Space cadet, I too am concerned sometimes when dealing with people\medical professionals, that I come off as too normal so how can there be a significant problem going on here? I have periods of rage\frustration that I try to vent in private. I have been told I have a good logical understanding of what I am facing and dealing with; however this comes off as normal to anyone who doesn’t know or doesn’t care to understand you have a brain injury. I sometimes fell like saying I suffered a brain injury but it didn’t make me stupid or I didn’t lose my common sense. I believed at first, the concussion I had was just that, and would resolve in a few weeks of the accident. This has not been the case and dealing with my employer and insurance co has been more than challenging. My employer will not offer reasonable accommodations as outlined by the neuropsyc doc. The insurance companies are trying every tactic they can to minimize the situation. The only bright spot is that the accident was clearly not my fault and that fact cannot be disputed. I wish you well in your recovery. It sounds like you and eown are enrolled in some sort of rehabilitation program? Is this something offered to you in your area or how did you learn about it. Is it helping?

Frankly just taking meds and waiting it out doesn’t seem to make a lot of sense to me at this stage since I did undergo testing which showed deficits that validate a closed head injury; however there doesn’t seem to be any other alternatives other than meds\and figuring things out on your own to find new ways to cope with the challenges.
I would assume that this is the same with most other TBI, but do you have problems sleeping getting to sleep or staying a sleep?

Hi jinga,

Have you talked with your PCP or Neuro about getting some speech therapy? Or going to see a therapist? Either of those treatments, or both, might help you to improve.

A lot of people have trouble falling asleep and staying asleep when recovering from a tbi. I'm one of them. There are a lot of pointers out there you can find by googling something like "how to get a good night's sleep".

Off the top of my head, I recall a few tips:

-Waking up at the same time every day will help.
-Exercise should help.
-Not doing anything but sleeping and having sex in your bed and bedroom is supposed to help too.
-Meditation is supposed to help.
-Not doing anything super stimulating right before going to bed, like watching a suspense thriller is recommended.
-Don't drink caffeine after 12p or 2p as YMMV.
-Getting out of bed and doing something else when you have insomnia is a good idea. ie: Don't lay in bed for hours when trying to go to sleep. ie: Try to fall asleep for 30 minutes and then go read (or sit) in your living room for a while if you have trouble falling asleep, and then go try to fall asleep again.

Also, I don't have a lot of advice as far as dealing with your insurance company or workplace. My HMO denied giving me any neuropsych testing but approved speech therapy up the wazoo... I hope you have a good attorney - maybe they can help you get the treatments you want/need.

What does YMMV mean?

Some of us are not texters so we do not know these terms.

Google can define some of these but not all.

"Getting out of bed and doing something else when you have insomnia is a good idea. ie: Don't lay in bed for hours when trying to go to sleep. ie: Try to fall asleep for 30 minutes and then go read (or sit) in your living room for a while if you have trouble falling asleep, and then go try to fall asleep again."

I know this last suggestion is common advice (and may be good advice for most people), but for some reason it hasn't worked well for me. My brain seems happier when I stay in bed and eventually (sometimes after quite a while) go back to sleep. Conversely, if I get up and read and then go back to bed after 30 or 60 or 90 mins, I tend to feel worse when I get up in the morning. It's almost as though my brain "knows" that my sleep has been disrupted and responds accordingly.

I now try to stay in bed throughout the night, even if I'm awake for a while here and there. Over time my insomnia has lessened and I'm now sleeping better (although this may be the result of my doing better generally as much as this habit).

Other things that I think have helped: a consistent sleep routine (in bed around 10:15 or 10:30 every night, same time as my partner), dark room, fairly cool temp, quiet (slight background noise from the fridge), comfortable bed.

I did hire an atty recently but not sure yet – I asked if they had experience in TBI etc so we will see. Problem my accident occurred in a distant state from where I live and I had to hire an atty from the state where the accident took place. I also hired a WC atty. I did undergo the neuro cog testing and WC is scheduling me for an IME for the same. My Neuro said it is a good chance to see if things are the same, better or worse. I did have some difficulty speaking in the early months but have improved in that area. I do often lose train of thought entirely and need the person I am talking with to re-establish what point I was trying to make or where I left off in conversation. I also now am afraid to use the stove top as I forget when I am cooking something or even boiling water – 3 x I left items on stove that were burning and once water completely boiled out of pot so now I am only using grill outside or oven which I can set to shut off on a timer. I don’t know if speech therapy would help.
I have constant racing thoughts all night when and medication in higher doses just knocks me out but when I need to go to an appt or work I can’t take the full dose so I am having great difficulties with this. Literally it is like a radio playing in my head with thousands of sound bytes coming at continuously

Dr. Nedley encouraged us to stay in bed and stay still with our eyes closed. Even if you don't feel like you are asleep, you may in fact be able to get some stage 1 sleep in this state and perhaps drift off into deeper stages.

He also provided us with a light-blocking eye mask. I have been using that with earplugs and I do find it harder to tell if I'm awake or asleep in the middle of the night

Also, to help reset your circadian rhythm: get 20 minutes of bright blue light exposure between 5-7 AM (sunlight works or use a blue therapy light if you can't get sunlight). Go to bed between 8-10 PM. If you aren't sleepy by 9 PM after a week of this, add 20 minutes of blue light therapy between 2-4 PM.

Make sure you have adequate levels of vitamin D and calcium. Your brain needs these to produce melatonin.

Another thing that can help is not eating after 3 PM. That also helps your body produce melatonin better throughout the night.

I find exercise really helps, if I can get up and go the gym it really will help with the day however if I'm still slobbing around chances are the headache will intensify and I can basically write the day off.

I've had the PCS for 18 months, has anyone had this for this long and come out the other side ?

YMMV = Your Mileage May Vary

I'm not a texter in any way, just been around the internet for a long time!
Starr

Sorry for the confusion!

FWIW: (For What It's Worth) I gained most acronyms I use from online message boards and forums, like this one, not texting.

YYMV: Your Mileage May Vary: meaning, that what works for some might not exactly work for you... or to a lesser or greater extent

I cannot begin to express how much I can relate to everything you wrote. I am a college student and am expected to do well academically, be involved in campus activities, and have a lively social life as well. Since I seem "too normal" like you said, it is difficult for friends, classmates, and professors to understand the challenges I face every day. It's been 2 1/2 years since my initial head injury, and it's been an uphill battle, especially considering the lack of understanding and knowledge in most people about concussions and PCS. I don't really have any specific advice or encouragement at all, but sometimes it's better to know we're not alone in this.

Laura