Hey, I'm sorry you're going through all of this. I am also 2 years (and 2 months) post PCS and it can be heartbreaking at times. This being said, I still continue to recover and see changes every day and haven't given up hope. Every 6 months I look back and feel like a different person than I was before. Cardiovascular exercise has helped me feel more normal as long as I don't push myself too much. I still feel like I will recover fully eventually, despite all of the naysayers. I am young as well, (17) and I think that age can be a contributing factor to how well you adapt to the injury. I think a really important thing to do is stay positive. WHEN I recover, I will let you know. Good luck with how you're feeling and I hope you feel better soon.

I've been without Internet for a couple of days and when I got home yesterday evening I was very low on energy. But I really appreciate your tips and encouragement!

I will ask someone in my family to help me look up Neuro/behavioral optometrists in my city! Thanks for the tip!

I started listening to the core therapies for TBI on YouTube after reading about it in one of the stickies, but couldn't really take in/comprehend the information... Will ask for help with that too!

tbi_survivor, it sounds like you are on your way to recovery! I hope you will continue to see changes for the better!

The problem for me is very much that I don't get better, but worse. When I look back to 6 months ago (or a year ago) I see that I had way more energy and less headaches. That makes me scared.

I kind of know that the good thing with concussion is that you will recover eventually, at least that is what my doctor told me early on. And I can see that I learn valuable lessons about resting and listening to my body. I'm just so very, very tired.

Woohoo! I actually feel better!

The other day my eyes were hurting quite much, but I just felt very happy, since it's probably the first time in two years that my eyes have been hurting more than my head! It's kind of like my feet. During a trip to Amsterdam last year I suddenly realised that my flat foot hurt more than my bad foot, which also made me very happy.

Now I just struggle a little with constraining myself from jumping up and down and doing too much.

Of course I still can't watch tv, use a computer, go running or anything like that, but just not having headaches all the time makes it so much easier to enjoy life! Like some days ago I had a long conversation with my boyfriend about mathematics and I actually felt like I had access to my whole brain again, even though I wasn't thinking that fast. And I just feel this difference in the way I get tired.

Two weeks ago I had an EEG to rule out epilepsy and it made me worse, but only for something like two days. That's great progress!

I also had vertigo testing and they didn't find anything, but referred me to balance training at the hospital, which I really look forward to starting! I also liked that the doctor was clear with the fact that he is convinced that my vertigo problem is physical and not psycological, and that today's knowledge of vertigo is just not complete.

I hope and think that my progress towards getting rid of PCS have to do with my new medicine, which is supposed to improve my sleep quality and prevent migraines.

Seing how much better sleep matters I've been thinking about my sleep quality. My boyfriend has been telling me for years that I hold my breath while sleeping, does that mean that I have sleep apnea?Woohoo! I actually feel better!

The other day my eyes were hurting quite much, but I just felt very happy, since it's probably the first time in two years that my eyes have been hurting more than my head! It's kind of like my feet. During a trip to Amsterdam last year I suddenly realised that my flat foot hurt more than my bad foot, which also made me very happy.

Now I just struggle a little with constraining myself from jumping up and down and doing too much.

Of course I still can't watch tv, use a computer, go running or anything like that, but just not having headaches all the time makes it so much easier to enjoy life! Like some days ago I had a long conversation with my boyfriend about mathematics and I actually felt like I had access to my whole brain again, even though I wasn't thinking that fast. And I just feel this difference in the way I get tired.

Two weeks ago I had an EEG to rule out epilepsy and it made me worse, but only for something like two days. That's great progress!

I also had vertigo testing at the hospital and they didn't find anything, but referred me to balance training, which I really look forward to starting. I also liked that the doctor was clear with the fact that he is convinced that my vertigo problem is physical and not psycological, and that today's knowledge of vertigo is not complete.

I hope and think that my progress towards getting rid of PCS have to do with my new medicine, which is supposed to improve my sleep quality.

Seing how much better sleep matters I've been thinking about my sleep quality. My boyfriend has been telling me for years that I hold my breath while sleeping, does that mean that I have sleep apnea?

I'm also thinking about doing something about my problems with going to bed at night and falling asleep. I've seen melatonin recommended both for people with Aspergers and people with PCS, so I wonder if I (being in both groups) should try to get a prescription?

"My boyfriend has been telling me for years that I hold my breath while sleeping, does that mean that I have sleep apnea?Woohoo! I actually feel better!"

It sounds like you need to get checked for sleep apnea. Do you snore, especially before you "hold your breath" ? Sleep apnea can make minor concussion issues a 100 times worse. Not only do you not get good REM sleep, but the brain is left with a toxic combination from the lack of oxygen.

Your boyfriend can do a lot by observing your breathing when you sleep. Counting the duration of the apnea events. Counting how many per hour you have. Noticing whether you make snoring or other sounds when you are breathing.

You can have Obstructive Sleep Apnea where tissues obstruct the airway. You could also have Central Sleep Apnea where the autonomic nervous system fails to cause you lungs to draw a breath until you are in oxygen debt.

