Hi, it has been almost 5 months since my accident. I thought I was doing so much better (partly because I SO want to be!) and have been pushing to get back to my normal life.

I even fooled myself that I was finally ok other than the whiplash symptoms I still have (and some learning challenges).

Tues I go to a new cervical/craniosacral chiropractor and get more massage therapy done too.

Well, I think starting about a week ago, I went out to a group Fri nite talk on hoof care (hoping to refresh my memory). When I came home, I noticed my tinnitis was worse than normal.

..Sun we went to dinner at a CT Casino and I noticed that night the tinnitis was worse and probably has been at that sustained "worse" level now every day.

This week, my head has had pains exactly where the impact took place (pains I didn't experience even after the accident, but they may be because it just felt numb at that time).

Is it possible that as the nerves/neurons heal, I am actually feeling the actual pain now after all this time?

After not sleeping well last night, I am finding it hard to get my thoughts out and text a friend/client...I may have come across as agitated and confusing too.

I'm embarassed by the interaction and eventually told them my head was not feeling well and they may be thinking I am making excuses for my behavior since I haven't talked about my head in a while to them.

I am worried about the possibility of slight disinhibition or poor choice/decision making and how that may affect my work in the long run.

Does anyone else experience that kind of thing? (disinhibition/poor choice making?)

I had to do my normal evening chores really slow and concentrated again. It freaked me out and I cried over the lonliness and lack of compassion and understanding from anyone at this point.

Not to mention that I have no guidance if this is normal or not. My thoughts always go toward me making more out of this than is real, but then I can't "snap out of it" either.

I hope this makes sense, because I'm having trouble expressing myself today. Things just feel defeating and hopeless today.

Am I experiencing a relapse of some sort? Sorry for all the "I's" it is necessary for me to keep it as simple as I can make it.

Should I call my regular Dr or finally go and see a neuropsychologist for further testing? This is so hard to figure out by one's self!

Any support or any response at all would greatly appreciated!! Thanks for reading...

I'm sorry to hear you aren't feeling well. Others on this forum will be able to address whether or not this would be considered a "relapse". From my limited experience, I would not say "relapse". I would say you are simply still healing.

You really, really, really need to get a copy of "Brainlash" by Gail Denton. She has printed a graphic in there that describes her theory of how the brain hits plateaus and peaks during healing.

She also has a lot of great information about disinhibition. She also had a whiplash injury. Not to be overly dramatic, but NancyS on this forum suggested the book and it literally changed the way we have viewed and treated my daughter's injury. It's a relatively short, easy to read book. I think it's $13 on Amazon.

The fuzzy thinking symptom is so darn scary. I find it easier to deal with if you keep equating the brain injury to any other type of injury. If you had hurt your knee five months ago and were still struggling once in awhile to walk under stress you wouldn't freak out...you would realize you are still healing. Try to be kind to yourself in this respect.

Thanks PCSLearner! I do have that book and have been reading it quite a bit again. It is very helpful too.

I like the idea of thinking that if this were a knee injury I would be kinder and more forgiving of myself during these times. That really puts it back into perspective.

eponagirl,

What you have been experiencing is due to over-stimulation. Your brain is not ready for this yet. You NEED to get some foam ear plugs. When you are out at a noisy location (CT Casino), wear them. They will reduce the background noise and the overall Db intensity. I prefer the yellow foam plugs that are shaped like a cylinder. Twist them into a tight skinny shape and put them in so you can just touch them to pull them out. They will not stop you from hearing local conversations.

You also need to focus on getting good sleep. I was watching Mini-Medical School last night on the Research Channel. The speaker mentioned that the brain needs ample REM sleep because it is during REM sleep that the neurons can heal. If there is not enough REM sleep, the neurons start to fail and die.

Eleven days of no REM sleep is usually fatal to the brain.

You also need to better inform those around you. If they fully understand, then you are accepted as you are. Otherwise they will discount your 'excuses' just like many uninformed doctors do.

Go to Dr Johnson's web pages at www.tbiguide.com and find his comments that talk about your symptoms. Print those pages for your friends and family to read. The 'ah ha' moments will be amazing as they recognize your symptoms and behaviors. His Guide is thorough and directed at much more severe injuries but address the symptoms of PCS very well. Your family really needs to read his Guide so they can help reduce stress while you heal.

Your experiences could be called a relapse or a decompensation. The term is meaningless. The cause is more important. Basically, you back-up in your recovery when you are sleep deprived or over-stimulated or suffer some other stressor. The hoof care function was likely too much information and too many voices.

Remember one thing. Others will likely consider you more recovered that you know. They only see you from the outside. They do not see how often you are struggling on the inside. Think of yourself as like an iceberg. Only ten percent of an iceberg is visible above the water line. PCS tends to be the same. Others only see ten percent of your struggles. When your family and friends understand the truth about PCS, they will be better able to notice the subtle struggles you are having and offer help or at least compassion and accommodation.


My best to you.

Hi,

I have to say that the comparison to a knee injury just gave me an "a-ha" moment. I have been reading Brainlash, the websites etc, but have my biggest problem is accepting my limits.

