Hi,

Was rear-ended by a drunk driver at over 60mph last summer while waiting for a light to change. Never hit my head, but had a death grip on the steering wheel that took my head and neck for a wild ride that resulted in a short loss of consiousness and all of the wonderful symptoms I have today.

Been through a bunch of doctors that said I would get better in 2 to 3 months and handed me a bunch of pills. After that time passed they said that it could be up to a year and as that time is about to pass, they now say two years.

I am so tired of being put through this. Because I can talk and function semi-normally people pass me off. They don't understand what this is like. I took great pride in my brain, and now part of me is gone. They keep saying that I am depressed, and that I get irritated easily.

I'm sorry but feeling sad at times because you realize you now have limits on your concentration, memory, and attention span is not depression. It is grieving a loss. Get hit in the head hard and for the next hour your bell has been rung see how chipper you are. For the irritability have your life stolen and see how ****** you get.

I think that is a huge factor in PCS not being taking seriously. They list depression and anger issues as symptoms as if there is no reason behind it. I believe sadness and anger are rational reactions to a horrible event. I deeply resent being told that depression is just a condition of PCS so you must have it, as if that negates the root cause of it.

For the first three months I had constant migraine type pain. I would point to a long muscle in my neck and tell them that whenever that would get really tight (like steel) that the head pain would be worse. They wouldn't listen. It wasn't until today that I found out it was Splenius Capitis Muscle Syndrome. Apparently it's fairly common in auto injuries. This can cause severe headache like pain and visual disturbances.

For the first six months I would have visual disturbances that looked like stationary objects were flying at my face. I would literally flinch and jerk my neck all up in response. My peripheral vision was deeply affected for the first few months with what looked liked someone smeared vaseline all along the sides of my eyes, it has gotten better with time but still had short periods where I would go blind (No incidents in past 5 months). Still can't drive at night because of the peripheral loss (looks like cars next to me are driving into me), and the lights disorient me.

It makes me really upset that no one ever mentioned that the headaches and visual disturbances could be caused by that or Occipital neuralgia. Why is it that when it comes to a diagnosis with PCS that they just hand you pills and say it will all go away? As if it realives them of any duty to find a real cause.

Anyways I'm sure you can tell I am mad. For the past year I have been so out of it and listened to them telling me that I will get over it. It really bothered to have to deal with anything regarding my injuries because I always wanted to believe that it was going to go away.

Today I took the first step in researching it and came across these two solid, concrete items that make perfect sense. The Splenius Capitis makes perfect sense for the headaches, and the occipital neuralgia explains the horrible, acidic burning in my scalp. So I am angry that we could of done something sooner with a diagnosis, but also feeling empowered that there is something solid to hold onto.

I finally started to get good medical care toward the end when my $15,000 PIP coverage ran out. For so long I had the most idiotic of doctors. My current neurologist was awesome and finally gave me some real answers. Not all, but at least some. I was such a mess before seeing her.

She currently has me on exelon patches. I can't tell you how much this has helped with feeling normal again. I am concerned, though, as it is used in alzheimer's patients and can only be taken for up to two years. I am 4 months on now and have forgotton to take off the patch or it has fallen off and I feel myself slipping back into that black hole. I would highly recommend it to anyone suffering like I have.

It has made all the difference in being able to think right again and advocate for myself. Before I can not believe how much I was taken advantage of because my brain would shut down and I couldn't defend myself.

I would so love to meet people like me who have dealt with this and share tips and concerns. Is anyone else on alzheimer's medication? Any support would be greatly appreciated. I can't even begin to tell you how happy I was to find this site and read some of the posts. Finally someone who does actually understand. I can't tell you what it's like getting pat answers and well meant sentiment when others don't have a clue.

Anyways, have to go. Got a lot of research to go over with my lawyer on tomorrow. Like did you know that people with TBIs are 4 times as likely to develop alzheimers later in life. We also can develop plaque on the brain as seen in much older individuals. Scary stuff.

Take care all,

Angie

Angie,
You're in good company.
my tbi, auto accident was in 98.
I know just what you're goinig through, I am alot better, after almost 11 years, but it's time for me to be real now, I'm Never going to be myself.

I have lost Everything. I wasn't ultra rich, but was "very comfortable".

My attorneys have stolen from me, have screwed up my entire case, and family is non existent.

I haven't slept for days, with each new "drama" that pops up in life, and I haven't taken my aricept yet..

I'm so very very sorry that this has happened to you. The things that you explain are all real, and so many doctors have no clue! Hope you find a really good rehab center and a neuropsychologist / neuropsychiatrist.

