Today marks my daughter's 7 month anniversary with PCS.

Of course the first thing we learned is that there is no "normal" when it comes to PCS. Nevertheless, I am wondering if any of you notice a pattern of symptoms subsiding.

Right now she has very sporadic headaches, usually very short "stabbers" just two or three times a week. She hasn't asked for pain reliever in a long time.

She still has more fatigue than usual, occassional lightheadedness, occassional nausea. Memory/concentration seem to be improving...she was able to memorize Marc Antony's speech from Julius Caesar without any headache-causing effort so that has to be a good sign.

She just cut down from 20 to 10 mg Elavil, fish oil and a multi. No other meds. We are awaiting results of blood tests for thyroid, etc.

I'm not complaining...she's doing really very well all things considered. I'm just curious to know if anyone has noticed patterns. I'm also curious to know if there are any additional diagnostics or treatments anyone would recommend. I keep thinking there might be that one key element I am missing that might help her. Vision/eye symptoms have resolved, no balance or dizzy issues.

OK...I'll be honest...I want someone to say, "Yeah, I felt just like that one week before my symptoms disappeared forever!"

No patterns but I think my improvements have been none and then gradual. Non existent for the first several months (I'm 14 months in now) but then started to notice some symptoms easing off after about 9-12 months. Seemed to plateau thereafter but I think another symptom may have began to reduce lately, need to put that to the test though.

I really hope she continues to improve

Dear PCSLearner,

I like the question and I think that the first response that there is no "normal" is probably on the mark.

I don't believe that there is one experience of post-concussion syndrome any more than I believe that there is one type of brain, one type of accident or one type of disease. But perhaps there are some common themes. Personally I believe that inefficient recycling of excitatory neurotransmitters might be something that some people with this "syndrome" have in common. Another common theme might be that the older you are the slower healing is. (So that part is good for your daughter anyway.)

My symptoms sound a fair bit different from your daughter's so I suspect that the type of injury might be different, but for comparison here is my pattern:

First few weeks
nausea, headache pretty much all over the head (tight band across top of head, foci of pain varying from top of head to back to forehead, odd touch sensations down sides of head, fogginess, dizziness, difficulty organising, extreme fatigue, persistent neurological spasm of some kind.

After 1 year
Lessening of symptoms

After over 2 years
All symptoms somewhat improved.
Headaches improved on the left side of the head before the right, so there was a time when foci of pain were mainly on the right side. Now the stabbing type of headache has almost gone and I am left with some dull aching over the entire head. Fogginess has improved, Fatigue has improved. No odd touch sensations down sides of head. Nausea only occasionally not all the time. Still have difficulty organising certain things. Fatigue has improved but still more tired than a well person. Still have neurological spasm, perhaps reduced in frequency.

I would love it if these symptoms were the ones that you get one week before complete recovery. However, I suspect that it is more likely that any further improvements will be the very gradual ones that I have experienced so far. Either I will just get to a plateau and always have some problems or the symptoms will gradually fade away over a long time.

It would be nice to hear from people who have made complete recoveries, but I suspect that once that happens they leave this site and never look back.

If I make a complete recovery, I will at least visit and post what happened. It would be nice for others to know what the future might hold.

CS

I was wondering if you could be more specific about the fogginess feeling you had? I am a little over six months with PCS, and sustained the concussion through playing lacrosse. From day one I have had this foggy feeling, but I have never had any issues concentrating- in fact I got my best grades last semester while this was all pretty fresh. I've tried to explain it to people/doctors and they can't seem to figure it out. I always have this sensation like when you first wake up in the morning and things aren't entirely clear. Now it is worse at certain times, but nothing consistent to say "well this is making me foggier!". Like I said, it doesn't hinder thinking/focus at all, but its a weird sensation and sometimes I wonder if it will ever subside?

Hi PCS Learner: I agree with the others that there is no exact road map to recovery. My head injury was very serious and I've accepted that I will never return to "normal." That said, I have still made more progess than any of the doctors said I would. More importantly, I am still making bits of progress - which they said was impossible. I take the best care I can of myself and I have fought hard to gain access to behavioral and cognitive therapy. The main thing is that I refuse to give up.

Hi Erica and welcome to NT! We all know what you mean when you speak of the "fog." While I'm glad to hear that you have been able to keep up your grades, I caution against being too quick to assume that all is well on the cognitive front. Unfortunately, we TBI folks are often not in the best position to judge our own performance. I knew I was having some issues, but until I had my neuro-psych testing, I had no idea how much things had changed.

Let's hope you've just got some brain fog. One way to help quantify it for the doctors is to keep a symptom journal. When the fogginess seems worse, write down what's happening: Where you were? What did you eat? Did you drink alcohol? Were you exposed to loud music or crowds? What were you doing? What were you doing the day before? etc... Doing that may help you find some triggers. For example, many of us find the fog rolls in with fatigue. I might get away with doing a big task - but watch out the next day.

