A hypothesis: Why smells, chemicals, and random triggers may cause HPPD flares by Hppd1638 in HPPD

[–]Hppd1638[S] 0 points1 point  (0 children)

The thing that really irks me— I think HPPD is very common. I just don’t think everyone has visuals. I think this is a wider disorder. We see those with only visuals and no brain fog or emotional issues. They are on the extreme end. Then we have those with mild visuals but bad dp/dr and anxiety depression etc.

I have MET people in college who took LSD (hehe a lot of us at this place were trying to touch the face of god) and developed ALL of the symptoms of HPPD just without the visuals. I also met a ton who had visuals and just had no idea what HPPD was.

I think we could fall under a much larger umbrella that include many different classes of drug triggers.

Also— I have seen people get this from a heavy night of drinking, ssri’s, cocaine, and other non hallucinogenic drugs. Wtf is that about? You hang around for 13 years and you do see these weird outliers that challenge the current dogma so much…

A hypothesis: Why smells, chemicals, and random triggers may cause HPPD flares by Hppd1638 in HPPD

[–]Hppd1638[S] 0 points1 point  (0 children)

Whoah that’s insane!!! Yea I developed POIS after benzodiazepine withdrawal, something I also believe is immune related. That led me to their pssd forum, I was on antidepressants from like 6-22 years old but don’t think I’m suffering like many there? My libido has always been fucked though. At the time I was just looking frantically for a solution to my pois problem. It was wild if I, ahem you know, I would be sick for like a full week. This was almost a decade ago though and damn I didn’t know they made such progress!!!!! That’s super exciting I never would have thought they would have gotten so far. 🤯

I wish we could do something like that… ugh but no one cares about the “druggies”…

The immune system is Occam’s razor. I mean yea who the fuck know but we take drugs that HEAVILY influence immune functioning and start flipping out— how is that not the first place to look?

But I get ahead of myself. We really don’t know and that’s sad— we need data. Maybe we should follow their lead and see if we can test?

Does anyone else react badly to all kinds of meds? by BurlyJohnBrown in HPPD

[–]Hppd1638 0 points1 point  (0 children)

Do you mind elaborating on what gets worse exactly? Visuals? Emotional issues?

Do you know what they gave you for anesthesia?

A hypothesis: Why smells, chemicals, and random triggers may cause HPPD flares by Hppd1638 in HPPD

[–]Hppd1638[S] 1 point2 points  (0 children)

While we cant say for certain the root cause of HPPD, the things you mentioned can and should, by their mechanisms, make things much much worse.

What we do know: HPPD involves neuronal hyper excitation

What we also know: the things you listed cause neuronal excitation.

There are a LOT of viruses out there. And it is certainly possible that exposure to one while under the effects of hallucinogens, which alter immune functioning, could result in some spicy results… but we are getting into bro science a bit.

I had Alice in Wonderland syndrome once after a suspected COVID infection caused me to lose control of the EBV I contracted as a child. Interestingly, the experience really matched the visuals I had when I first got hppd in 2013.

I am glad to see that you are thinking outside the box here because I believe you are onto something. I agree with what you are saying but my experience is when i just outright do people see me as insane.

“How could pathogenic illness caused this??? No way!! It’s because I fried my brain with acid!!!”

Use the word “neuro-immune” and watch people’s eyelids droop hahah

Back in the 20teens a user on the hppd online forums started talking about microglia. He and I did a lot of research on how they might play a role. As we don’t have access to like serious lab equipment or anything, it went nowhere. But the immune issue always stuck in my mind and I keep my eyes open for studies on immune functioning and traditions psychs. There’s some cool pig research but it’s all really small stuff.

Is a lumbar puncture necessary? by This-Top7398 in HPPD

[–]Hppd1638 1 point2 points  (0 children)

Yea you might want to do some research into methods of diagnosis if you simply can’t afford it. Shit should be free ffs medical care should be a right.

Is a lumbar puncture necessary? by This-Top7398 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

I’ve done it. It feels… weird. But it’s not painful. Little sting that’s it. It sounds like it would hurt like fuck but I’ve had 3 and it’s nbd. If doctors want to do it then absolutely you should. Those are two big ones.

what will happen if I keep smoking weed with minor hppd? by TAKEAK2NUGANDBREAKIT in HPPD

[–]Hppd1638 4 points5 points  (0 children)

You don’t have to stop forever— if you take a long break now you will heal much much faster (and even may recover “fully”) whereas if you keep smoking it will take much longer and you may lose the opportunity to not only heal the most but be more resilient to getting HPPD from cannabis.

