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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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06-11-2014, 01:18 PM | #31 | |||
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"Thanks for this!" says: | SarahSmile0205 (06-11-2014) |
06-11-2014, 02:00 PM | #32 | ||
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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 |
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"Thanks for this!" says: | SarahSmile0205 (06-11-2014) |
06-11-2014, 02:38 PM | #33 | |||
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I am sorry to ask but what is HRT... I should probably know... how did you get tested? who did it?
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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 |
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06-11-2014, 04:35 PM | #34 | ||
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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 |
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"Thanks for this!" says: | AlmaVera (11-06-2015), Hockey (06-11-2014), MomWriterStudent (06-11-2014), poetrymom (06-13-2014), thorx89 (08-25-2014) |
06-11-2014, 04:49 PM | #35 | |||
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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)
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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 |
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06-11-2014, 04:53 PM | #36 | ||
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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. |
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"Thanks for this!" says: | Hockey (06-11-2014), SarahSmile0205 (06-11-2014) |
06-11-2014, 04:57 PM | #37 | ||
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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!) |
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"Thanks for this!" says: | MomWriterStudent (06-11-2014), SarahSmile0205 (06-11-2014) |
06-11-2014, 05:04 PM | #38 | ||
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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)." |
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"Thanks for this!" says: | SarahSmile0205 (06-11-2014) |
06-11-2014, 05:06 PM | #39 | |||
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"Thanks for this!" says: | Anderson67 (09-02-2014), SarahSmile0205 (06-11-2014) |
06-11-2014, 05:09 PM | #40 | ||
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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... |
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"Thanks for this!" says: | SarahSmile0205 (06-11-2014) |
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