Cheers

Hockey- thanks for your reply. I'm so glad that I found this forum. It really has been great to tell my story/ask questions and read about what other people are going through.

I have so many questions, and they keep coming to me randomly, hence the sporadic posting! BUT, those of us struggling with PCS are supposed to abstain from alcohol and anything that makes our symptoms worse, right? My question for everyone out there is how have you coped? I haven't had fun in months. All of my friends go out and drink every weekend like any other college student - the most fun I have is reading a book or watching tv. For those of you who have had PCS for years, do you not even exercise? Exercising has been a HUGE part of my life and I just don't know how much longer I can go on like this. I've mentioned in other threads the buffalo study, which introduces pcs patients back into regulated and supervised exercise. But what if it doesn't work for me?

These are just all things that run through my mind with all the idle time i have on my hands. Any thoughts/words of advice/stories/etc. would be greatly appreciated.

Hi Erica.

I have had PCS for 8 years. Stress does being back the symptons - even deciding what to have for dinner when there is more than 2 options manages to "press my buttons". I have had to learn to stay calm and now often walk away from any possible disagreements and avoid having to make decisions when it is possible.

On my bad days it feels that I am losing some of "myself" when I walk away from stressful situations - especially as I was alway the one that was in control and so jolly perfect and of course always right!

I do exercise, but have to avoid any type of exercise that is jerky or involves putting my head below heart level. I am now able to walk at a fast space for approx 6 km, if I over do it I incur the most awful headaches and vomitting. I have tried to play tennis - too jerky. Also was wanting to get back on a squash court but my husband said that he would assault anybody that played against me - I admit that playing squash (think it is similar to raquet ball in the US) would be putting myself at risk of another head injury.

I belonged to a gym for quite some time - my personal trainer worked around the PCS.

Regarding the alcohol - I find that I can't drink anymore - it simply isn't worth it - one glass of red wine equals instant headache and over heats me - my thermo regulation no longer regulates! You can still go out and have fun and not drink. I also calculate how many days it will take for me to recover from a noisey night out and then decide if it is worth it. I know that you will miss your friends - I certainly have found out who my genuine friends are.

Maybe you could consider staying home and not aggravating your PCS an investment in your future! I sure wish that I had stayed home and kept my head in a freezer for 6 months or so instead of trying to continue with my old life.

Eventually you naturally find your own way to cope with the symptons and end up with a new "you". I fought doing this all the way and still do at times.

My psycholgist ( after seeing 3 that told me basically that there was nothing wrong with my brain) told me the following:

Be kind to yourself

What would you be saying to your friend if she was you?

If you have a good day don't go all out and over do things as you can burn out quickly and bring the symptons back.

Each morning write a list of what you want to do for the day then halve it and halve it again.

Keep to a routine and rest

The others have given you good advice - isn't it (sadly) wonderful that others can understand how you are feeling - so good to know that you are not alone. Get rid of your psychologist and find one that believes you.

Good luck

Lynlee

Erica,

After reading Lucy's post, it reminded me about one of my techniques. I do not wear a watch and try to avoid using clocks. I have found them to be counter-productive. If you can find a way to arrange your day so clock watching is less likely, you will be miles ahead.

I found that the only difference a clock made was my stress level, regardless of whether I was on time, early or late. By arranging my day with looser time constraints, I got just as much done with a lot less stress. The more important objective was to work at a consistent and comfortable pace.

In the US, Mild Cognitive Impairment or the other symptoms of PCS qualify as ADA (Americans with Disabilities Act) conditions. Your employer is required to make reasonable accommodations so you can work without the crashes from the trifectas.

Social Security Disability Insurance regulations consider a lack of ability to maintain pace and persistence in normal work environments as qualifying for SSDI payments.

Lynlee is right on the money when she tells you to get a better psychologist. Mine is wonderful and has helped me so much in my (ongoing) transition to my new life. Many of us here were super high achievers and slowing down comes hard for us.

I know it's difficult when you're in university to not party with your friends. However, resting now will make all the difference in how well you recover. It's a good sign that you can already read and watch TV. At the same point, I was still staring blankly and drooling.

Lynlee is also right that you have to pick your physical activity with care. Check out my icon, before my accident I was a super-jock workout maniac. Well, I can't do that excessive, brain jarring stuff anymore. Sadly, if my heart rate gets above a certain point, my head wants to explode. That doesn't mean I'm sitting on the couch. I worked with my PT to find my safe range for excercise. I wear a pulse monitor when I excersise (walking, swimming, weights, stationary bike) and as long as I stay in my PCS happy zone, I'm good.

Mark is so wise when he cautions you not to push yourself too hard at school. Just because you can keep up without some consideration, doesn't mean you should. You are entitled to things like extra time, a quieter test room, etc... and you should take it. As Type A personalities, many of us here made the BIG, BIG, BIG mistake of trying to carry on like nothing had happened. Please don't do that. PCS isn't a weakness to be overcome, it's an injury that need to be respected and accomodated.

Cheers