I've been gone for a long time on here. My name is Jenna. I hit 4 years on November 21st 2016. I'd love to say I am healed and the emotional struggles are all gone but that is my fantasy world.

My biggest symptom is the visual processing and auditory processing that tanks my brain. The neuro fatigue is a killer. It keeps me from participating in life. Simple tasks take me down quickly. Reading from a book or magazine is out. Small, short, non cluttered text without too much detail is good. Movement, sounds, visual stimuli, crowds are very hard. I get vertigo immediately in dim light and darkness. So all that puts a damper on many activities in life. I have a host of post concussive symptoms still...oddly some just seem to be who I am anymore.

My processing is diminished. I hear things, talk about it, think I understand it and then hours, days, weeks, months, yes years later it hits me like a ton of bricks and it makes sense finally.

I have tried several meds to up my processing...nothing has worked. I had a stroke in 2015-cerebral venous thrombosis. I was diagnosed with a possible blood disease, antiphospholipid antibody syndrome. They can't be sure because the test is not accurate when you on a blood thinner, which i'll be on for life. The hematologist thinks the car crash and subsequent brain injury played a role in the damage of the veins in my brain but there isn't much research on venous strokes two years after TBIs.

Living with my symptoms after the crash and the change in them after my stroke I would say it definitely played a role.

I am limited in my life. Exhaustion is no longer just neuro, it is also my body since the stroke and I also have all over body pain now too. I work on staying positive as much as possible. When fatigue hits or body pain, it does bring me down. I keep telling myself it will pass and my disposition will change. It always returns to positive. My flares can last over a month. It's rough...but I am very fortunate in that my husband is a gift from God, as is my mother and extended family. I have great friends too. My long term disability saved our finances and it makes up what SSD doesn't cover till I am 65.

I have hobbies, and a beautiful studio that my husband built and lots of materials and things to do. It all is challenging and requires breaks. my brain can only do so much at a time. My interests wax and wane and my focus doesn't seem to last long...very frustrating. I just got into crocheting, but after 10-20 minutes of it, my brain takes a dive and I am done for a day or two. The neurofatigue is better than it was in the begging, but it's leveled out over the last two years and is still very profound.

I still see my neuropsychologist, the doctor I feel has been the most valuable since my TBI. I have given up on finding a neurologist that 'gets' it. I have seen local, and been to RUSH in Chicago. All I have found has been lots of testing, lots of bills, some judgment, some honesty of a dr not knowing what to do, and acceptance that there is no cure. I have a new primary care dr that my husband has seen for 3 years that I have moved on to...he has my records and has accepted my case. If he can't help me he said he refer me out. At this point I think it's just managing me and making sure the rest of me stays healthy, which I work hard at doing.

We just bought some land and will be building in a year or so. A ranch, and my mother will have an in law suite. We will be about 500 ft from a great lake, in a great town. I taught here and loved working with the kids and parents. Many have become friends of ours and my kids find me on FB. Not working is like cutting off my oxygen supply. I often think why me? Why not someone that would want to be home and do nothing? Why take me out of the game? I loved working, volunteering, and being active in life. Why me when I was making a difference in this world?

My blessings are great...but I am still a shell of who I used to be and my satisfaction in life is low. Even being 4+ years out I still consider myself at the beginning stages of this journey. I have a lot to accept, lots to learn, and a new life I need to create and find joy in. It's an uphill battle. My soul aches beyond words at times and I battle with reasoning staying in this life.

I can only speak from my experiences. I had terrible visual and auditory processing. It's gotten much better, especially in this last month from vision therapy and syntonics (syntonic phototherapy). I see a behavorial optometrist trained in neuro-optometric rehab. About two months ago I was reading 15 minutes maximum at a time. I could probably do a 90-100 now. I've read lots of people have great success with vision therapy for both visual and auditory processing problems.

Here's the site. There may be a physician near you. Neuro-Optometric Rehabilitation Association

Good luck!

Living Dazed,

Welcome back. I see it has been just over a year since you posted. I'm sorry to hear you are still struggling so. I understand the visual and auditory processing issues as they are my primary struggles.

Is the APS diagnosis based on blood work or a cluster of symptoms ?

Early in my recovery, I had a number of activities that I switched between. Sometimes, 10 or 20 minutes was my limit. Other times, I could go longer. I improved as I learned how to get better sleep.

Have you learned how to recognize an impending brain dive so you can switch tasks before your brain takes a dive ? For me, it was a slight bit of focus struggles or need to reread a line of text or not understanding what I just heard. If I switched tasks before the brain dive, I would recover faster. I got a lot of exercise going up and down the stairs from my office to TV room to garage/shop a couple times a hour.

