Hoping.. for more...
 

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
:grouphug:

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

When does it end?
 

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?

Hang in there
 

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

hoping...
 

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

My daughter tried biofeedback for her PCS headaches and fatigue, but she found it difficult because it involved intense concentration. She is showing some degree of improvement with 75 mg Effexor (Elavil didn't do it for her) to help with neurogenesis. She had one acupuncture session and the acupuncturist taught her deep breathing (slowly, into the abdomen) and she's been feeling better. She has another acupuncture session scheduled in a few days. I understand your frustration and distress. Keep asking -- something will click for you. My prayers are with you.

Hi all I'm Donna and I just figured out this forum was here.

As some would know I was posting on the post concussion syndrome threads
as they were around. I've been very busy with things doing to my health and
I've not been paying much attention. I had just decided i needed to check and see if anyone had posted on the post concussion threads and needed help.

And to my amazement this was here. I'm not that old of a concussion case and I have my up and down days. So I'm not sure that I'm of much encouragement to you. I've been doing a lot better than in the beginning and
I've been out of PT now since March. I started it in September.

I am having issues with balance and other things, that have to do with things that I've always had problems with and am trying to get help with now too.
And developed asthma and allergies in November, and now have shortness of breath really bad so my health overall is very much effecting my problems.

But I'm hoping soon that things will be better again. I enjoyed my PT and
it was one thing that helped immensely.

Donna

Hi all,
I'm not too sure if this is PCS but I've been unexplainably depressed for the last couple of months to the point that has driven me to do a lot of internet research in the last couple of weeks. I think the source of it for me was a recognition of the loss of self. After my TBI 17yrs ago I don't think knowledge of any of this was around and my rehab just focussed on the physical and cognitive (and not emotional). Like Nancy's son who took some time to realise he had a headache I feel like a it has taken me a long time to realise a lot of my emotional problems were actually there. I've read too of the importance of being allowed to grieve. I've read (and it makes sense to me) that if for whatever reason the grieving doesn't happen it just turns into depression (because the loss and trauma of the event is still real inside the TBIer). I think one of the trickiest parts is that it is incredibly hard for any other person to participate in the grieving process because they can't get inside the other persons head and know what TBI has meant for them (ie. there loss). (On the contrary if someone has lost a relative or any other function of their body we can imagine/empathise with what it is like and at least in part participate in their grieiving process. However if your brain is injured how can another know what it is like to not be you any more. Hence TBI is called the the invisible sickness.) Because immediately after a TBI you are so busy with all the cognitive stuff the grieving doesn't really happen then and it seems can a long time to come out (for me 17yrs!). However when it does as I said before it is important that grieving is permitted (and not scolded, or down-played or treated as self-centredness). What has become very apparent to me is that the breadth of the way TBI affects people is unfathomly big. But these are just the thoughts I have based on my experience of it.
Best wishes to all,
Nigel.

Nigel,
What an excellent post! Yes, what a loss PCS is! For awhile you lose who you are! When you are really ill, you do not even know the degree of your problems and there is so much dirorganization. Part of what was taken away from you when you were ill, was lack of understanding. Your situation was misunderstood back then! I hope that now that you realize this, you can explore these feelings and hopefully you will feel better. You may have a little of what they call post traumatic stress from it. Hopefully more support given to PCS patients will prevent this from happenning. Take care and hope you can feel better!
Nancy

Sadly I can understand but I have found things that work for me
 

Understand, what I have done is make diary to explain my actions to my kids who, like other "normals" (non-TBI's are normals) really have no clue to the internal, unseen damage. I really do understand the ability to not focus enough to get much of anything written, done or to functions. When I had my last TBI clinic manager, he was telling me to turn my diary into a book that MIGHT, might not, help other TBI people. In truth I know nothing about PCS but it probably damage the brain and, to my damaged mind, that means not normal and another form of scrambled brains with no visible signs of damage understood by normals.

Without typing three hundred pages, the diary, to explain what I discovered, created, invented or stumbled into alone, on my own, that made serious improvements in my ability to function. Seven years post diving into the Severe TBI end of the pool, I live alone and work on the diary/book daily. For me, I ignore what other do such as when they eat, sleep and such since my modified brain has its own schedule. Now I wake at 9am and takes a week and caustic caffeine to start my mind, two hour, sometimes three the focus fades and I do things that do nor require a total brain. Then I nap because my mind needs or rather, demands rest with or without sleep. The brain comes back on line about 11PM till 1AM+/-.

What a normal might have written in six months, I have taken six years and I am finally in the last phase of finishing to the point of putting it for others. I personally believe that caregivers (family not medics paid) have as tough or tougher time that we tibbies in many ways and the diary/book explains my actions so other caregivers a clue and reduce their "normal" anger or frustration. For the last year I have largely ignored my body and concentrated on my brain and my mind, two connected but totally different things we TBI people deal with.
At a TBI group meeting last week, I tried to explain how the excercises given to me for walking (I got a amputation of lower left leg too) helped my walking, gate and such but the excercises did more for my mind and cleared out what I think of as a pool of darkness. The balancing excercises took me a little closer to my mind's normal light.
If this makes no sense, it is a first draft of a letter and I NEVER first draft anything with TBI since I have seen my mind lose focus and wander. How I learned to regain focus is too much to type but if you wish, I will send chapters of my diary/book as I do the last rewrite over the next six months.

