disequilibrium

[peanuttiest]

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. 

 

[indigranny]

hey! i’m having the same sensation right now, how has yours progressed?

[AmitV]

Me too!

[AF44]

On 3/5/2024 at 5:56 PM, AmitV said:

Me too!

When I first got HPPD (about 26 years ago now? Lord it’s been a long time. August 1998.) I had that same rocking feeling. When I laid down I felt like I was rocking but not side to side- head to toe, if that makes sense! When I was stopped at a red light in my car it always felt like I was rolling backwards, sometimes to the point that I’d smash on the brake because I thought I really was rolling back. A few months ago, I had two or three days of not being able to catch my balance and it felt like I was bobbing up and down like a balloon when I walked. My Dr. said was probably from this thing called benign vertigo something-or-other, which is where crystals break free and float around inside your ear. I swear I’m not making that up, for some reason I giggled when I wrote that. It’s called BVV or something. But I don’t think that’s what it was, because I remember my visuals being heightened and feeling weird. It all went away after a few days (thank God.) But the worst thing is that last October (I know I have written about this before several times on here, I have dubbed it The Great Halloween Hairspray Debacle) my now 16 year old son’s costume involved that awful colored hairspray in a can. My son has thick long hair down to his waist and he was insistent that every strand of his hair be pink. Has anyone here ever heard of the game Omori? It’s his favorite and he was dressing up as one of the female characters and he worked so hard to get the costume right down to the T. The morning of Halloween we were having a couple of family members over for games and cupcakes and stuff…I was rushed trying to help my husband with his makeup and finish up the cupcakes and everything, I still had to do my own costume and do my son’s hair. I don’t know what I was thinking but we did the hairspray in the living room with towels spread out on the floor. I didn’t even have a window cracked, didn’t even think about it. I had to use 3 cans of hairspray and it still wasn’t enough. He was so insistent that every strand be covered. We were both coughing and making jokes about bug spray…well anyway…the day after Halloween my HPPD SUCKED but I still didn’t equate it with the hairspray, duh! I thought I was just tired and had eaten too much junk food, so I was in bed most of the day reading and fell asleep at 6pm. My son came in and woke me up saying he felt dizzy and I told him to drink water. The next day he told me that his computer monitor was breathing and he was seeing static in his vision and stuff was warped. My heart sunk so low I can’t even describe it. The only thing it could be from was him breathing in all those harsh chemicals as I was spraying the shit out of his hair. Like practically huffing! So he had this stuff going on, but the biggest thing was that he said he felt like he had vertigo but “internally.” I asked him to describe it and he said, picture that the chair I’m in is nailed to the floor and that the whole room is flipping upside down but I’m in the chair. He would be absolutely gray and nauseated. He said the walls looked like they were moving towards him. It was so horrible. It’s bad enough I have HPPD, then he gets it from that damn hairspray?? After some months those symptoms faded and nowadays he acts normal, doesn’t say anything. The last time my husband and I asked about his vision, etc. (we would just say, is it better, the same, or worse?) we kept it simple…he said better. I think he still has problems but he doesn’t mention them. That’s what I thought of when I read these posts about disequilibrium. It was weird because I took him to a therapist and when my son described that feeling, the therapist asked, “as though you were on a hallucinogen?” To my knowledge my son has only ever smoked weed and he “did” cough syrup once, so he wasn’t sure what being on a hallucinogen felt like. Sorry for that long, rambling story. I wouldn’t wish HPPD on my worst enemy, so the fact that my son may have gotten it, especially from my idiot self not airing the living room out while using the spray, caused me to sink into a black hole of panic, guilt and depression.