brake

On 4/25/2024 at 8:27 PM, AmitV said:

How long did it take for it to start easing? Did anything specific help with it?

I think time and healthy lifestyle. But I stopped trying to be so healthy and noticed that the tinnitus has still permanently decreased in severity and frequency.

On 4/17/2024 at 10:11 AM, AmitV said:

Anyone here who also has tinnitus and eventually got better or went away? Ive had tinnitus now for almost 10 months.

Yeah dude my tinnitus was pretty bad and now I rarely get it although I still do get it.

Andrew Callaghan got it from taking "natural" shrooms too not synthetic stuff.

Great exposure for visual snow and HPPD! Also an interesting interview! Around 1.3 million views in 7 days! It's on YouTube and Spotify.

Andrew Callaghan: Channel 5, Gonzo, QAnon, O-Block, Politics & Alex Jones | Lex Fridman Podcast #425

12 hours ago, Vievang said:

Lots of people swear by it for reducing anxiety and stress. I didn't tried it yet but I surely want to.

Interesting, I never heard of it. It helps a bit. The herbalist was telling me I could do acupuncture for anxiety as well. Has anyone had success with acupuncture? He didn't have supplements for epilepsy or psychosis.

14 hours ago, HeatherinTO said:

Thanks Spartan and Jay. 

My life fell apart - I had to abandon a master's program, I lost my job, I almost lost my marriage, and I lost friendships (people who wouldn't hear that psychedelics could cause harm). I look like I've aged 10 years in just over 2. Strangely, I also lost my ability to visualize and to absorb information the way I used to. 

I can't tolerate most medications but I've found some success with guanfacine (related to clonidine). I still have visual snow, but the after images and unstable vision have decreased. I no longer always feel trapped in fight or flight mode, although I still struggle with anxiety. 

What's funny is that I never would have tried psychedelics outside a "safe" environment. I thought this was my ticket to healing... And I would be well supported. 

I'm now trying to lend my voice as a psychedelic safety advocate. 

I was worried this would happen to me but it didn't exactly. I did have pro psychedelic friends that didn't agree with me though. I am a lot less popular than I used to be in high school and college. I struggle with anxiety till this day as well. I truly hope you are doing well!!!

Funny to me... one of my bestfriends was like yeah of course you should take it, severe side effects are like less than 1%.... and I had bad luck again

1 hour ago, AF44 said:

Thanks! What did the Gabapentin do to you, out of curiosity?

I developed some rashes and a bunch of other stuff but I don't remember the details however when I told the doctors, they agreed that I should stop taking it. I took a picture of the rash as well. Oh yeah, and my breathing became shallow.

1 hour ago, Spartan said:

Tik tok link 

https://vt.tiktok.com/ZSFpSDRuL/

Man so many trolls 

Tho sone very empathetic understanding souls out there. 

Doing my best to educate with the facts. 

 

Wow didn't realize how dark this seems until I saw it on TikTok. Hopefully Joey doesn't die in vain!

I still remain open minded however I kind of am against psychedelics because I simply would not have had this was it not for psychedelics.

On 4/8/2024 at 12:21 PM, AF44 said:

Hello all!

I have a question: for those of you that have tried lamotrigine for your HPPD, how effective was it? 

Lamictal was good but I got side effects like after Gabapentin although not as bad so I had to stop taking it. It didn't cure me though. I don't remember how effective it was exactly but it did help with anxiety, depression and some of the visuals.

13 hours ago, Spartan said:

This is excellent for awareness etc etc 

It's going semi viral on tik tok.

On 3/11/2024 at 12:04 AM, AmitV said:

I started active vitamin b6 (p5p) for treating drug induced akathisia. Turns out it increases production of the liver enzyme that delivers brain gaba. An immense relief from anxiety, agitation. Noticed my visuals improved 40% over 2 months. Still have some crazy stuff. Who knows someone might get a bigger benefit out of it. No side effects. I’m up at 500mg/day. Split into 3 doses per day. Some people report nausea and headaches over 100mg doses. But my understanding is in some people 50mg is enough for an impressive improvement. 
 

Thought it was worth sharing here.

Wow that's amazing!

1 hour ago, AF44 said:

That’s very true. Last Thursday I had to take my son to the ER. We ended up getting home at 4:30 in the morning. I was fried. I set my alarm for 9:30 am so I didn’t sleep all day and mess up my sleep schedule, and felt like crap. Once I took a nap though, I felt better. There is no way I can stay up all night. 

Yeah and before I was able to pull all nighters. Pfttt not anymore

1 hour ago, AmitV said:

supplements and meds both can be hit or miss. What works great for one, does not for the other. This is true amongst all kinds of psychiatric and neurological disorders. 

True but it's been 11 years and I'm becoming impatient. Even valium, xanax and klonopin have it's limits. Lamictal was working somewhat however of course I get side effects from it so I had to stop taking it. It is better at certain moments like I got that completely sober feeling recently and can imagine again how someone would think that it would be impossible to still be tripping long term. The job market is terrible nowadays which doesn't help either.

24 minutes ago, AmitV said:

I recently did a QEEG which showed hyperactivity in my right temporal lobe. Which includes the amygdala (fight-flight), hippocampus. The temporal lobe has deep connections to limbic, auditory, visual perceptual centres of the brain. Essentially the treatment is breathing exercises, slowing down thoughts, distraction, trauma therapy. 
 

https://my.clevelandclinic.org/health/body/16799-temporal-lobe

The QEEG I did also lines up with the below application of RTMS for HPPD.

but the temporal lobe also responds to epilepsy medications and supplements in calming the temporal lobe in temporal lobe epilepsies. It’s also an area affected in schizophrenia. HPPD isn’t a psychiatric disorder, but a functional neurological disorder.

https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder/

which is why clonazepam, keppra, memantine, magnesium and several other epilepsy supplements sometimes work. Epilepsy diet which is primarily keto diet is also helpful. 

increase gaba and decrease glutamate (antioxidants and magnesium), can help. 

