SO glad I found this forum!

[RisibleGirl]

I fainted back in June and hit the back of my head against the dresser and then against the wall. Ever since then, I've had many neurological problems (http://www.mostlyrisible.com/index.php/weblog/comments/making_a_list_and_checking_it_twice/).

I am seeing my Neurologist tomorrow to go over a sleep study she set up for me and am going to try to get an answer from her on what exactly is going on.

I've been on the Internet trying to match my symptoms to something- and until now have come up with Parkinson's. Talk about scaring myself! I can deal with the idea of PCS much better.

I also have PTSD, which has probably exacerbated the issue.

I'll keep reading!
~Lori

[jeffn]

Lori there's a great deal of information here from people who have been injured and suffer from TBI/ PCS. I've learned a great deal here on this forum and there's new information coming on line daily.

Seattle, That's cool I lived there for 33 years love the city, moved to Southern Ca.last year because of health issue. I do not miss the rain, but I do miss the water the mountains, the Seattle Life style and a good cup of coffee.

Take care Jeffn:)

[RisibleGirl]

Too funny! I grew up in Southern California and moved to Seattle. :) I love it here for just the reasons you mentioned. I can't imagine ever leaving.

So what's your story Jeff? How did you end up here?

~Lori

[Lucy]

HI Lori. Have you seen any other specialists?? Seeing what age you are etc kind of makes this hard for me to deal with and comment on. I also had to resort to the internet to find out what was going on with me. ( 6 years ago when I was 45 and in some ways very similar to you) Don't forget that you can't always trust what you are told and often there is no physical evidence to back anything up. Please, please don't hit your head again - that should be your number one priority - just don't put your self in any situation that you could! Keep us posted on progress - my first specialist was a neuropsychologist privately paid and not via insurer and jeff-n is a very good voice of calm rational reasoning!

[jeffn]

TO Lori, nice to talk with someone from Seattle. I still have a lot of family and friends in that part of the world.

I was hit by a Drunk Driver on my bike in 2003, suffered a TBI from the collision and Asthma, so damp cool weather does not agree with me at this time. I'm here doing research and how to recover from the TBI and the other symptoms caused by the trauma.

You may want to check out a link Brain State Technologies and watch the video by Dr. Robert Scaer. Theres a great deal of information on TBI-PCS-PTSD and in my opinion this guy hits the nail on the head.

I'm new to this forum so I don't know how to add a link yet.

Take Care Hope this helps and saves you some time.

Jeffn:)

[Curious]

hi jeff,

adding a link is easy. just type in www(dot)whaterverthesite(dot)com

or you can copy it from the address bar and paste it to a reply.

or click on this icon and add the addy
http://neurotalk.psychcentral.com/images/editor/createlink.gif

sample: www.google.com (http://www.google.com)

[RisibleGirl]

Thank you for your reply. I've not seen any other specialists yet. I've seen this Neurologist three times, tomorrow will be my fourth.

In the beginning, she said that my symptoms might last a while and that lots of people who've had a brain injury have lessoned ability to handle stress. Lots of the symptoms I'm exhibiting could also be stress-related, although I don't have any more stress factors than I did before.

I'm lucky in that my insurance company allows me to see specialists without a (gah- what's the word like recommendation?) (I hate it when I can't think of words... I'm a communicator for a living!

If you don't mind my asking, what brought you to this place? And it was six years ago and you're still having problems? Wow- I'm really sorry to read that.

~Lori

[Curious]

pssst....referral....

:hug:

[RisibleGirl]

I found the site- thank you. I look forward to reading this.

I feel comfortable here, so I'm going to share something in the back of my mind.

I was diagnosed with PTSD due to physical and sexual abuse as a child and teen. Due to that I've always had a very heightened startle reflex. After hitting my head, the startle reflex has gone through the roof (bright lights, flashing lights, loud noises, seeing things out of the corner of my eye that I wasn't expecting... you get the idea).

I haven't mentioned the PTSD to my Neurologist because I'm fearful of being tagged with an emotional disorder rather than a physical disorder. I've found that doctors tend to want to give an emotional reason for something, rather than dig into what is causing the physical symptoms.

I also have a genetic liver disease and instead of getting to the bottom of why I was exhausted so much, the doctors gave me antidepressants. Thankfully, I didn't roll over and play dead. I knew I wasn't depressed (despite my background), and eventually received the diagnosis.

Do y'all think it's important at this stage that I mention the PTSD? I just don't want her to just give me klonopin and pat me on the head. I want her to look past that.

OK- on to looking at the video. Thanks for the tip!

[Dmom3005]

Honestly in my humble opinion its very important to mention the PTSD to her.

