I'm glad your medication is working for you, but I think it's good to remember that everybody has different needs and their bodies and brains may react differently to medications than yours. I have found antidepressants to be extremely helpful with the depression surrounding my TBI. Talk therapy with a good therapist has helped me a lot, too.
I’m not on any drugs….. well, not any psych drugs at any rate. Therapy helped me. My situation is fluid though. I have good and bad brain days (and less and less often some really bad brain days).
I hear you. My good days aren’t usually exceptionally good. I mean, it’s still difficult to read, and I can’t even write small shell scripts. Even Apple shortcuts are difficult and a lot of that is drag and drop. That doesn’t sound great since it means I’m unemployable, at least for what I used to do. I’m thankful for being on full disability, even though the money is a fraction of what I used to make..
I still look into other things to help. Right now I’m listening to an audio book on tapping (it has another name that sounds less simple, but today’s a medium brain day and I just can’t remember it)
The best thing I got from therapy is that cognition is like a container. If it’s full you can do a lot of stuff. It’s rarely full post injury. Back in the day I would just keep working on a problem until I had a breakthrough. My therapist said that’s not a tactic I can use anymore because my container is only partially full and it varies from day to day. If I try to push through I will deplete the remaining cognitive ‘juice’ (my term) and I’ll end up starting the next day (or two or three, depending on how much I depleted the juice) with nothing in the tank. Through accidental experimentation (when I forget this advice and keep hammering at a problem) I’ve found it to be just like the therapist said. So sometimes the best thing to do is stop. Maybe even to the point that I take a nap, something I rarely do, and never did when I was whole.
Yes. Sleep is hard for me at the beginning, but when I fall asleep I can sleep for 12 to 14 hours.
I can’t remember what EMDR is, so I’m off to look it up. It sounds familiar, so I think I may have researched it in the past.
this is late but I hope most people can came around and see this point. although I still have the symptoms from the tbi initially I was in the deep depression stats that made it seem catastrophically worse. I went from thinking my life was over and would never be even close to good again to maybe it would be neutral with spouts of depression to now heading off to college(mid orientation lol!) meeting some new friends and excited for a new chapter. don't get me wrong there is still some screws that are a bit off but for the most part it was the depression that was causing my sadness, not the tbi itself. it changes for everyone but mine was roughly 18 months before things changed for the better.
I heard “TBI is a slow dead” many many times from my son. You can try psilocybin. My son who is a severe TBI patient had a severe depression and lot of rage at his parents. Long story short, after 3 times of psilocybin micro dosing which had no effect on him, he finally had 1.8 gram of psilocybin (therapeutic dose is something between 1.2 g and 2.7 g). He said that he had the best and most beautiful experience since he get out of comma, which was 1.5 years ago on that time. His depression and rage at us decreased dramatically almost ten times less and the intensity also decreased a lot. He can manage his anger more and depression decreased a lot.
Almost 6 weeks after first therapeutic dose he had another psilocybin (2.5g dose).This time it had more positive effects on him. He’s now almost similar to his personality before car accident which was very kind and no depression at all. From that time he haven’t say “TBI is like a slow death”. Fortunately Psilocybin effects show just in a few hours and it doesn’t need “days” or “weeks” to show how effective it is.
When some parts of brain is getting damaged other parts trying to create new neurons and connections to undertake and take charge of the damaged parts. Strong neuroplasticity effects of psilocybin can help brain a lot. I was really afraid of using psilocybin for my son but with obvious good effects on him I am going to continue therapy with psilocybin. I just want to add two things. One, psilocybin is not addictive. In fact if you have to use it with enough time in between to prevent body tolerance. Wait at least 4 weeks. Two, frankly I’m a science guy and if someone was going to say the words that I am going to say now, I would consider him as a crazy or silly person, but now I have enough courage to say it because I have seen it. Using psilocybin is really a mindful and conscious act. Be prepared by reading about that, be in a friendly calm quiet place. My son preferred to hear some music by his choice and I preferred a quiet place, it depends on you. Try to enjoy mentally, you can ask questions in your trip and try to concentrate on what you want. Hope this update can be helpful for you too.