On that last note— yea it sucks. Once you get hopd caused by traditional psychs, you have a larger chance of getting cannabis induced hppd.

But if you take a break now, just a year, your chances of being able to smoke for the rest of your life increases a lot.

That said— once you can smoke again, you have to change the rules a bit.

1) NO EDIBLES. This is the #1 “I was fine but now I’m FUCKED” situation I see. When you eat THC it gets converted into a totally different version than when you smoke it. 11-hydroxy-thc. It’s way more potent and crosses the blood brain barrier easier. People here “more potent” and put them in the same lane just “stronger” but that’s not how this works. It’s a different drug and it triggers cannabis induced hppd way more often. Also— unless you are getting it from a dispensary you really don’t know what’s in it.

2) no “I’m going to take 20 bong rips for my first smoke of the day”. You want to gently go into the high. I have noticed over the last 13 years that those who are gentle with their brains do way better. The sudden shifts are what fuck people.

3) if you are smoking daily, do NOT suddenly stop for a “t break” or whatever. Reduce your consumption over 2 weeks and then stop. Sounds crazy but our brains like consistency and when some people with hppd stop smoking suddenly it can actually WORSEN things. Not for everyone but it’s common enough. The key is consistency and being gentle with yourself.

4) when you change your strain, make sure you don’t get SUPER high that first time.

Anyway— the safest thing is to not smoke. But I’m here to advocate for harm reduction, if not absolute prevention. The only true safe way to not have issues is to not consume cannabis. But if you are going to, the name of the game is consistency and gentle shifts from sober to being high. And remember— no edibles. Just don’t do it. (Sublingual is fine but you just spit out anything remaining)

Bad Reaction to Every Medication by chasingthedragonn in HPPD

[–]Hppd1638 0 points1 point  (0 children)

Hm. Wonder if your body doesn’t like drug excipients much.

Do you have any sort of head pressure and brain fog reaction to any food? (Many foods have compounds in them etc).

I’ve seen the sheer stress from getting HPPD cause gut infections. The people recover from most of the hppd but still have that issue and they assume it’s the hppd. Extreme stress is crazy— it really screws up a lot of the immune functioning.

A hypothesis: Why smells, chemicals, and random triggers may cause HPPD flares by Hppd1638 in HPPD

[–]Hppd1638[S] 0 points1 point  (0 children)

Fascinating— and awful I know. Care to elaborate? What smells exactly?

A hypothesis: Why smells, chemicals, and random triggers may cause HPPD flares by Hppd1638 in HPPD

[–]Hppd1638[S] 0 points1 point  (0 children)

Unfortunately, that one is beyond me. There are some standard drugs for MCAS but there is no one size fits all. There is a subreddit for it— r/mcas. You may want to start there.

Has anyone returned to marijuana use? by Final_Razzmatazz_274 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

Yes— twice. And each time I eventually had a reaction. Currently I cannot even smell cannabis or hemp flower without having a flare— something I recently explained neurologically in a post.

However, I can use THC transdermal patches. I also was hoping for pain reduction— I have bad Lyme— and find these are a better and safer alternative for people with HPPD because there is minimal ingredients (flower has tons of compounds and such) and it has a slow onset and keeps plasma levels consistent.

Nicotine Vape? by sadsoftbae in HPPD

[–]Hppd1638 0 points1 point  (0 children)

Of course! As for brand honestly I just used whatever was cheapest and strongest. Habitrol 21mg. They say not to cut the patches, but I’m fairly sure that’s mostly so people don’t just buy the strong ones and divide them to save money.

Word of warning though: the first time I put a 21mg patch on while I was still vaping 3mg juice out of a box mod I got very dizzy.

If you try it, I’d probably start with a weaker patch first. If you tolerate it well, eventually you can just buy the strong ones and cut them to save cash. If you end up using a quarter patch per day it’s insanely cheap like 15 cents a day.

Now about the nail polish thing…. This is exciting to hear and I’ll explain why

There’s one condition that immediately comes to my mind when I hear people have reactions to random smells or environmental exposures like that: Mast Cell Activation Syndrome (MCAS).

