clean

On 5/26/2022 at 6:03 PM, Jay1 said:

I seem to remember reading that a qEEG can pick up excitation in the visual cortex in HPPD sufferers, so that would probably be the place to look for a fMRI too. No idea if it would pick anything up though. 

i had a Qeeg did not show anything

On 5/24/2022 at 10:34 PM, MentholFlavoring said:

 

Thank you for mentioning this, it looks interesting. However, it involves a very invasive and dangerous surgery with many complications and is very unlikely to be applied unless someone is so severely disabled that even basic activities become impossible and other options have been exhausted. Sometimes, it's done to Parkinson's Disease patients and seems to improve their symptoms significantly. It does look like it could potentially help with HPPD.

There are frequent discussions on this forum about non-invasive brain stimulation like TMS, that could be an option. It's mentioned in some of the studies as a potential option, I believe some people have tried it here, but I don't know how successful it has been.

so whats your thoughts about the neuroimaging study that will be happening? Do you think it will show the part of the brain affected? 

so their will not be a treatment or it wont improve with time?

I have had some blood tests and they have come back clear, From initial sightings my QEEG is somewhat normal. but still waiting on offical analysis. I don't know what to do i cant accept when they continue to progress. I just wish they died off abit

On 3/15/2022 at 10:50 PM, Onemorestep said:

If you have hppd for that long and it continues to get worse, you likely have another condition as well. Hppd usually stabilizes within the first few months and then proceeds to get better— until recovery or plateau. 
 

1) mold

2) lyme, bartonella, babesia,

3) candida 

4) sibo/sifo

These are things I would look into that can exacerbate or mimic hppd enough that people end up here through self diagnosed symptoms. 

how can you get tested for these? i did a lot of tests for mold and everything came up clear

On 5/6/2022 at 9:17 PM, David S. Kozin said:

Hi! Thanks for sharing

I will have much more to say on this type of therapy in a week or so. 
 

however, novel methods like this are definitely promising on face value. This direction of therapy is a welcome change and multiple types of treatments (non-pharmaceutical) are in various stages of investigation. 
 

I hope to have great news in a week. 
 

- david

 

why in a week?

On 5/3/2022 at 5:49 PM, Jay1 said:

I tried tDCS, which is like the poor man's TMS! It didn't really do anything for me, though I only tried it a few times. 

Keep us up to date on the TMS.

did you try it like this ? https://www.frontiersin.org/articles/10.3389/fpsyt.2022.867314/full

TDCS treatment  for HPPD, What do you think?

On 1/20/2022 at 6:04 AM, Rodertkarlsson said:

Aloha to me this Is the worst symptom. Seems to get worse with time. Indoors  is the worst. Being outside  helps alot.it helps embrace this permanent trip.yes visual snow drives me crazy. 

why do you think its getting worse? and why do you think it has never improved?

but thank you ill keep pushing 

23 hours ago, Jay1 said:

Keep on fighting... See what some months sober does for you, even if your VS doesn't improve, i am sure you will see other aspects of your life get better. 

honeslty dont know how other aspects can get better if my snow is like this.

1 minute ago, Blossy said:

Im 45 now, and my HPPD started 30 years ago, i've not done E or LSD for 24 years at least, nearer 25 for sure.

The Sky is so bright here I honestly see nothing bar the sun burning my retinas when I look at it!

My snow varies, at night it's the worst, during bright days there can be days I do not even notice it. As noted above, mindset my friend, try to look past it and focus on the content of the life in front of you, not the quality of the picture.

 

 

i hope to see some improvement, over the next 6 months of sobriety. I understand its never going to leave but lessen is all i would like 

5 minutes ago, Blossy said:

I honestly think i've had it my whole life, but it was really brought to the fore-front of my sight due to too many years of bad living though the Extacy and LSD years.

If I focus on it, I see it more, if I don't, I see it less. Generally!

how long since doing these drugs? and what does your sky look like?

how long since doing these drugs? and what does your sky look like?

1 minute ago, Blossy said:

I had a bad time around 6 months ago, and my visual snow is the one symptom that seems to have increased too without going back to 'base levels'. At night seeing objects close to me is just a fuzzy and 'noised' mess, however, day comes and things are bright and the snow is there but I look beyond it, and as per all the symptoms we all feel in varying degrees not focusing on it is one of the best treatments. Mindset is our greatest ally in my opinion. Until there is a magic pill to make this go away anyway.

Being sober is a good idea, I had a rough night on the booze a few months ago and woke up in the night for tne bathroom and my snow was so bad through the pending hangover it was like waking through a swarm of bees - that was the night that I thought too much booze definitely can affect this so going sober for a while may be a good idea. Im generally a 'social grazer' on alcohol, rarely drink 'too much'.

For ref, i'm positive i've had VS all my life, as i've mentioned on here before when I was a kid I used to think, and say, I could "see the Air", which I now know, and although it is definitely MASSIVELY exaggerated since my hallucinogenic days, i've always had.

Focus on what's beyond the snow, I consider it as interference only, like watching a low-res movie online, and a standard def TV show - the content is still there, just not as sharp as you would like it to be.

x

 

 

how long has it been for you? 

It's been 19 months from my flare up, I have decided to stop drinking couple weeks ago. My snow is as bad as its ever been. I don't know how much i can deal with it, how long i will last. I am going to try go sober for 6 months, but i just dont see it getting any better.

On 1/3/2022 at 8:20 AM, Kaleidoscope said:

50 years for me with HPPD. I was 12 when I began taking LSD and continued for the school year until I was hit with HPPD at the beginning of summer 1970.  It has been a huge help to finally know that this is a reality and that others experience the same. For most of my life I suffered this alone. I have adopted a very quiet life. I avoid a lot of light and sound stimulation. So...I've survived this, had a big family but find I have to sit in the dark corner sometimes to untangle from too much stimulus. I have gravitated toward a minimalist way living somewhat like Old Order Amish. My life has been molded by HPPD without my realizing! Knowing about Mad doc and now Roderkarlsson and others makes me feel sad for us! Like Clean says no ones seems to believe... and knowing we are not alone is a huge gain. I spent 45 years alone in this and it definitely affects your personna. My hope is that this does not worsen in old age. We are on the frontier because I suppose we are some of the first to experience this. Just what will develop in older yrs is yet to be experienced. Well, God help us! God has helped me to weather it so far! Happy New Year! Kaleidoscope

did your visuals ever improve?

13 hours ago, Rodertkarlsson said:

Aloha thanks for responding. Nice to know I'm not alone. I'm blessed as I live in maui a psychedelic wonderland.i spend most of my time outdoors  .embrace the permanence of this gift.whatever u resist  persists.im technology challenged. Mahalo 

hi did your hppd ever improve? say your visual snow?

On 11/24/2021 at 12:42 PM, Lucas said:

Same for me with shrooms, after the first hallucinogenic surge I feel completely calm and 100% relieved from HPPD, I get delusions of sobriety even after taking lot of grams and just feel soooooo good... But the weeks after that are worse than before...

what drugs do you continue to do? and which ones dont affect it?

4 hours ago, MichaelHPPD20years said:

Had HPPD for 20 years but for the first 10 years or so it seemed to get worse about every week or every month. I always thought my brain was slowly failing me from the damage that acid did to me, never could explain it... Lately I've felt better than I've ever felt since I fell into this hellish nightmare and have been making improvements (with a little help) but no one seems to believe me....

do you know why? were you sober first 10 years