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 I 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.
Watch for:
increased neck instability feeling (like your head is harder to hold up)
new or worsening neurological symptoms (arm weakness, numbness, vision changes, swallowing issues)
a different quality of headache than your baseline
increased need to support your head manually
If anything like that is noticeably worse than your baseline, that’s a red flag situation, even given your homebound constraints.
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. I cannot say if the reaction was worse, although it seems like it. 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. I'm sure it resembles some bad ones last summer. 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. 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. 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, 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 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.
