Thanks in advance for any helpful insight!

I experience PCS as a result of a car accident on 3/8/11. For 3 months I went to a neurologist who told me, just rest and it'll get better. After some intense migraines and no help from neuro, a friend suggested I see our University's Concussion Clinic. I went there two weeks ago and was very pleased with my experience. They referred me for vestibular therapy and also to a pain management group to try to address the migraines.

During the vestibular evaluation, the Dr. noticed that I am having some major vision problems and is referring me to a neurological opthamologist for evaluation. (I had 20/20 before my accident.) She also is referring me to a PT for an evaluation of my neck and some therapy, as she did a physical exam and fears there is a lot of trauma in my neck that hasn't been dealt with. However, I have to wait until I make some progress with the vestibular therapy first to start this, because as of right now, moving my head and neck makes me really sick.

I have my first real therapy appt. this Friday. However they gave me 3 exercises to do daily at home to start working on my vestibular system. They told me that if the exercise made my symptoms increase to greater than 5 out of 10, I should take a break, cut back, scale back on the number of reps or the time I do them, etc.

However, after doing just one exercise, which I've scaled back as much as I think I can, I'm done for for a couple of hours, where I have to lay on the floor to feel grounded and I'm nauseous and dizzy. As I had gotten into a comfortable groove before starting therapy, where I could at least partly function, I decided to try doing the exercise later in the day so I can at least feel partly "normal" for some of the day. However, in doing them at night, my brain is exhausted and I really struggle to do the exercise and the symptoms are even worse than they would be if I did them early in the day.

I'm at a loss. I know I am supposed to scale back if it is aggrivating my symptoms, but I dont' want to stop completely as I saw this as something active I could do in my recovery. I still want to make progress.

My question is, has anyone else who has tried vestibular therapy experienced this at the beginning? I expected it to be challenging, but didn't expect to feel like garbage for most of the day after.

I'm just so scared that they are going to tell me I need to stop completely and wait for more healing of my brain... this was atleast something I could feel like I was actively doing to aid my recovery.

Any thoughts/experiences would be greatly appreciated...

Amy,

You said <I'm just so scared that they are going to tell me I need to stop completely and wait for more healing of my brain... this was atleast something I could feel like I was actively doing to aid my recovery.>

Why are you afraid of getting help? If they understand your symptoms and condition, I would think you would be glad someone is getting it.

Mark-

It's not that I am afraid of getting help. Rather, that the Dr. I saw at the clinic who referred me for the therapy said that once they did the evaluation, the would know whether I was ready to start therapy or if I really struggled they may want to wait a little bit longer to start for my brain to heal some more.

This concerns me, more on a psychological level, because my previous treatment for my symptoms had be just resting, which to me doesn't feel like I'm doing anything to get better. Starting these therapies made me feel like I was doing something actively to work towards my recovery. However, if they are making me so sick and the therapist feels I need to wait more time for my brain to heal before I can start doing them, I feel like I go back to doing nothing to help myself.

Mindy

Just a little thought--we had a major car accident, in which I broke a bunch of bones, but no concussion (my husband got a serious one). Sppnt a couple weeks in the hospital, during which time I developed room-spinning, nauseating dizziness whenever I turned my head to the right, or sat up or laid down too fast. Well, I got whomped pretty hard, right? So they all told me.

Six months I put up with this. Six months during which time I saw many different doctors, including an ENT (husband had some hearing loss, thought daughter may have too, so I went to get checked, for hearing loss, she brushed off the dizziness as "You got hit pretty hard".)

At about six months of this, I had to take amoxicillin for a sore throat. During that first week of amoxicillin, the dizziness went away. Completely. Six months of suffering, cured accidentally by less than $5 of amoxicillin. I guess no one saw the infection in there because they had a bigger, better excuse for it (after all, I got hit pretty hard).

Now, this is probably a fluke, it probably isn't the situation in your case, but next time you go to any of your doctors, make sure they really, really check for something this simple. Can't hurt to tell them to, you never know what they're glossing over because they're focused on something bigger.

Resting IS doing something. It's letting your body heal. It's taking proper care of yourself. Believe me, I know it's hard and it feels like doing nothing and it's frustrating as hell to have to just sit there, just lie there, (still doing it, long time later, my poor body just didn't take "being hit pretty hard" well). But it's doing the best thing you can for yourself.

Also, I had some eye coordination problems before the accident, but getting whomped really messed things up, they did settle back down after a couple of months. Again, just give it time. (sorry, know it's not what you want to hear.)

I find growling, actual out loud growling, when having trouble with doing what I want, helps. Lets the frustration out. Makes the people around you a little bit nervous. Can be fun.

the brain is not a muscle.you can't force it back into shape .lord knows I have tried.this is not something you can just work through the pain.I'm not a patient person but if I don't stop when my brain says to. it'll take over an shut me down. So if the boss says to rest you rest. buy boss I mean your brain. I don't like it but it is what it is .so there is no choice but to accept it . Good luck.

Hi,

I'm experiencing dizziness from PCS and I have a thread here: neurotalk.psychcentral.com/thread153407.html

I have been doing vestibular therapy (3 sessions since the beginning of June 2011).

