Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


advertisement
Reply
 
Thread Tools Display Modes
Old 06-11-2014, 01:18 PM #31
Hockey's Avatar
Hockey Hockey is offline
Magnate
 
Join Date: Jun 2009
Location: I know it's somewhere around here...
Posts: 2,032
15 yr Member
Hockey Hockey is offline
Magnate
Hockey's Avatar
 
Join Date: Jun 2009
Location: I know it's somewhere around here...
Posts: 2,032
15 yr Member
Default

Quote:
Originally Posted by EsthersDoll View Post
I'm one of those overachieving types too... which is why I continued to read and research until I found out about the hormones and pursued it until I received the testing.

It took me 3 years to get to that point of getting the testing and I'm coming close to the 4th anniversary of the date of the accident.

I remember the first neuro I saw kept telling me I was going to get 100% all back to normal in 2 weeks... then 4 more weeks... then 6 more weeks... and then couldn't understand why I still wasn't all better after 5 months... which is why I found another neuro who would take my case seriously.

Now I'm getting so much better than I was before the HRT that my Dr.'s (all except the endo treating me) are pleasantly shocked. I suspect that they were starting to think that my severe deficits and debilitating impairments were going to be permanent...

Every case is different and they say that the Type A personalities are hit harder by this kind of injury - but I suspect we tend to persevere better than the other personality types do.

I also could literally not see traffic in intersections, next to the car I was a passenger in or process even the speed of the traffic.

Now, I can drive on the freeway again, in short trips, by myself. It took me 3+ years and hormone replacement therapy to get there.

The hypopituitarism caused by concussion is the latest and greatest research concerning mTBI... but you never know what they are going to learn in the next couple of years.

I say never give up hope, do the best you can, and it gets easier as time moves on.
Are there symptoms, or symptoms that might be more pronounced, if hypopituitarism is in play after a mTBI?
Hockey is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SarahSmile0205 (06-11-2014)

advertisement
Old 06-11-2014, 02:00 PM #32
allday310 allday310 is offline
Junior Member
 
Join Date: May 2014
Posts: 62
10 yr Member
allday310 allday310 is offline
Junior Member
 
Join Date: May 2014
Posts: 62
10 yr Member
Default

Quote:
Originally Posted by SarahSmile0205 View Post
So does this mean that for the rest of my life when I overwork myself or my head I will get brain fog and with brain fog I can not drive... it is very scary.. I can not see or understand intersections...
Like Hockey said everyone heals differently. No one knows but the Man above. All i was saying is adding to the fact we are not crazy and the reason why there is no wonder pill or really anything so far that we lean to say yes we will heal 100% like brand new, better than we were prior to injury is because of the reason i specified. Athletes get torn ligaments and whatnot but some can become "better than before." There is still plenty of research left to do and possibly what im saying now can be outdated sometime in the future, but for now this is a fact. You CAN heal, just dont set unrealistic goals and predictions. I do not want to scare you because i honestly am a bit afraid myself, and id be lying if i said otherwise.

This is/has been my biggest fault and i am trying my best to let it go and gain back control of things i actually can control. I can sit here an type on and on everything i know but no one wants to read that. Plus i need to have cognitive rest so after my final that is what i must do. I will try to relax and have some faith
allday310 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SarahSmile0205 (06-11-2014)
Old 06-11-2014, 02:38 PM #33
SarahSmile0205's Avatar
SarahSmile0205 SarahSmile0205 is offline
Member
 
Join Date: Mar 2014
Location: Carmel, IN
Posts: 467
10 yr Member
SarahSmile0205 SarahSmile0205 is offline
Member
SarahSmile0205's Avatar
 
Join Date: Mar 2014
Location: Carmel, IN
Posts: 467
10 yr Member
Default

Quote:
Originally Posted by EsthersDoll View Post

Now I'm getting so much better than I was before the HRT that my Dr.'s (all except the endo treating me) are pleasantly shocked. I suspect that they were starting to think that my severe deficits and debilitating impairments were going to be permanent...

I also could literally not see traffic in intersections, next to the car I was a passenger in or process even the speed of the traffic.

Now, I can drive on the freeway again, in short trips, by myself. It took me 3+ years and hormone replacement therapy to get there.

The hypopituitarism caused by concussion is the latest and greatest research concerning mTBI... but you never know what they are going to learn in the next couple of years.

I say never give up hope, do the best you can, and it gets easier as time moves on.
Thank You!