You write back, if interested and I will not be offended if you do not as I have learned the my mangled mind confuses or angers others far more often that I would ever wish.

Gary Nelson

Gary... so glad you're posting here. . I read & responded to your Intro.
Know you have much to offer & share...

Focus has been & continues to be issue for me --along w/ other things.
I'd Love to hear more about what you've learned in your process.

Pono: A while back you were looking for some information on a couple of treatment methods/substances that you'd heard of. I've had PCS for several years and I've tried a few of these in the past so I thought I'd relay to you what I experienced:

5-HTP: I was on a 5HTP regimen for 6 months or so a short while back, and honestly it didn't do all that much for me (that said, it didn't do anything to hurt me either, which is the nice thing about taking supplements instead of normal medication - there's little if any risk of a negative reaction). Basically, 5-HTP is a seratonin enabling chemical in the body, but it doesn't always result in more seratonin actually entering your brain (so it's not a cure all for depression, and it's not as strong as SSRI medication, which force your brain to use the seratonin it already has for longer than it normally would). Think of 5-HTP as being like molecules of hydrogen and oxygen that you're giving to your brain... if the brain's feeling dehydrated it can take those bits of hydrogen and oxygen and turn them into water, but if the brain doesn't feel thirsty at all it won't turn those molecules into anything (it'll just flush them out of your system). I hope this analogy makes sense. That said, if your brain really wants to make more seratonin but doesn't have the means to do so, taking 5HTP will give it that ability. If you really want to check out a more holistic approach to brain chemistry, there's a company called NeuroScience Laboratories that operates out of Wisconsin, and they have tests that you can do through the mail (I think you need to get one of the tests through a practitioner), where they take fluid samples from you and can map out your brain chemistry through those samples. They then perscribe a regimen of vitamins to balance out your brain chemistry. I've heard rave reviews from some people that have tried their stuff, while other people have no reaction at all, and others have a small reaction that kind of fades away after a while (this is what happened to me). I think I just laid out way too much information here... sorry.

The other supplements you listed are very similar to 5HTP - they may work wonders or they may do nothing at all. Most supplements are no risk/either high reward or no reward, so they're kind of neat to experiment with (under a nutritionist's supervision, that is).

If you're looking for other therapies, you might want to check out light therapy (one kind called Syntonics is often very helpful for this sort of stuff, and I've heard of some people having success with EMDR, though EMDR can often solicit some pretty violent reactions so enter into that carefully). The one therapy that I've done that's made the biggest difference for me is called Cranio-sacral therapy - it's very light and gentle and can bring about PROFOUND changes in your mind and the rest of your body. I've been doing cranio-sacral therapy for about 5 months now, and during those 5 months I've recovered more from my injuries than I did during the 4 years that came before. It doesn't work for everyone, but when it does it can really help things out, so I'd recommend it.

Hopefully this helps.

what's up my t.b.i. is miserable and anoying as hell but I try so here I go Her is how it hapened on june 22 of 01 I was at work and got of at about 2;45 in the after noon I was working in TurlockCA and going to pick up my then wife and son about 3 miles away north on hwy 99 in CA i was in the slow lane geting ready to turn of to go to my Aunt and uncles house wherethey were At. A man goinging southbound in the slow lane also witnesses said he might have droped his cell phone he lost control of his truck unfortunitly he went over three lanes saouthbound the center devider and three lanes with out hiting anyone unfortunitly went right in front of my truck people that saw said I hit his truck between the bed and the cab of his pickuphis truck split in half and landed on the side of the roud ond so did my truck the fire department took the jaws of life to get me out of my truck they got the other man out of his The ambulence said he died instontly didn't even know what hit him. Unfortunly he died and sometimes I wish it was me and not him.
My brain is starting yo hurt so I will say bye. Anybody reading this anwants to pin pals fell free rite back your pal J.Z. or [ J] talk to you later hopfully bye

Rashelle

Sounds like quite a accident, and that you were very lucky to come out alive.

Hoping you can return and tell us what kind of injuries and therapies you have been through.

Donna

Hi all, I let my son use my space last night. His name is J.Z.. Sorry ,I hope I didn't mess you guys up. I should have wrote you a little note to explain before I let him use it. With his TBI, I need to see if he can use this. If he can I'll set him up a page. Sorry again, Rashelle

Hay,thios is J.Z., wats up iI'm back I'll tell you ehat happendedafter the wreck. I got short term memory loss. Ialso got 3 surgeries on my head the docters even took out two pieces of my head and put them undermy skin on my stomich so the swelling in my head go down I was in a coma for 3 and a half months. and in the hospital for 9 months. must go talk to you later.

J.Z. Glad to see ya back. When your mom sets up your own page make sure you or she tells us its you okay. Because I and I'm sure the rest are more than willing to talk to you with either name. We just need to know its you.

I can tell you want to talk and need to also, so I'm here for you.


Rashelle, don't worry, but I'm glad you told us that he is using your name right now so we will know the difference. And so far he has been good at telling us its him.

Donna