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Looking for doctor, HPPD / DR for >10 years

4956 Views 1 Reply 1 Participant Last post by  Gringo
I have a question for the forum.

What fully English speaking doctors, in Europe, are there who take HPPD / DR seriously?

In fact, do you know any reputable "med-havens" where one could get an MRI and that kind of stuff too? I realize it could just as well be encephalitis or a brain tumor, but doctors here will never test this because apparently I'm too young to get those (I'm 31)

And here is my background.

I've had HPPD for many years, got it in my late teens from a mushroom trip that went bad.

My HPPD is not just visual, but I can "feel" that whatever is causing the visual pulsations and everything is affecting my psyche just as much as my vision. I belive it is a similar brain electrical cascade phenomena like epilepsy, only much milder. My visual symptoms are similar to how people describe migraine auras (but probably milder).

That is why I will call it DP/DR, because the visual part is not the important thing, it is the cascades of slightly altered conciousness that go with it. It is like a never fully snapped back into reality at the end of my last mushroom trip. For the most part I'm ok, but my thoughts are always a bit trippy. In fact, the way people describe mild trips, that is pretty much how my every day is. No, that's an exaggeration, but not totally. My own trips were intense hellish out drawn panic attacks where I was trying my best to hold on to reality in any way I could in order to not disappear. But those breathing walls and racing thoughts people seem to enjoy, yeah, I have that pretty much all the time, to some degree.

The worst part is the constant feeling that I'm not really in reality. I "know" I am, but it doesn't feel like it. It feels like I'm a the tail end of a trip, or possibly like I'm watching a replay of my life on tiny screens inside my head or something.

Strike that, the worst part is trying to explain this to the mandatory general practitioner that you must try to convince to allow you to see a specialist!

Luckily, it is pretty manageable these days, I've gotten used to it I guess, and it was many years since I did any drugs at all and it has gotten better. I was never more than a light user of any drug and I never did any heavy psychedelics after that fatal mushroom trip. However, after more than 10 years with HPPD / DR, I'm certainly not cured. In fact, it was a long time since it got any better, so I think this is where I'll be at.

Less luckily, my life has taken a turn for the worse some years ago. I've really been unable to accomplish much of anything for the last few years. I have almost no ability to concentrate, and my mind is racing 24/7 and my sleeping pattern is not a pattern at all. And it seems to be slowly getting worse.

I don't see an obvious reason, but reading this forum and, I get the feeling that other people have similar symptoms. If HPPD is indeed an epilepsy-related phenomenon, that would make sense why it would be debilitating in this way.

However, I am not convinced at all that HPPD is the culprit, my HPPD is mild enough that I've gotten pretty used to it these days. But it would sure be nice to rule it out.

After all, my entire visual field is blinking when I wake up, and I can feel my head is vibrating in the same rhythm. I often have problems reading because of the afterimages or just because my thought wander off into trippy associations at every word. Visual snow everywhere makes colors let's say hard to define. At the same time I can tell what color things are, but they just don't actually look like it because it is like my preception of colors keeps changing.

That's the symptoms that are easy to put into words, but perhaps the mental HPPD/DR problems are much bigger than I think.

I have not seen the colors black or white for years. My first though when I wrote the last sentence was that perhaps the shroom, all those years ago, was trying to show me the futility of human words making up arbitrary opposites like black and white, and the fallacies of thinking in pre-made phrases, punishing me for every time humanity had said that things aren't just black and white, thereby showing me the unfairness of collective punishment and the error of my ways for telling somebody off because we are just a collective of cells and our actions are the arbitrary designation of words to the inevitable consequences of cellular reactions. I understand that this could be classified as low-level schizofrenia, but since I realize that, it can't be schizofrenia, right? Man, another semantic loop. Or is it?

That's how my brain goes on and on a lot of the time, and there's nothing I can do to stop it. If I try to concentrate, before I know it I realize that I have been thinking like that for the past few minutes anyway while I was suppose to concentrate on what i was supposed to do! Then some days it is better, but it's been rare the last few years.

At least I'm not having deja vu's. Some years ago I had periods where I had them all the time.

Unfortunately, in this country there is no chance they will prescribe Keppra or Noloxone or really anything except Prozac and other SSRIs. In fact, if you go to a doctor, you will be prescribed the latest SSRI-du-jour, almost no matter what! It is insane.

If I tell them about my concentration problems they say I'm burned out and should try their latest SSRI.

If I talk about racing thoughts, I'm suddenly depressed and need their SSRI.

The doctor who took me the most seriously tested if I'd had a stroke (no, of course not). Then she wanted to give me Mirtazapin for my sleep (no thanks).

If I tell them I might have problems from past use of illegal drugs they would just smile with glee thinking that it suits you fine junkie, or worse, call the cops. They would also put it into my journal (and not in the past tense), which means bye-bye treatment, for anything, ever. Well, except for addiction, which they'll probably treat with various SSRIs.

I suppose if you really explained your derealization to them, they might actually do something, like lock you up in the psych ward. But probably not, too expensive and since I'm not an acute emergency... In fact you can read from time to time about psych patients stabbing some random person in the street just so they will get help (and being honest about their actions, unlike doctors). Oh the wonders of socialized medicine.

I can't just waste my life never even trying to see if treating my HPPD / DR might be the key to getting my life back together.
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Seems like anxiety is more of a problem then the DP/DR.
Have you tried to get rid of your anxiety rather than trying to get rid of your DP/DR/HPPD ?
What makes you say that?

Anyway, you might be right, but primary anxiety is not the subject of this thread. I'm looking for a doctor to see if I could try Keppra or Naloxone, or similar, to see what would happen if I would get some temporary relief of my HPPD / DR.

Also, a constantly oscillating electrical discharge cascade in your brain, it doesn't sound unreasonable that could cause anxiety. Especially if the wave of action potential goes through areas of the brain dealing with anxiety.

It is certainly anxiety causing to never be able to relax. If I take a quiet walk in the forest, I would feel like I wasn't really there. It feels more like I'm watching a movie about my self walking in a forest.

In fact, I think there is something to be said for the hypothesis that HPPD is a type of PTSD. Your mind going into permanent overdrive because it has experienced such intense panic and pulls all stops trying to find a remedy, even remedies that cause brain damage.

I started noticing the symptoms about 6 months ago, but the last drugs I took that can cause HPPD was 4 years ago, and that was Salvia, about 2 or 3 times.
I thought the consensus was that it is not just the hallucinogens and dissociatives that cause HPPD? In any case, I would count cannabis as a hallucinogen in some circumstances, because it can be, at least for some people.

Anyway, if you consider possible biochemical mechanisms for HPPD, something like a change in gene expression or DNA acetylation could certainly present itself with a delay of several years. Since the hallucinogenic molecules are really part of a plant's biochemical warfare against pests and infection, I could see them using any number of mechanisms that might have a quick effect in a mold or a tiny insect, but have completely different and much slower effects in humans since we are not the target.

Salvia probably doesn't cause any hallucinogenic effects in whatever bugs that eat Salvia in their natural habitat. It most likely either just straight out poisons them, inhibits their digestion, or harms their reproduction.
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