Struggling with Post Concussion Syndrome
 

Hi, I was in a significant car accident in 2013 where I was reared ended by a vehicle travelling appx 65 mph and hit me while I was stopped. It was months later before anyone diagnosed a concussion.

I have neurosensural hearing loss, sever tinnitus, vision problems, vertigo, nausea...extreme difficulty reading for any period of time. I have been through the therapies, and the neurosurgeon who specialized in concussions says it will get better over time. Okay. But I have severe problems with emotions. I have an occipital nerve injury which I am having a occipital nerve stimulator implanted next month. This injury gives me extreme head pain...most days I get by, on a bad day I want to smash my head off of a wall. The days following a bad day, my emotions are a train wreck, I get set off very easily....I have a compiled feeling of every emotion and don't know which one is correct...then I feel crazy about it. It ends with me in tears.

I don't know what to do with this? Any help or advice will help is so appreciated.

Hey. I am sorry that we meet under these conditions and sorry for your struggles. There are so many people on here with such varying degree of symptoms. All of them are helpful and kind. Mark from Idaho will be of much help and is very knowledgeable.

I just wanted to share that I too am an emotional wreck after my concussion. My anxiety is poorly controlled even with the help of medication. I feel depressed at times and obsess over my thoughts. I think some days this accident has changed me and I'll never be the fun, outgoing girl I was before. My emotions make me feel crazy also.

Just wanted you to know there are lots of people that are here to listen and help and most importantly relate in a world where so many people just don't get it.

Welcome to the board. People will be along with helpful advice and tips. I can definitely sympathize with you on many of those symptoms.

I know nothing about the stimulator but hope it helps.

You might want to mention your emotional roller coaster ride (I've had them) to your doctor. Maybe he can give you something to get through these hard times or maybe a therapist may help.

Again, welcome.

It's been over a year for you... has anyone referred you to see an endocrinologist? You should get all of your hormone levels tested because there is new research to indicate that many people who suffer from PCS for over a year have pituitary gland dysfunction caused by the concussion.

I was in a similar auto accident as you.

It took almost 3 years for them to figure out that I had pituitary dysfunction because I pushed for the testing and paid out of pocket to see a specialist with experience with this kind of thing. (The endos that my HMO sent me to wouldn't even order the testing.) I paid out of pocket for the testing and it proves that I need the hormones and now my HMO pays for the treatment. :)

I'm doing significantly better now than I was before I started the treatment.

Have you had the pressure inside your skull measured? I had an increase of intracranial pressure inside my skull (which is probably what caused the pituitary dysfunction) that caused me a great deal of severe pain for about six months until I had a spinal tap to measure the pressure - which also relieved the pressure entirely. That was about 6 months after the accident I was in.

I have been tested for all endocrine issues, as the mri I had done after accident showed nodules on my thyroid, so my PC doc ordered a battery of tests. I have had rhizotomy (the nerves burned to make them quit working) done to my neck, as I have had a total trapped trapezius since the accident. I had massive shoulder surgery as the cartilage was a complete tear to the point of having my bicep tendon cut and removed from my shoulder and screwed into my humerus. The doctor says that the whiplash that I received was so significant that it damaged occipital nerves, vestibular nerves and neurosensural nerve. I am on medications for the pain, anxiety, vertigo, and nausea. The nausea is so bad sometimes, I have lost 9 lbs in a week.

I deal daily with most of this, but the emotional disruption makes me feel like I am going crazy. I am seeing a psychologist, he said that the "wires" are transmitting correctly. Ok, well how do you make them work?

I am used to being a powerhouse working...now I am lucky if I can get a day or two in a row that I can clean my house.

I am lucky that my neurosurgeon is an expert in concussions...he sent me for vestibular therapy which definitely helped. Pain management doctor and neuro having been pushing for me to go on SSI...that is a real ego breaker. I am only 42, and I looked up the SSI payment...I would be destitute.

I know I am not going to be able to go back to work, any time soon. I know that everyone in my life thinks this is all in my head, and that with a good self help book and positive affirmations I am going to magically get better. I had to tell my boyfriend tonight that he had to go away for an undeterminate time, because he brings me stress...well his life does anyway. All it takes is one emotional stressor, and I am off on a freaking crazy train. And the sad thing, I don't really know what I am supposed to feel. And, for the love of life, I have had someone say you are absolutely crazy.

I do want to ask, do any of you have continual tinnitus? I have high pitched non-stop...but when my symptoms are bad I have a buzzing too along with the high pitch? I have asked every doctor about this, and get the oh, its tinnitus.

I'm actually shedding a tear or three reading your post.
I can feel your anguish in your words.

I'm so sorry that it's all so awful for you right now and I'm sorry you are having problems with your friends and loved ones not understanding.

You have found a very good place to find support and information here.

Hey,

I have the continual tinnitus as well. I have not been able to properly describe my symptoms(how do I describe these odd sensations that I have never had before?!?!), but "buzzing" sounds about right. I also feel some sort of pressure as if my ears are full and am very sensitive to vibrations(not sure if this is related to ears or tinnitus).

I have gone from extreme frustration(I wanted to smash everything) to feeling numb and tears streaming down my face in a second. I feel different, but I try to focus on being positive and optimistic.

I mention this hesitatingly, because I just found out about it today and could be a hit or miss, but there is a medication that MIGHT help tinnitus IF it's caused by vestibular issues. But maybe you guys have heard of it and I'm the only one that hasn't. It's called Serc just to let you know.

You are not crazy and it's not in your head. We've all heard that, I think. I left my job making 4x disability so I could "live off the government" my brother said....

I haven't given up thinking that I might work again. After years of suffering with pain and insomnia, a young neuro gave me meds in a dose that helped. So you never know.

Your story is a tough one to read, even by our standards, and I wish you only the very best.

the fullness is in the ear is due to concussion, I have this too. I myself have a 4 decibel tone that is non stop...it is enough to drive a person mad, but when my symptoms are really bad, I have a buzzing on top of it, like a mad bee, and when I turn my neck a certain way, it will stop until I move it again.

I am a healthcare professional by the way....ironic, if not for my medical background, I would never have gotten the help I have.

I have already lost everything financial in my life....and I will tell you this, I would pay every penny I could if this accident would never have happened. I look in the mirror on most days and wonder what happened to the Jackie on July 30th, 2013 because on July 31, 2013 she disappeared into an abyss of surgeries and black hole called post concussion syndrome. I am relatively a positive person, but the affirmations sometimes just don't cut it. And to have to tell someone you love so much that they have to go away, not because of him, but the information he talks about send you spiraling. I sure hope this gets better soon. I did tell my daughter that I found this site, and that I am now certain I am not alone, nor losing my mind :) It makes a big difference just reading words of others just like me. Thank you

one more question.....I am on an arsenal of medications, one is for sleeping of course. Sometimes the insomnia is bigger than the pills...at night I take sleeping pill, pain pill, vertigo pill and a muscle relaxer....should put an elephant out, most nights yes, I sleep well, but some nights I am awake well over the meds.... is this normal for you as well?