Howdy all,

I've in and out reading about everyones adventures with PCS, and just wanted to say, yes, overstimulation will bite you in the rump when you least expect it!

Our family went to our daughter's (6yo) elementary school's skating party at a local skating rink. Didn't think much about it as we were standing outside waiting to pay, and thought, "Dude, you should have brought some ear plugs". Well, I should have brought much more... I didn't think you could pack that much noise and visual stimulation into one building, but apparantly you can. It was solid for a couple of hours. I was fine afterwards though, so I didn't think about it.

Next night (Wednesday) I was starting to get that oh so familiar foggy thinking, and slight headache. Early this morning (Thursday) it woke me up at 3:00 am with a jackhammer of all headaches ....thank goodness for Amerge. Took one and went back to sleep, thankfully.

On a positive note, I've noticed that the time between overstimulation event and PCS symptoms has been increasing and that both intensity and duration of symptoms has been decreasing, so I'm happy about that.


Just to note, I'm just about 2 years post concussion - syncope after finishing my 9th marathon due to severe dehydration.

This is just what I needed to hear, someone who is past a year with similiar symptoms still. I keep thinking things will get better at some point now that I am 14months out. Like you, I notice some improvement this far along, but it still amazes me when it happens. Setback is my middle name right now!

Glad to hear things are improving still for you, it's good to acknowledge what IS going well!

Yes the overstimulation thing is so true! I find it especially hard not to have situations like this with two young kids.

As you can see, I am new here as well. I have already fallen in love with this site. It's a great reminder for me that I am not alone with this. It is just really hard sometimes for me when no one that I know, whether it be family, friends or doctors even, understands what this is all about.

-Just short of 3 and a half yrs of PCS.

Seems like folks in this thread are one year or more. I completed 2 years (nothing to happy about) and some symptoms improved and some got worse.

My days also has very drastic ups and downs and no way I can predict even though I do exactly the same thing everyday including going to bed, eating etc.,

My main disabling symptoms are persistent dizziness (weak legs, near fainting etc., gets worse with any stimulation - non-vertigo), facial pain, nausea and fatigue.

Seems like sunshine is 3.5 years close and can you please tell what are your main symptoms? How many of you has gone in a flight and suffered (or didn't suffer)? Can you all drive comfortably?


Thanks.

PCSLife,

I would suggest having someone watch you sleep. I bet you have very different sleep periods on the nights before your bad days. Lack of REM sleep will leave the brain fatigued from the previous day. Plus, over-doing it can sometimes take a day or two to hit you with a bad day.

Any gasping for breath or slowing of breathing will indicate sleep apnea can be exacerbating your PCS. Neck position can cause breathing irregularities.

Sleep clinics do not help much with this because they only observe one night. It takes many nights to begin to understand the irregularities of breathing.

For those who can afford it, you can buy pulse oximeters that you wear while sleeping. They can record your O2 blood levels and wake you if they fall below acceptable levels. They can also be rented with a doctor's prescription. They cost about $250 and up to purchase.

I'd like to get one some day. $$$$$

Mark,
Thanks for the suggestion. I always thought about sleep disorder. You are right about sleep study. One night is not going to be much help. At least a week would be better. Besides that a new place with all the electrodes and some one watching itself makes it difficult to sleep for PCS folks.

Pulse oximeters sounds like a good idea. I ask my doctor next time. This reminds me when I was at the hospital 2 years ago for 3 days (late on set of PCS symptoms and actually that is when I felt like my world collapsed) they kept me waking up one night and moved to a different floor for better monitoring. When I asked they said my heart rate was going really low. To begin with my heart rate is always low and doctors ask me if I am an athelete ( and I am not). I used to do only basic exercise and try to be healthy.

With TBI/PCS seems like if we are unlucky it affects very many things and no one knows what is affecting what and we have to figure out ourselves. What a mess?