Feeling a little discouraged with this whole PCS thing
 

I'm not much of a typer so this will be a little short and to the point. I suffered a head injury while playing basketball on May 9, 2015 from a head to head collision. I got dinged up but I never lost conciousness so I just keep playing. But I had to soon stop playing because I felt fatigued and I couldn't play at the level that I normally play at. Didn't realize I had a concussion until the next morning when I had a migraine and felt really nauseous. I went to the ER and the doctor knew right away that I had a concussion. He sent me home and basically said the only remedy is rest in a dark room. So after that I suffered from extreme headaches, emotional instability, lack of balance, trouble reading, you guys know the deal. So suffered with this for months and was just anticipating my visit with the Neurologist which came on July 21. He prescribed amitryptoline and said it will get worse before it starts getting better. But it just got worse. So I discontinued the meds and just started trying to naturally heal. I made a lot of improvement. Mostly by dosing more on the progress I've made since the injury rather than focusing on getting to where I was before the injury. But anyway, tho I've gotten better, I have frequent reminders throughout the day that lets me know I'm still suffering from pcs. Mainly, headaches, lack of balance, and insomnia. But I feel like going to a doctor is a waste of time because nothing comes up in the MRI/Scans, and they don't ever seem confident in their assessments. So if there's anyone who can share any advice that's not going to cost me a whole lot of money, but more so just some words of wisdom I would greatly appreciate it. I'm also grateful for this outlet because as I'm pretty sure you guys know, this is a very lonely kind of suffering. No one understands except the ones who actually suffered or are suffering from this.

RP2517,

Welcome to NeuroTalk and to the marathon called PCS.

What have you done or tried to help with your recovery ?

Many (80%) of concussions include a subtle upper neck injury. They can contribute to headaches and other PCS symptoms. They do not show up on imaging except by very specialized chiros.

Check out the Vitamins sticky at the top. It has all the starter information you should know. The vitamin regimen is good to help nerve fibers heal and help your brain tolerate stress and anxiety.

What kind of work do you do ? Do you lead a busy life ? It can make recovery slow.

Feel free to tell us about any symptoms or struggles you may have. We have heard them all.

Post concussion syndrome is a little bit like snakes and ladders. If you follow the rules, you move up the board with the end goal being recovery. If you over stimulate the brain and over do it, you'll slide down close back to the start. Try to figure out what triggers your symptoms the most and avoid those. Your brain is in a state where is can't tolerate things as well, so it needs rest to help it heal. Vitamins can help you. Regular sleep patterns can also help. Low stress and a healthy diet. No alcahol, recreational drugs, caffeine, processed sugar, preservatives or sweeteners. Over extending yourself physically can also cause problems with many sufferers.

Try to keep calm about your symptoms. Accept this has happened. Live life as best you can and always remember there are worse off people out there. Getting all tied up in knots about your current situation won't help you recover, it will slow you down.

This thing tends to get slightly better in a measure of months, not days. Don't be fooled into thinking that you're better, even if you feel it. Symptoms can come back if you push too far.

All the best, people on here are great support.

I really liked the snakes and ladders metaphor!

I often feel discouraged and sad too. It was worse when I had daily migraines, which isn't really that surprising when I think about it. I still get really sad when exhausted.

For me the four main things that makes me less sad are:
1. Realizing that you are not alone (this forum is excellent for that)
2. Spending time with people that cares about you, that let you cry and hug you when you need it the most
3. Trying to focus on the activities you can do, instead of the ones you can't do. Thinking about movies I can't watch makes me sad, so I have packed away all my dvd:s. Instead I listen to a lot of audiobooks and actually really enjoy the fact that I haven't read this much since I was a kid.
4. I read somewhere that "go to bed, you'll feel better in the morning" could be called the human version of turning an electronical device off and then on again. Sadly it doesn't work perfectly with PCS symptoms, but when I'm just exhausted and sad I usually feel less sad after sleeping.

There are several things in the "Things you wish you'd known when you first got post-concussion syndrome" sticky that have really helped me too, but my memory isn't at its best at the moment and I'm not used with having to write things down.

Btw, I had spent a year of trying different medicines for my daily migraines when the fifth one suddenly worked. At that time I had no trust in the Neurologist when he told me that a medicine would work. I don't think he had either, since I got a prescription for the next medicine at the same time...

Welcome RP2517. Everything everyone has posted is so relevant. I have made peace with it in the sense of accepting versus fighting it.

I too like the Chutes and Ladder analogy. It helps that I have recognized improvement and I think now I recognize my limitations quicker too so I back off sooner and my symptoms are lessened.

Excellent advice and suggestions. And the Snakes and Ladders analogy was both hilarious and spot-on!

The only thing I would reiterate is that the more you try and do, the harder it will be on you. Overstimulation and/or too much activity with exacerbate everything (headaches, feeling down, anger/frustration, isolation, etc.). Find what triggers you, where your limits are, and work within them. As you get better, you can push a bit but don't over-do things on good days... so easy to say, so hard not to do!

RP,

You have to pay attention to your body and mind without becoming over analytical.

When I started to get used to living with PCS I began to recognize the subtle clues my system was sending me before things got real bad.

You have to respect them and rest or switch activities.

Bud