brake

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.

14 hours ago, firehawk said:

Does anyone have problems with taking vitamin C? its really the only thing I have been starting to take everyday because its the sickness season besides magnesium. Now I have noticed I get these headaches in the back of my head and I get anxiety and the vision worsens I feel from this. and I know that must be what its from since its the only thing I take. I stopped taking for about 3-4 days and the headaches stopped. Does anyone else have the problems or is my sensitivity just super high this early since ive had hppd and got sober less than a year ago.

Actually no, I never had any problems with vitamin C.

I read about other posters curing after around 5 years. I also read about an R&B singer who said she had minor visual disturbances (not as intense as HPPD) after using LSD that lasted 10 years. I think after 10 years it's safe to say you will have it forever.

On 2/26/2024 at 5:03 PM, LonelySailor said:

Hey guys! I hope you are all doing ok, or getting well at least.

I have HPPD for almost 2 years. No doc here could help me at all until now because it seems that no one here knows the disorder.  If anyone here knows someone that could help, it would be great.

I live in São Paulo, but someone in any city is already a good help. Maybe even a medic from Argentina or Uruguay could be a possibility.

Thanks all!!

HPPD Specialists Directory

16 hours ago, Spartan said:

thankyou im actually Australia..

I'm a severe and long term sufferer / over 30 years. 

Yes a part of the law is that human beings have the human right to medical treatment, tho I feel I am got getting it sadly and therefore condition worsening and immense suffering.

Reason things have been so worsened over the past 2 years is because I have had massive existential treat / stress and trauma that is not going away, yet. This has driven me to the edge with no relief. 

I'm currently in disability support also for severe hppd. 

I recently contacted Dr Locke in the USA / hppd specialist, tho he charges something like $500 USD an hour . That's out of my price range. 

I have played a key role in the existence of the hppd protocol study, tho that is 800K to get It started, don't have it yet and Still looking at funding options. 

Yes I have a mum and a dad they understand and they are awesome. They are likely the only reason why I'm still here physically today. 

Yeah I did a recent post about removal of eyeballs to see if still hallucinating tho unfortunately many think it would still be a yes because it's coming from the brain and not the eyes. 

Thankyou I appreciate the support.

Wishing you blessings , peace and healing also.

HPPD specialists are so expensive!! I called them as well.

3 hours ago, AF44 said:

I just read what you wrote and I thought it was FANTASTIC. So many similarities as to what I experienced/experience, despite currently taking Klonopin. (Been on it for about 14-ish years now) I got HPPD from LSD back in 1998. I had done LSD before with no issues, but it only took one damn random trip to ruin me. I loved the pictures you included. So accurate it’s scary. My husband knows I have HPPD and he’s extremely supportive, but sometimes he just doesn’t get it. He thinks it’s just visual stuff, and like it’s not a big deal to see snow or halos or tracers. Like it’s not scary, and he sees stuff out of the “corner of his eye” all the time and it doesn’t scare him. It’s not his fault he doesn’t fully understand, but at least he tries. I am going to show him the pictures you put in your book. This sounds corny but I am so proud of you

I am so happy you guys like it!!!

Yes it is very scary and the brain is like: why is this happening? I'm sober!

4 hours ago, AF44 said:

Omg I’m fixing to read this right now. And the bipolar thing… the psychs diagnosed me with Bipolar 1 like over 10 years AFTER I got HPPD. And now no one believes me because people who have bipolar don’t know they don’t have it Any sort of “mania” I experienced was either alcohol or psych drug-induced. And who the hell wouldn’t be depressed and anxious living with HPPD? 

Yup...exactly... although I never have mania, if anything I'm the opposite I'm usually sleepy and tired. I think all of these visuals tire me out.

Okay so I tried to write a book about my 10 years of living with HPPD, visual snow, anxiety and depression (psychiatrists also love throwing the word bipolar around lol). I also included my previous drug usage in college before I had any disorders. Unfortunately I do not have enough content. This is all I have, I hope it helps our cause somehow. It's sort of like a diary and summary at all of my attempts at finding a cure. However after exercising today I still have severe visuals (it's almost 11 years now). For the first 22 years of my life I had no disorders and life was way easier.

