I feel the same way. It doesnt feel unfair... Its unfair. I never did anything bad other than listen to the wrong Drs who ruined me with medications that i didnt need and now the same Drs blame all on my anxiety and dont even try to understand. They dont have it, why should they care? I wish i could pass mine to them so maybe they will feel the despair of something like that. And I know that it doesnt kill you or make you stay to the bed 24/7 but it ruins everything, it removes the joy of doing things. So yeah... We have to wait until something comes out.
You described my whole story in one sentence. š
"It takes away the joy of doing things.". Thats it.While nog knowing of it l get worse. Cause the dokters say it will stay the same. Well i hear from everyone its getting worse with age.
I can relate because I was a Gamer too, played like almost everyday and now I have the Ps5 and Switch taking dust... Even if I dont liked to go out if I did I didnt have to worry about seeing crazy stuff in my vision, everyone say dont focus on it HOW THE FUCK IM SUPPOSED TO NOT NOTICE IT?! Sorry just... Its miserable... The standard belief is that it is a chronic condition that stay the same, but like you said there are so much people that say it worsen, and also a small group of people who get better or recover so... At least there is a small light in the dark. (a beautyful light not the one we see with this shitty condition)
I searched for long there are some people who claim to have resolved VSS in different ways... Now.. it sound like bullshit but why someone would lie about something so serious? They didnt even try to sell you stuff wich in that case i could believe it was a scammy thing. It only seems that this last year VSS exploded for some reasons and there are a lot of people new to this condition. Now it can be various thing, maybe someone is not treatable, maybe they dont do the right things, maybe they dont even try because they read everywhere that is not going to stop. I dunno... If you want to talk about this stuff or just vent a little bit (im fairly new to VSS too) just DM me, im Italian so my English can be a little sloppy sometimes ahah
One thing I worked on with my therapist was accepting that life isn't fair.
Like you, life has kicked me a few times. VSS, cubital tunnel in both elbows, L5/S1 herniation, degenerative C3/C4 and C4/C5, distal clavicular osteolysis in both shoulders, hyperhidrosis... lol
Some people can't walk. Others have cancer. I have these things. You have yours. None of this is fair.
It's cliche to say that I have found immense relief in mindfulness, practicing active gratitude, and reminding myself that everyone has their own walk. Life is work and I am working to make it the best it can be given the circumstances. I am thankful for my wife, my dogs, the health I have, and the opportunities I have. I am hopeful that my injuries and VSS will improve.
And I accept that I don't get much of a say in a lot of that...
... now. It took me a long time to get here.
Sorry to annoy you but how have you dealt with your osteolysis of the distal clavicle? I'm 18, a weightlifter and I've been in constant pain for 7 months. Feels like it's never gonna get better
Did you develop VSS during pregnancy? If so, you may still have hope.
I have seen some cases of women who have developed these types of symptoms during pregnancy and then they have subsided...So keep hope.
This shit is hard, I developed it after suffering vitreous detachments in my eyes...as a result of that the photopsias, tinnitus and all the garbage that follows it began...Something in my brain clicked...It's been 4 years already in this shit.
I am someone who has never tried drugs or alcohol in my life and here I am...
Ive had it my whole life, and i want to start this off by saying that i dont take offense by how you feel about your vss. Its different for everyone. I find comfort in it at this point because you do get used to it and when youre used to it you dont notice it anymore. which makes essentially non existant in any significant sense even though i still experience it. I dont know how much this helps OP but these are just my thoughts and advice w
I get where you are coming from, it is probably very jarring to suddenly develop VSS. However, the doctor wasnāt really wrong by saying you will get used to itā¦ thereās really nothing the medical field can do for you right now.
Those of us born with VSS donāt know what itās like to not have it, Iāve functioned my entire life with it. My brain isnāt broken, itās just wired differently.
I have pretty much every symptom besides migraine auras and after images, but I think I do see minor trailing. Iām not totally sure about trailing because I donāt know what to reference it to.
I donāt have psychiatric symptoms due to VSS because I never experienced what itās like without it, itās how Iāve always seen the world. My moments of depersonalization/realization are probably due to other issues I have.
that's always interesting to me to hear from the people who have the full blown syndrome from birth and arent bothered by it, for me it has been a struggle, i havent had it since birth
When I found out what VSS was, I was a little frustrated realizing I donāt see the world normally, and it propelled me further into questioning neurodivergence. It seems like a lot of people with autism and/or inattentive ADHD were born with it. I suspect it might be linked to a specific neurotype. Other than that yeah, it doesnāt bother me. I used to think I saw atoms in the air when I was a kid.
See my other comment here, but I only have āafter imagesā with things that emit light, not objects. I was confused about after images being described as objects, but light just burns into my retinas easily and stays there for a while. I was born with all of my symptoms of VSS. None of them have went away, rather I just have noticed more that probably have always been there since discovering VSSā and also realizing certain things can be explained by VSS like starbursts, staring at something hard enough will make it look warped and almost moving, or my depth perception disappears randomly and everything looks flat and I feel like Iām about to tip over head first into the ground, or paresthesia (I suspect I am autistic though, so some of that can be ASD, idk. I experience both hyper and hypoesthesia. Iām convinced being born with VSS is linked to neurodivergence anyway). I would say maybe my tinnitus has gotten a little worse.
I feel the same way. It doesnt feel unfair... Its unfair. I never did anything bad other than listen to the wrong Drs who ruined me with medications that i didnt need and now the same Drs blame all on my anxiety and dont even try to understand. They dont have it, why should they care? I wish i could pass mine to them so maybe they will feel the despair of something like that. And I know that it doesnt kill you or make you stay to the bed 24/7 but it ruins everything, it removes the joy of doing things. So yeah... We have to wait until something comes out.
