I would like to know how long Post Concussion Syndrome lasts too. 19 months here.
And @johannawest Thank you for your post. Your multitasking and math issues caught my attention.
I'm 19 months with PCS. I'm just now able to do some basic math without having to write it down like in elementary school or use a calculator for super simple add and subtract. I was a passenger in a car accident. I still have facial pain, regular headaches, wrong words coming out, spacing out or going completely blank when asked a question, needing to write things down, constant ringing that makes it difficult to sleep, have issues working computers/phones, lose track of time, and have trouble taking the stairs (walking down is more painful than walking up them). It took a year before I got my balance back and I credit neuro-feedback and infrared therapies. A lady told me about it and said insurance covered it (she had Cigna). An email would take me 3-5 days, if not a whole week - because if I didn't finish it, I'd have to start all over again. My train of thought was just gone - like POOF! then deer in headlights look. Then on the 20th or 30th attempt, I'd finally get it written and sent.
I don't have insurance and I don't know what happened, but the auto insurance closed the medical claim and ignored me. So I didn't get the medical attention I should have had, just thank God he was with me, because I barely remember the first 2-3 weeks. Was barely awake the first week, then forced myself to stay awake and moving around 2-4-6-8-10+ hours. The seat belt injuries were brutal. I used infrared therapy 5 hours a day and it still took 10 weeks for the deep bruises to dissipate, then months for the deep tissue pads to break up and go away. I never thought the cracked ribs were ever going to heal (4 months) and I still have a sore spot when the Doctor checks it.
Experts tell me I likely have facial fractures and 99+% just take time to heal. That like 1/10th of 1% require surgery.
My left eye socket/cheek area still hurt (a constant ache, headaches, and pressure like pushing a bean bag on your face & eye).
I was really worried I'm still having headaches, forgetfulness, pain in my face. So I saw an opthomologist. Good news is that he said all the testing looked good and that my vision was still 20/15. And he, like the other DRs, said to see a Neurologist. With no insurance or referral, doesn't seem likely I will see one.
My biggest frustration is how long it is taking and how slow (& small) the improvements are. I've given up everything I use to do, because I'm barely making it through the day. House and yard and behind and showing it.
I joke that I feel like I'm in a Gunsmoke episode, using old remedies. But I'm finding out many people are reverting to the tried & true home remedies for most things due to the high cost of healthcare. Even with insurance, they opt for alternative treatments over the expensive options with insurance.
If anything, do to my situation - I have a whole new respect for alternative therapies and homeopathic. I realize it is all based on thousands of years of Chinese medicine, just never needed it until now.
Never in my wildest dreams did I think this would be so devastating and life altering. And there are days where I get down and wonder if I'll be like this forever. Forgetting where I put things or key points makes it very difficult to socialize. Days of staring at the computer or phone, trying to remember what to click on.
Thank you
@patty78962
Hi,
Wow, sounds like a pretty bad injury too! I saw the neuro Opthomoligist too and he diagnosed conversion insufficiency which was my eyes doing everything separately and not working together, treated with physical therapy exercises at home and that is now cured, but I still have to do the 5 min exercises twice daily to stay cured, I recommend seeing one if you can as my regular eye doctor also said everything was fine before seeing him too! After the eyes were cured my blurry vision has stopped and it reduced the head pain substantially. I mostly get the head pain now when I am seriously cognitively fatigued. I also see a speech pathologist to work on rebuilding my neuropathways around the damaged parts of my brain that will never heal. I ham learning to use tricks and tools to prevent the cognitive fatigue which is definitely making all symptoms worse, it is definitely a balance of rest, NO Stress, water, exercise as tolerated etc. My stumbling and staggering due to the accident caused vertigo is worse when fatigued but the dizziness is getting somewhat better at times with the vestibular PT exercises! What I am finding is it’s a lot of Physical Therapy, some is working some is not. The brain damage, memory, no more relying on my brain too work ant it just saying things backwards, the math still terrible- can’t even figure out how to count out 15 min breaks without a calculator.
Please don’t feel alone out there as you are not, I can relate to everything and every symptom you stated. Hang in there, I know God has a reason for everything and that he never gives us more than we can handle. You can make this recovery or life adjustments! Please know how much your experiences have touched my heart and helped to encourage me to keep going too no matter how hard each day is and what new challenges we must overcome!
You are appreciated!! 💕💕