I am sorry to ask but what is HRT... I should probably know... how did you get tested? who did it?
__________________
The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
SarahSmile0205 is offline   Reply With QuoteReply With Quote
Old 06-11-2014, 04:35 PM #34
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
Default

I'm sorry you guys - I tend to post so much about it that I assume others know what I'm talking about. I've put many links about this in the stickies at the top... I recommend that every single PCS and/or TBI patient get their hormones tested ASAP.

HRT is hormone replacement therapy.

I was very determined to get better and I could not understand why I wasn't getting better after the concussion.

What I learned from research conducted by the Defense Center of Excellence (DCOE) and other research groups is that even a single concussion can cause one or more neuroendocrine problems from damage to the hypothalamus, pituitary gland or the pituitary stalk that connects them.

The pituitary gland provides us all with hormones throughout the day that we need in order to function cognitively and physically. It is sometimes referred to as the master gland. When hypopituitarism is caused by a concussion then a patient will not heal... they will not recover... their prognosis turns from good to fair to poor.

The medical community has known about this condition for over 100 years, but they thought it was VERY RARE. The latest research has indicated that it's not that rare at all and could be what PCS is altogether.
Some experts believe that PCS is a neuroendocrine disorder. And that it resolves itself in some patients within the first few weeks up to a year. And some patients's cases do not resolve themselves at all which necessitates HRT.

This is the latest research about it. Many Dr.'s aren't familiar with it and aren't familiar with the levels tested to indicate whether further testing is needed or what levels require treatment.

Once a PCS patient is diagnosed with hypopituitarism and they receive HRT, then their prognosis improves significantly. It takes about a year of HRT to reap the full benefits cognitively and physically but I have met other hypopit patients online who continued to improve after a year's time.

Some of the terms used for this condition are:

hypopituitarism
post traumatic hypopituitarism
neuroendocrine dysfunction
hormone imbalance

The symptoms for each PCS and Hypopituitarism overlap a great deal. The only way to know if a tbi patient is suffering from hypopituitarism is if their hormone levels are tested. TBI patients have different levels to indicate further testing or treatment than the "healthy" population and most Dr.'s aren't aware of that.

I had to see several endocrinologists in order to just receive the testing because three of them weren't familiar with it enough to order the testing and/or didn't agree that this could have been my problem.

My neurologist told me it was "impossible" and one endocrinologist I saw told me that hormones have nothing to do with cognitive functioning. My neuro has since told others that she sometimes learns from her patients (pointing to me) and the endo I saw who refused to even consider that might be my problem - well, I hope he's retiring soon....

http://www.dcoe.mil/content/navigati...mendations.pdf

http://www.dcoe.mil/content/Navigati...ing_Slides.pdf

http://www.dcoe.mil/content/Navigati...rence_Card.pdf
EsthersDoll is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AlmaVera (11-06-2015), Hockey (06-11-2014), MomWriterStudent (06-11-2014), poetrymom (06-13-2014), thorx89 (08-25-2014)
Old 06-11-2014, 04:49 PM #35
SarahSmile0205's Avatar
SarahSmile0205 SarahSmile0205 is offline
Member
 
Join Date: Mar 2014
Location: Carmel, IN
Posts: 467
10 yr Member
SarahSmile0205 SarahSmile0205 is offline
Member
SarahSmile0205's Avatar
 
Join Date: Mar 2014
Location: Carmel, IN
Posts: 467
10 yr Member
Default

Thank you for posting this... unfortunately i can not understand this and have sent it to my mom for translation... she has by default become my patient advocate... she retired from oncology so she understands a lot... she comes up 900 miles to go to my neuro apts... (yes, she is the best mom to her 38 year old baby)
__________________
The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
SarahSmile0205 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
EsthersDoll (06-11-2014), Hockey (06-11-2014), poetrymom (06-13-2014)
Old 06-11-2014, 04:53 PM #36
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
Default

Page 14 of the DCOE slides in the link above list the Overlap of Symptoms (which looks really good) and here they are typed out.

PCS = Post Concussion Syndrome

NED = Neuroendocrine Dysfunction

PCS
Headaches*
Dizziness*
Blurred Vision*
Sleep Disturbance*
Sensitivity to Light/Noise*
Balance Problems*
Memory Deficits*
Slowed Processing*
Impaired Judgment*
Altered Executive Function*
Agitation*
Impulsivity*
Agression

Both
Fatigue*
Poor Memory*
Anxiety*
Depression*
Weight Gain*/
Weight Loss
Emotional Lability*
Lack of Concentration*
Attention Difficulties*

NED
Loss of Libido*
Infertility
Amenorrhea
Loss of Muscle Mass*
Increased Belly Body Fat*
Low Blood Pressure
Reduced Heart Rate
Hair Loss*
Anemia
Constipation*
Cold Intolerance*
Dry Skin*


*These are symptoms that I have personally experienced an improvement or a near-complete recovery from since I started the HRT.