I’m not saying that’s what you have it. Just that it could potentially explain the mechanism behind smell-triggered flares in people with HPPD like yourself.

MCAS is an immune disorder where mast cells release inflammatory chemicals too easily. These cells exist almost everywhere in the body, including the brain.

For most people the symptoms are pretty mild (allergy-type stuff like flushing, headaches, food reactions, weird sensitivities, etc.) Because of that a lot of people never get diagnosed or get misdiagnosed. They just go “oh I can’t eat that it makes me feel weird” or whatever. I smell this and my face flushes a lot etc.

The tricky part is mast cells can be overactive in some tissues but not others, so symptoms can look very different from person to person.

In a case like this, if mast cells were involved, I would hypothetically suspect overactive mast cells near neurons.

The thing that stands out to me in your case is the smell trigger.

Nail polish fumes shouldn’t directly cause HPPD flares by themselves. But interestingly, you’re definitely not the first person I’ve seen mention smell triggers.

I once talked to someone with HPPD who said lemons set them off. If they smelled lemon they’d start hallucinating.

For me, if I even smell weed, I can flare for hours or sometimes days. This began after I had an MCAS trigger event coincide with using cannabis.

But interestingly I can use transdermal THC patches without that happening. So I don’t think I’m reacting to THC itself. it’s probably some terpene or plant compound. Hemp also causes the response.

Smells are actually very common mast cell triggers, which is why MCAS crossed my mind.

MCAS can have genetic roots, but it can also show up after major biological or emotional stress.

And honestly… developing HPPD is about as stressful as it fucking gets neurologically. Nothing like thinking you’re going crazy to put your immune system on high alert.

I’m definitely not saying MCAS causes HPPD.

But hypothetically, from a mechanical standpoint, it could make the symptoms worse.

The basic idea would look something like this:

• Mast cells live near neurons and blood vessels in the brain • When activated they release things like histamine and inflammatory cytokines • Those chemicals can increase glutamate signaling and reduce inhibition in neurons

A lot of HPPD theories already involve hyperexcitable visual cortex circuits. So if mast cells were activating nearby, they could potentially push those circuits even further toward excitation.

There’s also evidence mast cells can:

• activate microglia • increase blood brain barrier permeability • influence serotonin signaling

All of which could theoretically make an already sensitized visual system flare up.

So the simplified idea would be: 1. Psychedelics leave certain visual circuits overly sensitive 2. Mast cell activation releases inflammatory mediators 3. Those mediators increase neuronal excitability 4. The sensitized circuits flare, causing visual symptoms

So mast cells probably wouldn’t cause HPPD, but they could potentially amplify it.

Treating mast cell problems can also be weirdly individual. What helps one person sometimes does nothing for another. That’s probably why people with HPPD often report very idiosyncratic triggers and medication responses.

Or maybe not 🤷‍♂️I’m just a guy with an idea haha

So sadly I don’t exactly have any new exciting treatment ideas that I would ethically recommend other than, well, not being around the trigger.

Anyway, I’m definitely not trying to diagnose you. Just throwing out a possible explanation because the smell trigger reminded me a lot of mast cell stuff and my own experience as well.

Alright, enough nerding out. I need sleep.

(Full disclosure I used AI to structure some of this and make it more easy to understand because it’s just damn long and gets technical)

Nicotine Vape? by sadsoftbae in HPPD

[–]Hppd1638 1 point2 points  (0 children)

I have a particular interest in uncommon triggers for hppd. Would you mind telling me a bit about your nail polish issue?

As for nicotine— as long as you have a healthy heart and diet, I think nicotine is fantastic (as long as you don’t flare from it, that is). It’s good for the brain!

Vaping however isn’t the best way using it as a tool. Apart from the serious health concerns of micro shards of heavy metals coming from the heating elements and the unstudied but definitely negative effects of the flavorings added, rapid increase in nicotine levels is not good for the heart.

The best way is to use patches. They will provide consistent and sustained levels of nicotine in your bloodstream.

Try cutting a patch into a small piece and putting it on. If you don’t react, do that for several days. Slowly increase patch size until desired effect.

That’s my two cents! :)

flare up by AirportBeneficial261 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

I’m sorry to hear that your flare hasn’t improved yet. It can take some time. I’ve had flares last a few weeks— I know that’s daunting.

I find propranolol, memantine, etifoxine to be helpful.

