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
Should I just avoid it and not take it?
My doc prescribed it because, as some of you may know, I have/am developing a psychotic disorder.
I know it's primarily a dopamine antagonist and that HPPD seems to primarily be linked to the serotonin system. But as I've read on this forum and elsewhere, anti-psychotics should be avoided.
However, it seems like most people are talking about atypical anti-psychotics, which are both dopamine and serotonin antagonists, rather than typical anti-psychotics like haloperidol.
In my research, I haven't found many reports of using haloperidol to treat HPPD or using haloperidol to treat comorbid psychosis with HPPD. I've read the Moskowitz study, but in that cases it was used to treat flashbacks, not necessarily HPPD since before the diagnostic criteria were introduced into the DSM, flashbacks and HPPD were lumped together, so it isn't exactly clear whether they were treating flashbacks or HPPD.
I haven't seen many anecdotal reports either. The ones I have seen are mixed in that they say it either 1) helps, 2) does nothing, or 3) makes HPPD worse. What's disappointing about these anecdotal reports is that the authors don't include much information such as their particular dose, other comorbid disorders, hallucinogen that most likely caused their HPPD, other medications and dosage, etc. They just say whether it worked, didn't, or made things worse.
So, if there is anyone on this forum that has tried haloperidol and is willing to give a detailed description of their experience, I would very much appreciate it if you could post in this thread and help me determine whether I should try this med or not.
I obviously want to treat the psychotic symptoms, but at this point, my HPPD is what's causing me the most distress, worsening it simply for the sake of treating another disorder that isn't causing me much distress would just push me over the edge.
Here's my detailed report:
Comorbid disorders: Major depressive disorder, panic disorder, schizophrenia/psychosis NOS Current psychiatric medications: 1mg clonazepam twice daily (helps with anxiety), 100mg lamotrigine twice daily (some improvement of visual symptoms) Current non-psychiatric medications: Albuterol, 2 puffs as needed for asthma Past medications tried for HPPD/other disorders: Escitalopram (stopped at 2.5mg once daily, made HPPD worse, 3 day trial), risperidone (stopped at .5mg twice daily, made HPPD worse, only lasted 1 day) [NOTE: These were taken in roughly the same time period] Drug(s)/hallucinogen(s) most likely to have caused HPPD: DPH (diphenhydramine aka Benadryl), used on a nightly basis for ~2 years at doses of 150mg+, potentially MDMA (only ever tried once), potentially THC (only ever tried once, had a severe panic attack) Proposed dose of haloperidol: 2mg once daily tapering up to 5mg once daily Other proposed medications/supportive agents: Benztropine 1mg twice daily to control EPS of haloperidol The main reason I want a detailed report is so I can make a better judgement as to whether it will worsen it or not and thus whether to take it or not. The detailed report gives me an indication of what the underlying cause is and what system is affected in particular. Knowing the drug that caused it and what drugs made it worse/better gives me an idea of the neurotransmitter system that's affected the most by your HPPD. In my case, it seems like mine is primarily linked to the serotonin system and acetylcholine system considering that my drug of choice was DPH, a well known anticholinergic, and that serotonin antagonists made it worse. In particular, for me, it seems like I likely have an acetylcholine deficiency and something funky with my serotonin system (potentially a sort of serotonin toxicity since risperidone blocks serotonin from being absorbed and escitalopram increases it, thus highly increased levels of serotonin).
Thanks in advance
I finally saw Dr Plant at KCH (specialist in ophthalmology and neurology) in London yesterday. What he said to me surprised and kind of confused me, and as the appointment cost a lot (first time using private), I thought I'd share online with you guys so you don't have to cough up.
He started by writing down my symptoms - visual snow, floaters, after images, constant low level migraine, tinnitus, anxiety, brain fog. Then I did a peripheral field of vision test. When I got the results for that (all normal, though I felt that the swooshing colours and snow that I got in the dark room had really damaged my score before he told me the result, interestingly enough) he told me what he knew about the condition.
He said that he's seen hundreds of people with these symptoms, some who call it HPPD, some who consider it a migraine disorder (apparently there is a whole online community of these people - wish I could remember what he said the disorder was called), linked with the 'aura' that some people with migraines get, and some who have neither migraine problems, or have come into contact with psychedelic drugs.
He said the most common group of people that he sees for this condition is people who just have moved out to college or university, and are living alone for the first time in their lives, studying a lot etc. As I developed my HPPD in early 2014, half way through my dark and depressing first year of university, this definitely resonates with me.
With regards to treatment, he basically said that I have to take a holistic approach - treat my whole body right, put on some weight (I'm underweight), wake up early, go to the gym, make sure that I am living a healthy and active life. This will give me the platform upon which I can recover - by relaxing into the condition, accepting it and freeing myself of the anxiety and stress that it causes me. He poo-pooed the use of "those epilepsy drugs" by which I think he meant Keppra, and also advised that I steer clear of benzodiazepines. He said that many people who have the condition make a full recovery this way, while also ceding that some don't, and that some recover and then, years later, pick it up again (which sounds absolutely awful)
I have strictly regimented my diet and lifestyle so that I do not consume any ethyl alcohol at all, even in cosmetics or food products (vinegar for example) in a desperate attempt to halt the progression of my HPPD - alcohol is as harmful as drugs like weed or MDMA to me in terms of exacerbating my condition. He said that this was unnecessary and that my "obsessive" behaviour was impeding my recovery, which left me confused as to his stance on drugs and alcohol - when I said that I felt I'd found some slowing in the progression of my HPPD as a result of this new lifestyle, he claimed it was a placebo effect.
All in all I'm very confused about this. I think I will visit some NHS doctors and ask for Keppra to be completely honest, but maybe that's just my weakness after having been given no solid plan of action.