@jenniferctbisurvivor

I have sometimes felt suicidal beause of this very thing. I am holding on. So tough to deal with. If a person has not exeriened this that person cannot understand.
Dolly

@jenniferctbisurvivor
Yes! A concussion/physical therapist told me that post-concussion syndrome only last 3-4 months at most. A few relatives have asked why I am STILL not recovered, but they don't know any better. The therapist does vestibular therapy and should know better.

@jenniferctbisurvivor

It's very frustrating. First, everyone is embarrassed when they don't function right.

It's just very cruel and dehumanizing when people say that (knowing you have a TBI), because you can stand, walk, appear "normal".

Some people say it out of pure surprise, because they don't know what else to say. Kind of like when you address someone who had someone close die and people say they don't want to hear one more "I'm so sorry for your loss".

We have had improvements with Neurofeedback. It's noninvasive. Medical program with leads you clip to your ears and stick to your head. It reads your brain activity (like 230 times per second) and sends it back in. Essentially, until your body corrects itself. Some insurances cover it ($200 per session). I was fortunate a lady offered trials for $50 per session. Then I bought the medical equipment ($10K).

@jenniferctbisurvivor
Yes. I’m sorry that you too are having to deal with not only your headaches, which are really more like being smashed in the head with a hammer, than it is any headache I’ve ever experienced, while also dealing with a supposed professional who isn’t taking your pain into consideration. My neurologist sent me back to work even after I explained my headaches, extreme physical and cognitive fatigue. “What? You don’t want to work because you have headaches?” In a very condescending manner. I managed two 9 hour shifts as an automotive technician before I couldn’t speak because my brain just shut down. So embarrassing and frightening all at the same time. I’m going into my 12 th week of continuous pain ranging from 4/10 in a quiet place and only focusing on one task at a time and taking breaks in between tasks, to a 10/10 with 20/10 pain spikes when attempting to do something as simple as take a shower. The sound of my voice bothers me. And when I try to verbalize my symptoms, it comes out all jumbled, and it doesn’t help that my neurologist starts talking before I get an opportunity to finish my statement. And then I forget what I’ve said and what I haven’t. I started bringing someone from my immediate family with me to all of my appointments so I have someone else to remember things for me, and help explain it all. But I still feel like my health and my recovery isn’t being respected in the manner it should. Sounds like you and I are dealing with the same frustration. If you don’t mind, I see your comment is older than my injury, how are you now. Has anything gotten better? Have you found new ways to cope? I’m asking because I’m only 3/12 months from injury. Clear CT, with a sharp decline upon returning to work 2 months from injury with reported headaches, fatigue, pain spikes, dizziness, light and sound sensitivity, speech effected, short term memory loss, emotional and instability. Has any of it gotten better for you yet?

@jenniferctbisurvivor keep your head up, keep at it every day. You are the one that has to fight it and wake up every day and do what you have to, we are right here with you doing the same thing every day, it is rough. Being in EMS everybody understands what is going on and some actually help me by not saying anything when I start to lose my train of thought, they just wait until I give up. I may ask the same question again and forget what I was told earlier it bothers me more then it bothers the people I talk to about it. But you have this and dont let anybody make you feel any different. We are all strong individuals and can be stronger together