I suggest you do your research and if you are living in a state that psilocybin is decriminalized, try to test it.
My son and I researched a lot about psilocybin and finally decided to do that. It has also a lot of good effects on brain neuroplasticity.
The book “How to Change Your Mind” by Michael Pollan can be one source of your research. There are also a lot of information on Internet.
I Want to mention that he also uses “Lion’s Mane” which is good for brain. Recently after a lot research we used “Cerebrolysin” for him. It was very effective on reducing his fatigue. You could not find this medicine in the US, however it is an over the counter medicine in Austria. It’s originally made in Austria. I heard that some Pharmacies in Austria accept to ship it overseas (to the US). I asked a friend in Austria to buy and mail it to our home. Also based on suggestions in Reddit he is using Selank nasal spray on top of the Cereblolysin. Selank is a nootropic, anxiolytic peptide based drug developed by the Institute of Molecular Genetics of the Russian Academy of Sciences. You can find US made Selank in Amazon.
You didn’t mention how good is your physical but I have seen psilocybin is a game changer for TBI people mind. Again I definitely suggest you research and try it.
Sorry to see your question so late. Cerebrolysin is by prescription in Austria. It has been prescribed by a doctor in Austria for my son. That was a mistake to tell you it’s a OTC in Austria. I got it again from a doctor in Austria and my friend mailed that for my son two times, however it was a real challenge to release that in second time, since FDA office in USPS tried to confiscate that. By getting help from a lawyer we released that and my son could use it. Cerebrolysin is approved for use in Austria, China, Germany, Russia and South Korea and when you buy it from one of these countries please ask a traveler from that country to bring it to you otherwise you MAY have a headache to release that. Shame on FDA, they approved Oxycontin which is almost an edible heroin and caused 300000 to 500000 people die in the US but prevent us to use cerebrolysin to use personally.
I know this feeling all too well. It is possible to move beyond it and transcend the suffering even if you won’t regain your abilities. As cheesy as it sounds we are not just our brains, we are also our mindsets, our values, our wisdom.
i didn't realize this 2 years ago. 75% of the reason why I was sad was because of the depression kicking in heavily and my mind snowballing downwards. the tbi obviously favorited in but at this point 2 years later with the same symptoms i'm in a much better spot and i'm happy that we are more than our brains. we can live a life with more purpose than we might think.
I was dumped out of a four and a half year relationship shortly after my tbi so I completely understand. Sometimes you just have to take it day by day and find small things to enjoy: a song you like, the weather, a tasty cup of coffee.
It’s incredibly common for people with a TBI to go through bouts of depression but there are support groups and therapy. Both have helped me immensely when I’m feeling down.
after helping me through my first year of tbi, where i relearned how to talk and walk, my fiancé killed herself on xmas morning, in '17. so, i don't really understand anything.
A "new normal" is a perfect way to describe it. Memories of who you used to be and your old life will get fainter and fainter. Embrace the new you. Love yourself bc you have been through so much! And please seek out therapy. It took me 20 years and it changed my life. Pretty sure most people with a TBI that still experience issues behaviorally, psychologically, etc have some form of PTSD. I did and now it is SO much better!
I felt like this too,once, in the beginning. It gets easier I swear, and there's some pros you discover as you go through the healing journey. Pluuuus when you think about it, all of life is like a prolonged death🤷🏼♀️
I don't disagree that neuroplasticity brings a lot of hope, but 'back to normal' can be misleading and unattainable. If anything, it all becomes a *new* normal, and it can be hard. That's not to say there's not a bright future ahead, it just may not be what was previously dreamt up. But to sugar coat this condition, I feel, is an exercise in frustration. OP, if possible, seek out TBI related doctors and support groups, don't think you have to do this on your own.
Three years ago my sister wanted to die too, now she smiles and laughs and has more good days than bad. First TBI in 2008, second in 2017. It's not easy but it is doable.
I felt this way for a few months, but I found things to take my mind off it.
Working
School work
Family
Friends
Significant other (helps a lot)
As long as I’m pre occupied, my mind focuses solely on that. Not sure if that’ll help but it’s just the conclusion I came to.
