Tell Me You Get It, I'm Begging You
 

MVA crash 6 months ago. Slept the 100 day sleep. Exhausted, in my head, not my body. Constant nausea , headaches, light and noise sensitivity, confusion, withdrawn from myself, PTSD, severe concussion from my head going in all directions in double impact, can't read, can't watch tv, listen to music or books on tape, public places are complete chaos for my brain, sharp shooting pains through left side of head and right eye. Insomnia, can't organize, bad memory, mental math issues, severe distraction issues, dizziness, balance problems, I'm a savory eater but only craved sugar the first 100 days after that back to savory...when I can eat, ringing in ears, heavy head, pain at base of head and neck, muscle twitches 24/7, temple pain, I can't drive yet, focus and processing problems, blurry vision, migraines, depression.

I have seen: neurosurgeon, neuropsychologist, psychologist, psychiatrist, professor of otolaryngology & physical therapy human movement sciences, otoneurologist, neuro rehab & dizziness n balance, eye dr, Neuro eye dr soon

Diagnosis':
Post traumatic migraines with photophobia, phonophobia, possible L occipital neuralgia, hyperacusis, PTSD, Post concussive syndrome due to acceleration/deaccel. such as in "shaken baby" syndrome. Hearing loss- worse on left side, overall vestibular function is moderately reduced. Down beating nystagmus on cervical testing, right beating nystagmus on head left position. VEMP testing is weaker on L side.

The first 5 days I seems beat up, but not brain damaged. After that my brain went into shut down. I am much more aware of life now than before but it is slipping away from me in other ways like I'm being victimized again. My job has been given to someone else, we have to switch to my husbands insurance.

I'm struggling with basic daily life. I'm isolated. The outside world is painful for me. I keep friends away because I don't want them to see me like this... Who am I now? I'm not the wife and mother I used to be, I can't work, drive, others make decisions for me. I feel like my life is slipping from me.

I am finally aware enough to be sad. I kept thinking I was getting ready to go back to work, when everyone around me knew it would be a long time if I ever go back.

My neuropsychologist and OT feel I have brain damage on the left side and that it's more of a mtbi instead of a severe concussion. I have 11 1/2 months left on the most crucial healing time and this is like navigating an alien language.

This is such a lonely injury. I'm in my 40s, female, mom, wife, on long term disability, love nature, photos, and I'm not sure what else right now. Neuropsychologist wants me to get a hobby that doesn't highlight my disabilities.

Right now I could just use some friends that get me. Jace

welcome
 

Hello Jace

Yes, your story, sadly, makes sense. I think all of us here are figuring out the new normal for ourselves, and trying to get better as much as we can.

Welcome to Neurotalk. This is a good place.

Your symptoms are beyond what I have experienced, but I am sure other, very knowledgeable people will weigh in here.

Please check out the vitamin thread. There are vitamins and supplements that can help your brain heal to the best extent that it can heal.


Sincerely,

pm

PM,
Thank you. As you can see last night was my breaking point. My life is changing faster than I can adjust to it and even my husband just can't understand since he's not experiencing it.

One day at a time.

Ok............. I get it.

No. I am not making fun.

I do understand.

My nutshell in my sig tells alot about me.

I was finally at a point in my 45 year career, that I could finally setup planning to assure my retirement....... plan out all my goals.......... the first time ever in all my career.

That got changed on that glorious day in June of 2010. Even though I tried to "push" through for a few years - it worsened and I finally failed outright and acknowledged that I should have just went out earlier on disabilty and tried the other route first.......... but either way, my docs said, I'd probably be at this same point..........

The headaches, the cognitive issues, the "everything" running its course as it will and working out plans with therapies as issues arise and need addressing.

We all do go through them, as they arise...........

Hang in there, address what arises, and we are all here for each other.

Have a look at the Vitamin / Supplement link as suggested.

Address you neck issues for sure - Ice works well, I'm sure Mark will be on shortly to advise you there, he has a nice formula for making your own ice packs, and offers good information.

Check into Brainline.org for very useful information.

Make sure you are keeping contact with a good Neurologist or Physiatrist for your injuries - they will provide useful care for Neurological issues re: concussion, whiplash, mtbi, etc.

And, yes, anytime you believe you have more problems than they think you have, be sure to voice your concerns to them - and vent your concerns here - patients seem to be more aware than the practitioners in the real world these days when it comes to concussions/pcs/mtbi issues..... and there are many of us doing much more investigations on available literature.

Concussion,

I didn't take it as joking and today the end of my world did not happen. I am no longer in complete panic mode over the things I've worked for over the last 23 years. Day by day.

There are others that are farther along and are making this transition. It is possible. It can be done. I keep repeating these things.

Are you going back to work? Are you successful in daily life?

Thank you for your words and suggestions.

Jace

You need hope and I will give it to you! I was you starting on September 11th, 2011. A concussion is a brain injury, even though many people use the terms separately. I was told that it would go away overnight...one day I would wake up and it would be 100% gone. Not true for me! I continued to hope but knew deep down that it would not happen despite the doctor telling me that repeatedly.

It took a good while for me to understand that there would be healing, and it would be slow. The first year was extremely difficult with some moments of hope, but not many. It took a very long time to understand what was injured, and what I could do about it. It sounds as if you have made progress that way.

I have youngish children (7 and 10 when the accident happened) so I understand that too. It is hard on them and on any family members that care (doesn't seem to bother the ones that don't care).

