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I have a brain injury [video]

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Re: I have a brain injury [video]

#31

Post by difosfor »

A big metal Christmas street ornament installation fell on my head and shoulder as a rode my bike on the street underneath. Briefly on a ventilator. Thankfully can't remember that or the week after personally and mostly recovered over the following weeks, months and years. Kind of like a logarithmic curve; fast at first and then ever slower. From what I was told, that's generally the case and there isn't really anything you can do except accept it and learn to deal with it and just take care of yourself as always. After being able to speak again etc I remember the frustration of feeling tired but subsequently not even being able to deal with previously relaxing things like watching TV or reading a book or listening to music. Pretty much was just sleeping 16 hours, eating and meditating during that time. Had to learn to speak a bit slower (used to speak too fast anyway) to work around damage in that area of my brain. Still get brain fatigue almost every day which gives a subtle strange kind of headache and makes me struggle with words and clumsy etc. I still get stressed a lot more easily and find it more difficult to concentrate. I think my IQ must have dropped; also according to friends. Regardless I've learned to live with it pretty well with a lot of help from experts; kept my job but working 20 hour weeks now, with colleagues shielding me from stress, helping out and accepting when I have a bad week. Also learned that even while I'm tired and feel stupid; that's not the end of the world either and I can still do and enjoy things. All in all I can do most anything again; just for a shorter time and gotten used to it where it now just feels normal. Feel pretty blessed with all the help I got and that I was able to recover as I did. Could have been a lot worse.

Anyhow, yeah, sorry for my rambling. Be careful with your head and carpe diem and all that!

PS: Keep doing fun and challenging things as far as possible. I happened to dance 3 to 4 days a week before; am back to 1 to 2 days now except for Corona measures getting in the way these last years. Think that can help exercise your brain in many ways. Also working and speaking different languages etc.

Re: I have a brain injury [video]

#32

Post by johnisgood »

ttul wrote: post #17

I had a brain injury a few years ago and I literally am not the same person. Be careful with your head, folks. It’s really easy to permanently change your existence.

I have lesions in my brain. It is probably toxic leukoencephalopathy, but no one knows. Some neurologists say it is MS, but we do not know anything for sure. People probably does not or would not believe me, but opiates are the only thing that help with a lot of my symptoms. I do not get messed up on them like others. I get no euphoria. It works for me just like alprazolam (Xanax) does. The problem with benzodiazepines (e.g. alprazolam) is that I get a quick tolerance build-up, and I become tolerant after just 2 weeks, and when it works, it does not work as well as opiates do. Opiates have been keeping me productive and focusing on my future, otherwise I live in the past, I am stuck in the past, and I am an emotional wreck.

I had a couple of appointments with my neurologist. She saw me with and without opiates. The first time she saw me while I was being on opiates, she told me how much better I look and all that. If I told her that the difference between the two was opiates, I bet she would approve of its use in my case.

In any case, this is what works for me, and I have been through a lot of psychiatric medications without any success. Opiates are not really an issue at all. I get regular blood tests done, I get MRIs done and so forth... everything seems to be fine, otherwise I would not use it. Constipation is the only issue, but I take magnesium citrate for that.

I would like to add that I wish I did not have to depend on opiates or anything at all, I would rather prefer that, but this is what it is. I am happy I found something that works for me after so many unsuccessful attempts. I found it by accident, even.

Re: I have a brain injury [video]

#33

Post by tomcam »

difosfor wrote: post #31

A big metal Christmas street ornament installation fell on my head and shoulder as a rode my bike on the street underneath. Briefly on a ventilator. Thankfully can't remember that or the week after personally and mostly recovered over the following weeks, months and years. Kind of like a logarithmic curve; fast at first and then ever slower. From what I was told, that's generally the case and there isn't really anyth…

Thanks for sharing. Nightmarish. Good on you for keeping at the healing process.

Re: I have a brain injury [video]

#34

Post by tomcam »

pineal wrote: post #14
throwaway_12122 wrote: post #8

Earlier quoted context omitted.

I went to Mayo after a stroke. I was (am?) a fairly high iq person, national merit scholarship, 99.8%tile SAT scores, etc. Degree in mathematics, compsci. I had a stroke in my 30s, and it was thankfully mild (slight dysarthria that went away in a month) but I'm certain it impacted my intelligence and ability to concentrate. I can't focus/concentrate for long sessions anymore. I used to be able study without problem u…

All too common. Despite our best efforts, even the most detailed neuropsychological battery does a very poor job at detecting certain categories of cognitive changes -- especially in patients who were above average at baseline. I'm a neurosurgeon and we commonly advise our patients: Even after a "perfect" or minimal surgery without any evidence of periprocedural stroke or complication, you may not ever be the same ag…

> I'm a neurosurgeon

Username checks out

seriously, though thanks for the insights and... how the hell do you have the time/energy to visit HN?

Re: I have a brain injury [video]

#35

Post by tomcam »

treeman79 wrote: post #9
throwaway_12122 wrote: post #8

Earlier quoted context omitted.

