I have had HPPD for 15 years,
I am much better now than when it started, I have tried so many natural and psychological techniques that I feel its the right time to test if certain Medical treatment could work.
My main symptoms are now anxiety, depression, heavy brainfog, visual snow, problems reading - writing, focusing and depersonalisation sometimes.
I have found a neurologist in the city of Barcelona where I live, and I will like to ask you guys for a favour before I meet him:
is there is an order for which meds are to be tried first?
which meds in your view have been the most successful in treating some symptoms?.is there a page with these things online?
I tried a low dose of diazepam and the day after my symptoms where very high again so I stopped, same thing with an antidepressant.
Having said all of this I will like to share some hopeful news too: I have been fortunate to have had days with almost no symptoms, have traveled extensively, managed to finish my BA in fine arts, lived in various countries, got my drivers license, can now read (even though i get confused sometimes), I can hold conversations much better (less DP), at the beginning of this disorder my life was very very miserable now its a lot better.
Thank you for reading.
This is interesting....
Was browsing some medical things today and came across this med that came out recently. It made me think it may be beneficial to this underserved area due to its unique mechanism of action.
It's essentially an add on antipsychotic BUT it doesn't work like any other antipsychotic on the market. It targets 5HT2A almost exclusively as an inverse agonist and to a much lower extent at 5HT2C. You guys probably know that LSD, psychedelics, ect, target 5HT2A as an agonist, this is essentially a down regulator at that site in other words calming overexcitability. That's kind of simplifying it but it look interesting and nothing else seems to help much other than time. The side effect profile is suppose to be low because it does not effect dopamine receptors that cause Parkinsonism, Tardive dyskinesia. Its used to treat hallucinations in Parkinson's because it doesn't mess with dopamine.
I know there's some people on this board that know about all the pharmacology and this looks like it's hitting where it needs to, and a new avenue, there is no other inverse agonist on the 5HTA2 receptor on the market, might be worth a shot, best of luck to all of you, give it a look.
^^^^^ bullet points sum up above link ^^^^^
I've had what i believe to be HPPD for about 3 years now, after a slew of mushroom trips around age 15. I cant pinpoint exactly when i started showing symptoms because i feel they came on very subtly and gradually, and after 3 long years, seem to still be worsening. I remember the first thing i noticed was a light visual snow or static fuzziness that i could only see at night or in dark places, then slowly it started becoming more noticeable with time. I would start then seeing the visual snow or static fuzziness during the day time, most noticeably when looking at something solid and with minimal detail, like a wall or a cloudless sky. The trend of it getting worse continued, i would start getting progressively stronger tracer vision, beginning with things like car and street lights at night. As before, over a few months these symptoms began to translate over to during the day time. Now its to the point where i get tracers as simply as slowly running my hand past my eyes, and the visual snow is strong like what you see on a television that isn't getting any signal. The visual snow even forms into psychedelic shapes sometimes, spirals and things that look like your phone screen when there is grease on it. This is most often at night and in the morning when i am tired, but is not limited to that. When i close my eyes all i can see are these weird colorful randomly moving shapes and images. If i do something like read a book or read something on my computer, when i close my eyes i just see randomly occurring letters and numbers, and this lasts for 15 minutes or so. Florescent lights make all the symptoms particularly strong, so you can imagine school was quite difficult.There are halos around almost everything i look at, especially letters and numbers. My memory and ability to think straight and clearly feels like its degenerating. I cant focus on anything, and having ADHD doesn't help aha. I've also dealt with things anxiety and depression and depersonalization and severe migraines so that cant be helping. Ive completely stopped all substances except alcohol, the occasional cigarette and the occasional joint to help deal with the stress. But i used all 3 of these things and more up until about a year ago. none of it was hallucinogenic though
My point of posting this was not to for attention or plead my case on how hard it is to live with. I know there are people on here that have it worse than i do, but i rather just posted this to see if anybody can relate to my experience so far and has dealt with a similar situation. I haven't read many stories of people with HPPD that seems to be progressively getting worse, so i'm just seeing if someone can confirm its HPPD and not something else. I've been to countless doctors across Toronto and most of them have even heard of HPPD, let alone how to treat it haha, so i kind of gave up on the medical route. Ive had brain scans that all came back negative for anything so HPPD seems to be the only thing i have found that matches my symptoms. Its a scary thought thinking about what it might amount to if the symptoms keep exaggerating like they are doing now. Its only been three years so its pretty debilitating thinking about what it might be like after 10...20...years etc if it doesnt stop, as i only just turned 18 aha. This is my first post so any replies or support really helps, thanks. -Cal
I've been on it 3 weeks if you count the week of tapering up.
Currently on 5mg (from what I understand a relatively low dose).
Can I just stop or do I need to taper off of it?
The side effects are horrible at this point and I want off this stuff ASAP.
So, it's been a couple months and I'm at my target dose of 200mg lamotrigine daily. Still on 2mg clonazepam daily, but will be starting a taper off of it within the next month or so. No signs of addiction or dependence so I'm not too worried about tapering off it.
I'm pretty much the same as I was when I posted the first report. However, the double images/ghosting has improved quite a bit and now seems to come in waves rather than being constant. There are days where it's the same as it was before treatment, and the there are days where it's almost not noticeable unless I purposefully look for it. Another thing of note, it seems to now only occur with brightly colored/reflective objects that are being hit with intense light OR with lights that emit at a high intensity. Also, it sort of follows a cosine like trend where it's at its worse in the morning and night, but not so bad midday (this is perhaps a function simply of eye adjustment, i.e., the eyes adjust to light after being in darkness for an extended period and the eyes adjusting to darkness after being exposed to light for an extended period of time). Ghosting/double vision with text on a computer screen is almost nonexistent now, it comes and goes but for the most part, it isn't present. However, all other archetypal symptoms are still present at their normal intensities.
I plan on going the full recommended 12 months to see how this turns out. The improvements make me hopeful.
Another thing of note, I will be starting a course of haloperidol soon due to an increase in psychotic symptoms (pdoc is starting to get worried and wants to get this under control ASAP before I end up in the looney bin). My target dose will be 5mg once daily, starting at 2mg once daily. He recommended it since it primarily affects only the dopamine receptors, specifically the D2 receptors and HPPD seems to be primarily linked with the serotonin receptors, as we all know by now the 5-HT2A receptors in particular, which most modern APs have an affinity for along with the dopamine receptors. In his words, he said it would either have a positive effect for HPPD or be completely benign. In Lerner's clinical literature review, dopamine antagonists (i.e. typical antipsychotics) seem to be either helpful or benign with regards to HPPD. So, I'm hoping it helps or is benign and doesn't worsen HPPD. The only thing that surprises me is that no one has really tried it yet with HPPD, except for a few people here on the forums. I think this is because most HPPD'ers are told not to even approach APs regardless of their generation (typical/atypical), but this seems to stem mostly from experiences with only one AP, risperidone and not others.
We'll see how this plays out. If there is anyone else that has tried haloperidol with HPPD, it would be much appreciated if you could give an anecdotal report of your experience, was it a success, complete failure, so-so results, etc. If it works, great. If it doesn't, well, I'll just keep on keeping on and move on to something else (likely clonidine, levetiracetam, perphenazine and a few others, definitely not levodopa though since I have an underlying psychotic condition).