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

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Old 06-04-2014, 02:47 AM #1
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Default Still surprised how much emotions fluctuate with PCS

After 18 months I'm still caught off guard when the blues hit. I have my strategies I use to stay out of the doldrums but still end up there eventually.

Trying to figure out a concise formula for not over doing does not exist for me. Too much one day could work another. Brain fatigue can hit during activities or be very stealth like and slam me later after I think I've done okay.

This formula eludes me and prevents a rhythm to my days. Accepting this has not happened for me yet.

Jace
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*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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"Thanks for this!" says:
RJam (06-06-2014)
Old 06-04-2014, 07:42 AM #2
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Hi Jace,

It is difficult to know when "enough is enough." I still struggle with "pushing too far" sometimes, and pay the price in major headache/ fatigue.

I was given a work around in Neuro rehab, where I set a timer, usually for about 1 1/2 to 2 hours, then work until it goes off and rest, whether I feel I need to or not. Then I resume work. I must confess, I do try to do more sometimes, just to see where I truly am with my fatigue issues, but always pay a price for pushing. Sometimes I just forget to set the darn timer!

I haven't experienced what I consider depression, but I am experiencing a kind of let down because for last 5 months I was doing outpatient rehab 3 times a week, and it was just so nice to be around people who "get me"...not having to explain myself all the time, or just being able to relax because your in a place where there are others who understand what you're going through. Sometimes we'd talk about it, and sometimes it was just a knowing smile or nod of the head.

It is so nice just to have this website and others like you here to keep on going. Like my rehab group, you "get me". Thanks to everyone for taking their time to lift up others and be lifted up by others. Take care, M-i-m
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Old 06-05-2014, 01:19 PM #3
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I know how you feel, but unfortunately, I have no advice.

I hope that things start getting a bit easier on you soon.
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Old 06-05-2014, 02:10 PM #4
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I also know exactly how you feel, brain fatigue hits hard.

I know when I've tried to do too much and always pay for it, wish I was back to my usual 100% and it's hard I'm not, was told will never be back to how I was before 100% (that was upsetting to hear) some days I can accept that but others I just don't, it is tough.

Hang in there..
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Old 06-05-2014, 04:16 PM #5
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It's comforting to be understood. Finally up and going today after a long day Monday.

I'm still searching for that perfect formula!

Jace
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*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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Old 06-05-2014, 07:04 PM #6
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What amazes me is that I can do everything the same as the 5 days prior or 10 when I am feeling great.. and out of nowhere I want nothing to do with people... they make it worse by telling me I am grumpy and that I need to be in a better mood... and I am in a deep depression cycle... I wish I knew how to change this!
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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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Old 06-05-2014, 08:39 PM #7
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I know where all of you are coming from. I went for my check up yesterday. I explained daily headaches are continuing and I still can not move around much and that head movements are out, the vestibular rehab is no go but I have been trying to increase my daily activity. I have gotten in the yard a little. I want to plant flowers but not one comes to visit so whats the use only I will look at them and it is a lot of work for just my own enjoyment.

There is an airshow in town this weekend, we love to go, and I will be disappointing my brother in law not to go. I still don't think they understand how hard it is for me. But to walk from the parking area to the viewing area is almost half a mile alone then to sit in the sun and noise for nine hours and walk back. I just think it is asking for trouble and if I go and have to leave they wont stay and enjoy the rest of the show they will leave too. Better to just stay home and let them go alone.

The doc wants me to see a therapist.....
She said my increasing emotional state may be interfering with my recovery. I cry enough by myself, I don't want to cry to someone else. I get angry faster but still have more restraint than a lot of people I know. I just do not hold my tongue as long as I used to, I speak my mind more often. And I wont let the doctors just push me around I follow up and know what is going on and many do not like an educated patient.

Ok so I am going off on a tangent now but you know Monday I saw the doc who was supposed to check my neck and said nothing was wrong with it. Yet someone else is giving me therapy for muscle spasms...I had asked him then (because he is in the same department) If I could see him in place of one of his colleges. I had had issues with the other doctor and his office plus it was 15 miles closer to home. He had said yes. But after my husband took half a day off work, we paid the copay and insurance will have to pay the visit he said ohhhhhh no I can't see you in his capacity, I don't handle head trauma. and then was amazed when I just looked dumbfounded at him and said well that is why I am here, I specifically asked you if I could last visit and you said yes, what changed. He didn't have an answer for me. We left the office after he said I don't think I can be of any further assistance for you. GRRRRRRRRRRRRRRRrrrrrr.

But I should not be moody angry or sad that I have no idea how to help myself?
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Old 06-06-2014, 11:13 AM #8
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Jace,

I'm also 18 months in and feel the same way. I did three hours of volunteer work I figured would be okay but a week later and i'm still paying for it. I too am looking for that secret formula so if you figure it out let me know!
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Old 06-06-2014, 12:03 PM #9
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to all of you, I think we deserve it and that secret. Lol have a good day.
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