For one thing you have to trust her to know the difference. Explain to her that you have waited till you were sure she would understand the difference.
And that you are taking a small chance she wont still, but feel she will.

It really is possible all the things that you listed that the PTSD are connected with, are connected with the pcs too. They are all pretty much with me.

Mine has been going on this time for about 1 1/2 years. Its been since August of 2006. Ironically I fell off a bench and hit a dresser. Didn't as
far as I know knock myself out. But had the paramedics called, refused
to go to the hospital. But had the syndrome diagnosed the next day.

Its been a long road, and at times all the symptoms come back full force.
I'm struggling with other health issues, and right now I have a new one
that is making it hard to get the symptoms to leave.

Donna

[RisibleGirl]

Thank you for your comments and opinion.

I will mention it to her. I think she can tell that I'm not an emotional wreck and am (prior to this) a fully capable, functioning member of society. I'm a VP at my firm and the manager of education and awareness for Information Security. I wouldn't be where I am if I was one to roll over and play dead. :p

I guess I'd better prepare my 'speech' :)

Thank you again :hug:

[Dmom3005]

You will do fine.

I have to admit, it takes lots of guts to tell anyone all your problems.

But its better than just letting them wonder or guess.

I have been upfront with my doctors. And they wouldn't be on my team
anymore if they weren't willing to listen.

And they didn't understand were I come from
Donna

[froglady]

RisibleGirl, are you able to talk with intelligence for a while and then out of the blue get totally lost and wonder what in the heck you were saying? Now I am 65, so I do get "senior Moments" but what I do now, is NOT the same thing. Totally stopping dead still in the middle of what I'm saying, then not being able to continue the conversation, is not normal for me...even at this age. OH by the way, my poor spelling and puncutaion(sorry really have lost this one) is quite normal for me..Ha, I did this before. At least some things have remained the same. Gaye

[jeffn]

Lori Thanks for sharing.

I think after you watch the video by Dr. Scaer it will give you a clearer understanding of what it mean to be Traumatized [ PTSD] and how the body and brain become frozen in the traumtic experience. The brain is doing what it is hard wired to do, and that is to keep us alive.

My brain could not handle the traumatic experience of hitting a truck at 35 MPH with my head or the pain of being bruised internally from the top of my head to my feet. I was black and blue inside and all my injuries were invisible.
I looked ok and was released from the hospital in 2 hours.

I still have no conscious memory of the collision. My last thoughts were before the collision what I'm I going to have for dinner [bang] and after the collision I was making a left hand turn two lights up from where the accident happen.

If you review the polar bear experiment, in Dr Scaer report, this is where my mind took me. I had to read the police report to find out the location of the accident, and that was a shocking discovery for me. In my mind I was making a left hand turn two lights up and I thought that is where the collision happened. I only know what happened to me from reading the police report but to this day I have no memory of the accident. This is my brain protecting me from the trauma.

Dr. Scaer talks about the amygada in his report, the fight or flee response of the brain when we are presented with a dangerous or life treating experience. Do we fight it or run away. The amygdada also produces the emotion of fear and if your traumatized you are experiencing the fear of the trauma. The problem as I understand it is if we are traumatized we become frozen internally in that fear. My brain is stuck at the accident 4 years ago and that is how I response to outside stimuli at times.

When people come up to me on my left side in my blind spot, that was the side that was hurt I freak and my response is to fight or I feel myself in state of shock. I ask people that I'm close to not to do this and explain to them why my reaction are the way they are, it is because the brain has not gone through the healing process from the trauma.

In regards to talking to your Neurologist about your PTSD I would follow my gut on this one and I would ask myself is this person committed to my health and well being and let your intuition be your guild. You'll know inside if this is the right person and the right time to talk about this issue.

A word of caution be very very careful many people here who have had concussions re injure them selfs, myself include. This is something I do not understand but is does happen.

Lori I am not a Doctor or a Neurologist or a Phd. I am a very simple man trying to heal my brain from some damage caused by a trauma and all I can do is share my experience.

I hope this helps and I believe you will over come.

Take Care and enjoy a good cup of coffee. I like Pete's from the PCC. Jeffn:)

[RisibleGirl]

You asked me if I'm able to talk with intelligence for a while and then out of the blue get totally lost and wonder what in the heck I was saying.

Yes, and this is almost more frustrating than the jerking around and bad typing.

I attend lots of meetings for my job and it's horrifying to me that my brain suddenly quits working mid sentence. I'm 'supposed' to know what I'm talking about and am considered a subject matter expert. I feel like I'm losing credibility. :(

Well, I see my Neurologist in a bit and this is certainly on my list of things to talk to her about.

I feel like I'm not only losing my credibility- I'm losing myself.

