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HPPD-an answer after 20 years


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I just want to say hello. I am pretty overwhelmed right now. I have been struggling to figure out what is wrong with me for 20 years now. I have had so many different diagnoses, meds, therapists, etc, but nobody ever really understanding what I am experiencing or really helping me. I have heard the terms derealization and depersonalization and was told I was just having that from PTSD. I still felt like this wasn't enough to describe it. Finally today, I just typed into google, "What is the mental illness where you feel like you are on a bad acid trip that never ends?" And, I found an article about HPPD. Never heard about this in my entire life, but I have read much already and really feel this is my experience.

Edited by Quakermom74
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Welcome! It is quite a relief when you can finally put a name to the disorder... It took me around 13 years too, so I feel you (i'm 23 years in now). If you need any help or advice, just let me know.

The essentials:

No more drugs (i'm sure you've sussed that one out!)

Avoid caffeine

Avoid heavy alcohol use

Avoid SSRI and anti pysch meds

Eat well, exercise


Benzos (work for the majority, but beware of addiction). Clonazepam is a good option.

Keppra (doesn;t work for many)

Lamictal (doesn;t work for many)

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Thank you so much. I have not done any kind of street drugs in 17 years,since I had my daughter and no alcohol in 14 years. I also found out that I can NEVER take anything with dextromorphan after many nightmare experiences being sick and using cold/flu medicines. I do take a low dose of clonazepam which I find helpful. They have me on lamictal and a low dose of seroquel, so now I am wondering if those are making things better or worse. I really appreciate the feedback!

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Might be worth tapering off the Seroquel and see how you feel. I tried that medication and it had a small negative effect on my hppd. Your clonazepam might be covering up that negative effect?

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After I stopped dosing I realized that I had a real issue.  That was in 1980.  I realized that something wasn't right while I was dosing but just assumed it would clear up.  For many years I felt very alone with this disorder.  The internet didn't exist yet.  I mean who do you talk to?  When I found this forum it was a huge relief.  Not only did my condition have a name but there was a group of people with the same affliction.  For the first time in decades I didn't feel singled out.

Welcome.  Take some time to read some of the threads.  There are some very bright people posting here.

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