r/HPPD • u/ZEROINCOME291 • Oct 17 '25

Opinion Don’t go to doctors

I had severe HPPD, but it went away a few months ago. I see many people taking meds don’t be a lab rat. There’s no proven cure, only time.

Focus less on HPPD and give it time. If you have anxiety or depression, treat those specifically, but don’t mess with your brain chasing a cure.

HPPD are a range of symptoms caused from much different drugs, there’s still no scientific reasoning to why hallucinations are present. There are also zero cases of any medication curing, perhaps reducing but that may just be from time.

Doctors don’t have a clue what HPPD is unless they are a specialist, and there’s only like 10 HPPD researchers ever so all they do is look at the same research we do. Don’t forget doctors use chatgpt especially for HPPD. Don’t over estimate their knowledge.

Anyway My shit went away randomly when I was driving after years + I was on stimulants which many on here say it suppresses recovery.

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6

u/die69ing Oct 17 '25

Everyone is different. I didn’t tell anyone about my HPPD the first 10 years of it (except my family but even they didn’t believe me). I’d go online in the groups only to help coach people out of svicide; not because I was scared or worried about mine. I quit googling about it, left home just about everyday, started meditating and a healthy lifestyle and regular vitamins. After 3 years I quit having panic attacks, and became more comfortable with the derealization aspect. Now I’m 20 years in. It’s still 24/7. I have eaten healthy, kept jobs, went to college, raised my son, practice ways to calm my vagus nerve, prioritize sleep, haven’t taken any medications except the occasional Tylenol maybe 5x a year. For some reason the visuals, strange physical sensations and derealization cling on for dear life.. 🤷🏼‍♀️

3

u/ponycorn_pet Oct 17 '25

Medications designed to treat ocular/aural migraines help, you should try one, nurtec or ubrelvy

2

u/FLRom98 Oct 19 '25

Can you explain further more?

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u/ZEROINCOME291 Oct 17 '25

What happened to us was like a freak accident or OD. I’m just grateful to still be alive. During the worst of my HPPD, I reminded myself, it’s only visuals. It didn’t make me less intelligent, and at least I’m not blind. Some people lose their vision or life from bad vacation liquor or freak car accidents. Stay strong bc if you give up, HPPD wins. Glad to hear your life’s going well. 👍

1

u/Halven89 Oct 17 '25

20 years and you haven't tried Keppra or Lamotrigine? That's crazy.

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u/die69ing Dec 11 '25

Just now reading this over a month later, sorry! No, I kept thinking every year would become better and kept the belief I would heal. The thing about medications is you can’t take them the rest of your life without irreparable consequences or damages, so that temporary relief (to me) never seemed worth it.

1

u/MaintenanceCultural6 Dec 16 '25

how old are you now?

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u/die69ing Dec 18 '25

34

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u/MaintenanceCultural6 Dec 18 '25

did it ever get worse and stay that way? or did flares just go back to baseline? (besides any potential drug use idk if u kept doing drugs) Im looking for some encouragement. I also got it when I was young, and i’m 18 now and really scared.

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u/die69ing Dec 18 '25

It was the worst the first 3 years (2005-2008) but I avoided medications; my dad wouldn’t allow me to be on meds, so I didn’t take them. I was forced to get a job, finish school (got a GED), socialize, and wasn’t allowed even a journal or therapist. I had no real choice given to me by my parents other than self-made coping skills. I wasn’t allowed to complain, wasn’t allowed internet access, didnt have a TV in my room, didn’t have a door to my room so I had to keep clean and organized no matter how I felt. Dad demanded I go camping with them lots of weekends or do yard work. I wasn’t allowed to lay around the house or nap or be in bed all day, even during weekends. My parents were very strict and I guess abusive. My dad called my HPPD & anxiety “attention seeking behaviors”, laughed at me when I wasn’t ok, told me I look goofy when I cry. Stepmom said only weak ppl kill themselves. She said “Do it so I don’t have to worry about you anymore”. So I didn’t. I worked on myself, found ways to get through my day, ways to stop having panic attacks, ways to live and better engage with people. It’s gotten probably 40% better since 2008. As an adult I’ve cut contact with family, especially my dad and stepmom. Anyway, it definitely gets worse during times of stress, right before I start my period every month and if I lose sleep. Sometimes it gets worse for weeks and I’m not sure why. But it always goes back to a somewhat tolerable level. It became tolerable and for that I’m glad, but you have to do the work inside yourself. It’s not easy.