Man how bad is your TBI bro? I remember feeling like this. Reading it brought me back... It hurts. Holy fuck dude, it just fucking HURTS. Anyway, ask your doctor about Ritalin. That stuff works like a charm for TBI.
Well, it helps you help you. It enabled me to help myself. We just need someone to push us into the deep end, and stimulants like Ritalin do a fine job at it.
I disagree. My TBI is just taking chunks of memory. I start a sentence and don’t finish it because I forgot what I was going to say. The headaches are relentless. I’m on Adderall and there is no change.
If anyone had tried alternative treatments or medications that help, please hit me up.
I'm 4 years post TBI and I still struggle. I am quick to anger. I heavily monitor and control the words I use and facial expressions a bout things that happen around me. I know I have brain damage and it took me a loooooong time to accept it. I'll quietly pull new people I meet aside in social situations to just let them know if I say something that pisses them off that it's 50% me and 50% the fact that I have no filter anymore and if I do say something off-putting that I didn't mean it aggressively or snarky or insulting - and to just let me know like I'm letting you know now.
Doesn't happen very often, we (my wife and kids) keep things really superficial in social situations because people are garbage and less important than anything that we have going on.
Hang in there...Death isn't the answer, figuring out how to manage whatever deficiencies you may have is the key to being comfortable in your own skin again.
My tbi was in '87 when I was nine. I had no idea about the damage that was really caused until 5 years ago. It's crazy all things that finally added up. I had a 4 inch skull fracture. Back then I just cracked my head. Nothing more to worry. If I'd have known years ago , man life would have been different. Lots of struggles. But I try my best to keep keepin on!
I agree with comments that stimulants like Ritalin can be beneficial but if Ritalin does not work for you, then it might be worth trying out Adderall, a similar type of stimulant. I found out while researching the two that if one of them does not work, then the other one is likely to work (I am not pharmacologically qualified to understand why that is though). In my case, Ritalin did not work but Aderall did. Both medications need to be taken under medical supervision though as they can cause dependency.
I had my injury at 18. I don’t remember much about the immediate after care. I only remember how crushingly hopeless and frustrating everything felt for the next couple years.
I’m 32 now. I won’t lie and say there are not still moments where i feel like i’m just waiting/wanting to die but they come less often now and when they do I have new memories to replace the ones i lost. Those new memories help remind me being alive in general is kinda just waiting for death anyway and finding things to do in the meantime.
I started Emgality for the head pain. After 9 months I was feeling more like my old self enough to do very well in a technology coding boot camp. Ten years after my TBI I feel that I can have a career again. Sure I still suffer set backs due to the TBI and sleep and some motor control is still an issue. But that medicine has given me a lot more good days than bad days. Though every day still has some struggle. I'm optimistic more than before I started Emgality.
it IS like this, especially when combined with the super low functional vision (impacts reading, driving lots of places, so much more), the debilitating fatigue- i thought it was ME/CFS, but now i think it might have come from my pediatric TBI 32 years ago, when i was 5. my tbi was severe. it is wild that i’m still alive, actually. but, with those disabilities, and my depression and anxiety as well as OCD and chronic super awful pain, i really am stuck in bed most of the time, i walk around my home a little, to take care of my pets and try to take care of myself, mostly figuring out how to eat and what to eat and also, remembering to take my bajillions of medications. there are so many social things i WANT to go to, but i can’t, because my one social outing a week is this game night i host for a few hrs a week and it totally requires days of recovery time afterwards, for just sitting and playing games for a few hrs.
they taught me to walk in a very cruel way, dragging me up and down the long carpeted hallway on my knees day after day. despite my neuropsych reports discussing the types of therapies and supports and accommodation things i i would need and benefit from, i never got anything. in fact, we weren’t even allowed to talk about my brain injury at home or elsewhere bc disability in my family was shameful (so hypocritical bc my mom also was disabled makes no sense, but she had “recovered”) but anyway.
i’ve been exhausted and in pain since i was 5, and i have awful executive dysfunction from this and my adhd and stimulants stopped working once i started taking sleeping pills and they were my only source of energy ever, since 2012.
my doctor says im too complex for her and i now finally have referrals to a neurologist and psychiatrist - i have done SO many tests and seen so many doctors and tried so much stuff and nothing has ever helped at all.
