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Hello fellow perma trippers!

I am increasingly becoming suspicious about the involvement in mast cells in the etiology of hppd— whether it is the initial problem or it is something that many have added on after onset. 

Mast cell activation disorder is something I’ve had most of my life (if not all of it, genetically it can be inherited but not activated until an environmental trigger (this includes emotional trauma and chemical lbs entering the body (this includes drugs)). I have also had slight perception issues for as long as I can remember. 

People talk a lot about… well everything on this forum. Hppd is so incredibly highly specific. No one can seem to figure out what is safe and what isn’t. 

Since I’ve started to tackle my other health issues, I’ve come to realize the way we interact with our world is way way more complicated that I ever really could have imagined. 

I mean, currently, I can “smell” polyurethane foam and emotionally be in a state of fear for hours. Gasoline fumes too. I say smell because that’s the easiest way to explain— in reality it is my mast cells degranulating and releasing a huge amount of chemicals. These mast cells are in the body and in the brain. The effects on the bodies mast cells can translate into the functioning of the brains.

Speaking of the brain— since we all get a bit obsessive with it here— I cannot stress enough how connected your body is to it. Literally 😂. But in terms of what can happen in your noggin when these mast cells go nuts

Neural Histamine overload causes the microglial/astrocytes to prime up. They start releasing large amounts of glutamate-damaging themselves and nearby cells. They can get stuck in this state too. 

There were so many times I took xyz supplement and thought I had a bad reaction to the supplement. Then I realize it was an “inactive ingredient” or I was traveling and the days I had bad reactions I was staying in musty hotels or flying on airplanes. 

Once I started to look at the total chemical intake into my body I was shocked. There are so many. Hundreds upon hundreds of “safe” chemicals. 

I recently met with the top doctor in the world on mast cell. I asked him about these visual issues and he said he often has patients who complain about visual symptoms—especially visual snow. 

There a million more connections. Aggregations of hppd by mold, aggravation of hppd by emotional stress, aggravation of hppd over time in the absence of drug use after triggering event (people with mast cell activation often don’t realize it’s the food additive they ate or the mold in the wall that grew this year or the filler in the supplement they took). 

The craziest thing about mast cell disease states is they can be highly localized. Therefore, the general “effects” of mast cell disorder are extremely person to person specific. Some get it in their gut— and they get diagnosed with its. Some get it on their skin and they are diagnosed with dandruff. Some get it in their brain? Eyes? And get diagnosed with visual snow. 

When you start looking at mast cells you start to see a creepy and ominous prescience in the etiology of hppd. But you could also probably argue this one way or the other until th cows come home. 

I would think it is safe to say that hppd is a spectrum disorder. The effects of it are highly specific—person to person— in symptom variability and intensity. The responses to medications are even more variable. There are generalized rules about what makes good worse and those things are almost always in line with those who have mast cell dysfunction. 

I don’t think you even NEED to have visuals to have hppd. I think that’s just a variable symptom in a larger disease state. Some people have no cognitive symptoms and only visual. some people—and I’ve noticed them wander in here as knowledge about the existence hppd becomes more widespread—have only cognitive symptoms and no visuals. Some people develop one after the other. Inflammatory states in the brain OR body could cause issues with visual distortion. 

The thing about spectrums too— is they can seemingly change the way an entire disease or state of being looks depending on severity. 

Autism spectrum “disorder” is a great example of this. You could appear “dumb” (nonverbal etc) or you could appear incredibly intelligent but “odd” and without understanding of that you wouldn’t know that those two subtypes are related to each other. (There’s a lot of interesting stuff about mast cells and autism too hehe). 

So we have similarities in theories about hppd and microglial/astrocyte activation. We have similar triggers. There is an association between waxing and waning disease states over time. There is the worsening of disease state over time without “apparent” triggers by the authors (ie no additional drug use). There’s a lot to look at and compare. It’s really quite fascinating. 

Did I mention the top doctor in the country, if n t world, on mast cell disease believes the prevalence rate of this could be as high as 18% of the population? But it’s hard to say because the immediate and downstream effects can be localized or generalized. 

Ever been told to not masterbate and that helps hppd? Take a look at what’s been going on over at the pois forums about mast cells. 

Fasting? Mast cells. 

