good neurologist, vestibular rehab and brain supplement
 

I'm four months into this pcs business and finally found a fantastic neurologist who listens! :) I'm really happy after having had a super bad experience with another one who told me I am a hypochon. Amazing how nice it is to be taken seriously. Anyhow, this new guy is testing my hormone levels, giving me some shots of prednisone and a painkiller in my head for help with the headaches (mine still hurts a lot, is tender where I was injured) and getting me set up to begin vestibular rehab for the dizziness, nausea, balance and movement issues. He said the vestibular rehab will make me feel worse at first but then will help my brain "rewire" and should help with the symptoms relating to movement I'm having. Has anyone had any experience with this? Any advice? What should I expect?

Second item, a friend recommended a supplement developed to help with brain issues called equilib, info at website with same name as supplement, won't let me post the link. Has anyone heard of this? Does it look useful? I know some of you know a lot about supplements for brain function and healing. It's pretty expensive so I'd love some opinions before I buy it. Thanks!

This is Centrum Silver (for mature adults) formula, + some other things.

There is nothing harmful in it. But I always have issues with products that are composed of "proprietary ingredients".
A general 504mg of a MIXTURE of several things, bothers me alot. There is not amount of each ingredient here listed...so you don't know what you are getting at all..how much of it.

Inositol, grapeseed extract, glutamine all have to be taken in at least 500mg-gram size dose EACH. So you are in reality paying alot for very little.

In essence there is not enough of the most useful items in this product. You can buy inositol powder on iherb.com 8oz for $13.00 which will last you at least 6months to a year.
The typical dose of grapeseed extract starts at 100mg minimum.
Bioflavinoids can be had from a fresh orange that you leave some of the white pith from the peel on...when you eat it.
Most of the Vit C and other bioflavinoids are in that white pith.
I have seen claims that 80% of the Vit C in an orange is THERE.
Glutamine--- 8oz of powder = $13.00 at iherb too.
http://www.iherb.com/Jarrow-Formulas...owder/186?at=0

I get our generic Centrum Silver at Costco -- 400tabs for $15.00
(over a year's supply).

There is nothing magical in Equib... the only magical thing is the PRICE.

Products like this are designed to appear "good" , with lots of
impressive sounding things. What they don't tell you is that they are basically very weak and rely on your placebo effect capacity.

EFAs, (essential fatty acids) are very useful for people with head injuries. And there are NONE in this product.

Thanks for the info, I knew someone would have a good opinion about the supplement.

I whole heartedly agree with MrsD. The push for autoship is a key indicator of the value of this program. Autoship is a way of sending and charging you for stuff long after you have stopped finding a value in it.

Many autoship programs take an act of Congress to discontinue.

The basic ingredients are at such low doses that I would not consider them worth anything. The only ingredient of any consequence is the dl-phenylalanine. This is not something to take without good medical supervision as it is intended to effect norepinephrine levels. If these are out of whack, self-medication is not the correct response.

At $1.30 per tablet, this is a very expensive pill. It does not say how many pills are a usual daily dose. I would bet they recommend three or more per day.

I just posted my daily regimen under "Waste of's" thread. I get most of this regimen at Costco and only spend about $1.00 per day for the whole 20 some pieces. Costco sells a good Multipack of 7 pieces that I add to with more B's and such.

My decades of experience with my regimen shows it to be very effective. My new physician has tweaked it just a bit since I started it at the recommendation of an MD back in the 1980's.

The Equilib appears to be intended for depression and anxiety.

Thanks for weighing on on this Mark, I will check out your previous post on supplements.

Becca
I'm so glad that Mrs. D knew about the supplement. She is very good with
this part.

I have done the vestibular training. I have a balance disorder along with
having had pcs. I have to say it was one of the best things I ever did.

It helped me very much. I had good Physical Therapist that helped me with
this. I would also suggest that you make sure that if you find its really
making things worse that you let the therapist know. It really shouldn't get
that much worse in the beginning for long. They start with simple things,
to see what you can do and work up to things that are harder for you.

I hit a wall at a point and had to stop doing the exercises. But I had to stop
because it just wasn't doing me any more good. But the way help it did
me was so good that it has made my balance, dizziness, and other things
so much better. That I have to say I would do it again.

If after you start you have questions please ask.

Donna

I'm about a month into the physical therapy. It hasn't helped at all with the dizziness and eye issues (it is suspected I might have torn something in my inner ear, going to see a neuro-otologist about that soon), but the balance training she is having me do is helping. So hopefully I'm getting better at catching myself when I start to teeter...

I'm so glad it is helping with the balance issues.

Honestly this was one of the best things I did. I have dizziness still
but I have learned how to wait it out.

Donna

I've been learning to "wait it out" as well, I stumble less often! ;-) Thanks for your insight. Is your dizziness from PCS or something else? How long have you had it? Anything ever help? I'm starting to feel more normal cognitively (after 6 mos) which gives me lots of hope, but no change with the dizziness, eye and ear stuff.

So glad to hear your feeling better! My daughter also seemed to do much better cognitively around 6 months. She is at 8-month mark right now. Headaches are way less severe and less frequent.

My daughter has some nystagmus (eye jumping) which seems to only appear now if she allows herself to get overly tired or overwhelemed by worrying about homework or grades or having too many things to do. We are still not stressing about her grades and her activities are fairly limited for a 16-year-old, but can't stop her from worrying somewhat.

When she gets a headache or nystagmus now I really have to "talk her down" from a panic. She says things like, "I thought this was over". I spend a lot of time reassuring her that things are getting better but that she is going to be more susceptible to headaches now and that's ok. The panic really exacerbates the symptoms. You might need to write down a little mantra for yourself when you have bad days to remind yourself that things are getting better.

The ups and downs of PCS can be brutal, especially when you start seeing the light at the end of the tunel. Sounds to me as though you've made lots of progress and you've got a great team of physicians helping you along. All the best!