Kate

Yes Physical therapy helped me immensely. So much so that at times I find myself missing it. I use it at times for other parts of my body. I have fibromyalgia and its very helpful.

I also have had massage therapy because of tightness in muscles and it is very helpful for the neck and head muscles. So I would suggest looking for a very good massage therapist too.

Donna

Hey Shreds, I too find that if I overdo it one day, I pay for it the next. If I'm really forced to exert myself (caring for sick child, etc...) it can take me weeks to get back to "normal." I also wonder if you shouldn't be firing your neurologist and hiring a good lawyer. Your neuro is concerned with covering her butt, not healing your head.

I second Donna's call to see a PT. Mine's great. In addition to helping with pain management, we workout together twice a week. This is valuable because he makes sure I don't hurt myself and helps keep me motivated - because we all know what brain injury does to initiative. Like Coach said, the weight gain is really depressing. I'm doing my best, but forced inactivity and med side effects are hard to overcome. I also find I have weak impulse control and will eat things I wouldn't even have looked at before I got hurt.

Hockey,

I am getting a second opinion, but there are a lot of hoops to go through to get one. I also hired an attorney. It makes me mad that I have to "prove" my problems when it was their fault in the first place! Last night I worked out lifting weight and 30 minutes cardio and I have a really bad headache today. I can't miss work, so have to plug my way through the day. I always have a tendency to think there is no one else out there with the "day after" effect. Thanks for letting me know at least you are out there for me to write to.

I appreciate this website for being able to just vent about the frustrations involved in trying to get people (docs in particular) to believe you.

Remember we are always here for you or anyone to vent.

Its definately something we need to be able to do.

I am so glad that I still have this place.

Donna

Hi Coach,

I'm sorry you have been going through this for so long! PCS is frustrating enough as it is without adding the other outside factors into it. I'm so sorry you lost your job. My work just called and told me they finally filled my position after me being out 3 months. They were willing to hold my job until September 1st, but after that, they couldn't wait any longer. I'm glad they found someone so they aren't struggling without me, but it's tough to accept that anyway. It's hard to lose the roles you are so used to playing.

It seems like you've tried a lot of different things to get improvement without much relief. I'm sorry to hear that. The Nuvigil I've been on for almost a week kind-of helps my fatigue. It gives me 5-7 hours where I don't feel like I could sleep, but then there is a pretty intense crash around dinner time. I am allowed to take a 2nd one if I need to during the day, but I'm afraid I would never fall asleep. I also take Amitriptyline at night to help me sleep/antidepressant. I take Treximet when my headaches turn into a migraine and that helps a lot to reduce it back to a normal headache, but it wipes me out a lot.

Are you taking any medications to help any of your other symptoms? My neurologist is hesitant to even discuss newer treatment options. He's a headache specialist and does a good job staying on top of my case and trying to treat the symptoms I have. I think that head injuries are so complicated, and the technology to figure them out and treat them are really limited.

I'm only at 3 ½ months right now, and I worry about how long this is going to last and how bad things are going to get, but I'm glad to not be alone. It's very comforting to be in this group with like minded individuals. I know what you mean about being in a quiet place and resting. My amazing husband gets the kids on the bus for me and lets me sleep in and wake up to an empty house. I am alone until 3:45 when my 2 kids get home. As soon as they do, the stress and noise starts and my medicine crashes. That's the trouble time!

Thanks again for your encouragement and advice! Hang in there!

Kate

Work it out so that your medicine can last just a little longer than when the kids get home. This would help you a lot.

Donna

That's a good point Donna! I should take it at 11 instead of 10 probably to let it ride a little. See how the "stupid brain" makes me!? LOL! It's so funny how it's hard now to see simple answers, and I just get frustrated instead of thinking about a solution. Thanks!

I just saw a new physician last night. A PA who specialized in men's health and natural remedies when possible. His first concern was my progesterone level. Low progesterone is bad for the brain in his experience,. It has a neuro-protective ability.

I had 8 vials of blood taken this morning. Once he has my hormones correct, he will start working on neuro-transmitters. Choline and GABA are his first concerns. He would like to get me off the Paxil (me too) because he believes the side effects are worse than the benefits for an injured brain. L-Tryptophan is a possibility.

He does not use blood tests for neurotransmitters because they are unreliable. He looks for neurotransmitters' downstream metabolites in the urine. Sure beats more pokes in the arm. I went out cold this morning.

He wants to see my P-300 brain map/ QEEG. He says this can help him find where the malfunction is.

He appears to be up to date with the research and is willing to think outside the box (the box folded by the pharmaceutical companies).

Stay tuned....

To the women on this forum, get your hormones tested by someone who knows what they should be, not a shotgun, one size fits all GP or Gyn.

The cascade effect hormones can play on the brain's function can be life changing.

Men need this too but women appear to have more common problems as they cycle and use birth control pills, etc.

I'd be interested, Mark, to know if your new doctor uses inositol?

We've had great results with this for my husband, who had a severe brain injury at age two (fell out of a second story window). While as an adult, he does function pretty well, he tends to have severe anxiety in new situations. (like traveling).
Given the plasticity of the brain at the age he fell, I think he has remodeled. The only severe deficit is he has trouble recognizing faces still today.

I started him on 1-2 grams of inositol daily about 2 yrs ago, and he is really so much more mellow! Inositol helps with glucose utilization in the brain.

So if you find out anything about this please PM me. I'd appreciate it.

I use l-tryptophan myself. I think it is very helpful. I tend to have mild depression connected to chronic pain. And the l-tryptophan helps that. (take with B6). I only use 500mg/night.

Mark,

Good to hear that you are getting your neurotransmitters tested. And, your PA isn't using neuroscience to send your urine sample off too, is he? If he is, do you remember all of the flack you gave me on neurotransmitter testing a while back...?

Keep us updated on your progesterone therapy. I'm currently in the process of getting my hormones tested and balanced (if necessary), so I would be interested to compare notes with you. I'm also trying to get my adrenal gland straightened out because my last cortisol saliva test showed that mine are out of whack.

Good luck and let's hope the PA finds something worthwhile to treat.