Since the very beginning of my recovery, I've been doing nothing but progressing backwards. I've been through 3 different neurologists, a NUCCA chiropractor, nurse practitioner and a neuropsychologist. I've had tons of visits to the emergency room, CT scans, MRIs, EEGs and regular blood tests. I've attended a brain injury rehabilitation program for a little over a month now. Not one of these doctors or therapists that I've seen have ever witnessed what I'm going through.

For awhile there, I was starting to believe that it was just psychological. My neurologist and case manager repeated this to me over and over again...So, I started to think...Maybe they were right? I stopped the constant worry about how bad my cognitive stuff was, stayed focused on my therapy and recovery and started to move forward with my life. The second week I was at NCEP, was probably the best I've felt in a long time. I felt like I was on top of the world! If my symptoms stayed that way for the rest of my life, I would have been okay with that. But, they didn't. Every week since then, its gotten worse and worse.

Now, its completely unbearable. 2 Fridays ago, we went to Red Rock for a client/staff outing @ NCEP. Ever since that day, I've been screwed up beyond recognition...and its only gotten worse. I was so frustrated yesterday, I called my girlfriend and started to go off on her for things that weren't even true! I was claiming to have seen her with another guy, I was accusing her of cheating - and I was rambling on and on until she finally said "BABE!!!! You are COMPLETELY out of it!!!". Last night, I picked my son up and got on the wrong bus...twice, going the wrong direction. My sense of direction was completely off and I felt like a dementia patient.

I've been walking around the house today in a cloud of confusion. Not really sure what to say or do, my mind is just broken and my words are hardly making sense. I'm really worried...This has been going on for two weeks....Well, longer but its been two weeks of it being this bad. I know there are setbacks but I've never experienced a true setback. Just cognitive declines that don't go away.

I've been under a lot of stress lately...Not only is this crap going on with my brain injury, but I've been bouncing from place to place with my girlfriend and kids, my unemployment ran out, SSI doesn't look like they are going to approve me (they sent me to a psychologist that gave me the easiest psychological exam known to mankind), I'm living in my mother's living room now (on the floor) and my girlfriend and kids are staying downtown with a so-called friend, that wants to kick her out everyday, my kid's insurance got cut off because Welfare mistakenly thought I was working for a company I've never even heard of, NCEP wants to discharge me because they don't see me making any progress (my counselor said I'm progressing backwards)....I know stress does weird things to people with brain injuries, but when the stressful situation is over and I'm only thinking positive, why doesn't it ever go away.

I seriously want to jump off a bridge. Next month will be a year...if this is all my brain is going to heal, then I guess I'm screwed up for life. That website about TBI myths was right...there is no recovery. Despite all this crap going on with me, I've remained positive in hopes of what I'm experiencing isn't permanent (even though it very much seems like it) and it will pass any day now. My kids need me to be strong for them, and I'm very much so trying to be...but I'm afraid that I won't ever make it out of this cognitive decline.

I went from no symptoms, to mild symptoms, to severe symptoms with overstimulation, to having severe cognitive problems from the moment I wake up until I go to sleep. Even if I spend my entire day relaxing at home, I'm completely messed up 24/7. Its pure torture.

I'm requesting another MRI...Even though I hope it doesn't show my brain shrinking, I guess if it did, I would at least have some answers. I read earlier today there actually HAVE been cases of early onset of Alzheimer's and dementia in patients as young as 28.

This turned into a huge vent, I guess.

Nick,

In an older thread, you described how well you were doing. I warned against extremes of either direction, positive or negative. I'm not sure my words were taken so well at the time, but I stand by them. Now that the pendulum has swung to the other side, it might be more clear. I have been through everything you describe, and more. I have been in pain for over 36 years. I do not know if I will ever be better. But I am still here. My faith in God and the Ways of His universe is sometimes the only thing that keeps me going. Some day all this suffering will make sense, for all of us. It is up to you to find whatever keeps you in the game, waiting for that day. You can take a lot more than you think.

Take care
Kenjhee

Kenjhee,

Well, I guess you were right ...

I'm in the middle of a complete mental breakdown.

Thanks for the fair warning...and the kind words of encouragement.

I'm not really going to jump off a bridge, but I won't lie...Its crossed my mind.

Nick

I "shoot" myself every day. Don't feel bad.