so it really does feel like a slow death, but sort of a timeless one.’because i don’t have much of an awareness of time because of my life being the same day after day mostly….nothing really changes much, except when i feel hungry or notice the sun has gone down, or feel sleepy. or see someone’s kids have like aged many years since i last saw them and that felt like it was just last weeek.
i hope these two doctors can help me because it gets harder and harder to accept this is my whole life and i’ll never get to experience much at all. especially love, and care. meep. anyway. i tried ketamine but it made my ocd worse. and i didn’t notice any other benefit from it. i live in a hella anti-“drug” state so the mushroom things mentioned above aren’t legal here. i know they are in colorado.
life as someone who sleeps all day and night mostly…isn’t all that fun, really. without the stimulants, it makes it extra difficult to cope with life this way.
and also, i want to mention that i have been trying to cope with everything by myself because i don’t have relationships with my mother and sister, really, but she has recently tried to help with some research a little bit. my entire life i have felt this way and told my mother and she just said i was lazy and exaggerating and to get over it and try harder. she never even bothered to learn about brain injury, over the last 32 years.
You’re in the depression portion of your tbi, it gets better.
How long does the depression portion last? It’s been 8 years and I’m still waiting.
Google “microdose for tbi”
I definitely agree with microdosing. I get super depressed and anxious a lot and take a lot of psychedelics to even myself out from my TBI
Do you have to keep taking psychedelics to pull yourself out of depression and anxiety, or can you stop after some point?
The depression portion stops when you get on the right drugs. None of this antidepressant shit either. Ask your doctor to try Ritalin.
I'm glad your medication is working for you, but I think it's good to remember that everybody has different needs and their bodies and brains may react differently to medications than yours. I have found antidepressants to be extremely helpful with the depression surrounding my TBI. Talk therapy with a good therapist has helped me a lot, too.
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I’m not on any drugs….. well, not any psych drugs at any rate. Therapy helped me. My situation is fluid though. I have good and bad brain days (and less and less often some really bad brain days).
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I hear you. My good days aren’t usually exceptionally good. I mean, it’s still difficult to read, and I can’t even write small shell scripts. Even Apple shortcuts are difficult and a lot of that is drag and drop. That doesn’t sound great since it means I’m unemployable, at least for what I used to do. I’m thankful for being on full disability, even though the money is a fraction of what I used to make.. I still look into other things to help. Right now I’m listening to an audio book on tapping (it has another name that sounds less simple, but today’s a medium brain day and I just can’t remember it) The best thing I got from therapy is that cognition is like a container. If it’s full you can do a lot of stuff. It’s rarely full post injury. Back in the day I would just keep working on a problem until I had a breakthrough. My therapist said that’s not a tactic I can use anymore because my container is only partially full and it varies from day to day. If I try to push through I will deplete the remaining cognitive ‘juice’ (my term) and I’ll end up starting the next day (or two or three, depending on how much I depleted the juice) with nothing in the tank. Through accidental experimentation (when I forget this advice and keep hammering at a problem) I’ve found it to be just like the therapist said. So sometimes the best thing to do is stop. Maybe even to the point that I take a nap, something I rarely do, and never did when I was whole. Yes. Sleep is hard for me at the beginning, but when I fall asleep I can sleep for 12 to 14 hours. I can’t remember what EMDR is, so I’m off to look it up. It sounds familiar, so I think I may have researched it in the past.
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Hmmmm. Doesn’t ring a bell. I’ll have to check into it. It may also be that I did check into it and there were no practitioners here. Thanks.
There's also dexedrine.
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Oh, I guess you're not SOL.
this is late but I hope most people can came around and see this point. although I still have the symptoms from the tbi initially I was in the deep depression stats that made it seem catastrophically worse. I went from thinking my life was over and would never be even close to good again to maybe it would be neutral with spouts of depression to now heading off to college(mid orientation lol!) meeting some new friends and excited for a new chapter. don't get me wrong there is still some screws that are a bit off but for the most part it was the depression that was causing my sadness, not the tbi itself. it changes for everyone but mine was roughly 18 months before things changed for the better.
