I am so sorry for what you are going through. Unfortunately, I can relate. If it wasn't for this site, I would think that I was going crazy sometimes.

It's been almost two-and-a-half years for me, and I still cannot tolerate noise, crowded places, long conversations, etc. When I get the foggy days, I either want to cry or scream or both.

I think the thing that has helped me the most is to try (and the key word is "try", because it doesn't always work) to take it one day at a time. That is the only thing that you can do with this PCS.

Unfortunately, doctors don't understand it. At least that's what I've found. You have to seek out what works for you. And even though you were trying to be think of your husband, you do have to protect yourself. If you feel you have to lie down, that means that you are getting a signal from your body, and if you don't listen to it, you will suffer.

Please take care of yourself. Everyone here cares. Vent as much as you like. I guess that's one of the purposes of this site.

I hope you feel better soon. PCS is so up and down. A good book, if you haven't read it yet is Brainlash, by Gail Denton.

ShellyK

Thank you for the book reference I'll check it out. You sound like my mom lol Yes I should be acting selfish now. All day yesterday I was a complete zombie because of the visit. Today a bit better but still foggy brained.

Michaelabella,

I haven't gone back to work yet and not sure if I could handle my line of work anymore. Any advice? I have a return to work meeting with them tomorrow and afraid of the outcome coz they are so darn pushy!

I have also enjoyed this site. My doctor just gives me a weird look every time I say I feel the same as before. Like it's unusual. I'll see what they say this afternoon when I see them again

Kelly

When I first got injured, I had to see a workers' comp doctor, and he made me feel like there was something terribly wrong that I wasn't better yet. I knew that I couldn't go back to work.

But he made me feel guilty - like I should tough it out. As I said, I wasn't capable of working. I was feeling too lousy. I had horrible headaches. I couldn't tolerate noise. I was nauseous. Etc., etc., etc. But I tried to volunteer. I was a teacher, so I went in to help the substitute.

However, I couldn't last more than an hour. I would usually get dizzy and get a headache and have to leave. And then I had headaches for days.

Luckily, I eventually found this site and I realized that my symptoms were real, and I realized that I had to listen to my body. I wonder whether it would have made any difference if I didn't go in to volunteer at the beginning.....

What I am saying to you is listen to your body. If you are not ready to go back to work, don't let anyone tell you that you are. It will only set you back further.

Unfortunately this is not an illness that you can "push through". I have learned that. I have also learned that if you have to see a workers' comp doctor, you have to be an advocate for yourself. You have to find treatments.

The doctor that I saw only gave me Motrin for my migraines, and Motrin gave me stomach problems. They don't even pretend to try and help you. They just want to get rid of you as quickly as they can.

There are doctors who care - even if they may not know how to help you. I think that it's all a guessing game. They really don't understand our illness. So we have to keep trying to find out what will help us.

This website has been a godsend. At least there are other people who are going through the same type of thing that I am going through. And I realize that what I am feeling is normal for this type of injury.

My best to you.
ShellyK

Thank you Shelly!

I'm trying so hard to listen to my body and sometimes I just think I'm crazy but then I come here and realize I'm not

Thanx again,

Kelly

I just got back from my RTW meeting and it was uneventful. She read the note saying off of work and will not return anytime within recent future or something like that. She sat back in her chair and said where's the modified duties form?

She didn't get it! I asked her if she knows anything about Post Concussion Syndrome because she wanted a recovery date. I handed her my list of symptoms I wrote out for my GP. I told her there wouldn't be one. She wasn't satisfied until I signed a consent for her to talk with my GP.

She's questioning his ability to diagnose me with PTSD. She wants me to come in for 2 hrs at least and just talk with patients. I could barely talk to her!!!

I said impossible. She also doubted when I told her my days consist of me laying down. When I got up from my chair I was so dizzy I had to catch the wall to stop me from falling back.

I spoke with the Acquired Brain Injury clinic this morning and gave them my new diagnoses of PTSD and explained my symptoms and when I got home at 11am I had an appointment with a Neurologist waiting for me!

I spoke with my GP and warned them Cruella Deville will be calling. Luckily they've dealt with her before.

Trying to stay positive but losing faith

Kelly

I'm at 16 months post accident and still struggling. My first neuro was completely clueless. Fortunately, I was able to finally find a team of doctors who get it. Kelly, I hope what you have recently found out and your drs can finally help you find some relief and feel more supported. My advice for those of you who aren't getting help from your doctors is to try another. I know it's a huge pain to do that, but there is more than can be done in terms of medication and therapies that may be of benefit to you. After more than a year of this, and realizing most people don't get it, I've decided that if you don't want to take the time to understand my struggle, I'll move on to someone who does. Thankfully, this meant finding new doctors.

As for returning to work, I'm worried I will have to try to find something soon, as I have another 16 months of waiting for a disability hearing, and can't pay my bills..... I just don't know what else to do. My employer treated me the same way at 3 months out from my injury and fired me when I was unable to return to work. (I was not FMLA eligible because I had only been with the company 11 and a half months when the accident happened.)

I agree, thank God for this site. Just know that there are others who have been in your shoes and are sending positive vibes your way. Keep pluggin away. We're here for you

Shelly,
I know what you mean about the workman's comp drs. i am going through that right now. I am 6 mos post injury from an assault on the job in a lock down mental health facility. Every time i go they literally try to put words in my mouth about feeling better from the moment i step in the door. The CNA does and the DR does it. I think they are trained to do it. No i don't feel better, I'm at a stand still. I live in a fog. I can't find words, i don't make sense most of the time, my balance is off, i over load easily, I'm no longer smarter than a 5th grader, heck I'm lucky if I'm smarter than a pre schooler most days. The list goes on and on. But nope they will just keep saying things like "but over all you're better right?" I'm not going to answer yes to that. The neurologist says i have a long road ahead of me, but the other guy wants to close the case for the employer who happens to be the State of Oregon. lol I'm screwed. ugh!

I went the the ER for a spider bite the other night and the young doctor there when I told him I'm 8 months in to PCS looked at me strange and said "You should have been done with that concussion after 1 month. Here's our neurology dept. number." Now first of all PCS obviously does not last just 1 month. Second of all it's alarming to think there may be something ELSE wrong with you that's a total mystery. All I can conclude is that this young doc new nothing about PCS and thought he did. So your doctor is not the only one who gives you weird looks because he doesn't realize what a haul PCS is. BUT my mom went to see a nurse practitioner at her doctor's and when she heard I had PCS she flatly stated "I'm so sorry to hear it! That's 1-2 years of mood swings and symptoms." That would have terrified me at the start but now at least I know it's a long haul, but not indefinite.