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disequilibrium


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Hi folks - I'm looking for some help  - please let me know your experiences and whether you have any advice. I have had HPPD for a year now. I felt it was starting to get better with clonazepam and a substance-free lifestyle and exercise (not necessarily the vision, but the eye strain/pain) back in November but then I attended a birthday party where second-hand pot smoke came through the window and from the porch and I got much worse. I improved after a month, only left with the additional symptom of trailing that still persists. I was just exposed to second-hand marijuana again three weeks ago. Again, I am much worse and the new symptom is disequilibrium - my head/body feels like I'm rocking on a boat, and I see the room moving (don't worry - I have more than learned my lesson and will make every effort to stay away from weed). My vision when I walk is also like "shaky cam". I am finding the disequilibrium quite awful - I'm wondering who has experienced this and whether it went away? If so, how long did it take? 

 

I have found a syndrome - mal de debarquement (disembarkment syndrome) that is strikingly similar to HPPD but rather than visual it is kinesthetic - but often accompanied by a depersonalization of sorts, brain fog, and tinnitus. Some people have contracted it from Ayahuasca, others from cruise ships (it's thought that the occular-vestibular reflex gets reset to the motion of the boat). Researchers have found that it correlates with hyperexcitability of parts of the brain (as does HPPD). Fascinating stuff! Luckily, there are a couple of potential treatments but it looks like I would have to travel and pay a lot of money. I guess I'm wondering how long to wait this out until trying something. I would very much appreciate hearing others' experiences. 

 

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