Does anyone get lost easily and totally disoriented?

General Discussion
#1

There is no connection to the wold or people around you. Total numbness. I also get lost very easily, and disoriented/confused, especially on hikes through the forest…like relying, on some form of impaired instinct, solely, without proper cognitive processing. It’s as if something is blocked or damaged in our cognition… it feels as if my cognition will eventually be lost in total amnesia, and I will forget who i am.
Scary stuff. I already have a letter, from my shrink, stating that I am cognitively impaired, with no chance of working…

Anyone else experience getting lost and disoriented easily - i.e. out in the woods hiking?

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#2

Yes very much so, I just went hiking( live in Tucson AZ) and I know that feeling, and hearing that from you(someone with the same symptoms as me) makes me depressed cause you’ve had this for a long time. It’s hasn’t even been a year yet for me

#3

Yes, this is a seriously disabling condition. The worst one and far worse than penis issues. Don’t be depressed dude. Just keep trying everything to get better. Do you still have your physical strength intact?

#4

Ya I do have physically strength somewhat ok, but this dissociated feeling I have is 24/7 and won’t go away for even a second, it makes me depressed that if my cyclosporine and autoimmune theory don’t work out than I will have this forever, This has to be the WORST disease(brain damage symptom) ever, right now I would trade places with a paraplegic any day. I don’t even care about my dick.

Not only that but I was never given finasteride for hair loss as I never had ANY, I was given it for trouble going to he bathroom, now I’m cursed also with insane diffuse hair loss all over my head , eyebrows and body. This disease sucks more than any other thing I can imagine.

But yea I do try and look forward thinking that one day this will go away. Luckily I have good parents who are doctors and a good endocrinologist that has tried me on so many medications to try to help with this.

And the military is even worse with the situation cause they call it a delusional disorder.

#5

Hey Rob,
Are you sure you can’t work or function at all? I feel that I have very similar brain fog to you, but I’m able to function in society. At first, I thought I was completely screwed and unable to function, but I’ve learned over the 8 months or so that I can still be integrated with society. I feel fairly disconnected, anywhere from 50-70% connected to the world at any one time, but I’ve found that I can do much more than I thought. Perhaps if you go out and try things you may find that despite feeling completely disconnected, you might be better than you think at functioning–just my opinion.

I could also be completely wrong, though. I’m just saying from my experience that my doubt (from the heavy fog) made me think I was destroyed, which wasn’t actually the case.

#6

I have this now very very bad.

This is FAR worse then sexual sides. I would chop off my numb dick and be put in a wheelchair for life if i had my brain function back. Some guys here or out there just dont understand how bad it is.

The last time i went to the shops in 2015 i got lost. I didnt even know where i was and i couldn’t navigate around. It was like i was a ghost. Absolutely terrifying.

I dont know if i will ever work again. I already have medical certificates for illness/disability. I have literally no emotions and the anehdonia is SEVERE. If i go outside on a hot summers day i feel nothing. All my friends say “its a good day” “wow what a cold breeze” and i feel nothing. I am literally a robot. When i talk to people they get angry because my face shows no interest in the conversation

The only way i can describe it is being an old robot. When i look around i see humans walking around. I see everyone as animals. I have lost the feeling of being a human. Having personality, vitality, emotions. All gone. I am a numb ghost. My body is already dead. I am just a soul trapped inside

1 Like
#7

No. It’s not about “doubt” at all, but rather about cognitive dysfunction, and being totally disconnected from reality 100% of the time.
24/7 daily with no relief. It’s very scary to live with, and my doctor compares it to combat veterans returning with head or brain injury. Everything blends in together, with your cognitive processing, and you feel as if you might forget who you are, your name, or where you are at any given moment. People are like furniture or objects. There is no differentiation. It’s hell on earth. Your not the same person any longer, or who you were and felt like, prior to taking the poison, finasteride.

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#8

Sorry to hear that man. To clarify–I didn’t mean that it’s about “doubt,” I too feel extremely disconnected and am certain there has been some sort of cognitive shift. I was just saying that at least in my case, as scary and different as the brain fog is, I can still function in society. You seem very intelligent and capable in your words, so I was hoping that perhaps you might be more functional than you might believe.

Anyway, I emphasize with your struggle and urge you to keep fighting.

#9

Sorry you’re having such issues with cognition. How are you sleeping?

I had this too in the very beginning. Not so much getting lost, but having difficulty doing normal things. I would go to the supermarket and wander the aisles forgetting what I needed to buy. Remembering what I was supposed to do during the day was VERY hard. I could not deal with anything complex, like reading a contract or cooking a new recipe. Even answering emails seemed daunting.

I was very careful with diet during this time, as I found certain things (like sugar) really could worsen the situation. It improved over time though. Hang in there.

#10

I had this from 2012- 2015 but I have had an excellent end to 2015 and excellent start to 2016. I have made a good 70% recovery and don’t get anywhere near as spaced out. Better sleep and diet has made a major difference to this. So, I don’t think you are permanently disabled. I thought that too and at one point I thought it was all over. I couldn’t even use the remote control for the television at one point. it is a hell of a lot better now.

#11

me…

#12

Same. When I step outside it’s like a whole new world.

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#13

Yeah, pretty much feel like I’ve been following a tether the last few months, find it hard to think for myself so I just seem to just go along with whatever, everything just feels kind of pointless, but things have to be done I suppose.

#14

I once naively thought that as long as the head pressure disappeared, the sight improved and the depression improved, these damn cognitive impairment would go away. Now it seems that it is almost impossible to disappear the bad logic, garbage memory and word finding difficulty. It has been four months

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#15

I know you’re frustrated, but any kind of progress is positive. If you give it time, I’d expect you to make more positive steps.

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#16

It’s really embarrassing for people who are also patients to comfort me but I need it. What I’m angry about is not the disease itself, but the dignity it deprives me, making me feel like a monster. Especially when you face many excellent people, you will see them live happily and make great achievements, but we have infinite negative in the eyes of the outside world, The strongest people in the world can’t compare with AWO and axo. If the damn cognitive impairment doesn’t subside, I’d better find a job as a grave keeper or a zombie security inspector in the subway.then I will donate half of the money to axo and half to my parents. I just need to eat a bag of instant noodles every day. I don’t feel hungry or happy, This may also meet the requirements of fasting (laugh to death).The Chinese PFS patients I know except Hanru with severe depression and Lihong and Yongqiang with severe cognitive impairment have recovered quickly from the influence of intelligence. I may have the same sensitive receptor as Damon. Thank you for your contribution as a team. This is my new home, I hope Zuckerberg, who has become a zombie like eating finasteride, and his damn “metauniverse” can do a good job quickly, then we will enter the fucking immersive experience, like the “number one player”.

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#17

I don’t think you should compare your progress (or lack of progress). Improvements are improvements and that is all you need to think of.

In life in general, comparing yourself to someone else doesn’t help much. Better to just try and make your life a tiny bit better every day. By doing that you can improve your position. Focusing on others successes and failures will not do that.

I know this is very hard for you. It is for all of us. But, we are where we are and hopefully tomorrow can be better than today.

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#18

Yes, definitely. Sometimes in conversation, it’s hard to keep up and bright lights make it worse. My eyes are either too dry or get stressed out by looking at the same person alongside a same backdrop with the same colors all a while trying to maintain eye contact and active conversation. BL, it sucks and certain things make it worse such as green tea, etc…

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#19

This is actually opposite for me. Since I was young, I always had periods of disorientation that comes up randomly. For a few seconds, I literally do not know where I am. This was my normal, so to speak. Now… I haven’t had that since pre-Fin around 8 months ago.