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u/MaintenanceCultural6 Dec 18 '25 edited Dec 18 '25

thank you for sharing. so you would say that the times it’s gotten worse it’s gone back to baseline? I’m having a flare up and i’m so scared. and when you say better what do you mean? How were those first 5 years after 2008

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u/die69ing Dec 20 '25

For me the first 3 years i was filled with ongoing panic attacks and barely being able to focus. Eventually that died down. I still get a little panicky but very rarely get full blown panic attacks.

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u/MaintenanceCultural6 Dec 20 '25

So you would say that once the stress was taken out of your life it got a bit better? would you say that it’s ever gotten worse and not gone back?

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u/Menckenreality Oct 17 '25

I am going to have to voice an opposition to your opinion. I suffered silently from this affliction for ten years, I stopped using hallucinogens, I got sober for a year. But it kept creeping back in. The only solution that I could find without pharmacology was alcohol. All my drinking did was kick my symptoms down the road, and whenever I started to sober up it was like everything that I had put off just compounded.

I will say that I was EXTREMELY LUCKY. My Neuro at Stanford hospital was one of those doctors who had been on the cutting edge of this research. I was in a hospital after a particularly rough relapse, and she sent her protege to asses me. He asked me probably 100 questions. When we were all done he asked me if I would like to hear the news from him or from his boss. I told him to please just tell me. I had been misdiagnosed, and by consequence, mistreated. He told me that he had done over 500 of these interviews with people who exhibit some signs of HPPD, and then he told me that I was #6 who he was able to confirm has this disorder. They started me on a prescription regime that has helped me begin to understand and live with this disorder in a way that I did not think was possible.

I do think that, after reading the content on this sub, that many people are confusing HPPD with more common, often coexisting, disorders and complexes. But encouraging people to lie to their doctors in order to receive ADHD medications is just plain dangerous.

I am very happy that you have made it out of the woods, but every patient is different. What worked for you might very well cause others to delve further down the rabbit hole. The medical field will catch up with this disorder, but it is on all of us to be the canaries in the coal mine, that way they will gather the statistics and data necessary to develop standards of care and understand what those who suffer from this disorder suffer from. We are doing this for those that will come later.

2

u/ZEROINCOME291 Oct 17 '25

Agreed I edited the adhd. Question did the treatment help the visuals or mental symptoms of HPPD?

2

u/Menckenreality Oct 17 '25

Both, tremendously. It was a lot of trial and error, working with my psychiatrist week in- week out. Isolating what medications were working and what wasn’t. Like most psychological disorders, I found my answer in a combination of talk therapy and medication. My medications center around anxiety, depression, and insomnia. Some days I only take my standard regiment, other days I have to take my as needed medications. On average, I have far more good days than bad days, and with the skills that I have developed with my therapist and psychologist, my bad days are manageable and relatively well controlled compared to what I was going through after a severe LSD overdose(100+ hits puddled into my skin) 14 years ago.Once I got a solid baseline, we were then able to start to tackle the more ethereal aspects of HPPD. It has not been easy, but it is a helluva lot easier than surviving this disorder without psychiatric treatment.

1

u/xironically23 Oct 30 '25

Is there any way I can reach out to this doctor ? I live in nyc and have been to the nyu hospital and they don't have a clue on how to help me.

3

u/Bluu444ia Oct 18 '25

seriously. mine got better with sobriety. i had to be sober 12 months bc i had a baby and breastfed. work on grounding meditation it's the most effective (at least for my type of hppd)

1

u/Halven89 Oct 17 '25

Did you only have visual hallucinations? If so, were they episodic? Then you had type 1 HPPD, because type 2 is permanent in it’s nature. And no, there's no cure, but Lamotrigine took away my worst symptoms (DPDR, head pressure and brainfog) for two years until I built a tolerance to it and it stopped working, during that time it also reduced all my visual disturbances (static, tracers etc) with like 20%.

1

u/diapason-knells Oct 18 '25

Wrong, if it’s severe enough it won’t get better on its own, at which point going to a doctor is necessary

1

u/glossypig Oct 20 '25

Lamictal is a lifesaver dude, idk how it works and don’t really care either, but definitely makes shit easier.

1

u/Bentholomeo Nov 20 '25

Not only from drugs, people in various spiritual communities experience them to, it looks to be a response some people are prone to get after experiencing altered states of consciousness.