Shattered Perception, A Journey with HPPD and Visual Snow.pdf

On 2/1/2024 at 1:26 PM, AF44 said:

Wow like I’m 10 years late to seeing this post, but I had the same idea! I even actually emailed it to someone on this forum. I had sat for a while and thought about how we could pull it off. It would be extremely expensive of course. We would have to agree on a venue. I was thinking that we could have speakers (professionals) and also kind of like a carnival (no rides though, haha!!) We could have booths, games, food trucks (or whatever) and make a damn day of it!! Anyone interested in actually trying to figure out a way to pull this off…?

Sure, why not?

People use drugs like Xanax to halt a bad psychedelic trip — but "trip killers" also come with risks

On 3/5/2014 at 12:53 AM, LaizzesFaire said:

Just thought this might be of interest to some of you guys. Media attention to this disorder is rather limited, even though I am aware of the fact that it´s seemingly rare. Perhaps HBO´s show True Detective will spark some interest in drug induced visual disorders (Think I saw a thread about it here) but that´s probably wishful thinking

 

 

 

http://www.cjnews.com/node/119775

 

http://starstore.ca/collections/star-dispatches-ereads/products/my-never-ending-acid-trip

 

Haven´t had the chance to read the book myself as of yet, just happened to stumble across it while searching for an old case study involving remission of hppd symptoms after treatment with sertaline(zoloft).

 

 

 

Apologies for any grammatical errors on my behalf, English is not my first language.

 

I wish everyone the best! (and I´m painfully aware of the horrible misspelling of my username. Note to self: Don´t try to be fancy because the cognitive impairments from HPPD will bite your ass )

 

Edit: I´ve read the book now and would certainly recommend it. While the story itself is rather personal and the theorized mechanisms , or lack thereof, that causes HPPD isn´t exactly groundbreaking (not that I expected them to be) I do believe that we all can relate to at least some parts of his experience as we all share this burden.

 

It´s always nice to know you´re not alone and I would like to use this opportunity to thank this community (which he actually refers to in the book) for being here and truly believe I speak for most of us "lurkers" when I say that just reading and browsing this site has been an invaluable source of knowledge and comfort through dark and confusing times.  Good luck to you all.

The links do not exist anymore. I was thinking about writing a book on this lol

Antipsychotics made my HPPD worse so I was taken off of it.

Aggregate all of the articles and studies in the "Research Articles, Publications and Studies" section of the fourm

On 9/15/2023 at 3:39 AM, Jay1 said:

Hey, can you think of anything that is causing this increase? New meds, drugs, stress, more alcohol, coffee, change in sleep pattern? 

I have had several spikes during my time with HPPD and all but one have returned back to normal after a while (sometimes weeks, sometimes months). The one that didn't was when i stupidly smoked salvia. 

Alcohol helps me while weed and coffee I completely stay away from.

I have some double vision and blurry vision from the Lamictal. This sucks because it works well for my depression and anxiety.

https://www.sciencenews.org/article/psychedelics-improve-mental-health-nerve-cells

https://medicalxpress.com/news/2023-08-medication-therapya-psychologist-neuroscientist.html

Yes except visual snow and hppd should be included in the fine print lol

Hey just curious, did you try Lamictal? It affected me in a unique way and made me less depressed. Might be worth a try for you.

Hey how has everyone's experience been with antibiotics? I am currently on amox-clav and it has exacerbated all of my visuals.

Yes I remain optimistic as well. I think we can cure schizophrenia, HPPD, visual snow and other things as well one day.

Taken from the article:

"The five brain chemicals examined in this study were noradrenaline, dopamine, serotonin, glutamate and GABA.

Researchers found that in patients with VSS there were particular differences in the activity of glutamate and serotonin networks in specific areas of the brain. There was less synchronized activity (or functional connectivity) in the glutamate networks in the anterior cingulate cortex (ACC) in those with VCC compared to healthy controls and those with migraine. The ACC is a hub for thinking and top-down control over sensory inputs and the different pattern of activity could represent an interruption in the filtering and integration of visual information.

Analysis also showed that VSS patients had reduced functional connectivity in the serotonin networks of the visual cortex, insula, temporal pole and orbitofrontal areas of the brains compared to healthy controls. This reduced connectivity in serotonin networks was also seen in migraine patients with aura suggesting a biological link between VSS and aura. The findings suggest that serotonin activity in VSS patients may be influencing the integration of complex sensory information.

The results did not find any differences for the other brain chemicals that were investigated in the study."