I heard “TBI is a slow dead” many many times from my son. You can try psilocybin. My son who is a severe TBI patient had a severe depression and lot of rage at his parents. Long story short, after 3 times of psilocybin micro dosing which had no effect on him, he finally had 1.8 gram of psilocybin (therapeutic dose is something between 1.2 g and 2.7 g). He said that he had the best and most beautiful experience since he get out of comma, which was 1.5 years ago on that time. His depression and rage at us decreased dramatically almost ten times less and the intensity also decreased a lot. He can manage his anger more and depression decreased a lot. Almost 6 weeks after first therapeutic dose he had another psilocybin (2.5g dose).This time it had more positive effects on him. He’s now almost similar to his personality before car accident which was very kind and no depression at all. From that time he haven’t say “TBI is like a slow death”. Fortunately Psilocybin effects show just in a few hours and it doesn’t need “days” or “weeks” to show how effective it is. When some parts of brain is getting damaged other parts trying to create new neurons and connections to undertake and take charge of the damaged parts. Strong neuroplasticity effects of psilocybin can help brain a lot. I was really afraid of using psilocybin for my son but with obvious good effects on him I am going to continue therapy with psilocybin. I just want to add two things. One, psilocybin is not addictive. In fact if you have to use it with enough time in between to prevent body tolerance. Wait at least 4 weeks. Two, frankly I’m a science guy and if someone was going to say the words that I am going to say now, I would consider him as a crazy or silly person, but now I have enough courage to say it because I have seen it. Using psilocybin is really a mindful and conscious act. Be prepared by reading about that, be in a friendly calm quiet place. My son preferred to hear some music by his choice and I preferred a quiet place, it depends on you. Try to enjoy mentally, you can ask questions in your trip and try to concentrate on what you want. Hope this update can be helpful for you too. I suggest you do your research and if you are living in a state that psilocybin is decriminalized, try to test it. My son and I researched a lot about psilocybin and finally decided to do that. It has also a lot of good effects on brain neuroplasticity. The book “How to Change Your Mind” by Michael Pollan can be one source of your research. There are also a lot of information on Internet. I Want to mention that he also uses “Lion’s Mane” which is good for brain. Recently after a lot research we used “Cerebrolysin” for him. It was very effective on reducing his fatigue. You could not find this medicine in the US, however it is an over the counter medicine in Austria. It’s originally made in Austria. I heard that some Pharmacies in Austria accept to ship it overseas (to the US). I asked a friend in Austria to buy and mail it to our home. Also based on suggestions in Reddit he is using Selank nasal spray on top of the Cereblolysin. Selank is a nootropic, anxiolytic peptide based drug developed by the Institute of Molecular Genetics of the Russian Academy of Sciences. You can find US made Selank in Amazon. You didn’t mention how good is your physical but I have seen psilocybin is a game changer for TBI people mind. Again I definitely suggest you research and try it.
Micro dosing and ketamine therapy has helped me a lot.
Ketamine therapy is the best for TBI.
not for my tbi. it made my ocd worse. :-(
Oh
Weird
You need to do more than just microdose. Have someone help you with an at-home infusion.
It requires a bit more than just a microdose
This is how I fully recovered from my tbi
Did the cerebolysin and selank help?
Yes it helped my son a lot.
Is it actually OTC in Austria??
Sorry to see your question so late. Cerebrolysin is by prescription in Austria. It has been prescribed by a doctor in Austria for my son. That was a mistake to tell you it’s a OTC in Austria. I got it again from a doctor in Austria and my friend mailed that for my son two times, however it was a real challenge to release that in second time, since FDA office in USPS tried to confiscate that. By getting help from a lawyer we released that and my son could use it. Cerebrolysin is approved for use in Austria, China, Germany, Russia and South Korea and when you buy it from one of these countries please ask a traveler from that country to bring it to you otherwise you MAY have a headache to release that. Shame on FDA, they approved Oxycontin which is almost an edible heroin and caused 300000 to 500000 people die in the US but prevent us to use cerebrolysin to use personally.
