[SpaceCadet]

This is ridiculous!

I'm almost two years out from my injury and it only gets worse and worse for me. I read about other people's experience with their recovery and it makes me frustrated because mine is nothing like it. Yes, I understand the saying goes "You seen one head injury, you seen ONE head injury" and everyone's recovery will be different, but show me just ONE person's story that says they decline more and more every month that passes. It's non-existant. That's why I feel so damn alone because I have not one person who I can relate to.

No matter how much rest I get, no matter how much stress I avoid, medicines I take or don't take, vitamins/supplements I take, doctors I see, rehab programs I visit and stimulation I avoid, it seems like nothing works. My mom keeps telling me to just do what makes me feel better. There is nothing that makes me feel better! Okay, I lied, every once in awhile if I dope myself up on Lortabs, it will increase my mood and make me not give a crap if I can't function. That's about it. Even spending time with my son is frustrating because I can't keep up with him and it frustrates me that I can't do much with him. I've tried everything in the last year and 8 months to get better and nothing works.

Every time I find something that makes me feel better, it only works once or once in awhile and then it doesn't work again for awhile. For instance, my seizure medication, Keppra. The first time I took it, I swear I felt normal again. My thoughts were coming in so clearly and my speech was very intelligent and articulate. Next day, I take the same dose and it makes me function worse. I tried upping the dose and that didn't work, so I stopped taking it. I started back up recently, it did the same thing. Made me function well the first time and every other day afterwards it made me feel worse.

Draw Something on my phone. I started playing and for a few days, it helped with my mood and brain functioning. After that, it made me feel worse. I stopped playing for a couple weeks before trying again....and it still made me worse. I can't even read one page of my book without my brain getting flooded.

For the last few weeks, I've spent 90% of my days just hiding out in my room. I will either stare at the ceiling, play some brain games on my phone or try and read my book. Nothing seems to help and even if I just stare at the ceiling, my brain is still flooded. I can hardly schedule a doctor appointment because I feel like don't know what to say on the phone.

One of my therapists awhile back said to stop focusing on what I can't do and think about.what I CAN do.....let's see:

Wake up. Breathe. Stare at the ceiling. Oh, stare at the wall. Wait wait....I know. Open my eyes.

This is complete and utter torture. For those of you with really bad headaches and dizziness, PLEASE be thankful that's all you have to deal with. I can't even watch a TV show with my son, take him to the park, schedule my own doctor appointment or read a book.

I'm almost 2 years out with symptoms that are far, FAR worse than what they were immediately after the injury.

Back to counting the popcorn/bumps on my ceiling.

[cyclecrash]

I am so sorry to hear you are going through all of this. I just wanted to mention that I read somewhere that if a person with PCS has symptoms that are getting worse it is most likely psychological. Are you still seeing a psychologist? I wish I could remember which of the many articles I read that in.

I hope you find some relief soon.

CC

[SpaceCadet]

CC,

My neurologist told me it's likely psychogical or PTSD related, but I beg to differ. I don't understand how it could possibly be psychological.

I went to a psychologist once and my brain shut down about 5 minutes into the session. I didn't understand anything he was saying after that, the session ended and I never went back. I'm going to see my neuropsychologist in March for the second neuropsych assessment since my injury. It will likely show a decline, then maybe people will start taking me seriously. It's hard to get any help when everyone is putting the blame on depression, anxiety and psychology.

Thanks for your support, my friend. I wish you well on your recovery.

Nick

[cyclecrash]

As was stated in other threads.....psychological problems cause a LOT of physical symptoms and it still requires treatment. It doesn't mean you aren't suffering or that your faking or exaggerating, it just requires different treatment plans!

I think its fabulous that you're going to see a neuropsych again. I would think that would be the perfect person to help you! Don't try to convince them there's nothing psychological going on just convince them that no matter what is going on you need HELP! !

I hope your appointment in March helps clear things up for you!

CC

[Mokey]

Did you ever get your vision assessed by a neuro opthamologist? If your eyes don't work together (a common event after brain injury), no amount of anything else will make you feel better. The brain's biggest job is dealing with vision, so if that is messed up, so are you (we) !

Maybe your phone is too small to focus on. Tablet or a computer? May be more relaxing and less demanding.