I recently learned the physiology that makes good sleep an imperative to regaining brain function and health. The brain can only detoxify during slow wave sleep. The neurons can heal during REM sleep but the detoxification is the most important function.

I haven't worked since Oct 2006. I understand the frustration, boredom and the rest. We've been trying to find land to build on so I can have a real shop to try to stay busy in. I wish you well as you take on the task of building.

I'm meeting with a new neuro next month. She takes a holistic view of neurology even though she is an MD. It will be interesting.

My best to you.

Hi Mark, Nice to see you are still educating others and taking care of yourself. Hope you find your piece of land soon.

I work on my sleep all the time. I have not found that great spot yet. Stress, overstimulation, and pain play a big role. However, it's a process.

I do take breaks. Sometimes my warning signs come too late. Also, some days I can do the same things and have opposite effects. That makes things extra sticky.

Over the last 2 yrs I have seen a handful of new neurologists. One told me that it was all in my head. That neuro fatigue is non-existent along with things like MS. I walked out of that appointment into the cold. I contemplated continuing straight out into traffic. It was a low point. My mother and husband left the appt too after a few more minutes. They were able to calm me and get it through to me that it's the doctor. I know it's the doctor...i think that aspect is what's devastating.

I know my body, brain, and character. Who would choose to live a life like this? There would be no way to fake this life for years. The daunting task of finding a doctor that says, "Jenna, I know exactly what you are living. It's sad science hasn't nailed down what is happening in the brain to cause this fatigue after a TBI. Let's try to find other ways to make life work for you. I will continue to look for new treatments and in the meantime I will monitor you." That is my dream doctor...long with the ability to get rid of my body pain.

I've given up on local support groups. Did that for two years. It's hard with people like us. We have personality issues. I just don't have energy needed to sustain those friendships.

I still love my studio. It's my favorite place to be in the house even if I am just sitting here looking out the window. I am open to an hobbies, especially ones that don't tank my energy and I can really get going on it.

What hobbies are you up to? What are you wanting to do in your future studio? Our new lot has an existing garage on it. It's along the back lot line dead center and in need of a decent amount of tlc. It's a double wide. I am not sure if it can be salvaged for a studio but i am hoping.

It's a cold day here in northwest indiana. no snow, no sun. Cat lis lounging on the heating pad here on my studio tables. she hasn't done much else since I put it up here yesterday.

Be well. I think I will hang around here for a while this time. It's comforting to be with others that get it.

Jenna

Hi Jace,

I haven't been on this site for a while, too. Hit my 4-year mark on Oct, 2016. Thank you for the update on your status. Your struggles are numerous, but as always you meet them with a gracious optimism! Glad to see your spirit still stays strong!

I am glad that you have a special place to have hobbies or just escape to. I have been able to sing more frequently for longer durations, for which I am grateful. My husband just told me yesterday he missed my singing! So did I! And although I probably will never be able to sing with a group of people again, I am grateful for the solos I can do more often.

I hope you can find some good hobbies that give you a healthy outlet without tiring you out too soon. I am able to read larger print for longer periods of time now, and I find that a healthy outlet.

About the Neurologist that doesn't believe your neurological fatigue...you have suffered a stroke along with a traumatic brain injury. You probably have more neurological fatigue because of both. Doctors can be sincere, but they can be sincerely wrong. You aren't using this as an excuse to not get better, but rather as information to help you get better.

So don't let that opinion negate all you have already experienced and have recovered from so far. Keep up your good work and celebrate your victories, however small!

Take care, M-i-m

Did you see Dr. James Young at rush? He helped me Initially with different meds that worked short term (amantadine/low dose adderol)but then has side effects.

I am 5 years post car accident. Every day is struggle. I feel your pain.

Hey M-I-M,

Glad to see you're still around. How's life going for you are you seeing improvements beyond singing. I'm genuinely happy for you that you can sing what a wonderful experience for you and your husband.

Jenna 😊

Today is tomorrow,

How odd! I do have an appointment for Dr. Young I've had it for five months now and it's not until June I keep going back-and-forth on whether I'm going to keep it and just recently decided that I might as well go ahead and see him

Jenna

Good! Him and the neuro opthamologist at mind eye connection are the only dr. I trust.

hi i can't believe there are people out there just like me. reading the post made me cry for everyone. im truely sorry we are all alike. not sure why we all had to change. its sad. thank ya'll for posting information, im not sure how it all helps but im glad im not crazy. thank you all.