I know this feeling all too well. It is possible to move beyond it and transcend the suffering even if you won’t regain your abilities. As cheesy as it sounds we are not just our brains, we are also our mindsets, our values, our wisdom.
i didn't realize this 2 years ago. 75% of the reason why I was sad was because of the depression kicking in heavily and my mind snowballing downwards. the tbi obviously favorited in but at this point 2 years later with the same symptoms i'm in a much better spot and i'm happy that we are more than our brains. we can live a life with more purpose than we might think.
If the show is good it doesn’t matter if the tv sucks, you just wanna know what happens!
Thank you - I really needed to hear that today and love how you have mentioned the role our mindsets and values play in recovery.
I was dumped out of a four and a half year relationship shortly after my tbi so I completely understand. Sometimes you just have to take it day by day and find small things to enjoy: a song you like, the weather, a tasty cup of coffee. It’s incredibly common for people with a TBI to go through bouts of depression but there are support groups and therapy. Both have helped me immensely when I’m feeling down.
after helping me through my first year of tbi, where i relearned how to talk and walk, my fiancé killed herself on xmas morning, in '17. so, i don't really understand anything.
oh my god. i would be so stunned and have no idea how to feel either. i’m so sorry.
It's fucked up.
It absolutely is! But there’s good days and bad. It’s about emphasizing and remembering to focus on the good days!
You must have a similar injury. I like that attitude. Right vs Left hemispheric trauma. It makes a difference!
A "new normal" is a perfect way to describe it. Memories of who you used to be and your old life will get fainter and fainter. Embrace the new you. Love yourself bc you have been through so much! And please seek out therapy. It took me 20 years and it changed my life. Pretty sure most people with a TBI that still experience issues behaviorally, psychologically, etc have some form of PTSD. I did and now it is SO much better!
I felt like this too,once, in the beginning. It gets easier I swear, and there's some pros you discover as you go through the healing journey. Pluuuus when you think about it, all of life is like a prolonged death🤷🏼♀️
You will eventually recover. Neuroplasticity will bring you back to normal eventually.
I don't disagree that neuroplasticity brings a lot of hope, but 'back to normal' can be misleading and unattainable. If anything, it all becomes a *new* normal, and it can be hard. That's not to say there's not a bright future ahead, it just may not be what was previously dreamt up. But to sugar coat this condition, I feel, is an exercise in frustration. OP, if possible, seek out TBI related doctors and support groups, don't think you have to do this on your own.
I’m nowhere as to near normal. Would anyone other than me know that? Not likely.
Three years ago my sister wanted to die too, now she smiles and laughs and has more good days than bad. First TBI in 2008, second in 2017. It's not easy but it is doable.
I felt this way for a few months, but I found things to take my mind off it. Working School work Family Friends Significant other (helps a lot) As long as I’m pre occupied, my mind focuses solely on that. Not sure if that’ll help but it’s just the conclusion I came to.
It sure feels that way sometimes. Sending hugs
i’m 23 and i relate
Man how bad is your TBI bro? I remember feeling like this. Reading it brought me back... It hurts. Holy fuck dude, it just fucking HURTS. Anyway, ask your doctor about Ritalin. That stuff works like a charm for TBI. Well, it helps you help you. It enabled me to help myself. We just need someone to push us into the deep end, and stimulants like Ritalin do a fine job at it.
I disagree. My TBI is just taking chunks of memory. I start a sentence and don’t finish it because I forgot what I was going to say. The headaches are relentless. I’m on Adderall and there is no change. If anyone had tried alternative treatments or medications that help, please hit me up.
Ok well, talk to your doctor. I can't help with this.
No better?
Please stay strong I’m 6 years in now it does get better
I'm 4 years post TBI and I still struggle. I am quick to anger. I heavily monitor and control the words I use and facial expressions a bout things that happen around me. I know I have brain damage and it took me a loooooong time to accept it. I'll quietly pull new people I meet aside in social situations to just let them know if I say something that pisses them off that it's 50% me and 50% the fact that I have no filter anymore and if I do say something off-putting that I didn't mean it aggressively or snarky or insulting - and to just let me know like I'm letting you know now. Doesn't happen very often, we (my wife and kids) keep things really superficial in social situations because people are garbage and less important than anything that we have going on. Hang in there...Death isn't the answer, figuring out how to manage whatever deficiencies you may have is the key to being comfortable in your own skin again.