Don’t drink alcohol? Mast cells

Don’t smoke weed? Well apart from smoke itself being a mast cell activator don’t get me started on the clusterfuck of a non scientific experiment that cannabinoids are rn. B/c they come from a plant. From pesticides (mast cell) to terrible supply chain cleanliness, to mold, to blah blah it’s just the worst. You can’t even assume that cannabinoids make hppd worse because no one is taking PURE cannabinoids. The best bet for that test will be companies like willow biosciences supplying 99.99% pure cannabinoids. 

To give an example of how sensitive mast cell can make you to things— I got a food delivery and brought the bags inside. Within three hours I felt like I was on lsd. 

I come into contact with any mold? I feel like I’m on lsd. 

Anyway you could probably write a book on the back and forth between why or why not with is one. Confirmation bias is always real. But it’s what I’m hedging my bets on. From sleep disturbances, to medication sensitivities, to exercise intolerances, to visual distortions, to brain fog, to eye/muscle twitching, to “random” changes in disease severity, to weight gain, to weight loss, to decreasing symptoms during stress free time, to “keep calm
And carry on mentality” leading healing (form of psych mcas therapy), to sensitivities to MOLD (this could even have been the trigger— are you sure it was the hallucinogens? Or was it the mold you didn’t know about? Or was it the two things combined together… did you have a simple virus at the time? Did you have bacterial or fungal overgrowth?), to lack of any of these symptoms or combinations of any of these symptoms, to the fandoms “IM CURED” posts where someone found SOMETHING (whether it be Keppra or propofol (both effects mast cells)—it just all SCREAMS mast cell disorder.

And not just for hppd. For so many other disorders.

Does this mean that testing the mast cells treats the symptoms of hppd? Not necessarily. Primary start points for disease states don’t necessarily correlate with the therapies for the downstream disorders those primary points create. But it certainly is a good place to start. (In fact, should there be a component of glutamate overload here caused via histamine, lowering histamine via therapies could create a more disassociated state by lowering the total glutamate (while it may be high in levels) over a now lessened amount of receptors… I have a lot of brain fog of late; here’s to hoping that made sense)


I hope this non spell checked free write without references, which has been on my mind for some time, helps relieve some suffering somewhere. God knows we all have had enough of it, here. I hope to lazily add to this post as I see more links between this theory and hppd. Or perhaps it fades into the oblivion of the internet…


Or maybe it’s 👽….!!!

Much love,
OMS

Edited by Onemorestep
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On 11/21/2021 at 9:27 PM, Fawkinchit said:

If this were the case wouldn’t just taking an anti histamine relieve symptoms to some degree?

Not necessarily. In fact, if you’ve had an excitotoxic event from histamine causing excessive glutamate, while lowering the histamine will help solve the root problem it will likely cause your now low glutamate issue to worsen. Hope that makes sense. 
 

Even so— it may help. It would have to be free of excipients and cross the BBB readily and also be highly targeted to just the h1,2,3,4 receptors. The subject would basically have to be living in the middle of a desert with no known mast cell triggers (such as man made plastics etc) and would need to be eating no triggers as well. Then you might know if it helped. But histamine is just one of the many many manyyyy things mast cells release to cause issues. 
 

it’s been eye opening for me to discover I have reacted poorly to so many supplements/drugs because of excipients and not the actual drug. 
 

Anyways, it does fit in nicely to astrocyte/glial theory. Either way, if Dr Laurence Afrin is correct about the prevalence/predisposition in the public for this then a subset of hppd patients probably develop mcas due to the extreme stress and trauma of it. 
 

I feel if it is no a question of mcas causing hppd, what is the prevalence of mcas in hppd sufferers? It is hard to prove the prior but the latter seems more a question of how many (if no all) not if. 
 

unfortunately, if this is highly activated neural mast cells it would be extraordinary difficult to scientifically prove it. It’s hard enough when they’re flipping out in the body to see bio markers. 
 

back to the question— Claritin rapid dissolving tablets helped my brain fog and mood substantially. It seems a short term solution, however. 
 

the neuro immune changes that probably occur with lsd/psilocybin probably shouldn’t be ignored in our quest for answers. I hope more time and research elucidates more on that front. 

