New Member and don't know where to Post
 

I was poisoned about 22 yrs ago, and sustained severe brain injury from it. I have spent all this time in recovery, designing my own rehabilitation program, because my doctors said it was useless.

I don't feel like i belong in TBI, tho so many things are the same. I have been told that i don't belong in TBI because I am able to get better. But i have a cousin who wrecked his motorcycle and he has been getting better over time.

I would just like to talk to someone who has gotten better by working a program or 6, anything that would help them, how that felt.

Thanks,
StormE1

Hi and welcome. Acquired brain injuries come fom various sources, where a Traumatic Brain Injury (TBI) is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force.

http://www.biausa.org/FAQRetrieve.aspx?ID=43913

I'd say a poisoning that caused brain injury qualifies as an "external force". More importantly, this is a place to seek support and share experiences.

The fact that you are "able to get better" doesn't mean you don't have a TBI, ABI, or that you don't belong here. If I wasn't "able to get better" I'd be in a care facility somewhere wondering what happened and what year it was.

Stick around, ask questions, and share your experience with us.

:grouphug:

StormE,

Welcome to NeuroTalk. I think you should fit in fine here. There are many in my local brain injury support group who have been poisoned. Mostly by gas, propane, CO, chemo brain, etc and some by ingesting poison. You have the same struggles as TBI, mTBI and PCS so feel welcome.

How can we help you ?
What are your primary struggles ?

Many of the improvements come from learning new ways to accomplish tasks that don't work the old brain way.

btw, I like that you use double paragraph spacings. It makes it much easier to read posts.

My best to you.

Acquired Brain Injury, poisoned
 

thank you for your welcomes and brief intro's. i noticed right away that you have had functional assessments. i only learned about them by accident, and found out more when i was referred for an IQ test. you see, i suffered little damage to my verbal abilities, so people were reluctant or unable to believe that i had other damage.

so much is based on perception in a very limited environment. it was at home and traveling locally that my impairments revealed themselves the most. i was rarely able to initiate activities without prompting (of which i had none), and it was difficult for me to stop an activity once begun (like a jigsaw puzzle).

what the later testing revealed was severe memory damage... almost total lack of short term retention and long term recall. i manage to hide most of my symptoms from everyone except the people who help me with housework and travel. they see the real me, but they do not report to anyone.

today i have a "reassessment" interview with a psychiatrist, at an agency that has labelled me with Borderline Personality Disorder, because i refuse to be bullied and belittled by staff. i keep telling them it is PTSD, but they just act like i'm crazy.

i'm practically sick with anxiety over this appointment, fearful that my ride will not show up, that i will not be appropriately expressive, that the doctor will be disparaging and belittling. all these things have happened in the past, more than once, and recently. it's 4:00 in the morning and i should be sleeping, but it often helps me to talk with someone. only there is no one to talk with...

wish me well!
StormE1

A lot to handle!
 

You seem like you've come very far over the last 20+ years! I hope your appointment goes well!

I'm a little confused. Who is making you go to the psychiatrist and why? Anyway, if you can get a second opinion, I would. My husband has dealt with some psychologists who just didn't know what they were talking about. They are not all the same!

Good luck!

saw the psychiatrist, now it's PTSD
 

I have been seeing a Psychiatrist to get Valiums, because my GP will not prescribe them. and since i was poisoned by Psychiatrists, all their diagnoses were Psychiatric: bipolar, anxiety, panic, OCD, agoraphobia, trichotillomania, and finally when I "recovered" from all those, they said I must never have had them and said i had a "Borderline Personality Disorder"... that was 2 1/2 yrs ago. I was so mad i couldn't even address the issue until now.

I asked my Pdoc 5 months ago to reassess my Dx, but she said she didn't know me well enough, which is true, since they keep changing every year or 2, and I see them each for 20 minutes 2x a yr.

I took in massive quantities of documentation, including online tests and historical documents, and tapes of "consults", and at least this one removed the Borderline Dx and put me as PTSD. We did not even address my cognitive impairments. I don't care anymore, I just want them to give me my valiums and leave me alone.

What really made me laugh is that she put my former Primary Dx (bipolar) as "in remission", because everyone knows it can't be healed! Well, i did it.

But now i'm noticing these little mistakes typing and even not being able to finish a sentence, not having a word, having to point, and my helpers treating me really badly for it, like i'm making fun of them.

I'm worried that it's mini-strokes, but as I read the posts here, I remember that I have had 5 concussions where I was unconscious for at least half an hour and once for 2 hrs, or more, they let me go to sleep! :eek: I guess i might just be experiencing cumulative damage......

Thanks for reading...
StormE1

StormE,

If you have been taking Valium for a long time, it can be a part of your memory problems. Benzos have a well know side-effect of memory problems.

It would help if you could post the different medications and treatments you have received including how long you were on the various meds.

Your BPD diagnosis can also be a misdiagnosis that would be more accurate as PCS or chemo-brain. Chemo-brain is the result of chemo-therapy and has many of the same symptoms as PCS and poisonings.

Have you read the Vitamins thread in the stickies at the top ? You may find brain nutrition to be a big help. The injured brain needs nutritional help.

I am confused by your mention of 2 1/2 years vs 22 years ago. Typo or just incomplete information ?

reply to Mark
 

Thanks for thinking about my problems. You are not the first one to mention the effects of "long term use of benzodiazepams". What most people do not understand, or maybe believe, is that i only use them when i need to, and that is not usually more than 3 times a week, sometimes not at all for two weeks. I had only used up an Rx one time until last month. My stress loads lately have been higher than ever, from various encounters with medical providers.

I found out about the BPD Dx 2 1/2 yrs ago, tho I think more than one Psychiatrist thought about it, not believing that I had been poisoned. I have seen other people who were in the same condition as me, for the same reasons, more than twice, so i know it happens. They know it too, if they would be honest. What really gets me in hot water is that I won't take any more Psych Meds. How could I ? And I insist on these bizarre alternative treatments, like acupuncture and holosync and meditation... :eek:

Hahahaha, well, it's good to be so far advanced in my rehabilitation, and I did get the Psych. to change my Dx to PTSD. Now i'm fighting to have that BPD Dx "purged" from my files. Perhaps my health will prevail until i see the end of PTSD too! Wouldn't that put a kink in their tails! :D

Thanks for the gift of listening...
StormE1

Dear Storm,

Welcome, just had a read though. I am sorry you are having difficulties. This struggle between PTSD and BPD is not uncommon. Many on call GP's will give this diagnosis in the UK when they are called to a suicide attempt in the UK. It seems BPD is a standard diagnosis.
PTSD is vastly on the otherhand misunderstood.

Do you know may I ask what triggered your bipolar? Do you feel it is a chemical imbalance or do you feel that something else has culminated in this response in your brain?

Thinking of you

thanks for your interest~
 

Peachey, see post of 5/19/13, just above:

QUOTE: [since i was poisoned by Psychiatrists, all their diagnoses were Psychiatric: bipolar, anxiety, panic, OCD, agoraphobia, trichotillomania, and finally when I "recovered" from all those, they said I must never have had them and said i had a "Borderline Personality Disorder"... that was 2 1/2 yrs ago. I was so mad i couldn't even address the issue until now.]

i was never diagnosed with cognitive impairments, even tho i was tested and they were severe and most of the cause of my need for assistance.

StormE1