Some evidence that "HPPD" is NOT dependant on drug use

[Lobotomizer]

I want you guys to all click on the link below. Read through these anecdotal comments. What you will find is that there seems to be MORE individuals who are describing HPPD to a T(palinpsia, bright colors, static, halos, ghosting vision, etc) without ANY PRIOR DRUG USE. That's right many if not most of the people posting here have had these visual symptoms occur to what seems like varying degrees without ANY prior drug exposure. Now many of these people are claiming to have anxiety as a result just like many people here on these boards.

 

What does this tell us??? This tells me that we may be barking up the wrong tree. Calling it HPPD may be misleading. If those who have not used drugs are being stricken with this  then this is an issue that does not require drugs to manifest. There is something else causing this. While its obvious that these drugs can cause these problems to occur, there must be an aswer that lies elsewhere.

 

For one its a huge PLUS that this happens to non drug users as physicians are unfortunately more sympathetic to people that have abstained form drugs. Way may be successful by discussing this with those that don't use drugs....we might be able to find an answer this way. 

 

http://ehealthforum.com/health/topic61133.html

 

PS perhaps changing it from HPPD to something new would be conducive. "Persisting visual anomalies disorder." That way we can include those that have these identical symptoms who have been effected by other means....for example, I have known of individuals that got this from spiritual practices like meditation, in some it occurs spontaneously with no prior drug use, others have gotten it from non-hallucinogenic substances such as prescription drugs and another group got it after a traumatic experience ....There are many other groups that I cant think of from the top of y head who have HPPD like symptoms and have never touched illicit drugs.

 

 

EDIT- interestingly it seems theres quite a handful of people who got HPPD like symtoms after using Topamax , and anti seizure  and migraine medicine. Another piece to the puzzle...Im starting to think the answer is somewhere inbetween ANXIETY---->MIGRAINES----->optical seizures....is it the anxiety triggering siezures/migraines??? The siezures/migraines triggering anxiety??? I really think its starting to narrow down and if we know where to look its not going to be like looking for a needle in a haystack anymore

 

 

One example of a quote I lifted from the link "To everyone that's worried about LSD giving you tracers decades later: I have had tracers on and off since I was a kid, way before I tried any drugs (besides massive amounts of asthma medication). I have had the ability to make walls and patterned ceilings move pretty much all my life. Narrow striped shirts and similar patterns make me nauseous because my eyes can't focus right looking at them. I have always had very bad vision (-7 contact prescription by high school) and I'd bet that part of the problem is your eyes weakening as you age. I wonder about the person who said it might be a cornea problem and how changing cornea shape fits in, because cornea shape affects your vision a lot too.

 

An example of a quote I lifted from this link -

 

"To everyone that's worried about LSD giving you tracers decades later: I have had tracers on and off since I was a kid, way before I tried any drugs (besides massive amounts of asthma medication). I have had the ability to make walls and patterned ceilings move pretty much all my life. Narrow striped shirts and similar patterns make me nauseous because my eyes can't focus right looking at them. I have always had very bad vision (-7 contact prescription by high school) and I'd bet that part of the problem is your eyes weakening as you age. I wonder about the person who said it might be a cornea problem and how changing cornea shape fits in, because cornea shape affects your vision a lot too."

 

And another very interesting -

 

"Still no anweres. I have had snow or static looking at dark images since I was a child. I also remembered that if I staired at an object long enough it would start to glow or even wiggle. Later on when I was a teen I ignorantly tried LSD. Shortly after I noticed tracers. They bothered me and caused me depression thinking I did something bad to myself. I started smoking pot to fight my depression that worked for many yrs but after a decade it started to cause me anxiety instead. Now I'm in my mid 30's and a single father. They have never gone away and now I fear that my anxiety is causing me to see them more clearly which in turn causes me more anxiety. Just recently I even started to see halos around certain lights. My child has told me he can see the halos as well but is only 7 and is on asthma meds. I'm hoping this is either genitic or health realated. After speaking to my father who is in his 60's he tells me that he has tracers as well but has never done anything like LSD. I have turned to God for help and pray that I can get myself together for my childrens sake. Please if there is any doctor out there with any idea we could use your help. Is this simply something that runs in my family?"

And another -

 

"I have never used LSD and I have a major issue with this. I have never done drugs period and am 28. I hate the tracers and in the mornings and night is when it is at its worst."

[VisualDude]

It is common with neurology for several different/separate groups to form and eventually (hopefully) come together.  This often happens for very logical (hence valid) reasons.  For example, Brodmann area 17 is also called primary visual cortex.  At Brodmann's time, little was known about what area of the brain did what ... he simply dissected the brain and marked each area according to similarity of neuronal structure.  We now know that this area specialized in visual processing, thus has uniquely shaped neurons, and have given it a functional name, not just a structrual-similarity-number.