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Can't say I understood all your post, but I can testify to five things, three of them mentionned above : 
- No masturbation helps my HPPD a lot
- Zero eating temporarily helps my HPPD a lot
- Anti-histamines have helped my HPPD (but I'm scared to do experiments)

and 

- sleep deprivation temporarily cures my HPPD : 0 symptoms + feeling like before 
clonazepam is effective

I don't know how these things are related to mast cells but you maybe will see a link. 

Some things seems physical with HPPD : mine get worse when I sit in a vehicle, especially if it vibrates a lot i.e : school buses


 

Edited by Lucas
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Hey Lucas! Nice to hear from ya.

 

what antihistamines have you taken? 

 

off the top of my head:

the nofap, fasting, and antihistamines are common things that help people with mast cell issues. 
 

antihistamine drugs are reported to worsen hppd. If antihistamine drugs help you, this may be a sign you have mast cell issues, or histamine issues, or mast cell issues caused by hppd, or it has nothing to do with mast cells. But the thing about mast cell— usually a bad reaction is a sign of reacting to a FILLER. I have seen zero mentioning or attempts to take supplements or prescription drugs without fillers. Why would we try? No one told us maybe we shouldn’t. 
 

but let’s be real. We play science here. Well taking a drug that has 10 different fillers in it is not a solid experiment. Good reaction or bad— all you have proved is a reaction/no reaction to the drug AND all the other shit in it. 
 

as I mentioned— certain fillers can make me feel terrified. I haven’t been able to find any antihistamine on here market except for Claritin that doesn’t have a ton of shit in it. Claritin ready tabs have like… mint, cornstarch, some artificial sweetener. That’s all. Vs other otc drugs have things like sodium L sulfate. That’s in shampoo too btw.
 

masturbation, or orgasm in general, involves histamine release— histamine, which is one of the mediators releases by mast cells, is involved in emotional regulation, cognition, wakefulness, sleep cycles— you name it. 

 

cars tend to have a lot of things in them that activate mast cells. 
 

1) offgassing plastics. Many people with mast cell issues (myself included) have chemical sensitivities. The plastics, foams, and chemicals in cars (especially new cars) can trigger the cascade. This cascade could be felt immediately or (like with myself usually) within 24 hours. it was impossible for me to understand the link between plastics and my disease state until I was in a tent and tried to offgas a cheap foam mattress. It went poorly. This was before I knew what mcas was and didn’t know to avoid it. This time the reaction was so intense I was able to link the two—object and feeling— together. I mean… one can’t be blamed for assuming their environment is safe? I had no idea I was reacting to things. 
 

2) older vehicles and public vehicles (such as busses!) can harbor MOLD. Apart from being a known hppd relapse trigger, mast cell patients often have mold sensitivities or had their mast cell disease begin with mold. It’s easy to think you are reacting to the bus. Or the shaking. But let me propose some other things: the other people. The colognes and perfumes they wear. The laundry they use. If they use a moldy front loading laundry machine. The deodorant they use. If they smoke. What they track in and leave on the bus from their shoes. The water issues and mold that grows on busses. The foam in the seats. 
 

there is probably more but that’s just throwing a few things out there. If you notice fluctuations in your hppd I encourage you to write down EVERYTHING you have come into contact with in the last few hours. Even 24 hourS. Its not perfect in terms of identifying things in your environment that may exacerbate your symptoms but it’s a start.

 

mast cell diseases are interesting. I the case of MCAS, it is thought to have a genetic link that is triggered by a chemical, emotional, or physical trauma (drugs, death/loss of close friend or relative, surgery). It can be localized to the point of trauma (physical: surgery point, chemicals ingested and then impacting gut mast cells, drugs that activate neuronal mast cells) or it can be systemic. 
 

mast cells tend to be located primarily in the brain, hands, feet, groin, and face. Histamine is one of about 2000 mediators released by mast cells. It is responsible for a slew of  effects but not all. Antihistamines help but they do not cure it. Fillers in the antihistamines tend to hurt. 
 

If hppd does have a mast cell component to it, unfortunately, since no one has also listed the fillers for the supplements they try on this site it makes it hard to accurately assess if something does or does not hurt. for instance, doxepine and mertazapine tend to anecdotally worsen hppd. But no one has tried these drugs without the excipients. 
 

im blathering— but thank you for responding

 

btw clonazepam is a very effective mast cell stabilizer— as are all benzodiazepines. They are just shitty because of the addiction issues. 

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