Niacin according to my research in high dosages is highly applicable. Saturating the brain with niacin leads to immense relief from oxidative stress, overall stress, calming of thoughts, it reduces methylation, is utilized in schizophrenia, ptsd, and several related conditions such as drug induced akathisia and dyskinesias.

Good research however I found that high doses of vitamins b6 and b12 made me hysterical.

I gained access to some good AI and asked it about visual snow and was blown away with it's accurate information and how quickly it was written. It listed the right temporal lobe as being affected.

19 hours ago, Jay1 said:

Thanks for the update, i'll give it a try! Anything that could help ease my dpdr would be priceless

I actually bought it for $9.99 (USD) plus tax. Relatively cheap considering today's medications and supplements. I feel like it's helping more as time goes on and I increased the dosage. Yeah my depth perception definitely improved. But the visual snow is worse because I'm more aware of it. I feel more precise.

So unfortunately it does not help with the visuals however it does help a bit with the anxiety, depression, depersonalization and derealization. I do feel a bit more level headed and less clumsy. I researched the ingredients a bit and they do seem to promote anti seizure activity within the brain. They are neuroprotective. I feel like it makes the visuals worse actually because since it decreases depersonalization and derealization you become even more aware of the visuals. I don't know if this is true for sure but I think depersonalization and derealization is the body's defense mechanism against the visual snow and HPPD. You have to become unaware to deal with this 24/7.

Yes for some reason sleep seems to be very important with HPPD.

I randomly found a traditional Chinese medicine shop today and asked the doctor what is good for anxiety and he gave me Xiao Yao San. He said it's not to sleep but to feel calm. So I'm gonna finish the bottle and see what happens. Has anyone heard of this stuff before or taken this stuff before? The pills look unique.

On 5/22/2021 at 10:20 AM, rlopes said:

To make it short:

1. Did Keto during 25 days. Symptoms went down to a point I could barely notice them.

2. My doctor said to stop it because I was having too much animal protein

3. I went back to eating high carb, and symptoms came back to baseline

-> Why am I not staying on Keto?

Too many side effects, and dangerous on the long run

-> Notes

- Most people who thing are doing Keto are not in real ketosis. It takes huge commitment to do it. I was using a blood ketone tester and I was getting about 1.5 reading in the mornings

- This is a complex diet, you gotta study it well before starting

-> Takeways

Keto puts the body in a metabolic state similar to fasting. It increases BDNF and downregulates mTOR, stimulating autophagy. It also modulates Glutamate / GABA ratios.

Next step is to try Exogenous Ketones, to see if I can get the same benefits without the drawbacks.

I hope this helps whoever is desperate for a reduction in symtoms.

I know some people who were safely doing Keto for a long time. Is it really that dangerous?

Maybe there is a way to cure or treat HPPD by replicating what happens in the brain during mania without actually inducing full blown mania?

Functional neuroanatomy of mania

On 3/13/2024 at 7:37 PM, John12185 said:

I'm bipolar 1 and I have had two manic episodes one at 30 and one last year at 38. When I'm manic all my HPPD symptoms go away. When I come down from the mania and shoot down into depression they are back really bad. Thoughts?

Very interesting and the first time I heard of it. I remember watching this schizophrenic on YouTube who also had HPPD and he never mentioned that and he would say he could tell the difference between his schizophrenic hallucinations and HPPD pseudohallucinations.

On 3/15/2024 at 5:50 PM, Passion said:

It's been 12 years since I got dpdr and hppd now. I still have symptoms like afterimages, especially during nighttime and when I get tired.
And dpdr occurs from time to time. Even though some symptoms are still there, they are no longer the focus of my day as they used to
be during the first 3-5 years with the disorders. It is a blessing to wake up and not have my dpdr/hppd to be the first thing I think about in the morning.

To anyone who is in the beginning of this suffering journey: you will get through it. Life will get easier. 

I still haven't returned to how I was pre-disorders. But I have accepted that I might never again feel "normal" as I was before. I honestly don't even remember what it feels like to feel normal. 
This has become my new normal and I no longer feel fear in being this way. I do grieve the loss of my old normal, but life feels much easier now that time has passed.

I wish everyone luck and strength on their journeys. 
And once again. Forever thankful to this forum and people here who comforted me in my biggest time of need. 

I'm around the same time frame as you (11 years). It gets a lot better but it's still very distracting for me at least. Like just now I felt like I was semi tripping again and at night the headlights from bicycles, motorbikes, scooters, cars, etc are like overwhelming. Sometimes certain noises become like overbearing. Thank you and I wish you the best as well!!

On 3/5/2024 at 10:46 AM, AF44 said:

I’ve been on Klonopin every day for 14 years. So do you think even if I went through a proper withdrawal, all of my symptoms would return permanently? I couldn’t handle that

I don't know. I've never been through the experience. I have symptoms even on the benzos lol. I'm used to it.

5 hours ago, James3524 said:

Has anyone gone through benzodiazepine withdrawal and had their HPPD permanently worse? I had Phenibut withdrawal (VDCC blocker & GABAb agonist) withdrawal and my symptoms have been quite exacerbated. I think what's happening is GABAb receptor desensitization and AMPA/NMDA sensitivity; leading to a net increase in neuronal excitability and making my condition worse. 

Interesting. What I found is that I'm "better" overall after benzo use. However I can't escape the permanent visuals.