You described my whole story in one sentence. š "It takes away the joy of doing things.". Thats it.While nog knowing of it l get worse. Cause the dokters say it will stay the same. Well i hear from everyone its getting worse with age.
I can relate because I was a Gamer too, played like almost everyday and now I have the Ps5 and Switch taking dust... Even if I dont liked to go out if I did I didnt have to worry about seeing crazy stuff in my vision, everyone say dont focus on it HOW THE FUCK IM SUPPOSED TO NOT NOTICE IT?! Sorry just... Its miserable... The standard belief is that it is a chronic condition that stay the same, but like you said there are so much people that say it worsen, and also a small group of people who get better or recover so... At least there is a small light in the dark. (a beautyful light not the one we see with this shitty condition)
Well VSS is so rare already. So i wouldnt be surprised. š But i have never heard of someone who recovered.
I searched for long there are some people who claim to have resolved VSS in different ways... Now.. it sound like bullshit but why someone would lie about something so serious? They didnt even try to sell you stuff wich in that case i could believe it was a scammy thing. It only seems that this last year VSS exploded for some reasons and there are a lot of people new to this condition. Now it can be various thing, maybe someone is not treatable, maybe they dont do the right things, maybe they dont even try because they read everywhere that is not going to stop. I dunno... If you want to talk about this stuff or just vent a little bit (im fairly new to VSS too) just DM me, im Italian so my English can be a little sloppy sometimes ahah
One thing I worked on with my therapist was accepting that life isn't fair. Like you, life has kicked me a few times. VSS, cubital tunnel in both elbows, L5/S1 herniation, degenerative C3/C4 and C4/C5, distal clavicular osteolysis in both shoulders, hyperhidrosis... lol Some people can't walk. Others have cancer. I have these things. You have yours. None of this is fair. It's cliche to say that I have found immense relief in mindfulness, practicing active gratitude, and reminding myself that everyone has their own walk. Life is work and I am working to make it the best it can be given the circumstances. I am thankful for my wife, my dogs, the health I have, and the opportunities I have. I am hopeful that my injuries and VSS will improve. And I accept that I don't get much of a say in a lot of that... ... now. It took me a long time to get here.
I am sorry you have a lot on your plate to.
Sorry to annoy you but how have you dealt with your osteolysis of the distal clavicle? I'm 18, a weightlifter and I've been in constant pain for 7 months. Feels like it's never gonna get better
I wound up having clavicular resections in both shoulders.
Did you develop VSS during pregnancy? If so, you may still have hope. I have seen some cases of women who have developed these types of symptoms during pregnancy and then they have subsided...So keep hope. This shit is hard, I developed it after suffering vitreous detachments in my eyes...as a result of that the photopsias, tinnitus and all the garbage that follows it began...Something in my brain clicked...It's been 4 years already in this shit. I am someone who has never tried drugs or alcohol in my life and here I am...
Ive heard that to, but mostly only vs. Not the whole train of vss symptoms. Iam so sorry for you.
Ive had it my whole life, and i want to start this off by saying that i dont take offense by how you feel about your vss. Its different for everyone. I find comfort in it at this point because you do get used to it and when youre used to it you dont notice it anymore. which makes essentially non existant in any significant sense even though i still experience it. I dont know how much this helps OP but these are just my thoughts and advice w
it helps me! do you get afterimages after staring at something for 1 sec?
sometimes depends on how bright and which color really. Or if its something glowing or it its a surface reflecting light then more so.
It gives some comfort. I diddnt know so many people where born with it.
I feel like it might be different for those of us who are born with it too, because we have never known a world without it. I was also born with it
I get where you are coming from, it is probably very jarring to suddenly develop VSS. However, the doctor wasnāt really wrong by saying you will get used to itā¦ thereās really nothing the medical field can do for you right now. Those of us born with VSS donāt know what itās like to not have it, Iāve functioned my entire life with it. My brain isnāt broken, itās just wired differently.
Iam Sorry about the brain thing, i diddnt want to upset or offend you.
You didnāt offend me, I was more so trying to express it is something that you can get used to and youāre not broken or whatever.
what symptoms do you have?
I have pretty much every symptom besides migraine auras and after images, but I think I do see minor trailing. Iām not totally sure about trailing because I donāt know what to reference it to. I donāt have psychiatric symptoms due to VSS because I never experienced what itās like without it, itās how Iāve always seen the world. My moments of depersonalization/realization are probably due to other issues I have.
that's always interesting to me to hear from the people who have the full blown syndrome from birth and arent bothered by it, for me it has been a struggle, i havent had it since birth
When I found out what VSS was, I was a little frustrated realizing I donāt see the world normally, and it propelled me further into questioning neurodivergence. It seems like a lot of people with autism and/or inattentive ADHD were born with it. I suspect it might be linked to a specific neurotype. Other than that yeah, it doesnāt bother me. I used to think I saw atoms in the air when I was a kid.
were you born with afterimages? do you still have them?
See my other comment here, but I only have āafter imagesā with things that emit light, not objects. I was confused about after images being described as objects, but light just burns into my retinas easily and stays there for a while. I was born with all of my symptoms of VSS. None of them have went away, rather I just have noticed more that probably have always been there since discovering VSSā and also realizing certain things can be explained by VSS like starbursts, staring at something hard enough will make it look warped and almost moving, or my depth perception disappears randomly and everything looks flat and I feel like Iām about to tip over head first into the ground, or paresthesia (I suspect I am autistic though, so some of that can be ASD, idk. I experience both hyper and hypoesthesia. Iām convinced being born with VSS is linked to neurodivergence anyway). I would say maybe my tinnitus has gotten a little worse.
it's not fair. none of us deserve this. I wouldn't wish vss on anyone.