My symptoms are very mild and have been from the beginning:

1.Initial injury
- sore, no unconsciousness
- headache - resolved with Advil and sleep (1 day)

2.Migraine - 1 episode, 2 days after head injury
- vision tricks (hard time focusing)
- numbness in right hand and right side of face
- slurring words
- all these symptoms resolved overnight

3.Dizziness - started about a week after
-just lightheadedness
-made more intense when moving around, looking up down
-more intense when driving

I'm still experiencing the dizziness, but less so now. From time to time throughout the day, and when stopped at red lights in the car.

I saw my family doctor last week and he didn't think the vestibular therapy was doing anything. He said that time was the best healer. I'm currently seeing an osteopath to see where that goes.

I only have enough $$$ in my benefits for one more visit for vestibular therapy, and I'm not sure if I want to spend my money on something that doesn't work ($90/visit).

To winic1, I'm intrigued about this amoxicillin. You said you had a sore throat. Before you got the sore throat, were you just experiencing the dizziness or were there other symptoms too?

Had any of the doctors you saw checked your ears? My ears have only been checked by family doctors (2 or 3 different ones - none saw anything).

I have wondered if I just have an ear infection with no pain or other symptoms other than dizziness.

Wouldn't that be a nice solution to my dizziness!


From Winic1:
<<At about six months of this, I had to take amoxicillin for a sore throat. During that first week of amoxicillin, the dizziness went away. Completely. Six months of suffering, cured accidentally by less than $5 of amoxicillin. I guess no one saw the infection in there because they had a bigger, better excuse for it (after all, I got hit pretty hard).

Now, this is probably a fluke, it probably isn't the situation in your case, but next time you go to any of your doctors, make sure they really, really check for something this simple. Can't hurt to tell them to, you never know what they're glossing over because they're focused on something bigger.>>

I had the dizziness, which was definitely triggered by certain movements, turning my head to the right, laying down too fast, sitting up too fast. No ear pain, no sore throat. Did have mysterious dry mouth, which started with the accident. When I was upright, it was fine, gravity would keep enough saliva forward, but whenever laying back a bit, or more, my mouth was so dry. (actually, still is. why? well, I got hit pretty hard...) The dry mouth is what eventually caused the sore throat, it wasn't really my throat, a saliva gland under my tongue near the back got blocked due to lack of saliva and was looking just enough infected at that point that the doc put me on the amoxicillin. I noticed that, by day 7 out of the 10 for the pills, the dizziness was completely gone. And has stayed gone.

I was in the hospital for 2-1/2 weeks after the accident. Saw anywhere from one to four doctors a week after that for several months. Bunch of different kinds of docs saw me and checked my ears as part of just generally looking me over. Even went to an ENT and had full hearing testing as well as doc visit (I can hear people talking, the tv, etc, I just can't understand them if there's any background noise around. And when I hear noises--cat meows, something goes clunk down the hallway--I hear them in the exact opposite direction of where they really are--in front is behind, to the left is really on my right.... Why? They dunno, I got hit pretty hard....)). Nobody saw anything, even the ENT. When I told them what had happened with the amoxicillin, they all went "hmmm". But my husband can tell you it's true.

So I don't know exactly where or what the infection was, but if something goes away forever after a round of amoxicillin, it's pretty darn clear that's what it was. Regardless of me "getting hit pretty hard". (btw, they stopped using that as an excuse for everything when I started saying, "the next person to tell me I got hit pretty hard is going to GET hit pretty hard".)

When I was at this phase of recovery, I found playing SuperBetter to be VERY helpful. If I was lying quietly and breathing, I could think to myself: I'm earning 20,000 points!! It definitely helped me through the resting phase of recovery.

My SuperBetter blog is at http://eowynridesagain.wordpress.com

I'm not actively playing (counting points) any more, but I do still do most of the daily activities that I got points for. It definitely helped me get into a brain-friendly routine.

Hi, I did vestibular therapy. But not because of a accident.

But I have to tell you I had lots of trouble during the testing.

And even though we stopped at times during the testing, just
so I could get my dizziness under control.

Or try. I would then do a exercise again. I did some simple
eye coordination exercises at home at first. Nothing else
for a long time.

I don't know what they have you doing. But the exercises might
be the wrong ones for you.

Try finding something to look at. Like a picture of a A or B.

And put it on a center area. Then just sitting down to start.

Take your head, and go back and forth. It will get you dizzy,
but you can start for 15 seconds at a time. And go for longer
as it gets better.

Donna

I'm on week two of therapy now.

After some disastrous relapses each time I did the exercises, I called my vestibular therapist and they adjusted the exercises over the phone to a level I could tolerate.

I had my first therapy session two days ago and seem to have made a little progress since the evaulation. They worked with me on the exercises I was struggling with at home and gave me some more modifications to help make them easier and also showed me how much dizziness is okay, and when I've gone too far.

I'll let you all know how the next couple of weeks go.

Thanks everyone for your responses! It really helped me feel a little bit better about everything and that I wasn't weak, just because I was struggling.