Some of the charts you will find online about this issue that compare the two conditions and the overlap of symptoms will include more of the symptoms found on this particular chart under PCS under both.

And on some of the lists, you will find more symptoms and even more specific symptoms.
EsthersDoll is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Hockey (06-11-2014), SarahSmile0205 (06-11-2014)
Old 06-11-2014, 04:57 PM #37
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
Default

Anyone is more than welcome to PM me about this stuff. And I'd be more than happy to PM anyone's patient advocate and/or family members about this too.

The links I have provided in this thread are probably some of the most layman-friendly in terms of comprehension.

I, myself, had to read and learn a great deal about related subjects in order to interpret even more complex medical research publications, some of which I still don't understand.

This stuff is super complex and that is why Dr.'s get paid the big bucks. (I just wish more of them were more current with the latest research in their practices!)
EsthersDoll is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
MomWriterStudent (06-11-2014), SarahSmile0205 (06-11-2014)
Old 06-11-2014, 05:04 PM #38
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
Default

Here's a new article I found that indicates patients who don't recover from PCS after only 3 months need to get their hormones tested:

http://nurse-practitioners-and-physi...-Symptoms.aspx

Up until I read this just a few minutes ago, I was under the impression from other reading that patients should wait a year. This is a boon and will help people receive treatment sooner.

"New guidelines on neuroendocrine dysfunction (NED) were released in August 2012 by the Defense Centers of Excellence. NED can occur as a result of trauma to the underlying structures in the brain. The anterior pituitary gland is the most susceptible area. The disorder can mimic symptoms of mTBI or PTSD, producing sleep disturbances, fatigue, memory and concentration issues, and emotional or mood disturbances.

If a patient experiences the above symptoms for more than 3 months or has a new onset of these symptoms up to 36 months after a concussion, he or she would benefit from NED screening (Table 3)."
EsthersDoll is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SarahSmile0205 (06-11-2014)
Old 06-11-2014, 05:06 PM #39
Hockey's Avatar
Hockey Hockey is offline
Magnate
 
Join Date: Jun 2009
Location: I know it's somewhere around here...
Posts: 2,032
15 yr Member
Hockey Hockey is offline
Magnate
Hockey's Avatar
 
Join Date: Jun 2009
Location: I know it's somewhere around here...
Posts: 2,032
15 yr Member
Default

Quote:
Originally Posted by EsthersDoll View Post
Anyone is more than welcome to PM me about this stuff. And I'd be more than happy to PM anyone's patient advocate and/or family members about this too.

The links I have provided in this thread are probably some of the most layman-friendly in terms of comprehension.

I, myself, had to read and learn a great deal about related subjects in order to interpret even more complex medical research publications, some of which I still don't understand.

This stuff is super complex and that is why Dr.'s get paid the big bucks. (I just wish more of them were more current with the latest research in their practices!)
Thanks so, so much for this. With all the damage I sustained, it's hard to imagine I was spared this. Now, if (BIG IF) I can find a doctor who will listen.
Hockey is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anderson67 (09-02-2014), SarahSmile0205 (06-11-2014)
Old 06-11-2014, 05:09 PM #40
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
EsthersDoll EsthersDoll is offline
Member
 
Join Date: Feb 2011
Location: Los Angeles
Posts: 765
10 yr Member
Default

Quote:
Originally Posted by Hockey View Post
Thanks so, so much for this. With all the damage I sustained, it's hard to imagine I was spared this. Now, if (BIG IF) I can find a doctor who will listen.
I agree. If you can afford it, I recommend my endo in Los Angeles. He has a lot of experience with this sort of thing and is primarily a researcher and professor at UCLA.

www.goodhormonehealth.com

BUT, you may still be able to find someone in your area who might take this seriously... your chances of getting NED increase with multiple concussions and severity of tbi.

By the by - this is probably what is causing our athletes so much trouble after concussion as well... or at least it's a part of it...
EsthersDoll is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SarahSmile0205 (06-11-2014)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Never out of our minds... Alffe Survivors of Suicide 0 06-25-2012 09:17 PM
Fun to keep our minds occupied :) Kheldar Reflex Sympathetic Dystrophy (RSD and CRPS) 7 02-10-2012 12:06 AM
I hope no one minds Dmom3005 Bipolar Disorder 12 06-05-2007 08:57 PM


All times are GMT -5. The time now is 06:12 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.