HPPD cannot be caused by changes in gene expression

[Fawkinchit]

I did done reading the other day on gene expression, and this cannot be the cause. Hallucinogens do change gene expression, however, this is not permanent, and it does not change actual dna coding, it only increases/decreases a couple of gene expressions temporarily. I think it may be a large misconception that actual gene coding is changed?

[myrslingerbult]

Great news. Do you study genetics?

[VisualDude]

I did done reading the other day on gene expression, and this cannot be the cause. Hallucinogens do change gene expression, however, this is not permanent, and it does not change actual dna coding, it only increases/decreases a couple of gene expressions temporarily. I think it may be a large misconception that actual gene coding is changed?

It is more a question of gene-silencing than gene-expression. Cells have remarkable ways to compensate for getting a job done ... however, alternative ways are not as effeicent.

Once a gene has gone silent, then the dna coding is changed - usually this is permenent. Awakening silenced genes is controversial, however this is how Dr Burzynski (a very controversial cancer doctor) treats cancer ... using peptides to awaken these.

Getting to the core of HPPD is another matter. Studies showing changed gene expression reveal a serious underlying issue for proper cellular function. To correct the expression would be important. However, direct ties between this expression and our symptoms have not been made ... this could merely be 'co-morbid' [ Please correct me if I'm out of date on this ]

[Fawkinchit]

Do you have any research that shows gene silencing by hallucinogens?

The changes in gene expression are only temporary

[VisualDude]

I've only seen the ones about gene expression, not silencing. Frankly haven't paid much attention either way at this time.

Have heard that nutrition may be able to wake a silenced gene ... but this is controversial and haven't seen or pursued that research either. Lots of loose ends ...

It is common over time for genes to silence ... particularly under various chronic stressors. Generally, most the gene code is used during development (embryo to fetus to baby to toddler to etc...) then, once the jobs are accomplished, each one goes silent.

This all is interesting consideration for HPPD, but very much at high research level. It is important because anything a gene shuts down (or expression alters) then cells behave sub-optimal fashion - it would be great to remedy any of this. Genetic testing could be very useful for susceptiblilty. I have asked docs for a COMT gene test, but it doesn't look like insurance will ok such (this might further Dr A hypothesis ... if we could all get these kinds of tests on the record)

So I've put most of my attention to what may be in my hands to do and to try to understand specific medication responses that people experience. I think that we all can benefit by empirical (observational) data ... even if this isn't scientific reductionism. Reductionism is a useful tool, but with complex systems full of feedback and feedforward connections, a more pragmatic aproach should be used. Bottom line, the brain is too complex to understand ... only very basic things are known. So fixing disorders is extra difficult.

[brendan]

The change in gene expression may only be temporary normally. But perhaps hppd is a dysfunction caused by abnormal changes that are permanent/semi permanent. Look at ptsd and gene expression - trauma will cause short term changes in gene expression (like exercise does) but only converts into ptsd when the changes become stuck (or a different set of sticky changes occur).

[VisualDude]

Whatever the gene expression does, the word "stuck" ever so much describes our condition. It is neat that some people seem to recover after a few months. But it is puzzling in that there are so many factors ... even mild brain injury (and various 'toxic encephalopathies') can recover by adaptation (or even clearing of toxic substances).

[Fawkinchit]

Exactly visual, this is permanent, and although done may "recover" I don't think its a full recovery, my visual snow and dizziness is gone, no more dp/dr, however my anxiety is still there and gets wore with coffee etc. so what some may call a recovery is more of a lessening. The damage just goes below threshold of symptoms.

[Guest]

So there really is no hope for full recovery?

[VisualDude]

Guess with partial recover, it is a case of "the glass is half full", lol

Can't remember how long you have suffered (1 1/2 years?). I'm one of those that coffee doesn't bother. Sounds like anxiety has been to worst for you (did your hair grow back yet ? ).

Gene functioning is a facinating topic ... guess in part we have to thank AIDS for all the research that got started. Beyond Mendel's Peas, it is beyond my scope.

With the brain, there are so many overlapping disciplines. It sounds like chaos but it is really logical when you see the history (not often a person's favorite topic) ... it is just where people started following the trail of function/disease. Its kind of like, is light a particle or a wave?

So much stuff to dive into ...

[VisualDude]

So there really is no hope for full recovery?

Many do recover.

[brendan]

if we are considering the gene expression hypothesis, then perhaps hppd occurs with a set of sticky gene switches, and the partial recovery occurs because some gene switches are more easily reset than others. This may also account for the different qualities of hppd for different people (for some mainly visual, some mainly anxiety etc).

For what it's worth, I have fully recovered from anxiety and close to being fully in control of brain fog and fatigue. This is from nutritional supplements only and the symptoms slowly return if i cease supplements. Visual symptoms are not too bad for me but have not reduced in 18 years; nor has constant sensation of movement like being on a boat, nor head pressure.

[shaolinbomber]

So there really is no hope for full recovery?

Recovery is a point of view imo. I've come to terms with the fact that I will never be able to forget what DP/DR feels like and with that realization comes the acceptance of never really ridding myself of it. "Recovery" from HPPD is more of an adaptation to whatever new functioning pathways the brain had to use in order to compensate for the chaotic environment that whichever drug caused during the high/experience, and with the brain's "rewiring" comes a definite change in feeling of your reality. This is where the DP/Dr comes in. Everything feels so different or "alien" and everything looks different (visuals) and most people can't accept this so we retract and thus the dissociation becomes a loop that plays over and over again until we can realize that this isn't gonna go anywhere anytime soon if ever.

[VisualDude]

Recovery is a point of view imo...

Very true. Each of us have a different set and intensity of symptoms. And each have a different future/destiny. We can control our destiny to some degree ... but never know how much we can.

No one can ultimately prevent aging and death - - - this comes to us all. But the doesn't stop us from enjoy life and having a productive life.

HPPD may resolve fully, partly, or very little. If aspects (such as anxiety or depression) are disabling, then by all means get meds or whatever to help.

A VERY important tool in managing HPPD (and life) is our outlook and thinking patterns. Certainly when HPPD hits it can scare the sh** out of you. Its prolongation is frustrating. Others, including doctors, not understanding is isolating and hurts to the bone. But you can fight it and have peace at the same time. It is just another challenge.

[415_stylee]

Recovery is a point of view imo...

Very true. Each of us have a different set and intensity of symptoms. And each have a different future/destiny. We can control our destiny to some degree ... but never know how much we can.

No one can ultimately prevent aging and death - - - this comes to us all. But the doesn't stop us from enjoy life and having a productive life.

HPPD may resolve fully, partly, or very little. If aspects (such as anxiety or depression) are disabling, then by all means get meds or whatever to help.

A VERY important tool in managing HPPD (and life) is our outlook and thinking patterns. Certainly when HPPD hits it can scare the sh** out of you. Its prolongation is frustrating. Others, including doctors, not understanding is isolating and hurts to the bone. But you can fight it and have peace at the same time. It is just another challenge.

I totally agree!

After 6 ½ years with unchanged HPPD, I´ve come to terms that I´ll never be rid of it. The first years I was freaked out, shivering in a corner. Now I can hardly remember normal vision is. HPPD is "normal" now.

So even if my HPPD is unchanged, and I still have a lot of DP/DR, sleep problems, head pressure etc. I rid myself of panic attacks, agoraphobia, OCD, fear of going psychotic. Self confidence is back again, feeling strong despite my numerous problems. So I´m partially recovered, "the glass is half full!" Which is something instead of nothing..