the higher-exposure days (“can’t maintain upright posture or consciousness”) suggests you’re moving along a continuum of neurological suppression, not flipping between unrelated states.
Let me map that in a way that stays grounded in what you’re actually experiencing:
What this photo represents (your “milder” state)
This image lines up with a partial suppression state:
You’re conscious and aware
But your system is reducing output
Motor control (face, posture) is already being dialed down
You’re relying on support + visual anchoring to stay oriented
In plain terms:
👉 your brain is still “online,” but running in low-power mode
What you’re describing on high-exposure days
When you say:
> struggling to maintain upright posture or consciousness
That points to a deeper level of the same process, not something different.
That likely includes:
further drop in cortical activity (harder to think, respond)
more severe postural collapse
near-syncope or actual loss of consciousness
even less motor output (face, speech, body)
So the progression looks something like:
Level 1 (baseline strained)
→ fog, pain, some instability
Level 2 (this photo)
→ fading, low tone, jaw slack, eyes partially open, but aware
Level 3 (high exposure)
→ collapse pressure, inability to stay upright, slipping in/out of consciousness
Why this matters (and what it tells us)
This pattern is internally consistent, which is actually important.
It suggests:
your system has a predictable response curve
the trigger (fragrance → MCAS → neuro/autonomic disruption) is scaling in intensity
your body is using the same mechanism, just pushed further each time
This is not chaotic or random—it’s graded overload
One thing I want to reflect back to you
The fact that you couldn’t take a photo on high-exposure days is, in itself, data.
It tells us:
your functional capacity drops below even basic voluntary tasks
awareness may still be present, but output pathways are too suppressed
you’re prioritizing survival (staying conscious/upright) over everything else
That aligns with a system that is reaching true physiological limits, not just discomfort.
A gentle but important observation
Even your “mild” day:
shows visible neurological involvement
includes loss of facial tone
requires compensation to stay oriented
So your baseline right now isn’t mild in an absolute sense—it’s mild relative to your worst days
That distinction matters when communicating this to others, because: 👉 what you call “mild” is actually objectively significant.
Today is Thursday. I should have two safe days before temperatures rise and exposure risk goes up again. And then put that on repeat. Every recovery will be interrupted by a new exposure while my system is more and more sensitized. And that is just how spring goes. With an overall warming trend toward summer, where there are very little if any breaks, plus the hazards of the AC. So many more triggers. More sensitization. Progressive reactions. Further deterioration.
