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I've had HPPD since the early 90s, although I was only diagnosed with it in 2017, they just didn't know what it was called.

Now I've read a lot that mentions visual disturbances, which doesn't seem to explain the whole picture, and is quite annoying. 

Firstly, I do indeed suffer from the visual, swirling, geometrical 3d sunglasses type effect, but I feel other stuff too. It can be very ambiguous in the way I explain it, as it's hard.

It's like being drunk/hungover, like being on a boat, even when my eyes are closed. So in my case, HPPD visually isn't the main thing that is troubling me, it's the constant dreamlike state I feel 24/7. Does anyone get these symptoms as well?

Thanks,  Jason. 

Edited by Jason English
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Yep, this is known as dp/dr (depersonalisation and derealisation).

It often goes hand in hand with hppd visual symptoms. It's my most hated symptom. The feeling of being on a boat is also connected to this, imho. We do not feel 100% connected to our body and it puts us off balance. Even the smallest head movement can make me feel disconnected. 

I've always maintained that what people often refer to as hppd is actually 3-4 issues in one. Hppd visuals, anxiety, dp/dr and sometimes depression. Clonazepam is the only thing that helps me reduce these symptoms.

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Thanks for your reply. 

I was diagnosed with DP/DR years ago. I had a feeling this was co existing with the HPPD. This feeling is the most disturbing for me as it makes me feel like I'm not here. It would happen intermittently at the start, maybe every few days, but now it's 24/7 and has been for 20 plus years. 

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I feel ya, i'm 23 years in now.

I describe it as being stuck in those last few hours of a trip, where you are starting to feel a bit more normal, but still not quite there. Have you tired any meds? 

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That is exactly how I feel, like I'm on a come down but not actually down. It interferes with every aspect of my life, socially, using public transport and visiting supermarkets, because everything is so bright and moving around. I've not even experienced my children without tripping. I also find it exhausting, fighting against it all the time. 

Yes, I've tried different medications, which made things worse because of their side effects. Recently though I've been using Lamotrigine, which initially worked then started to make me feel weird after being on it months. I'm currently being taken off those to hopefully be put on something better.

Thanks for your perspective on this, it has really helped. I thought I was the only one who experienced this. The doctors who are treating me have only ever had one similar case on their books.



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