Getting a good diagnosis can change you life.

Mark

Thanks again for your answers!

I don't think I snore, at least no one have ever told me I do. Apparently I just don't breath, but when I'm told I take a deep breath and then start breathing again. Maybe I just forget to breath, I do that while awake too, but I'm trying to be more aware of that.

I will talk to my doctor about it when I see her next week. I will also look into the two types of sleep apnea you mentioned!

Things are starting to fall into place, which feels really nice. Next week I'll get the results from the EEG, I'm waiting for an neuropsycological assessment, I'm getting help with trying out filter glasses, the new medicine is actually preventing the daily migraines and I started balance training last week (and managed to realize that I have to be careful, since balance training apparently gives me migraines...).

I also experience the effects of antidepressants when you're not depressed. The other day I got really excited and happy about eating oatmeal for breakfast

As you probably already know, the CT and MRI and not often helpful in the diagnosis of a concussion, but they can rule out some more serious causes for your symptoms.

Most important for anyone who may have sustained a concussion is to allow your brain time to rest. Watching TV immediately after having a concussion was not good advice!

There are no prizes given for toughing out the pain of a concussion and the most important thing is always to rest and let the brain heal. My brother and I are high school athletes and very competitive but nowadays the smart approach to athlete with a concussion is "when in doubt, sit them out".

The same applies on or off the playing field.

Julia,

What you describe sounds a lot like Central Sleep Apnea (CSA). When I was struggling with CSA, it sometime effected me when I was awake. I would suddenly find myself gasping for air. At first, I thought it was an anxiety attack but once I realized I was not breathing, I understood. I first became aware of my CSA during an EEG with a sleep session. I could not fall asleep because as I tried to relax that last bit to fall asleep, I would start gasping for air. I repeated this until I realized I was simply not breathing properly.

I had conditioned myself to breath consciously, rather that automatically. It turns out the hard pillow under my neck that protected the electrodes was holding my neck in a bad position. Once I straightened my neck out and let the inflammation subside, my normal breathing returned. I was able to repeat this head/neck position at home and the CSA returned.

I hope you can find some help. Sleep specialists do not have much experience with CSA. Plus, the treatment is not reliable. I had to learn how to sleep with my neck in a good posture so this did not happen. It took a lot of discipline to get a good night's sleep and to allow my neck to heal and stabilize so it was not so prone to inflammation. Some upper neck therapy can be helpful in the beginning to allow the C-1 and C-2 to find a proper position.

It is important to find a solution to any apnea. There is a cumulative effect that leave the brain with slow deterioration. I could tell you a horror story but I will spare you.

It is a primary cause of daytime fatigue and sleepiness.

My best to you.

Thank you for your comments!

Yeah, to watch tv was very bad advice. For the last two years I've been wondering so many times what would have happened if I wouldn't have started my concussion with watching tv. But it's kind of pointless. I think the hospital just had bad routines and that the nightshift of nurses started working in the time between my faint and me watching tv.

I've probably tried to toughing it out at times, but it's also been a lot about finding the balance between my aspie head, that needs distraction and order, and my concussed head that needs resting. And of course the feeling of responsibility and expectations.

I'm seeing my doctor tomorrow, so will definitely talk with her about sleep apnea and breathing! Thank you for all the information! I wonder, do you breathe automatically now? And is it true that sleeping on the side is better than sleeping on the back? I usually find it easier to breath when on my back.

I had a small nose operation three years ago, because my nasal Conchas were too big, but I never had a check up afterwards. Maybe that's a good place to start, while I wait for whatever my doctor will refer me to.

I found some horror stories while googeling, yes. Hua! I won't give up after the "your sleep is just restless because you go to sleep to late"-answer this time. Luckily I've stopped going to doctors alone and my boyfriend is very persistent, so I think it will be okay.

Your turbinoplasty (nasal concha) should have improved your breathing from an obstructive point of view. I had a turbinoplasty 2 months ago/ Aaaaahh. To have open nasal passages is great. If you have Obstructive Sleep Apnea, you sleep would be worse on your back. But, Central Sleep Apnea is different. It is a condition where the brain fails to tell the diaphragm to take a breath.

For me, my CSA was likely due to inflammation in my upper neck and brain stem that decreased blood flow causing the autonomic nervous system to dysfunction and forget to tell me to take a breath. Resolving my neck issue over time has resolved my CSA for the most part. I sleep best flat on my back with my head and neck straight.

I don't really know if the turbinoplasty made it easier to breath, I still feel like I don't get enough oxygen when I only breath through the nose. Oh, and now I can't remember if my doctor checked my nose too, or just my throat (tonsils I guess), when I saw her on Wednesday. Well, it probably doesn't matter.

My doctor referred me to sleep checking or maybe some doctor. I was quite exhausted at that point, since I had agreed to let a student train patient relations, so I had been there for more than half an hour when I finally saw my doctor. Anyway, I got referred to something, but it will probably take almost a year. So meanwhile I try to find a good chiropractor like you told me earlier.

Thanks for all the excellent information!