I went to Mayo after a stroke. I was (am?) a fairly high iq person, national merit scholarship, 99.8%tile SAT scores, etc. Degree in mathematics, compsci. I had a stroke in my 30s, and it was thankfully mild (slight dysarthria that went away in a month) but I'm certain it impacted my intelligence and ability to concentrate. I can't focus/concentrate for long sessions anymore. I used to be able study without problem u…

I get tiny clots and mini strokes all the time. Factor 5 Leiden. Not at all rare. Took 3 years and dozens of doctor and hospital visits to figure out. At every stage I was dismissed. Took a big clot that nearly killed me to figure it out. I had severe cognitive decline, but since I started at borderline genius and went down to “somewhat slow” they felt I was fine. I regained much after starting blood thinners, but no…

> Took a big clot that nearly killed me to figure it out.

Infuriating. So sorry you had to go through that unnecessary part.

> I regained much after starting blood thinners, but not all.

Bittersweet! Thanks for sharing, and my best to you.

Re: I have a brain injury [video]

#36

Post by weaksauce »

difosfor wrote: post #31

A big metal Christmas street ornament installation fell on my head and shoulder as a rode my bike on the street underneath. Briefly on a ventilator. Thankfully can't remember that or the week after personally and mostly recovered over the following weeks, months and years. Kind of like a logarithmic curve; fast at first and then ever slower. From what I was told, that's generally the case and there isn't really anyth…

That's terrible. Glad you are on the mend. I know it sounds hokey but it might be worth looking into lion's mane mushrooms as they have had some results with neurogenesis in the brain.

Re: I have a brain injury [video]

#37

Post by Croftengea »

johnisgood wrote: post #32
ttul wrote: post #17

I had a brain injury a few years ago and I literally am not the same person. Be careful with your head, folks. It’s really easy to permanently change your existence.

I have lesions in my brain. It is probably toxic leukoencephalopathy, but no one knows. Some neurologists say it is MS, but we do not know anything for sure. People probably does not or would not believe me, but opiates are the only thing that help with a lot of my symptoms. I do not get messed up on them like others. I get no euphoria. It works for me just like alprazolam (Xanax) does. The problem with benzodiazepin…

Thanks a lot for sharing. I hope this is still recoverable condition.

Re: I have a brain injury [video]

#38

Post by [deleted] »

dvt wrote: post #18
ttul wrote: post #17

I had a brain injury a few years ago and I literally am not the same person. Be careful with your head, folks. It’s really easy to permanently change your existence.

My regards, and this is purely out of curiosity so feel free to ignore if I'm overstepping -- how are you "not the same person?" Can you tell what you "should" be like? Did you previously enjoy certain things that you don't anymore? Hoping you get better.

[deleted]

Re: I have a brain injury [video]

#39

Post by johnisgood »

Croftengea wrote: post #37
johnisgood wrote: post #32

Earlier quoted context omitted.

I have lesions in my brain. It is probably toxic leukoencephalopathy, but no one knows. Some neurologists say it is MS, but we do not know anything for sure. People probably does not or would not believe me, but opiates are the only thing that help with a lot of my symptoms. I do not get messed up on them like others. I get no euphoria. It works for me just like alprazolam (Xanax) does. The problem with benzodiazepin…

Thanks a lot for sharing. I hope this is still recoverable condition.

Thank you and no problem! Sadly I have been going from neurologist to neurologist, but it does not seem like it is recoverable. There is no way to reverse demyelination[1]. There are some herbs that may help with that, but I am skeptical. If anyone knows something with regarding to this, their input would be welcomed! I know there is a lot of ongoing research on this.

For now I take propolis, vitamin D, B vitamins (B1, B6, B12 especially), garlic oil, quercetin, and bromelain. I just ordered CBD oil and this will be my first time testing it. I hope it is going to work for my muscle spasticity. Additionally I ordered Ceylon cinnamon, because I read some studies with promising results. I might as well give it a try. Opiates do help tremendously, but they do not treat all of my other symptoms.

[1] First search results: "There's no cure for demyelinating conditions, but new myelin growth can occur in areas of damage".

Re: I have a brain injury [video]

#40

Post by vimy »

throwaway_12122 wrote: post #8
dsizzle wrote: post #4

Earlier quoted context omitted.

Yeah, sounds terrible. I wonder what medical treatment he's seeking? My understanding is that there wasn't much you can do other than rest https://www.mayoclinic.org/diseases-conditions/concussion/di... but there must be something hopeful if he's willing to move states to seek it.

I went to Mayo after a stroke. I was (am?) a fairly high iq person, national merit scholarship, 99.8%tile SAT scores, etc. Degree in mathematics, compsci. I had a stroke in my 30s, and it was thankfully mild (slight dysarthria that went away in a month) but I'm certain it impacted my intelligence and ability to concentrate. I can't focus/concentrate for long sessions anymore. I used to be able study without problem u…

Take a look at /r/nootropics and /r/peptides

BPC-157 and lion’s mane in particular.

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