The last few doctors I have visited have basically dismissed the concept of pcs as a diagnosis. The neurologist and neuropthamologist both claim migraines, and my primary care has this theory that I've isolated myself for so long that my extreme light sensitivity and noise sensitivity are due to that.

Either these symptoms which have been there since I hit my head the second time aren't really there or these doctors are incompetent. But these symptoms are there! And I have a long list of other symptoms that match pcs.

I've tried to have days where I just ignore them. And the docs seem to think pcs can't last this long (going on 20 months). All this does is make things harder.

Doctors are ridiculously incompetent! I was told my brain wasn't going to heal after a year and now I'm going on 32 months and improving.

As for the extreme sensitivity, you can't do anything to aggravate your head. So if opening your eyes aggravates your head, you can't do that. Hang in there...

incompetent. I just posted on the book 'The Ghost in my Brain' - you may want to listen to it on audio or a radio interview on line. Such a great account of what it can be like to have a concussion.
hang in there. get vision assessed. conserve energy. Protect your head.
take care. and keep hopeful.
m

Danny, Your options are incomplete. You are not insane. You may be training your brain to stay sensitive by focusing on your sensitivities. Early on, the sensitivities were real. But, there should have been some level of lessening of sensitivities even if they continue at some level.

Many of us have learned ways to moderate our sensitivities so that we can slowly increase our exposure. We may have gone from no tolerance to 15 minutes of tolerance or such, but we improve little by little.

You may never get back to the old you but you can improve greatly.

And, doctors are not incompetent. They may be ignorant or not trained in the specifics to understand our struggles. They are trained based on statistical data. Statistically, most would be greatly improved by now. Very few have enough experience to know that a few will have sustained PCS.

Doctors often reject symptoms and complaints that they can not understand or validate. It may be ego or just an attempt to pass you off. But, if they do not understand or take an interest, you need to look elsewhere.

There have been periods where the sensitivities have improved but overall it's actually been a downward trend with certain stressful incidents causing it to get worse. Especially the light sensitivity. I'm honestly terrified of my future.

Last June I was able to use my phone for 13 hours a day with no sunglasses on. I could do it with no problems on consecutive weeks and was getting better. Things have declined since my brother died and medication issues and then my girlfriend left me. Being alone and unsupported with medication problems has been quite detrimental.

I don't necessarily expect a full recovery but I know the potential to get better is there just not in my current situation. I don't know what to do.

Danny,

I had no luck with docs (other than having my head put back together). They all just sat there and looked at me, just stared. I Would walk away thinking I was nuts and more questions than I arrived with.

The current eye doc I see was my second after injury. The first one apparently had no idea what to look for with head people and am I Ever glad I decided to follow through with the second one. She knows her stuff about us.

I think Mark may be on to something about reacclimating yourself to some things. I am around noisy crop dusters and associated trucks...last year I had to wear earplugs and headphones. I could tell after awhile the dread and pain of noise was getting less and I am back to just earplugs. I still pay attention to noise as I am sensitive to it when stressed but it doesn't beat me up as in the past.

Hang in there...I am 25 months and just starting to really make big leaps forward.

You do sound much better.

Bud

From what I've read, you are not insane. From what I've experienced just about every doctor I've been to has caused me harm therefore are incompetent. Aren't they supposed to do no harm?

This has happened to my daughter over the past 5 years.

However she was diagnosed with migrainous vertigo which is a type of migraine that was triggered by the accident. She had never had migraines or headaches before the accident. The theory is that somewhere in her genetics she carried the migraine gene that got triggered or turned on by this accident.

Her symptoms are part PCS and part migraines. If you tickle the migraine enough your symptoms will get worse and worse. I believe her light sensitivity, nausea, vertigo, are part of the migraine. So yes your symptoms can get worse if you continue to tickle the migraine. We had plenty of doctors that prescribed therapy, like vestibular therapy, in which she went backwards and to this day she has not recovered to where she was.

She did a two day test up at UCSF that confirmed this.

We're all just guinea pigs.

I too used to come on these boards looking for answers for my son. What I was truly looking for was hope.

I was so scared for him. It wasn't that the doctors didn't want to help him--they all really did try. They just didn't know was how to help him. There were too many symptoms, so he was a "complex and interesting case".

I saw all of the posts on here that were discouraging functional neurology. I saw them and they built my skepticism. I saw that it does not work for everybody. I know most insurances do not cover it. But I also knew that our experiences with medical doctors were getting us nowhere either. They already diagnosed him. No surgery or medicine was going to fix him. It was clear to me that this was all about getting hm the right rehab.

I researched functional neurology more. I talked to many others whom it did work for, and am thankful for them sharing their stories. Because their stories led me to Dr. Carlson. And she saved my son.

Danny, please call her. She understands this injury--diagnosis to rehab. My son went off all drugs, she did not zap his tongue or any other weird treatment (although, honestly, we would have if she told us to--maybe that is one of her therapies I have no idea).

The rehab was hard work. There was lots of homework and I had my doubts at the beginning. But then, just like she said, we started seeing improvements just about daily. She gave him small goals and honest timelines for each of those goals. She gained our trust, listened to our concerns and encouraged him at each visit. Her confidence In him was there at every visit and he sensed it. He knew she believed in him.

I am sure there are many different abilities and levels of knowledge in functional neurology (as there are with all doctors). When I read the negative comments about functional neurology, I just cringe because I wonder how many people on here are not seeking it out because of the negativity.

But call Dr. Carlson because you have nothing to lose by doing so. She will be honest if she can't help you. She was worth every second and every penny.

We are now 4 months of my son being symptom free. His confidence is back. He is just about to get honor roll for his 3rd trimester in a row. He is back to sports (non-contact--not worth the risk). He's going to be ok.