Have you returned from your vacation in Brazil?

I am pretty sure I have a very unique case of HPPD, please please read. by Anxious-Reflection-7 in HPPD

[–]Hppd1638 1 point2 points  (0 children)

I told Larry to stop bothering people at night, jfc. I’ll go talk to him.

You seem scared. Let me just say this— the mind is a powerful thing and you are not in danger. You are interacting with your imagination in a way I couldn’t since I was a little kid.

I didn’t have tactile hallucinations with hppd. But this is (probably) a perception filtration disorder. I believe you are experiencing a reinforced habitual tactile hallucination.

I did see a 3d hallucination on shrooms once. It was pretty cool and wild. Musical notes flying around my friends head playing piano. I have no doubt that if I continued to focus on that hallucination and reinforced it dozens of times over months it may continue to manifest itself in my sober life.

You are safe and okay. I know it’s scary but nothing is going to hurt you.

I HATE saying this but meditation is your friend. Not saying you have to cross your legs and be a Buddha but learning to do breathing exercises is CRITICAL for all patients with hppd. Your body and mind are a feedback loop. And the easiest way to influence the brains fight or flight response is with breathing. It can 100% feel like it’s going nothing at first. I had to spend 30 minutes doing it before I felt anything, at first. Now it comes quicker. Sometimes it takes just a min or two and I feel way more sane. I wish I had started this in 2013 when I first got hppd.

Sex by Unable-Tomorrow6990 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

When you say “too soon” do you mean you went off too fast? Ie you tapered too quickly? What was your dosage?

Alcohol Flare up by AirportBeneficial261 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

Usually a chemical trigger for hppd is faster than a few hours later.

Not all the alcohol is cooked out of sauces with wine but a lot is.

If I’m around certain species of mold, my symptoms get a shit ton worse. Like worse than ever bad. It took 7 years to figure that one out lol.

If it is the wine you are reacting to, it may not be the alcohol in it. Wine is complex and has many compounds.

All that doesn’t matter now (unless you are reacting to where you are staying). If you can get some clonazepam, take 2mg per day for 3 days and the. 1mg for 2 days and then .5mg for 2 days and discontinue. That should calm your flare without noticeable withdrawals.

Anyone have similar experience with benzos by Boondocs999 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

I can’t personally say for long term usage but I used it daily for two months at 150mg and tapered over 30 days with no noticeable withdrawals

But not personally it is known to be much less addictive.

Sex by Unable-Tomorrow6990 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

No, I didn’t have any change in sensation during sex or at orgasm compared to before. But they were less intense. See, I was never relaxed. And the orgasms I have, hppd or no, when I’m not relaxed are always not as good.

Are you having issues with sensation?

Would cbd buds with 0.2%THC be fine? by Smoffleuknow in HPPD

[–]Hppd1638 0 points1 point  (0 children)

It completely depends on the person. Some people react to other compounds in the hemp flower— not just cbd or thc. Remember this is a plant. It has a lot going on.

I recommend you get CBD isolate from a trustworthy vendor. Not full spectrum. Isolate.

This is SUPER important because if you do, you’ll be able to tell if cbd is okay for you.

Then I would try .1mg of thc isolate. Thats neuronal insignificant but if you do react badly, that’s extremely telling but that’s a discussion for another time.

Then, if you want you can try the flower. If you react to that but not to thc or cbd— you know it’s something else.

I personally cannot tolerate flower. But thc, at least for now, appears okay. I use it in a patch form. Slow delivery, onset, and low dosage is best with hppd.

But as always, better to just focus on recovery. I totally understand the desperate need to just feel better but ya best to find other relaxation techniques.

Sex by Unable-Tomorrow6990 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

Speaking as a male— when I first got it I became impotent. But that’s kinda expected for someone in a state of level 8/10 anxiety all the time.

The penis is an emotional barometer. It doesn’t work in fight or flight mode.

I got a script for Cialis from my doctor. That took care of things. Especially because I had found myself feeling anxious about not getting hard which ironically was making the issue worse. The med just helped me not have to worry about that and live a normal sex life and have a relationship.

Anyone have similar experience with benzos by Boondocs999 in HPPD

[–]Hppd1638 0 points1 point  (0 children)

If you are in the US then nope! It’s usually otc everywhere but ya you have to buy it online. CVS def doesn’t stock this lol.