Hi everyone, old timer just found site

[Alex]

Hi everyone

I have recently reignited my search for answers after my last attempted about 18 years ago when I found out what this disorder was called, but not much else and to my surprise found this excellent site,

My name is Al, I am 39 and I have had hppd for just over 20 years, loooooong time,

For a two year period 17-18 year old, I took lsd trips from time to time and ecstasy at the weekend, during which time I developed hppd.

I realized at the end of this period that these after images and other visual disturbances where serious and not just due to a fuzzy head from smoking cannabis, and I stopped all drug taking , however I continued to drink alcohol moderately at the weekends.(this wasn’t really a choice if I wanted to remain socially active, as by now I had the obligatory anxiety that seems to go hand in hand with hppd ,and the alcohol allowed me freedom from this).After 6 months with no improvement I was sure I had done irreparable damage to my brain and imagined large areas were dead , there was no internet then and my imagination ran wild .

I was scared ashamed and depressed.(dark times)

I didn’t tell anyone for the first year or so, and then I told my GP who told me the after images would go in time and sent me on my way.

I felt better after this, it gave me hope and the depression lifted. So then I just waited, and waited and waited.

For anyone who has recently developed hppd I don’t want you to read this and believe that you’re definitely stuck with this for life, as it seems by reading other peoples stories that some are getting better, and the hope of a full recovery can help to keep depression at bay, however if after a few years with no improvement, I think maybe that acceptance is the key to dealing with this disorder , and realizing that if this thing doesn’t get better on its own, then it’s not the end of the world, you can still lead a normal life and just try to forget about it.

I’ve never told anyone about my hppd except the doctor at the beginning, I just put it to the back of my mind for years ,the less I can think about it the better .However recently I told my wife about it (seems weird I know, we don’t usually have secrets.) why now? I don’t know, maybe because I’ve had it for so long (I’ve actually had it for longer than I haven’t???)and I’m older, happier and felt that It was ok to purposefully think about my hppd again.

Anyway she made me go to the doctor who referred me to a neurologist who didn’t know what hppd was and told me I’d most probably damaged nerve fibers and sent me on my way.

It was this that prompted me to search the internet again for information and find this site. I find it fascinating reading through all the posts, hearing people’s stories and finding out about different treatments and learning about other related symptoms, ie DP/DR, sounds horrible!

Anyway that’s my story, nice to meet you all,

Al

[2muchmandy]

Hi Al, welcome to the forum. Im just 19 and had hppd for over a month and a half now. It looks like il make a recovery however reading stories like urs are frightening in one sense that this disorder can last for a lifetime, but it also reasures me knowing, u can actually lead a normal life and live normally. What symptoms do u have? how have they altered?

[Alex]

yes , I think a full recovery is possible if caught early, don't jepodise your recovery by taking any drugs at alll (ever again!)

My symtoms include after images, traces and floating shadows, these get worse when tired and all but disappear when outside on a bright day(if not tired or hungover).no dp thank god!

My symtoms have remained the same throughout the years although probably felt worse in the early days when I would dwell on them.

what symtoms do you have,did they come on all of a sudden?

you seem to have a positve atitude, you should be fine whatever happens.

[2muchmandy]

I instantly cut all drugs booze cigarettes coffee and red bull out my life. I started drinking lots of fresh juice and eating fruit aswell. Want the best chance at recovery. I share most of ur symptoms but I get paranoia in little bursts, brain fog is horrendous, dr/dp but thats basically gone now. Ghostly patterns on the walls under the snow that piss me off. Basically I decided it would be my last time on mdma. So I took some and felt fine. Then took some mxe legal harmless ketamine substitute to ease come down. I was kinda tired, but then I became more awake and noticed 2cb like patterns on the walls, extreme changes in body tenp, sweating, shivering, whole body aching and shaking. I thought I had seratonin syndrome, infact I might have. The next few days I was scared as I realised the snowyness and the paranoia might not go away, then a week later I found out about hppd and this site. So it all set in very quickly

[Jay1]

Welcome Al.... You seem to have a similar back story to me... another victim of the early 90s rave scene, I imagine?

Good to hear that you have battled through and lived a decent life (what more can we do?)

All the best, Jay

[Alex]

It seems like your doing all the right things 2muchmandy I hope you recover soon.

take care

Al

Hi Jay

Yes thats right, who'd have thought danceing could be so bad for your health!

For me It has been a case of putting it to the back of my mind for all these years. I'm married and have two great kids, so shelving hppd hasnt been so hard.

Right now though I'm finding it interesting learning more on this site about hppd, everyone seems very clued up on treatments,reserch and what is actualy going wrong with people with hppd and Iv been in hiding since mine began and so know nothing.

Have you taken any psychedelics with hppd? even in the begining,

Al

[Jay1]

I only found this site a few years ago too.... It was quite a relief to put a name to the illness and read up about treatments etc.

Yea, I did trip a couple of times after getting hppd (I was drinking alot, back then, so was not in a good frame of mind to deal with my problems). While I', not sure tripping again really worsened my hppd, I do think it prolonged any chance of recovery. I would be scared stiff to do them now though. I tried Salvia a couple of years ago and that undid alot of my good work.

[Alex]

Im trying to get my head around why some people get better and other dont.

Although I havent done any psychs for 20 years,in the very early days I probably had ecstacy or lsd quite a few times with hppd, maybe this is what makes it perminant.

whats salvia?

[Jay1]

it is a plant found in South America... Pretty hardcore dissacociate and hallucinogen.

my guess, for us long termers, is it is down to a.) the amount of drugs we took and/or b.) Our sensitivity to those drugs.

[windscar]

Welcome to the community. I believe HPPD is permanent for almost everyone, and it actually is relieving to hear that many, ike you, don't get worse through the time, as there are cases of this. What are your symptoms exactly?

[2muchmandy]

fuck doing drugs with hppd. im scared to drink a beer

[Alex]

Hi Windscar

My symptoms are visual snow (i guess, this term is new to me ) but it looks to me like the air sort of has grainy colours in it.

I also get after images from objects or wherever there is a contrast of colour and also floating shadows although I believe these shadows are after images forgotten about and then floating back into view later on.

Apart from these visual symptoms I am anxious in large social groups although that might just be me, pre hppd I was a teenager so I dont really know what I would be like without hppd in that way.

All these symptoms have been a constant throughout the years although for the first few years I used to get terrible jaw muscle ache but this was probably due to the stress of it all, I actually wore a motorbike helmet in bed when it got bad because this supported my jaw muscles and stopped the pain.

I dont understand though how one person can get better and another not. its surely either perminant or not???????

although Iv been reading about genes and shit on the reserch forum and beginning to realise things arnt as simple as me

Wow some folks know a lot about stuff on this site!

[windscar]

I see. Well, nobody understands HPPD yet. It is a complicated disease because it is very, very specific, and out of the scope of most research fields.

[special k]

Hi everyone i just recently joined I've had hppd for 8 years now though. I haven't done acid or mushrooms since getting hppd, but i have been able to do dxm, nitrous, cannabis and molly on a monthly basis over the past year without any increase in symptoms. I don;t know why this is, I took a break from everything for a year but that was back in 2006-2007. They did get worse once, 2 years ago on a high dose of molly but after a couple months they returned to baseline.