Questions about PCS
 

So, I'm new here sorry if I post incorrectly or anything.

But anyway, I'm a high school student, and back in December slammed a car door closed against my head. My mom assumed it was just a bump, but I got worse, ended up in the ER. They said I had a concussion so I started seeing a neurologist. The whole painkiller thing didn't work, and he also tried a course of steroids that didn't do anything. In early February he put my on Topamax, but I just recently got off of that because it made me so spacey. I also hit my head pretty hard again in March which made me feel worse.

The problem I have now is I feel like something is wrong with me because something is still wrong with me. If that makes sense. People just assume that you're supposed to be fine a week after getting a concussion, and I feel like when I try to explain PCS and post traumatic headaches to them they just think I'm full of it. I'm going to go back to the neurologist this summer, but I even feel like he's tired of me. But I'm still getting random headaches or stabbing head pains everyday, and the fatigue is still there. The neurologist mentioned trying a blood pressure medication for the headaches, but I don't know if I can because my blood pressure runs low anyway.

So that was a really long post, but yeah. I guess I just want to find out if this is completely abnormal for me to still be feeling bad.

My heart goes out to you! My son suffered a concussion at the beginning of May and we are still in the thick of symptoms and learning more about PCS every day. You are so accurate in your statement about the lack of knowledge people, even the medical community, has about concussions. Don't doubt yourself for an instant! You are going through something very real. There are many others, far more knowledgable than myself, who will be able to give you lots of information. I wish the best for you.

gemma17,

I am sorry to hear of your struggles. Fortunately, you will have a summer to take it easier. Rest and a low stress environment will be good for you. Try to find some music that is soothing rather than stimulating. Avoid coffee and eat healthy. I have posted lots about nutrition for concussion. B vitamins, Omega 3's, folic acid, D3, are all good to help you brain recover.

If you find that you have ups and downs, try to notice what you are doing before the down cycle. You may have specific triggers like loud sounds or just become overwhelmed by to much going on. Learn to avoid these situations. Mild exercise that does not cause symptoms is a good idea.

Check you blood pressure for a while and see if there is a difference between when you have a head ache and when you do not. If the head aches are BP related, you can have the doc prescribe some propanolol or such for occasional use. My BP is normally good to low but can spike to high levels. When it happens, one pill and I am better in 30 minutes.

I have learned to avoid/prevent these spikes. They are usually due to over-stimulation. You can mix Tylenol and aspirin at maximum dose for a stronger, non-narcotic pain reliever. My doctor told me to try the mix and it works great for me.

Your neurologist will not be much help if he hasn't helped already. As tab said, not many doctors are much help. Pestering the doctor can get you labeled a hypochondriac or somatoform patient. Not good to have that in you medical record.

Hope this helps.

My best to you.

No, it is not abnormal to still be dealing with PCS issues. My daughter (15) received a concussion back in October 2009. It was probably 4-5 months before cognitively she started to do better. At at about the 6-7 month mark, she started to be less fatigued during the day but still has a lot of trouble getting up in the morning. She needs way more sleep than she used to. She's had headaches off and on every day since she hit her head - though they have lessened in severity and frequency. She was able to start exercising again around the 6.5 month mark without feeling worsening symptoms.

If you are having any issues with your vision, get it checked out. Your optic nerve can get damaged. Vision therapy might be able to help.

My daughter and I both see a NUCCA Chiropractor (google NUCCA for more information). I think it really made a difference in my daughter's headaches and fatigue. After we started doing this, she was able to gradually build up her exercise. Before this, it made her symptoms worse.

Now that summer is here, take the time to rest and recuperate. Hang in there.

Thanks
 

Thank you t97tab, I hope you and your son get the help he needs to start feeling better.

As everyone said, I do think the summer should be helpful because I often get headaches when I'm at school or doing homework. I do have something called a 504 plan for school. That doesn't really mean the school is helpful because they neglected to tell me about this option, and I didn't find out about it until months after when a science teacher who's son had similar problems suggested it to me. This just makes them legally obligated to let me go to the nurse and have extra time on tests if I need it.

I've definitely noticed some triggers, I don't go to movies or concerts anymore because giant screens and loud noises set of bad headaches. Mark, you mentioned mild exercise. Before all this happened I was a dancer (tap, jazz, lyrical, and ballet) and I danced 3-5 times per week. I stopped for the rest of the year because I missed so much class. I don't know if dancing will be a trigger just because I was told I couldn't dance until a doctor cleared me. I'm planning on going back to class in September anyway, and I'm hoping that will help rather than hurt.

That's a great tip about the blood pressure, it never occurred to me that spikes could correlate with headaches, but that makes total sense.

Nancy, it's good to know that the way things have been going for me is normal. I recognize a lot of my experience in what your daughter has been going through. Especially with the waking up in the morning, I know most teenagers aren't thrilled to get up and go to school, but when I wake up sometimes I'm confused or I just don't feel like even moving. I also had no idea that the optic nerve could get damaged, but that might explain some of the trouble I've had while reading even when I put on my reading glasses.

Thank you everyone for your suggestions!

gemma,

If you try dancing, pay attention to the effect the beat has on you. The tapping in tap dance will go all the way to your head. A good way to demonstrate this is to put foam earplugs in. Then, as you step or tap, you will hear the impacts inside your head. This will help you develop softer steps/footplants.

My life changing concussion came from a missed step where I landed hard with my knee locked. The impact/shock traveled all the way up my body to my head. My back was arched so there was no shock absorption in my spine.

Your 504 plan should also allow you to get help with note taking and other issues where there is too much information coming too fast. If you struggle with reading large pages of information, use a piece of paper to cover the bottom of the page so you only see the line you are reading.

I need to do this if I try to fill out a form with lots of empty blanks on it. I cover both above and below the line I am working on. This way my brain can stay focused on just the line I am seeing. Otherwise, my brain gets overwhelmed with all of the blank spaces needing answers.

Your giant screens problem is common. The wide screen that fills your entire field of vision causes too much visual information to attempt to be processed at once. Sit as far from the screen as possible if you have to watch something on a wide screen.

In a class, sit at the front of the class so you have as little visual distraction in your field if vision. I cannot sit in the back of an airplane and see the rows of heads moving about. It is too much visual stimulation.

Be aware of echoes. they may cause you struggles. Foam ear plugs will help with this. Most sound systems are set so loud that you can easily hear everything with foam ear plugs in. I have tried all the different types. the yellow foam cylinders work best. Twist them tight and put them in so that only the tip is sticking out. This will be a great aid for studying.

Keep in touch. There is scads of help on this forum.

My best to you.

Yes, tap dancing was what I was particularly concerned about, especially because with everyone in the studio it can get very loud with all the tapping. Fortunately, my teachers are very understanding and accommodating.

Wow, I guess people tend to assume that the only way to get a concussion is by directly hitting your head, but that's not true! That's very good advice to cover up the words, when I was taking the SAT test I would sometimes get lost in the reading sections with the big blocks of writing with tiny font, that strategy should help me focus on it better when I take them again this fall.

That also brings up another questions I was having, about air travel. I'm flying to France this summer so that will be about an eight hour flight. I think I'm sitting on the aisle so I can focus on the floor ahead of me instead of looking out the window or whatever, but I was wondering if a prolonged flight would affect my headaches?