I saw a show where someone said that they refuse to say "limitations" but will substitute that with "modifications", which is much more positive.

I have a day or so where I feel good, like myself again, and so I want to go and do something and bang-the next day I am back in bed for the next few days. Or if I concentrate on learning something, I get foggy, dizzy and feel like my brain is attempting a somersault.

So I just break things up into smaller pieces and tackled what I can, and see how that goes.

Thank you for posting this, and for these responses. I find reading them makes me appreciate what I can do, and manage better what I can't do at the time.

The ear plugs are a great trick, and I also find not watching someone when they talk (so many of us are also "hand talkers") and I just let them know that movement hurts my eyes.

Best of luck and thanks for the tips!

Thanks again for your responses! It really helps to be reminded of how this works. MarkinIdaho you are super helpful with your knowledge and advice, it's much appreciated!

tengboche,

I often close my eyes so I can listen. It can make a huge difference. I need to tell the other person what I am doing so they do not get confused.

When I watch TV, I use a head set that helps me ignore the background noise. I have a daughter who is very intelligent and knowledgeable. If she gets started talking about one of her adventures, like climbing Mt Baker glacier fields, etc. I have to leave the room. She puts too much information into each minute of talking. My brain overloads. My wife can sit and listen to her for hours. I overload in just a few minutes.

I have used a term that I think fits better than modifications. Accommodations. We have work-arounds ( a different way of getting a task done ) and accommodations, a different way of dealing with a stressor or other challenge. Foam ear plugs are an accommodation.

We need to recognize our limits for the present and use work-arounds or accommodations to continue with our life. The limits are there and they are real. They can change from day to day. Getting past the reality of recognizing limits as not being a self put-down allows us to go on. Then we celebrate the success of our work-arounds and accommodations.

But then, am I just splitting hairs?

Visit a TBI support group. It will put a new perspective on your limitations. There is the old saying, "I used to complain because I had no shoes until I met a man who had no feet."

I help a man who spent 3 months in a coma and then two years learning to walk and talk. His 20 year anniversary of his new life is Oct 16th. His email to me today included this line <Also, as of the 16th of October, that will be my 20th year from being 'transported' to a different time & place than what I previously desired to be at. Recall during the ~middle of the Sound of Music movie where the chief nun told Maria "...when the Lord closes a door, he opens a window." Hence (& w/o the commercials), I should glance this episode in this manner, so sayeth the soothsayer if I may say so. :-D >

He has spent 40% of his life recovering from being hit by a teen driver as he walked in a crosswalk.

My best to you all.

Thanks, Mark, I needed to hear this. Today is the one-year anniversary of my daughter's injury. It has been more emotional than I anticipated.

It's good to remember that no matter how bad things have been for my daughter, how many things she's lost, she has never had the losses that your friend has spent his life recovering from. She may have to make "accomodations" for the rest of her life, but she will be able to graduate from high school, and go to college, and have a career and a family. Things may just be a little different than they would have been otherwise. That may be a good thing.

She and I have shared moments and learned lessons we may have missed otherwise. Each of those are precious to me.

PCS Learner,

I believe the silver lining of PCS is the opportunity to realize that a full life does not mean a hectic and busy life. I believe just the opposite. Too many in our society are living to fast and furious to smell the roses. The ability to sit and observe the world around one is a lost skill. Why should we have to wait until we are old to learn to live life with a slower, more observant pace?

There is also a life definition that is imposed upon us by society. I was a high honors student. I was going to be a dentist specializing in orthodontics. I have the intelligence and manual dexterity to be very successful.

I have met very few dentists who are enjoying their careers. Most see their careers as a means to a good income to afford them other enjoyable activities. They put up with the tedium to get the non-occupational benefits.

Up until my 2001 injury that changed my life, I had been very successful in self-employment owning my own businesses. I preferred the freedom from the constraints of a "career" that many of my friends and contemporaries live with.

If she can take a good inventory of her likes, dislikes, skills, weaknesses, PCS limitations, she can decide what she would prefer her live course to be.

Since moving to Idaho from California in 2000, I have seen a drastic difference between the "driven for achievement" world and the "enjoy living" world. I moved here because I could see how I needed the slower pace of life. I can't imagine trying to live in the hustle and bustle of most metropolitan or growing communities.

My 25 year old daughter has realized this already. She rejects the go for it life and is pursuing a more laid back and adventurous life away from the hustle and bustle. She is a high achiever with great intelligence. She graduated high school at 15.

Your daughter might benefit from reading some bios of people who are living a less stressed life. Some even go "off the grid."

Encourage her to smell the roses and find her comfort level. There is a whole world to be discovered at a slower pace that is completely overlooked at the high speed of most lives.

My best to you both.

Perspective and attitude are everything. Everyone has unpleasant things happen to them, the particulars are different for all of us, but we choose how we handle things. I'm not glad I hit my head but I can see some good coming out of it. I've learned a lot and look at things differently. It is hard to adjust expectations but there are many different paths, all of which lead to a full life if we choose it. No point beating yourself up over things beyond your control. Taken me a while to figure that one out. ;-)