I was happy to find this Forum for Traumatic Brain Injury & Post Concussive syndromes. but surprised --
thought would be more activity, that this forum would be buzzing w/ questions, stories, sharing, support, info.

I'm trying to learn all i can about TBI & PCS
and overlapping conditions
as well as other disorders & challenges in my life

there are so many dimensions,faces of TBI
and the affects of PCS..
for me, the physical, tangible aspects are easier to deal w/
than the cognitive issues -- in their various manifestations
I can't elaborate w/out getting lost in process,
as I get lost in the processes of daily life
feeling sabatogued by my brain
wondering why can't I THINK?? talk?? write?? **
frustrating, confusing, exhausting...
hope for more... and better
ways to deal w/ my brain & problems w/ thinking, memory, problem solving,
and issues connected to TBI & PCS

**"brain damage" --excuse or justification --

I'm losing my thoughts & words--again...


hope to see more in this forum
as well as other relevant areas

Hi Pono

yes, this particular forum for TBI and PCS is just a week or so old, and so will take a few more members posting regularly to get some more activity.

So sorry that you are going through all this Pono...I can only imagine how hard it must be for you.

I did post some links to earlier discussions on PCS up above here on the useful sites sticky thread, so not sure if you have read thru those. They have some very valuable information and experience sharing on them. http://neurotalk.psychcentral.com/sh...ad.php?t=19462

Do stay with us Pono
More will start posting soon

I hope you will find info here to help you as well as the support you need from others who understand what you are going through

Hi Pono,
good to meet you.
There are a number of people scattered around the forums here. This forum is brand new. Hopefully people will find it and start posting here. I have had a post concussion syndrome for a couple of years although I was told it's not supposed to last that long. LOL Call me a cynic but that's not the impression I'm getting. I'm doing pretty well this past month. A lot of my symptoms have got a lot better all of a sudden.
Very tired here and I have to go, but just wanted to respond to your message.
Talk later,
Lara

Hi Pono,

Sorry to hear that you are feeling bad. You're not alone. I had a concussion about 8 months ago whilst doing sport. I went back to training after about 10 days because I felt fine and the doctor gave me the all clear but then a few months later I started feeling very tired and started getting headaches all of a sudden. I had an MRI scan done and that came out as fine and was diagnosed with PCS. Since then I have been needing much more sleep than normal, got poor concentration and now that it's been so long, I'm getting fed up with it all. Some days I feel so tired that it's hard to get up and do anything useful at all which makes life depressing because I can't go out and see friends, work or otherwise enjoy myself. There are days when I do feel more awake and that gives me hope that it will end sometime but then I get a bad day again and it's like it's all starting again.

Has anyone recovered from PCS? What is your story and how long did it take?

Hi All,
Glad to see some more activity on this site. There were alot more posts a few months ago when the weather was worse. I hope you all get much better soon. My son has PCS, the heat seems to fatigue him alot lately. He really has a limited amount of mental stamina and gets a strained look on his face. He seems to be suffering with irritability with the whole thing. Lazar, I am happy to hear you have had a sudden change fot the better. Although I do not personally have PCS, I feel the pain and frustration and wish my son did not have to suffer with such a bizarre, unpredictable and difficult to describe clustering of symptoms. I feel now that he is getting better but so fragile and vulnerable to relapse. I too wish we could hear from past victims who are doing well to give us all hope. Hope you all have a good week and "hang in there" and keep plugging at it . I do feel time will heal.
Nancy

glad to see more activity also sorry for the reason ya' all are here--
personally struggling or watching loved one suffer. Hard to feel hopeful
when at the affect, & outcome is so questionable , as is sequelae.

Yes it would be good to hear from others who are doing well
I've been reading the scattered Posts & responses here.
Thanks to all for the support.

I composed a detailed Post earlier -a major accomplishment-then Lost
now can't recall what .....

reply to question: what's My Story...
I've had several concussions; wonder about repetitive head trauma.
I've just not felt "right" since last injury 6 mths. ago struck in head by hydraulic lift on wheelchair van. knocked down & out for several minutes. strange accident happened at hospital (had taken my father to ER)
... under circumstances, I chose not to seek treatmt then. didn't think I needed stitches for laceration; big lump & headache, w/ nausea after.
two days later woke w/ excruciating headache, blurred vision, vomiting,
and more . went to ER, tests showed no brain bleed. Injection helped headache & pain, but returned & has remained w/ nausea, photophobia,
& other sensitivities esp to sound/noise, smells.
I couldn't sleep at nite, exacerbated the fatigue & weakness. and
"emotions" -irritable, anxious, depressed, confused... felt I'd lost myself.
cognitive dysfunctions --memory, thinking, and doing , etc...
began to sleep at nite, w/ meds, but wake often; feel tired & sleepy and
retreat to bedroom often to rest but also feelings of overwhelm. Hard to be around people & stimulation . so much more that is hard, to describe and contend with. For me the biggest challenge is maintaining as primary Caregiver for my terminally ill father. I live w/ him, struggling to tend to his needs but not able to keep up w/ other responsibilities in home. Do have aide 9 hrs week , but ..... don't know what's going to happen.

Pray for best outcome, for all.....

