Sounds like you found a specialist with skills and a practice similar to a Rehab and Physical Medicine specialist. The integrative approach will be great.

I will be watching to hear how she does. It also sounds like her hubby has been given the confirmation that he needs to be supportive.


My best to you all.

Mark, Her husband still thinks she will miraculously wake up one day very soon and be 100% recovered. Last week he even asked the original neuro how to ween her off the gabbapentin if this should happen. The neuro was surprised and said that no one had ever asked that question.

I do think that today's appointment will be another reality check for him. I don't think he has fully processed that this could be a long journey but he is getting closer to that understanding. He is being supportative. He wants his wife back. He is trying to find a way for that to happen. Full acceptance at this point in time is probably not a good thing anyway. His desire to "fix" her will drive him to try all possibilities.

He continues to push me away as he always has. But he has gotten his parents and sister more involved. They are helping with driving the kids to their activities. His sister took them overnight this past weekend so he could work. That is good they do live closer than I. As long as my daughter gets what she needs and my grandchildren are happy and cared for, I can keep my distance.

One thing that everyone must realize when dealing with PCS people is that this could end tomorrow, but it could be years and years until this is gone. For me, I kept doing stupid stuff because I was feeling better and thought that it was almost gone and thought that it would go away soon. It wasn't until I started doing a lot of private research that I found that I needed to get ready for the long haul.
Surprisingly this knowledge helped me to become more at peace with my PCS. Now, I do admit my parents and friends still have trouble accepting that I have almost constant pain, but I try to play it down for them, because they don't realize that although this is tough it is the way it is. I have an easier time with it than they because they are struggling with a horrible idea while dealing with the reality is somewhat easier...I know exactly how much pain I am in and I know exactly what will hurt me more and what will hurt me less.

I don't know if I am making sense because today is a very bad day...Oh, well such is life.

Good luck!

OK my daughter called and told me about her visit to the new doctor. He is taking her off Gabbapentin. He put her on two other perscriptions She couldn't remember their names but thought one was topamax.

He is also sending her for a sleep study. He believes her sleep patterns have been disturbed by the head trauma and since there is a familial history of central apneas he thought it a good idea to investigate this.

He told her that she had to stop using the sunglasses. He said that she is now training her eyes to be photo sensitive. He also told her that she had to start retraining her balance center to help improve the nausea and vertigo. She is to do this by sitting on her bed and gently falling sideways into the pillows five times on each side a couple of times a day.

I'm not sure what I think of this. I will just wait and see if it helps her. I'm sure there was more to it that she didn't process. She was in the car on her way home and only spoke to me about two minutes. Her husband was driving so he couldn't clarify anything she was telling me.

She goes back in a couple of weeks when she is on all her new meds and off the gabbapentin entirely.

The sleep study sounds like a great idea. It is rare for a doctor to suggest one so quickly. Getting off the high dose of gabapentin is also good.

I am eager to see how she does without the sunglasses. I have never heard his explanation of training her eyes to be photosensitive. For me, it is not the brightness that is the problem as much as it is trying to sort through the sensation of so much to see. The bright light over-powers my ability to process the other visual images.

The Topamax is an anti-epileptic but is sometimes prescribed for head aches. It will be interesting to see what it does for her.

The vertigo and nausea exercises are interesting. Getting the inner ear to be desensitized to movement will help. Never heard of it being done this way.

An OT wanted me to practice putting my head between my legs and then back up. She misunderstood my complaint about moving my head as vertigo.

I don't get vertigo. I get a spaced out feeling from moving my head too fast. I don't get the dizzy/vertigo feeling. Just a mental confusion that takes a while to resolve. The pros don;'t seem to understand how this can happen. They tell me that the head movement is not severe enough to cause a concussion like mental confusion.

Hope this doctor has got the right ideas to help her. It sounds like she is off to a good start.

Mark does this mental confusion with rapid head movement happen even when your eyes are closed? Just wondering if it has soemthing to do with your visual processing.

I'm sure my daughter is going to be very uncomfortable without the glasses for a while. Today is my day to go over there but I'm not doing well myself. Will probably wait till tomorrow to drive down there.

I am convinced that the head movement is like a sub-concussive impact. My brain is just hyper-sensitive to any quick movement. I can get the taste of metal in my mouth from a quick head movement, or the feeling that I have been punched in the nose. I know that it is not vision related. I have learned to turn my head with my shoulders. It slows the rate of movement.