Quote Originally Posted by HOPE View Post
Which symptoms are left for you? We need to hear the positive side.


I still get this strange head pressure/pain around the sides of my head. Mostly on the right side but can be both sometimes. It’s uncomfortable at best and can lead to me feeling anhedonic and depressed at worst. It can come out of no where but it usually shows up when I’m stressed or feeling melancholy about my past. Sometimes it only last a few minutes and the rest of the day is great. Most of the time it doesn’t start until late afternoon. It’s a unique symptom I guess because I never read anyone else talking about it. But it’s my last one and it’s the toughest one to get rid of completely. It’s definitely PFS related because it started right after I crashed. Other than that just eye floaters (these I can keep for life for all I care. And even they have gotten much better. I don’t even notice them unless I’m staring at white wall or white clouds.)

The positive side is my life is not controlled by my fears of PFS symptoms any more. I used to be completely slaved to it and couldn’t enjoy life or the thought of doing anything somewhat fun or productive. The thoughts of fear and dread were overwhelming. Even as recently as 6 months ago which was 2+ years after my crash I would still feel this way. Now my life isn’t like that anymore. I can sit and enjoy my thoughts and have good feelings about going out with friends or going to work and just literally everything else in life people do without even thinking. I still have some PTSD though. Like yesterday I was invited to go to a birthday party tonight and my initial thoughts were oh no I will probably have a terrible time. I had to check myself and remember that that’s not a problem for me anymore. I used to have major upswings and downswings. I don’t have downswings anymore. I mean sometimes my head pressure problem will be pretty bad a few days in a row. But it’s not a real PFS downswing. Where you are feeling great for a couple weeks then all of a sudden it’s like you are back to square 1 for a couple weeks. I know that bothered the shit out of me because it was like what’s the point! The last real downswing I had was December/January. I’m better talking about this shit in person lol. It’s hard to write it down and really exemplify how I feel now compared to how I used to feel. I’m certainly not perfect yet but compared to how I used to feel it’s almost not even the same disease anymore. It’s like I went from full blown COVID to having a stuffy nose.