It is lonely, isolating, difficult, hellish, boring, frightening, painful, scary, challenging, etc. I am still struggling to find a way to describe the experience. I am trying to validate how you are feeling because it is such a deeply, fundamentally challenging injury.

The good news is that the brain heals, but it is the slowest part of the body to heal. It is glacial. There are inexplicable setbacks. But you will feel better in the future and regain important parts of your life. I have learned to measure my progress in 5 - 6 month chunks, because it is not day-to-day improvement like other injuries.

I have been able to take up more of my work, although not some important aspects of it like teaching, and I still have a deep fatigue, which is very common after a brain injury as the brain has made new pathways that take up more energy for the same task as you previously did it.

But it does get better. You need to review all of the good advice on this board when you can. Vision therapy is going to be important, vestibular therapy, etc. Neuroplasticity is what will make you better. Small small small steps to retrain the brain. balance. vision. hearing. hyperacusis. etc. baby steps will get you there.

Most of my therapies started after I passed what I felt was the acute stage...about 7 months into the injury. I was then able to try little bits of therapies (vision, vestibular, etc.). I can see progress in this areas.

You will grieve, I am sure. Lots of grieving. For lots of things. For simple things and complex things. One example of the ridiculous....I grieved not being able to bend down quickly and tie my shoelaces as I was running out the door. Not a big deal, but I had to acknowledge it and say goodbye. Spinning on my swivel stools. Again, not a big deal, but it is gone. Loss of who I was, friends who abandoned me, family members who have not asked once how I am doing, playing squash, dancing, enjoyment of music, etc. Grieving is important.

You will get better but it will probably take time. I went to my son's band concert last night was able to sit through his parts (with earplugs). I could not have done that 6 months ago.

I went to a restaurant with my brother's family last week. I could not have done that 6 months ago.

I am typing on a computer. I could not have done that very well 6 months ago. Prisms in my lenses made a HUGE difference for that.

I have made some academic presentations at conferences. Not as well as I used to do them, but I did them.

So there is hope. I feel for you and there are many people on this board who have experienced what you have. Many people have much worse and many people are not as bad. But injuring a brain in so different from any other injury because we are our brain, and it is where all feelings, hopes, pains, thoughts, reason, etc. comes from.

hang in there!
m

It does get better
 

Hi,

Welcome to your new reality, I am now 15 months pcs and still not working and they are saying it will be awhile (more than a year, they don't know) before I can work. It does get better and you have to adapt. You can not look at getting your old life back because it has changed. You now go forward and learn to adapt there are still many great things out there to accomplish and enjoy.

Like you I am limited to reading, watching t.v. and physical activity. I also still don't drive but I am now allowed to take a bus. I have started restorative yoga.

I think the neuro opthamologist will give you more answers. I know for me it gave me answers and some hope. I am now wearing prism glasses and undergoing vision therapy.

Good Luck and be kind to yourself.

I am now in the 10th months of my pcs/mtbi since my car accident, and today is my 46th birthday. My three boys (12, 10, and 5) gave me simple, hand drawn cards, and it was the most beautiful present ever.

Your post really accentuated for me how emotionally and spiritually difficult this condition is. We need to isolate ourselves to heal, and while we intellectually know this, emotionally it is so difficult to bear.

Where is our community?

This forum really has been a life-line in understanding how debilitating and invisible this condition can be. There is a lot of collective wisdom and compassion in this forum!

I went to a good friend's memorial last weekend (ear plugs, tramadol, and frequent breaks got me through, and I know I wouldn't have been able to do it 6 months ago).

My friend battled metastasized breast cancer after the birth of her second child. She did the "work" of cancer, but she also lived life. Truly and deeply. I miss her, of course, but I see how she kept on living right up to her last moments.

I also realize that I am different now, and although this is a changed life, it _is_life.

I'm a bit weepy--but we get to decide how to respond to our different, changed lives. Change is slow and deliberate. And very possible!

Day by day, indeed! Be kind to yourself today.

Not returning to work.

SSDI, Medicare kicks in in July.

Still dealing with Cognitve issues, although they are improving minimally.

Daily headaches are minimized with the high dose Topamax - the Acute headaches kick in without warnings though, can last up to 2 days or so even with regular med use; wasted another day after they pass.

I try to keep focus by returning to this forum and reading what I can, and researching mtbi/pcs/concussion literature and keep abreast with my Medical CME literature.

I work with myself to move forward and keep my docs up to date with me and the literature I find relevant - they express interest.

When not doing above, I actually have fun in a computer game - online; to keep me focused, I can control the environment to not affect me badly, and not have issues , and can leave anytime if I want to rest.

As an insomniac, I am up very early, so can walk 1 block a day; at home can do minimal aerobics for a short while - am easily out of breath; work on leg lifts, few reps with squats, light weight arm curls, upper arm work with light weights; etc. Sadly this is a small thing compared to my old workouts prior to injury - I had to keep in shape to be able to move unconscious patients properly then, to position them for surgery. :(

Best Wishes................

Mokey,

You've touch on many aspects that I'm experiencing. I realized last week that I miss dancing all through my house. My music was always on.

Grieving must happen and I think I, within the last month, have been coming to the realization of how bad my injuries are and that I can't hurry up and complete all the therapies quickly and get back to my life.

From the bottom of my heart thank you. I am battling nausea right now but there is a lot of meaning in my previous sentence.

Jace