I am the same way guys...can barely get to my mailbox at the top of my driveway without feeling symptoms...head feels weird.

new symptoms when talking, reading, computer, is all this facial tongue, etc tingling -- why????

I'm back from Buffalo. Here is the short version: I'm no longer suffering from PCS. My symptoms are mostly caused by an upper cervical neck injury. Dr. Leddy is a really nice guy and a fellow cyclist to boot! He also said that 90% of the people he tests have problems due to neck injuries, not PCS.

The appointment consists of a meeting with Dr. Leddy, the "treadmill" test, then a follow up to get an exercise plan.

The first meeting with Dr. Leddy is just to get your history, background and to do those "touch your nose, follow my eyes" tests I'm sure you've all done a hundred times.

Then they take you into the next room where a physical therapist tests your balance and physical exertion. I had an additional test which I"ll explain later.

The balance test was fairly standard. Stand with your feet together, hands on hips and close your eyes. Stand on one foot, hands on hips, eyes closed. Stand with one foot in front of the other, hands on hips and eyes closed. Now repeat all three but while standing on a wobbly piece of foam. I had success with only the feet together test, otherwise I had trouble with the rest.

The treadmill test is simple. You walk, every few minutes they increase the incline, you stop when you are maxed out or your symptoms stop you. I was hooked up to an EKG, blood pressure and heart rate monitor and I also would rate my perceived exertion every time the incline was increased. They also tracked how straight I walked using pressure sensors in the treadmill.

I would imagine if any of these measurements changed in a strange way they would pull the plug. For me this didn't happen -- I hit a new max heart rate of 210 (always thought it was 205) and a 19/20 on the perceived exertion scale and then we stopped.

After this they took me to a wall with a target on it. They took a laser pen and attached it to the side of my head with a bandage like the borg, (star trek joke). I had to point the laser at the center of the target using my head. Then with my eyes closed move my head all the way to the left and then back to the center of the target. We also went up, down and to the right. I missed far to the left every single time.

Then the therapist took me to a room and poked and prodded parts of my neck and asked if it hurt, (yes). Then he checked for mobility. Then he told me he thinks my issue is an upper cervical neck injury.

I followed up with Dr. Leddy who then cleared me to exercise as much as I wanted and to start physical therapy for my neck. If I had PCS still, the workout plan is pretty simple. They have you exercise at 80% of the heart rate that exacerbated your symptoms. I don't know how often or how long -- sorry, I should have asked!

I'm still getting migraines weekly and I am easily overwhelmed in noisy places. Both are getting better with time, but I don't really see how those could be related to a neck injury. Dr. Leddy seemed to think they might.

Could you duplicate this test on your own? Probably. Would it be better to have it done by someone that has seen 100's of people take the test? Certainly. For example, I tried exercise on my bike on the trainer only two weeks ago and stopped after feeling dizzy and light headed. Now I can't figure out if it was concussion symptoms or I just aggravated my neck by getting back on the bike.

Is it worth flying to buffalo? For me it was. I still feel a little crappy, but now I know I can go back to work and normal life without fear of hurting my brain even further. Rest alone is simply not going to help me fix my neck.

I think if you are past the 2-3 week point it might be worth jumping on a treadmill and seeing how you do. You could at the very least measure perceived exertion, heart rate and blood pressure with a friend helping. Or just go by how you feel. I suspect if you have problems still it will be pretty obvious.

Worth noting: the test itself cost $250 and is not covered by insurance.

For what it's worth, these are my long lasting symptoms. Other symptoms went away in the standard 2-3 week time frame.

-- Trouble falling asleep

-- Wake up several times a night, very shallow non-restful sleep

-- Migraines (about once/week)

-- Pressure, sometimes pain in the back of my head and upper part of my neck

-- Sometimes pressure/tingling in the top of my head, or it can feel like a slight headache

-- Vertigo, (in the morning only)

-- Dizzy/light headed (used to be fairly constant, but now gets better throughout the day and is worse in the morning)

-- I am easily overwhelmed. In the beginning being in a room with more than one thing happening at once was impossible. Now I can handle the airport, but a noisy, crowded bar is still too much.

Dr Leddy was good at identifying the upper neck injuries. This is missed in so many cases. I am not surprised he discounted any PCS.

Your current symptoms may not be PCS related but I doubt it. More likely, they are due to PCS but are magnified by your neck injury and inflammation around the important arteries that oxygenate 30% of your brain. This will make good sleep elusive thus magnifying your PCS symptoms.