We'll talk more...

Pete
Asb

Hi Angie!

Wow, you have just described me.....I fell in 2005 since been diagnosed with mild tbi. With time, I realized that I am who I am NOW..not who I was before the fall. I pretty much accept myself now. I struggle to not do things that bring on symptons...changed my way of life to 'calm' ummmmm's. I sometimes bring up 'who I was' before the fall and still sometimes it makes me sad. ( used to get really angry about it, but sadness has overtaken the anger) I was really really smart, type A, on top of things...healthy. Now I am a bit slow, not so much on top of things and my health has suffered partly due to not being as active as I was and of course I'm 4 years older (now 57) and as I learned a long time ago, if you don't use 'it' you will loose it. I worked all my life to be active (as my grandmother used to say, I don't want to end up in a wheelchair & she exercised everyday up into her 90's) I worked at keeping informed up to date on everything from news, to music and read at least one book a month. Now I don't read well, since my eyes jump up and down due to the vestibular issues. Since I also have vestibular problems due to the fall, I am not able to exercise etc either.

I do want you to know, this place is a God send for most of us. I was so confused after the fall, no help from doctors at that point, because I wasn't able to 'tell' them much and as I found out they really can not read my mind *smiles*. But after finding this place, I was able to put into words what was going on and fortunately I have a good group of doctors now who work together for my benefit.

I remember my first neurologist telling me also, oh give yourself 3 months, when that passed, give yourself 6 months, when that passed give yourself a year, when that passed, sometimes it takes up to 2 years, when that passed, I realized my life is what it is...and I changed doctors. I still work, struggle everyday to maintain, people I work with sometimes look at me as though I'm from another planet. I've learned not to take that so personally either. They don't 'get it' I look good, sometimes I talk good, sometimes I can complete a task with no mistakes, but I mean it is a struggle to remember the clothes that I have already worn to work this week, think about every word that comes out of my mouth, because I use incorrect words that do not relate at all to what the discussion is, and they have no idea as to how many times, I go over something, redo it, trash and start over many projects....

When I'm 'up' I like to come here, when I'm angry I like to come here, when I'm sad I like to come here....we understand and we 'get it'!

Take care...keep your light around you, stay positive....

Life is constantly changing.

Melek

hi Angie and welcome

check out some of the stickys at the top of the page

here is a couple of links that may help



http://www.utahinjurylawblog.com/200...aumatic_1.html

http://www.biausa.org/stateoffices.htm

Here's my take on it Angie,
You betcha I had a HUGE grieving period because the first head injury (I've had three in the last two years from fainting), caused me to feel like I lost 1/2 of my IQ (thankfully, that came back at about a year and I feel at about 90%.) I've always taken pride on the fact that I had a high IQ and could figure anything out, but this took it away from me (again, temporarily). My neuro also reminds me frequently that I will never be able to handle stress as well as I used to, whenever I complain about my other symptoms from the head injury which are exacerbated by stress (myoclonis, parasomnia).

So, there's a couple things going on.

I was WAY more depressed in the beginning than I am now because it was such a huge instant life change. Antidepressants didn't even begin to touch the grieving, but I'm over that now and have accepted my new normal. I believe the antidepressants along with the other drugs I take for the symptoms REALLY help me to live a normal life as possible.

I hear your anger about finding the real cause, but there's nothing they can do (besides medication) even after they find the cause in most cases.

My doc found my brain injury on the MRI and it didn't change any of the medications I was on. It just made me feel 'justified' in a way that I was not being a hypochondriac or something. Getting the proof didn't change my lifestyle, as my neurologist told me that I needed to keep working full time regardless of how it made me feel (she was right, by the way) and regardless of how stressful my job was because if I didn't maintain as much of a normal life as before, it would be very easy for my brain to stay 'stuck' where it was. She had me on provigal for a while to help me focus my brain. It gave me headaches and made me grind my teeth, so I went off it and just lived with the 'duh'.

I understand the need for a diagnosis, etc., I really do- but it doesn't really change anything. All they can do is treat the symptoms.

You asked about Alzheimer’s medications. I'm not. But I am on Parkinson’s' meds since the brain injury, as well as klonopin (both for the myoclonis) and seroquel (for the parasomnia).

I know how frustrating it is, I really do- but I'm two years out now and it's really taught me patience.