[RisibleGirl]

That's a very good synopsis, thank you!

So interesting how things decades ago can still be so permanently embedded in our brains, isn't it?

I've *always* had a problem with people 'sneaking' up on me, or seeing things out of the corner of my eye that I wasn't expecting.
Only before the concussion, I'd just kind of scream (you know the sound you make when you're surprised) and my arms would fly up. Now, my entire body goes into spasms.

My worst reactions are when someone wakes me during the night. I literally scream and completely freak out and it takes a long time to calm me down. I can totally see where all of this comes from based on the synopsis you gave, when you consider where the PTSD comes from.

Sadly, now on top of that, loud sounds and flashing lights give me that horrible reaction. Even when I drop things, I have that reaction sometimes. I guess it's just the entire element of surprise that gets to me now.

I never thought I'd wish to be back to the old PTSD reactions, but man- they were so slight compared to this.

I so appreciate all of the information. It was really helpful for me to read how this affects you. :grouphug:

And yes, I'm now enjoying a wonderful cup of coffee brewed in my home espresso machine (MUCH better than anything I can get at SB's!)

~Lori

[jeffn]

Lori hope this informations helped as there are alot of people in the same boat.

Take Care Jeffn:)

[Lucy]

Lori,

sorry I haven't replied to you from the 19th November, don't think that I can just go burble and will have to think about what to say - thinking too hard is a real brain strain headache - automatic pilot is ok. I think I will tell you about "if only I knew then what I know now!" Am away for the weekend and will come back to you next week.

Jeffn - how is that book going??

Lynlee

[pono]

sorry for the reasons but glad you [all] have found this forum and are sharing so much. Unless you've experienced it, seems can't really understand --referring to family, friends, med pros, etc. ( I don't most of the time!!) this group provides needed support, insights, info. and more....

I haven't been online in awhile and trying to catch up w/ posts here.... I've been going thru another "down" phase-- affects of my TBI's & PCS.
I also have lots of "neuro" problems; began w/ my first "big" TBI, 12 yrs ago when I was hit by a car as a pedestrian. tho not as bad still have bouts of PTSD.

Last Dec. had another TBi when I was struck in head by malfunctioning hydrulic lift on wheelchair van. Since that one, additional "smaller" head injuries & concussions, mostly from falls.

I'm still bothered by noise & bright lite, & other things but not as badly.
I lose thoughts & words too.... it's very frustrating....

I have other "cogntive" problems and also emotional--very volitile...

there's more .... sleep problems, constant headaches, & other chronic pain and more....
I'm getting confused now... but will try to write & read more soon....

wishing all the Best...

[jeffn]

TO LYNLEE. I haven't been on line for a few days because my lap top was stolen on 11.20.07 [ Bummer]

The Book Getting Started with Neurofeedback by John N. Demos is very good a must read if your thinking about using this type of treatment. Starting my third read on this material and learning the technical langauge and what part of the brain need to be re built.

Dave Strand is making a great deal of progress in this therapy. Haven't been to his Blog lately but theres a great deal of information coming on line and I think this maybe the solution to the problem TBI/PCS.

Have an appointment with my PCP on the 3rd and a 3 page outline on the symptoms that the TBI/PCS are causing. Hope to use this information as part of the assessment process.

Hope to start neurofeedback therapy after the 1st of the year.Still in the process of putting together a master mind group for this work, the equipment and the plan.

In regards to Chronic Fatigue it looks like this is being caused by a sleep disorder caused by the TBI this came up in my symptom list as I only get 5 hours of sleep at a time and this has been going on for 4 years.

Did you find a pink bike helmet :winky:

Take Care Jeffn

[jeffn]

TO LYNLEE. I haven't been on line for a few days because my lap top was stolen on 11.20.07 [ Bummer]

The Book Getting Started with Neurofeedback by John N. Demos is very good a must read if your thinking about using this type of treatment. Starting my third read on this material and learning the technical langauge and what part of the brain need to be re built.

Dave Strand is making a great deal of progress in this therapy. Haven't been to his Blog lately but theres a great deal of information coming on line and I think this maybe the solution to the problem TBI/PCS.

Have an appointment with my PCP on the 3rd and a 3 page outline on the symptoms that the TBI/PCS are causing. Hope to use this information as part of the assessment process.

Hope to start neurofeedback therapy after the 1st of the year.Still in the process of putting together a master mind group for this work, the equipment and the plan.

In regards to Chronic Fatigue it looks like this is being caused by a sleep disorder caused by the TBI this came up in my symptom list as I only get 5 hours of sleep at a time and this has been going on for 4 years.

Did you find a pink bike helmet :winky:

Take Care Jeffn