I listened to Glen Gould play Bach and felt lifted out of brain injury for a moment. Highly recommended!
Hang in there.

[Concussion]

Nick,

Hi, guy.

I am sorry you sound so angry. So distraught. So at your wits end. I can feel with you, you pain and anguish.

I cannot identify with you though, as I have followed your plight awhile, and noticed one thing.........you have not slowed down, you have not stopped, you have not trully rested. And, I know you have tried, but you have many many things in your life driving you, especially the little one, and your love of that child.

Mokey has a good point with music though........find something soothing. Get away from that small screen straining, or forget the screen and just use the phone as your connection and get earphones and listen quietly to something soothing.

I personally like Yanni's stuff:

Nostalgia

- or -
-some Bach :

Well Tempered Clavier - Bach

There is much available on You-Tube for a quick quiet time - I don't own a cell-phone so can't explain how you would access or setup a playlist, but relaxing in the dark with earphones and just you is a wonderful cleansing experience.

But, nothing will begin until you actually do REST you BRAIN. Read back thru the threads on Yoga, breathing, etc. find something that helps you cleanse you, and relax............ you won't be worth anything to ANYONE until you do.

Let yourself be happy, let yourself be sad, its ok, its actually expected.

Cry when you need to; laugh when you want to - its really needed.

Live your future, not your past.

Best wishes, guy.

Hug that little person with all your heart.

[SpaceCadet]

Thank you everyone. It's hard to take a break and focus on me when I have so many responsibilities. I'm the sole provider for my biological son, my step-son, my girlfriend and one child on the way. I'm supporting them with a measily SSI check that barely covers rent and bills. If it wasn't for my mom helping out every once in awhile with diapers, wipes, etc. we would have fell under by now. I wish I could take one of my checks and disappear for an entire month, but that would mean my kids and girlfriend would be homeless. It's impossible to get any rest in a house full of kids and a pregnant woman who relies on you.

*sigh*

I fear that it's too late for me anyways. It's already been almost 2 years and I haven't REALLY given my brain a chance to heal. I think I'm just stuck where I'm at now.

I'm gonna try the music therapy tomorrow. I will mention the eye doctor thing at my next doctor appt. Ty for the suggestions .

Nick

[Brain patch]

Hi,
I am so sorry to hear your story but so relieved to find someone who is totally like me. Everything you said I can so relate to. I am to brain damaged to write out my whole story again so look me up under brain patch more info. I am just going for my first neuropsychiatric test soon. Waiting for a call back to tell me when my appt. is. I need to figure out how to get an MRI or cat scan. I know it would show problems. Why is it so hard to just make a dr. Appt? I get so tired trying to make them understand that I just give up and let them think whatever they want which like you said is so wrong. They blame depression, anxiety, PTSD, the medication you have to take. I have a daughter and I am the same as you with your son. It is so sad. I used to be such a great mom. Now she has to tell me what is going on in her life over and over. Thank god she is at least older and in college now. If you want to Be friends I would love to. I am to mentally challenged to try and figure out how to send you a friend request or I would. You are not alone. I have been like this since accident in 2006 . love to you.

[SpaceCadet]

brain patch,

Hi there. It sounds like we have a lot of the same struggles. If you ever need someone to talk to feel free to send me a PM.

Everyone else....I seriously considered suicide today. What's the point in living if there is no hope for me ever recovering? I can't really do much for my son in this condition and it's only getting worse. I keep sleeping and sleeping, laying in bed, trying to read a book and avoiding stimulation and stress like the plague but still function worse and worse everyday. What the hell could possibly be happening to me? For Christ sakes, I just want a little bit of thought clarity. I don't ever get a moment of peace. Can't remember the last time I had a "symptom free" day. I don't even know what that is.

Might as well just give up.

[MsRriO]

Please don't. Please consider the little ones in your life.

What if you DO recover some? What if you give up before there's a good day?

Not discounting your despair. Please reach out even if its to a suicide help line.

Suicidal thoughts are so scary and I don't think you should be alone with them.

Find help. If not for yourself, then do it for yourself as a favour to your children. They should never have to live with that awful memory plaguing them their whole life through. The legacy of pain you will leave behind is abusive, my friend. And you are NOT that kind of dad. You love them.

Please reach out. For tangible help.