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Quakermom74

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. I know that feeling as I had it with DP-DR when I first discovered that was a real condition. It's quite a liberating feeling and at the same time comforting to know you're not alone. There's all sorts of great information on this site so I'd encourage you to read up! 

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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

Meds:

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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I went to one dr who jacked up the dose super high, but right now I am only on 50 mg to help me sleep. I know that when I don't sleep the HPPD is really bad, like I have to sleep.

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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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