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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum
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HPPD since childhood, without hallucinogens

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Hello all,

 

I've had HPPD  all my life. I've never used hallucinogens except for marijuana however I had HPPD before that, since my earliest memories.

 

It's quite bothersome and depressing but I'm perhaps lucky in comparison to you who know an alternate experience.

 

The fact that I've had this since birth may be due to other mental conditions.

I've been diagnosed with several psychiatric and neurological conditions including:

NLD (non verbal learning disorder), ADD, clinical depression, schizoid PD, psychotic personality organization, potentially dissociative disorder NOS, potentially aspergers/PDDNOS/autism spectrum disorder (gonna get tested in a while, though likely negative). Twice I experienced marijuana induced severe depersonalizion/derealization and commorbid panic disorder for 4 months and 6 months respectively, which was the worst time of my life hands down, although I always still feel a bit depersonalized and as far as I remember I felt depersonalized all my life. However the experience with DP/DR did not as far as I know had any impact on HPPD.

 

 

I initially registered to this forum because I wanted to get my experience out since I think the fact that I and perhaps some other people were born with this disorder can be  of neurological relevance. Hopefully I can learn here to better deal with and medicate the condition and reduce symptoms.

 

 

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I'm not sure why you think you have hppd?.... If you have had visual disturbances all your life, it is certainly not hppd. Visual snow perhaps, but not hppd.

 

hppd needs an initial stimulus..... drugs mainly, sometimes meds like SSRIs... It is not something that just happens without that stimulus though. That would be an entirely separate disorder.

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Visual disturbances that I experience include:

- Halos or auras surrounding objects,

- trails following objects in motion,

- Apparent shifts in the hue of a given item,

- Air assuming a grainy or textured quality (visual snow and static)

- Distortions in the dimensions of a perceived object

- A heightened awareness of floaters.
 

 

What other disorder can it be?

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Halos/auras = persistent aura without migraine

Trails - do they happen if you follow the object with your eye, or if they move past you without focus?

Shifts in hue/colour - common visual disturbance from anxiety

Snow - occurs in people without drug use

Distortion in perception of perceived object - can happen from being tired/Alice in Wonderland Syndrome

Heightened awareness of floaters - anxiety

Honestly, it is so hard to classify HPPD unless you know you really have it. The fact that doctors however have labelled you all those neurological disorders though... I don't know te story obvs but that amount of disorders being diagnosed on you is just obscene on the doctors behalf.

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Trails - do they happen if you follow the object with your eye, or if they move past you without focus?

Both but they happen stronger if an object  moves past me without focus. However this is not something that disturbes me really.

 

 

 

but that amount of disorders being diagnosed on you is just obscene on the doctors behalf.

I've had 3 psychologists, 2 psychiatrists.

 

5 diagnosisis total and one more 'suggestive diagnosis'  and another I have to let evaluate.

The temporary DP/DR + panic was not officially diagnosed but that one was a no-brainer to detect and although my psychs at that time  agreed that I had it it was not put on paper.

 

I figured it I might've been possible to have HPPD due to a disturbed neurological make-up.

 

 

With 'Distortion in perception of perceived object' I mean that if I stare for instance at the floor it starts waving. The Halos/Aura occurs without migraine and I might have issues with anxiety I don't know but I doubt it's the cause. I notice HPPD symptoms the least when I computer so I do that most of the time and if I'm outside I never look in the air but always try to fantasize or not actively look at things since the floaters, snow amd difficulty with looking at the world always disturbs me.

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It sounds as though you have 'visual snow syndrome' (terribly confusing name), which is for most people exactly the same (in terms of symptoms) as HPPD except VSS is not induced by drugs. That being said, advice given on this website is probably still going to be useful because the mechanisms appear to be quite similar.

 

There's also a very active Facebook group which has many active HPPD and VSS members which you might want to visit: https://www.facebook.com/groups/visualsnowsupport/

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I personally think that the visual problems of HPPD are all natural by-products of our vision and, for some reason, the drugs we took adjusted our ability to filter out these natural problems. You (VS sufferers) seem to have the same inablity to filter these by-products, but without the trigger of drugs...

 

My thinking is the big difference between hppd and VS might come in terms of treatment..... LSD, MDMA etc can cause a dramatic shift in serotonin/dopamine and other neurotransmitters. This means that drug users could be more susceptible to side effects of drugs that change these neurotransmitters, hence why SSRIs often make HPPD sufferers quite ill.

 

Your neurological make up might be different and suitable for meds like SSRI. Do you have, for instance, a problem drinking caffeine products?

 

On the other hand, you (VS sufferers) might have a genetic issue with the same neurotransmitters, and, therefore, the same treatment rules would probably apply ( abit like someone naturally becoming bi-polar or someone who trigged bi-polar through drug use). Maybe HPPD is drug induced VS? Hard to tell without some serious cross disorder testing.

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Apparently a newish drug called 'retigabine' has been very effective in treating visual snow, which is what this sounds like. It's an anticonvulsant with the main property being that it reduces hyperactivity in certain areas of the brain, the cause of visual snow. Hope this helps...

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This is my first post to the forum. I share a similar issue with you. I was diagnosed with a very brutal virus when I was 7 years old paralyzing me from the waist down. (ADEM) It led me being treated with cocktails of different medications that made me hallucinate for almost two weeks straight upon first admittance. It took another 6 years after that until i started to notice what was going on. Tried explaining to an eye doctor and he shot me down, so I forgot about even saying anything and dealt with it until the age of 20 when I finally decided to research it. In between the ages of 15 and 21, I have had many intentionally brought on hallucinations, concussions evolving to epiliespy and a heavy exposure to the electronic music scene. More recently, in the past two years I was taking 25i/2ci/2cb quite a bit, which really opened my eyes to the whole deal of symptoms I have. I was then fully aware that there was a problem. Long story short, I have intense visuals on a daily basis. I've finally accepted that I will most likely live with this for the rest of my life so it is nice to know that there is someone out there who knows what its like to have it from a very early age.

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