I bet you do not breath properly when sleeping. This is very common when there is an upper neck injury. Other lower body and extremity symptoms can be caused by this lack of good blood flow to the brain stem and surrounding areas.

You will be likely helped by finding a way to position your head and neck to be supported after you fall asleep. the lack of muscle function while asleep allows the neck and head to fall off into contorted positions. For a healthy neck, this would not be a big problem. For an injured neck, the inflammation that sets in magnifies the neck injury by constricting the arteries.

Try reclining with a focus on straight neck and head position. If when you relax, your head changes position, find a way to support it so it does not move. If possible, try to lay or recline in this position with an ice pack in place. Use the synthetic ice packs that have a mushy form in a sealed plastic pouch. They will retain their shape after they have lost the cooling effect.

If you can fall asleep like this and get some good rest, you have a answer to part of your problem. Getting as much sleep like this will change your life.

I am an expert in sleep positioning. I must have good head and neck support or I never get any good restorative sleep. I have been struggling with this for 12 years. I either have a good to great night's sleep or a miserable one. Nothing in between.

If I wake up struggling to sleep good, I do better to get up and go do something until I can go back to bed and fall asleep in the correct position. My wife knows that if she sees me struggling, she is to wake me up and tell me to go sleep in my recliner. At least she will get the rest of the night to sleep.

Hope this helps.

My best to you.

Thanks Mark. You're a godsend for the PCS community. I'm looking forward to trying a new head and neck position when sleeping tonight.

That is great! I'm glad he was able to help you. Thanks for all the info. it's very helpful.

Unfortunately, my symptoms aren't similar to yours so I don't think I have a neck injury and won't get better that easily, but this is great info on the exercise regimen. thanks.

I'm almost, (but not quite :-) disappointed that I didn't get to participate fully in the exercise program just so I could share details and results with everyone. I think it's pretty simple -- you just exercise 80% below the threshold determined during your test and then retest after a few weeks.

I think if you can exercise at all without making things worse it's probably worth it. Even just slow walks outside might be nice. The few times I got on my bike improved my mood quite a bit!

Of course Dr. Leddy wouldn't even see you unless it's been at least 6 weeks, so that's probably a good rule to follow in terms of determining when to start physical activity again.

Mark....I've been sleeping a rediculous amount since I've asked for lunesta. I fall asleep about 10pm and sleep until 7am...then go back to bed when the boys go to school about 9 am until 11 am...and I'm not seeing any difference in symptoms. I actually feel worse all week!

What's going on here? Should I try going back to the chiropractor??

I also think something is going on with my vision lately? Could that be possible that is getting worse too?? I'm getting more facial tingling too!

I just don't understand the increase in symptoms...any ideas here??

Hello,

Thank you for posting this thread.

I was surprised at your upper cervical diagnosis vs. PCS.

I am at PCS 18 months now and have never been checked for an upper cervical injury.

Both docs that i went to manually assessed my neck but that is all.

Should there have been any tests done specifically for this?

I would like to check this out. Don't want to think later that I should have done this.

Any advice? Thank you.

The test that chitown did with the laser light was basically to measure range of head rotation. A good PT can do the same or even a chiro. This gives a good indication of injury although it is not the definitive test. You can still have a neck injury while having full rotation both directions.

The six weeks post concussion/injury limit tells a bit about Dr Leddy's concussion protocol. He sounds like the classic sports medicine doctor rather than a fully informed concussion specialist. He has just developed some very good systems for diagnostics and returning the athlete to active exercise and finally the playing field.

wtrpk,

The Lunesta may be helping you sleep but you may not be having complete REM sleep. Or, if you are not getting good oxygenation to your brain during your sleep, the sleep will leave you with less that a restored feeling.

I routinely can take a 2 hour nap after breakfast, especially if I spend some time on the computer.

Personally, I am hesitant to use sleep causing meds as they can mask the true sleep difficulties. My gabapentin does not make me sleep, it lets me sleep. I choose to fall asleep with it when without it, I can't choose to fall asleep.

You may need some serious time sleeping for a few weeks to allow your brain to start recovering. Think of it as if your brain is in debt. Before you can get healing asleep, you have to make up for the debt.

I spent days sleeping early in my recovery. I could easily sleep 16 hours a day. Once I learned to moderate my stimulation, I was able to sleep less and less. It took me quite some time. When I learned that I was not breathing during sleep, my corrections changed everything.