I couldn't save my friend. Hoping to have a better track record here.

Nick,

I know people with early onset Alzheimer's Disease. You do not sound like they do. You do not have the symptoms they have. I have watched people progress through the deterioration of AD and you definitely are not deteriorating like AD.

I think you need to get out of the chaos of the city. You need to find a way to spend time where there are only nature sounds. Not at the lake and not with a bunch of people. Just with a few people and/or maybe a dog to keep you company..

Have you ever had any allergy testing done? It sounds far fetched but an allergist could help you rule it out. You may have developed a gluten allergy or any one of many other allergies that effect the brain.

The SSA people sound like they are messing up. SSI is based on simple disability and lack of financial resources. It does not need to to have a permanent disability. SSDI does. They are two different systems of benefits. Maybe you should check with an SSDI attorney. They do not charge for their consultation.

Take a breath and give it some time.

There is a story:

Two flies land on a frying pan that had been used to fry bologna. They both eat their fill of the scraps left behind. They struggle to take off so they climb up onto the handle that is sticking out over the edge of the stove.

The first fly jumps off and tries to fly while plummeting to the floor. Splat...

The second fly tries the same thing. Splat.....

Remember the moral of the story:

Don't fly of the handle when you are full of bologna.

My best to you.

I love all the wonderful advise. It truly does help. I can relate Nick. as you know I was just released from two weeks inpatient. I'm doing better. I too was having alot of ups and down. I got scared of myself. At times I think I'm doing better and a few bad days and I'm down in the dumps. I was told with the head injury I will suffer from "mood" problems for the rest of my life...great.

With that being said, I have to say it helped to know that even though moods aren't "normal" it can be with a post TBI. As long as I have a way to understand it then I can learn to accept it.

I dont know really what to say. I can relate, I feel your frustrations and I know all of us here all dream of being "normal" again.

Being normal again, I was told just isn't an option. Acceptance is. I was told to grieve the person I used to be and accept the person I am today.

Good luck my friend. You are all in my thoughts. I hope you have some better days coming up.

Thank you all for the wonderful advice.

Crystal, I'm glad you are doing better now...That is great news! I hope you continue to improve as the days/weeks/months pass.

Mark, that story was hilarious. Is it a true story? =P

And no, I haven't been tested for allergies. I have an appointment, June 4th, with Social Services to see about getting some insurance. I've had a nasty head cold for an entire week now. I'm sure that has been contributing to the way I've felt...and on top of that, I've had a sinus infection for God knows how long.

Hopefully once I get some insurance, I'll be able to see more doctors and find out the source of my problem.

Isn't there other neuro-degenerative diseases, besides AD?

Nick

I know how u feel I'm going through what going through I'm getting worse and now I have tho twitch in my neck and head every 20 min or so real shakey my hands I have all the symtomps you do, I suffered 2 concussions in 5 months I had 3-4 pervious concussions fom boxing and I feel horrible jut like you your not alone I have 4 kids and a wife and I don't know where I am going to get payments to live on after.

The school I was in has Insurance for accidents where I was hurt I wa taking hospital security officer training I got the job $44,000 a year to start now I have no income no sighs of recovery and I also have post tramadic syndrome from the death of my son when I was in the army. You can google his story "evander lee Daniels" so you not alone I just have to accept it and hope for the best.

I lived through a loss of a son etc this is almost as worst but I'm doing my best to get through it also. I too feel like jumping fom a bridge sometimes (jokingly) cause this is all one big mess but I got to be positive and at least I alive now and I have 4 beatiful kids to help raise even I I have demeansa or Parkinson's later in life I guess it's gods will cause nothing worst then when I lived through before but I know what you meen bud this is hell pure hell torture I too been to te emergency doZen times and I had 2 MRI's etc etc and no sighns of getting any better

I can relate to your topic title.

It was still rough for me, pain-wise at the 1-year mark.

Feel bad for the guy w/36 years of pain. That is- horrible. Inspiring that he's persevered.

Good news is, the pain could lessen over the next year.

I wish doctors, mainstream or alternative could be more helpful, but outside of the highest-end treatments for celebrities from Dr. Amen, NCR, or a miracle from God, I have no idea what can help lessen pain for good.

I know dr juSt send you home they can't really help much