 

PPD might be a better word ... for now ... until someone comes up with yet another one.  HPPD is from Hallucinogen usage, hence the 'H'.  Dr Abraham states "Developing HPPD without ever tripping on acid can also happen, but in my experience this is quite rare, and suggestive of another disorder in the nervous system that needs medical attention."  http://amrglobal.powweb.com/category/hppd .  The names we used to describe symptoms from HPPD were not made-up for our disorder ... they exist in other conditions.  Some are normal eye function (negative afterimages, floaters) but are exaggerated with HPPD.  Some are very common such as visual snow - yet even from birth can be troublesome enough for there to be forums about it.

 

If you have not had a chance, please watch the interview between a fellow setting up visual snow research and Dr Abraham (our HPPD guru) http://hppdonline.com/index.php?/topic/4027-interview-dr-abraham/

 

 

As for barking-up-the-wrong-tree, how much does it matter?  Perhaps with doctor-bias/research-bias it matters.  Actually, if you want help, get the diagnosis toxic encephalopathy.  It opens a huge door of medication trials and removes the bias.  I speak with experience as I've never touched a recreational drug yet have this affliction.

 

Still, it helps researchers to know how a person specifically got a disease.

 

As a note of caution, people get hung up with words and labels.  Yet these things are necessary to navigate through life.  Also, often people can't forgive themselves for harming themselves so they look for reasons to shift blame.  Things like, 'others use drugs without problem, thus there is nothing wrong with it'.  Saying our symptoms are 'normal' doesn't help improve things, the prefix "dis" is a red-flag for 'please-try-to-fix', whether dis-ease or dis-order.   In this case, being 'dissed' isn't about showing disrespect.  In the end, crappy (less than wonderful) vision can be a nuisance.  Whether it is VS, HPPD or cornea problems.

 

 

As for answer lying elsewhere, largely the answer is genetics + total stress load.  Yet genetics is an emerging field.  Humm ... an orphan condition and an emerging field ... not time to hold one's breath.  Perhaps if HPPD is adopted into the PPD family it will remove one strike against us.  Or for those who don't like it being called a disorder, the PP family.  Imaging a researcher exclaiming he just got funding to study PP.

 

Plenty of effort is made regarding recreation drugs.  Tons of money is spent on education (just-say-no), law enforcement, rehab and medical treatment.  But for research, money is spent where most can happen.  Depression, anxiety, heart disease, and cancer get big bucks.  Also, pharmaceutical companies stand to make a fortune on these ... not on PPDers.  Most HPPDers say anxiety is the worst part and would be happy just for that to be resolved.

 

 

As for similarity with visual migraine and epilepsy, we already know that with HPPD, qEEGs show coherence between neuronal systems.  That is what happens with a seizure, only with a larger amplitude.  In general terms, visual migraines are slow-motion seizures ... half hour instead of half minute (Oliver Sacks writes a bunch on this topic).

 

There are all sorts of related, similar, and sometime exact things going on between these conditions.  PPD isn't drug dependant.  But drugs are a way to get it.

[Missjess]

I totally agree with this, isn't there a member in here who got hppd from mould ??? I honestly feel like hppd is some kind of chemical injury in the brain, and even possibly a super induced stress response from the brain trying to rid itself of poisonous substances which in our cases were the drugs and possibly in other cases poisens from outside like mould etc...

Thoughts ??

[415_stylee]

There definately is an genetic vunerability for HPPD. It seems to be the same gene as the heredity for migraines.

Think we had a survey on this on the previous forum, quite convincing results for the HPPD-migraine connection.

Everyone in my family has had or have migraine-type disorders. One in the family has epilepsy. My mother was born with some kind of PPD, which she had until she died. She never touched any drugs.

We compared our symptoms, and they were quite alike, but the severity of my symptoms were FAR worse!

You cannot get true HPPD from no drug exposure (the "H" in it stands for "hallucinogen")..

But you can be born or develop some kind of PPD without any drugs, yes indeed.

If you have someone with PPD in the family, the likelihood of getting full HPPD from using hallucinogens is a HIGH RISK!

But really, most PPD's are not causing any disability at all.

HPPD on the other hand, causes some kind of disability in most sufferers. This is due to the severity of the symptoms and all the comorbid disorders which most sufferers have (anxiety, DP/DR, depression etc). There are statistics on this, search around a bit on the web..

Hope I somehow have contributed to the knowledge-base we're trying to build in this forum.. :-)