New here looking for TBI Survivors

[rhinnon]

Hi,

I am new here. I am a TBI survivor. I came off a horse almost three years ago going through a fence and hitting my head on a cemented wooden pole.

Long story short. Lots of doctors, lots of different medicines, counseling, and alot of baby steps.

All the professionals say that I am further along then most people who have suffered from something like this. I personally find this hard to believe.
Yes I have made improvements.. BUT..

I constantly feeli like I am on an island and no one who truly understands what is in my head.. I cannot expalin it. I find counseling so very frustrating because the person I am seeing has no experience with TBI and always tries to put all my problems back on my childhood and my upbringing..

I now suffer from a very strong fear of being in public and the very thought fo getting a job outside of the house terrifies me. I can go to the store for groceries and simple things for every day life.. but it has to be a store that I know very well and before I go in I know exactly where I am going and what i am getting. BUT I still have moments that it is so overwhleming that I will leave the cart and go back home.

I am seriously affected by visual and audio stimulation. I will slur.. and get the shakes, and break out in a sweat, I get tracers, and then I will normally sleep most of the day for a few days.. not wanting to do anything..

really don't know how much to post in the first message, I just wanted to try and find someone who really knows what I am feeling.. someone who knows why I feel like a huge failure at all times and so alone..

if i am in the wrong area please let me know..

Thank you for your help.
Rhi

[Boopers]

Oh Rhi,
First, I would like to welcome you to BT. I hope that someone on here will be able to help you.
I am so sorry for all you have gone through. Wow, that is amazing. I don't have any experience with TBI, I have short term memory lose from ARDS and now from my heart and lung problems but nothing like you are experiencing.

I do wish the best for you, and like I said, I hope someone here can help you with your questions.

Good luck,
Linda

[mommaoftoddlers2]

I am a tbi survivor myself. May 04. My head thought it was a basketball on a metal hammock stand. I guess they would say it was a mild head injury as I only spent about a week in the hospital. I do have lots of little symptoms. NOises for one get me. I have finally after that long gotten the horrible, terrible migraine x 50 (daily by the way) cycle broken with meds. I too do not like to go out much.

I am sending you a private message as well. You are not alone there are so many people like us trying to blend in.

hugs!!

[rhinnon]

Thank you both for the welcome.

I know that everyone has not suffered the same degree of TBI.. or should I say that they have dealt with it in its many forms. and no two ppl are alike with symptoms.

Like I said previously.. I AM better then I was.. I cannot account for almost 3 hours during the accident.. about 15 minutes prior to it and then the rest after.. My best freind took my to the ER and all they did was to take an xray of my shoulder and send me home with pain killers and muscle relaxers. Even with my frined pointing out the bloodied fence indentations in my head. THey completely disregarded it.

I think that might have been part of the first frustrating H@!! I went through.. I had horrid headaches.. short term memory loss, uncontrolable anger, dizziness that would but me on the floor, I could not read or look at anything that was bright. Being outside hurt my head. I was an emotional wreck.. Crying all the time and not being able to stop it I could not watch tv becasue everything moved WAY to fast I had a hard time being in a car not to mention I could not drive after it happened..
SO.. I went to my regular DR and was told it was all in my head that I was just suffereing from depression.
Talk about feeling like I was going crazy..
After about two months of me going back and still complaingin about things and having to write everything down to remember what I was supposed to ask them.. they sent me to get an CT Scan and an MRI. OK.. good thing was that there was only slight brain bruising. At least that is what they told me. SO then.. WOO HOO.. I really did have a problem. then comes all the different meds to try. After about 8 months of trying to get my meds worked out they decided that I needed to see a psychologist. So I went..
Mind you.. this whole time I am scared out of my mind of strangers..
The first time I met my psychologist I rubbed the paint off of 4 different pencils in the span of an hour.. I cannot tell you exactly why, I didn't even realize that I had done it..
During this time it was also discovered that I was having differential pupulary response.. simply put.. one eye would dialate and the other would not.. and this happend alot.. The psychologist sent me to a nuerologist.. This dr asked if I was having seizures.. I said no.. he sent me home saying that unless I was there was nothing he could do for me..
so on I went..
then the Doctors decided that I needed to see a psychiatrist.. that htey would be able to help me better.. So that is where I am at now.. only I have seen the actual psychiatrist only once.. I see a counselor twice a month, and he has never dealt with TBI and he keeps telling me that all my troubles are from my childhood and my parents..

OK.. GOOD NEWS!! I AM better...
I can read now without all the words swimming together, but I have to take breaks..

I can drive now as long as I have my sun glasses on and it is not TOO bright..but still have days that I won't because I am having a hard time with my sight.

I can go to the store when I need things.. Not for long and only for what i need

My dizziness is mostly controlled with only break through troubles from time to time.

my meds are probably as good as they are going to get and WOW.. that is awesome..

The headaches are not as frequent or as bad as they used to be.

I am not angry like I was

My memory is better but I still use lists alot


So I am better.. but now I just need to figure out how to get back out there to work and not be so darned afraid.. I need to stop being so afraid of new people..

But what i think I need/want the most is someone who understands all this crazy stuff..

My best friend of 23 years has never faltered in her trying to understand all of it.. but you can tell that it is frustrating for her too..

Ok.. enough blathering for now..

THank you both again.

[abbywestminster]

I relate to many of your issues. My lack of a short term memory is a huge issue in my life. I've always been very strong willed, but now i have anxiety issues as well, which annoys me, but i have accepted that i have a better life thru chemistry and pharmaceutical drugs. I had to learn to talk again. After a botched shunt tap, I was having 28 seizures in 24 hr periods for weeks. what a nightmare. now i'm living independently again and driving. now i need to find a new job. i don't want to tell potential employers about my issues, but i think i still have skills and abilities that would be worthy of getting a paycheck for. some days i just break down and cry because i just don't remember things, but i'll discover evidence of something i did, somewhere i've been, a project i started. when i don't remember things, there is no hint of what i'm not remembering. sometimes i have to make judgement calls based on the evidence at hand. my reading comprehension has majorly deteriorated. at least my headaches are not what they were. i don't like having my life ruled by my vp shunt, but it is.