Pono,
Thanks for story. I imagine the stress of primary caregiver never gave you much rest time. We need to get more prayer and spiritual thinking in our recovery process. I think that kind of energy may be more effective than anything else in this injury. My son also is not very comfortable in a very social environment. He does not want alot of attention to him and gets anxsious. You are organizing yourself and being more articulate than you think. Describing how you are experiencing life with your brain injury is very difficult and one of the biggest problems for patient's. Sam, my son, hates to answer any questions I have in regard to how he is feeling. We will keep site posted on our recovery and any helpful advise we get. Tomm. we go to neurpsychologist and next Monday his neurologist. Both are PCS specialists. Rest up and try to keep positive.

thanks to all, for support & info.

wish more to say..
wonder if others don't post (more) because of problems expressing--
what's going on
or don't Know --reference to son (Nancy's???) -who didn't know had headache! How to express intangibles ??? or even want to, fears of being labled "crazy' --tho that's how it feels, IS

"The Hidden Epidemic" -- film about depression, suicide & PCS
-sorry lost the thought--just now news story about murder/suicide; a mother who killed self & daughters in TX(?) reported to have been "depressed" -- when does Depression become more-- danger to self & others?? what to do to illuminate the Hidden, before tragedy.
(this is as much as I can connect these as my thinking fogs, fades.....)
confusing, illustration of distraction --and sensitivy to sound--Tv is not near. even birds distract.... where was I going???

too often thoughts with intention of saying something.... then.... lose
intent .... seeking words, ways... even here, feel should apolgize... or not post

I want to contribute someting , more, than confused ramblings...
than "whine" to others (many posts deleted)
Sharing has benefits but how to connect w/ others when feel so at affect of so many things
I read posts (here & in other Forums)
wish I could add Links that are helpful as so many do, but I can't figure it out; I'm having problems using computer

I wanted to ask what other's have tried for fatigue; and reference info. from Forum: Vitamins, supplements, herbs & Minerals --Re: Methyl B12
this info. may help others. I began to use Methyl B12 week ago-no marked improvement yet but others report success -don't know if had TBi or PCS but state did help other neuro & cognitive issues. Label states:"this superior form of B12 -Methylcobalamin protects Brain cells & Nerve tissues, & promotes Better Sleep" ....lots more in Forum on Vitamins...

link that was posted by ??Lara? RE: conditions that can occur after TBi
read article (tho don't recall many details now) could summarize please?? or share thoughts? result of TBi or "pre-dispositon"--
know disorders like Thyroid can create body wide dysfunction; prblems w/
memory, fatigue, sleep & more...
what other conditions that are Not typically associated w/ TBi or PCS

my head's spinning... hope something clear in my ramblings, that can help or will create dialogue for answers.... so many questions...

again, thanks

ps.. RE: alternatives or things that may help --has anyone tried? results??
Neurofeedback or any Biofeedback
5_HTP - supplement -heard it's been helpful in "treatment resistant depression" and other conditions
Herbs--Ginko or others for brain function, or just symtomatic relief
Aromatherapy--Lavendar (I found does help headaches) others can added to enhance, again per symptom-
too much to list here; lots of info. on internet, books , detailing suggested use.
Traditional Chinese Medicine--more "wholistic" in vew & treatment. I'm looking into this, esp. Medical QiGong

I've not been able to tolerate most meds ( antidepressants, anticonvulsives, etc) that are usually given to treat many of the symptoms of PCS & related conditions. Heard increased sensitivity to meds does occur w/ PCS
which has made treating PCS symtoms more challenging for me. sure they're many things haven't tried yet.

I know we're all different but wonder what others have done or are doing for PCS

Pono,
Good post, it makes it clear the frustration and effort in regard to keeping thoughts connected. The fact that you are motivated and care is so great and will help you improve. My son has been taking Mellatonin for sleep. He taked 2 pills 6mg and is now weaning to 1.5 pills. This has helped him alot and it is natural to body. No harm in trying. Your blog attempts are cognitive rehab. Time and staying calm and determined to get well will help you. My son gets very upset and angry at times and this is not good. The frustration with communication makes him explosive when he rarely trys to articulate how he is feeling. He did very well on his last IMPACT test and it is showing his improvement. He is pretty emotional now because he is afraid to move forward and do more schoolwork. Good news and feeling good one day and explosive and sad the next. I know tomm. will get better, it is just sometimes hard to always be positive when he is so unpredictable.
Keep putting your feet forward, you are inspiring.
Nancy

Nancy,
Good to hear your son is showing progress. the emotional volaltility is understandable but how difficult...
Bless you for being such a good mom & advocate. often wish I had -both!
thanks much for your support & understanding. at a time when I understnd little. Your ability to read thru and give name & value to this process as cognitive rehab.
writing take so much time & energy; anxiety & other emotions exacerbate
My feelings of failure growing--in home, as Caregiver & beyond. Failure to find treatmts, meds that help -PCS, pain & neuro disorders.
My issues may be small compare to more severe TBi & other conditions but big enough to challenge & compromise--my life & those depending on me.

Despite "disabilites" from MVA years ago, took care of parents, responsibilites--until this last "mild" injury. WHY major dysfunction now? had other head injuries, concussions --recovered. but now barely functional -PCS & other neuro stuff worse w/ meds for pain, depression {allergic to most-may be more can try-other treatmts, alternatives.... but in meantime.... more questions than anwers....
pray for best outcome for all