I have a very serious TBI from a bad wreck we were in. It is very frustrating. It also leaves you feeling very alone at times. I woke up in a trauma center and had to learn much over again. I have lost years of my memories and my short term memory is impared for life. I will never smell or taste again. I had to learn to even brush my hair and simple things like that again. I am still learning. I have spelling problems and writing problems. I also had several injuries to my body that are still being fixed as allowed. It is very difficult to be going along and then one day like for me you wake up and your not you anymore. Except my heart is the same but what I did is not the same. I was an interpreter for the deaf and lost 25 yrs of sign language. I had cooked all my life and was a ranchers wife and could not remember how to cook. I have speech problems and all sort of things. I understand your frustration as it is very difficult to fight to get your life back or some sort of life back. I will never be the person that was and am constantly having to adapt and make changes. Brain injury headaches are terrible and often not much will take one of mine away. I live on pain meds 24/7 now and other meds. I was told by one of my brain injury doctors that a person has to grieve the loss of the person that was. I know I did that and still do at times. I was out for 8 months when I came alert to the world and all was changed for me. It has been a long process and I was told it would be a long process. Some things will come back and some never will. It is a battle to accept when you knew you worked once,functioned highly in society once and now your ability to function is very low. It is helpful to meet others that understand what your going through and can relate. I am new here as of today but this I am not new too and can relate. I think anger at the loss is ok and needed to help move on. I still have days I get angry and our wreck was in 2007. I am sorry your going through this and hope for you it does get better. My husband suffered a severe concusion and deals with far less than me with the TBI and he has come a long way with that. I still hope for the best for me no matter what the doctors say. I have walking difficulties as well that confine me but my will to overcome is strong and that is on my side. I even had to learn the computer all over again and am still learning. Hang in there as things will get better.
Sharlynn

Wow Sharlynn, you've really had a rough, rough go of it. Like you, but to MUCH less of a degree, I'm reminded that I'm living a new normal. I tell people it's OK to fill in the blanks for me, otherwise we'd be waiting all day for me to finish a sentence sometimes! I tell people up front when I'm having a particularly "jerky" day (myclonis), so they don't think I'm having a seizure or something. I've found that it puts people at ease if you just tell them up front what they're dealing with that day.

I interviewed for and was offered a job right before my head injury. I started the job right after the head injury. I cried every.single.night out of frustration that these people would never know how smart I really was. As you wrote, I went through a HUGE grieving process over what I'd lost. I also learned to quit identifying myself by the things that don't really matter. Most people didn't really care how smart I was. They cared that I was a nice person who treated people well. That part of me didn't change.

It's been two years since the head injury that caused all of the problems and I'm mostly back to normal thanks to a lot of drugs. I'm so thankful that my neurologist wasn't dismissive as the neurols of some that I've seen from a few folks here. I broke 7 bones in my face with my last head injury last December (I've had two since the initial injury that caused brain damage to the back of my brain) and am reminded of it every single day, but life goes on.

Sharlynn, your story breaks my heart, but it also touches my heart because I can just feel the survivor instinct in you. I think that is what makes or breaks those of us with head injuries. My neurologist even warned me about that.

I hope the very best for you and your husband. I think your story is very inspirational.

Sharrlynn,

Wow, what a story. Did I understand you correctly that you were in a coma for 8 months? If so, you sound like you are doing great considering where you started.

I was at the Occupational and Speech Therapists' today for the first time since my injury in 2001. They both were adamant at telling me to stop comparing the present to the past. They say that trying to hold to the past will only hamper my future.

Hopefully, your work with the deaf has prepared you well for your own and your husband's condition. My dysfunctions have given me a new understanding and appreciation for the disabilities of others. As you saw others work past their disabilities, you learned not to let your disabilities stop you.

I have read a lot about the gains in neuro-plasticity recently. Those with one time focal injuries rather than repeated diffuse injuries have great promise to heal as the technology of retraining and rewiring the brain gets to the main stream. Your improvement so far makes you sound like a good candidate for continued healing.

As you acquire a new or improved skill or function, be grateful with all of your heart. My only improvements have been due to learning work-arounds or other accommodations.

Keep up the good and hard work. When you get tired or frustrated, remember, tomorrow, you have another chance to improve.

MARK,I was at the Occupational and Speech Therapists' today for the first time since my injury in 2001. They both were adamant at telling me to stop comparing the present to the past. They say that trying to hold to the past will only hamper my future.

This is what they told me also 4 years ago,but its a constant problem even now.

Wahey! We all have x4 chance of getting alzheimer's! Great news! Stuff like that is really not worth knowing or thinking about. If I get diagnosed with alzheimer's, that'll be my number and I'll say my goodbyes and get out of here swiftly.