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Posted (edited)

I had full blow VSS / HPPD with about a thousand symptoms, I only have 4 that remain which are significantly impacting my life. Im 8 months in and i have seen improvements but the after images havent changed.

Example would be, nomral person looks at street lamp at night and closes their eyes, after image = 0.1 second, me looking at street light = after image 5 seconds.

I am taking 100mg lamotrigine a day, and have also dabbled with Clonazepam 0.5-1mg a few times but it has no impact on my after images.

I hear many people say clonazepam has helped them so i wonder why it is not helping with my after images when i try it?

 

My remaining symptoms are,

-light tinnitus (hissing)

-After images (seems to be on everything but bright or high contrast lasts longer, its liek theres a loop in my memory or something or my eye cells arent recoving to homeostasis fast enough)

- Visual snow ( for me this has always been very light and faint  and seems to be improving.

- brain fog (particularly with my visual memory, i struggle to picture faces and stuff and feel like life is one day to the next)

My doc has ordered me a b12 test in 2 weeks to be thorough as she said that b12 deficiency can cause some crazy neurological symptoms. Funnily enough ive noticed my tinnitus has lessened after suplementing with b12 the last week which im unsure if its a coincidence or not.

when i do exercise my tinnitus can flair up and my after images too which to me sounds liek a blood flow issue? i just want answers,

I need evidence of whats going on for my own sanity and so i can show my doctors ther is something happening. Are there any test that can do this for me? VEP, spect? fmri. i just need a sheet of paper saying "we found something" anything.

 

I can handle everything other than the visual memory and palinopsia (prolonged after images) I need some advice on what i can do or any other success with treating this? As you can see ive tried 2 of the most common medications but the after images are still messed up.

 

 

Edited by PjTx
edit
Posted (edited)

Hi there @PjTx

It took me about 4 years to get to any major breakthrough point in my HPPD where I could say that things really started getting a whole lot better. I've been through the medical system in every fashion that is available. I've had CT-Scans, electroencephalograms (EEG), and any other tests that could be performed, all to no avail. HPPD is a change in the way that your brain works and unfortunately medical technology today cannot measure this change, at least not for the everyday layman being diagnosed with some disorder.

But just know that it is real and certainly there are medical professionals who know exactly what's going on in much greater detail then you or me.

I'm on over 6 years now, and my HPPD doesnt bother me anymore, my palinopsia although perhaps still there, doesn't cause me distress, along with all my other symptoms. My brain has adapted to having this and has developed its own workaround that happens in the background at the most basic level. 

Basically my experience with it is that over the course of years your brain slowly adapts and overcomes the thing, eventually until it fades into the point of being a negligible thing that you don't think about like shaving 3 times a week or having to do the dishes after you cook food. 😋

But for sure the first 4 years were an impossible task for me, and I think I'm making it sound easy. But I dont take any medication at all anymore, and I dont think that they ever actually helped me.

Good luck, and keep yourself busy and your goals alive - eventually this will become a phase that you move on from.

Edited by jbalsa2

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