My tbi was in '87 when I was nine. I had no idea about the damage that was really caused until 5 years ago. It's crazy all things that finally added up. I had a 4 inch skull fracture. Back then I just cracked my head. Nothing more to worry. If I'd have known years ago , man life would have been different. Lots of struggles. But I try my best to keep keepin on!
Same
i've been saying that for 20 years.
I agree with comments that stimulants like Ritalin can be beneficial but if Ritalin does not work for you, then it might be worth trying out Adderall, a similar type of stimulant. I found out while researching the two that if one of them does not work, then the other one is likely to work (I am not pharmacologically qualified to understand why that is though). In my case, Ritalin did not work but Aderall did. Both medications need to be taken under medical supervision though as they can cause dependency.
I had my injury at 18. I don’t remember much about the immediate after care. I only remember how crushingly hopeless and frustrating everything felt for the next couple years. I’m 32 now. I won’t lie and say there are not still moments where i feel like i’m just waiting/wanting to die but they come less often now and when they do I have new memories to replace the ones i lost. Those new memories help remind me being alive in general is kinda just waiting for death anyway and finding things to do in the meantime.
I started Emgality for the head pain. After 9 months I was feeling more like my old self enough to do very well in a technology coding boot camp. Ten years after my TBI I feel that I can have a career again. Sure I still suffer set backs due to the TBI and sleep and some motor control is still an issue. But that medicine has given me a lot more good days than bad days. Though every day still has some struggle. I'm optimistic more than before I started Emgality.
it IS like this, especially when combined with the super low functional vision (impacts reading, driving lots of places, so much more), the debilitating fatigue- i thought it was ME/CFS, but now i think it might have come from my pediatric TBI 32 years ago, when i was 5. my tbi was severe. it is wild that i’m still alive, actually. but, with those disabilities, and my depression and anxiety as well as OCD and chronic super awful pain, i really am stuck in bed most of the time, i walk around my home a little, to take care of my pets and try to take care of myself, mostly figuring out how to eat and what to eat and also, remembering to take my bajillions of medications. there are so many social things i WANT to go to, but i can’t, because my one social outing a week is this game night i host for a few hrs a week and it totally requires days of recovery time afterwards, for just sitting and playing games for a few hrs. they taught me to walk in a very cruel way, dragging me up and down the long carpeted hallway on my knees day after day. despite my neuropsych reports discussing the types of therapies and supports and accommodation things i i would need and benefit from, i never got anything. in fact, we weren’t even allowed to talk about my brain injury at home or elsewhere bc disability in my family was shameful (so hypocritical bc my mom also was disabled makes no sense, but she had “recovered”) but anyway. i’ve been exhausted and in pain since i was 5, and i have awful executive dysfunction from this and my adhd and stimulants stopped working once i started taking sleeping pills and they were my only source of energy ever, since 2012. my doctor says im too complex for her and i now finally have referrals to a neurologist and psychiatrist - i have done SO many tests and seen so many doctors and tried so much stuff and nothing has ever helped at all. so it really does feel like a slow death, but sort of a timeless one.’because i don’t have much of an awareness of time because of my life being the same day after day mostly….nothing really changes much, except when i feel hungry or notice the sun has gone down, or feel sleepy. or see someone’s kids have like aged many years since i last saw them and that felt like it was just last weeek. i hope these two doctors can help me because it gets harder and harder to accept this is my whole life and i’ll never get to experience much at all. especially love, and care. meep. anyway. i tried ketamine but it made my ocd worse. and i didn’t notice any other benefit from it. i live in a hella anti-“drug” state so the mushroom things mentioned above aren’t legal here. i know they are in colorado. life as someone who sleeps all day and night mostly…isn’t all that fun, really. without the stimulants, it makes it extra difficult to cope with life this way. and also, i want to mention that i have been trying to cope with everything by myself because i don’t have relationships with my mother and sister, really, but she has recently tried to help with some research a little bit. my entire life i have felt this way and told my mother and she just said i was lazy and exaggerating and to get over it and try harder. she never even bothered to learn about brain injury, over the last 32 years.