Advice on PCS…. there isn’t a lot out there. Particularly as it’s not well researched. And because there is nothing physically wrong with the brain, it’s widely believed to be a psychological/mental type thing. This is only my advice gained from my experience. Some things that did not work for me, may work for you. I hope it can be useful for many but of course there is no guarantee.
What didn’t work for me
- Anti depressant drugs (often given in low dosages as some research suggests they can be beneficial for PCS)
- Withdrawing from all activity completely
- Exercise bike (ten minutes a day) – although this might be useful to keep fitness and morale up
- Focusing on how my head felt at all times (unfortunately i think this was unavoidable)
- Waking up in the middle of the night, standing up for several minutes before returning to bed. Perhaps this might somehow affect blood flow/pressure to my head in a beneficial way (clutching at straws I know)
- Keeping my head as utterly still as possible for days on end (very slowly getting out of bed, moving to the sofa, staying very still on the sofa etc)
- Neck massage/physiotherapy
What made me feel temporarily better, but didn’t seem to have a lasting positive effect
- Relaxing massage
- Alcohol (relieved symptoms but sometimes encouraged me to do too much and i made my condition worse)
What worked for me
- Pain killers (codeine)
- A disciplined, planned and gradual increase in activity
The codeine was quite strong and it reduced my symptoms and gave me confidence sometimes to increase my activity. It was also useful if my head was bad after having done some activity.
The second point was really key in my recovery. It was not quick. It was gradual with small increases. I controlled everything that made me feel worse even limiting the amount of people i could have around me at any one time. I used walking as a barometer of my condition and walked a little further every day until i could jog a stupidly small distance. Then i built this up all the while. Even when i was feeling vastly improved i still limited my screen use or reading as this was harder to measure and control. I also needed the confidence to increase my activity even if my head hurt. If i’d been watching TV i could believe that it was due to this that my head was hurting and that i shouldn’t increase the amount i walked. If I hadn’t been watching TV then i knew that i had walked this distance yesterday and could confidently do a few more steps today without overdoing it (and potentially suffering a set back).
Advice on dealing with the boredom
- Radio – listen to the radio live of course or listen again online via the website for example at BBC iPlayer
- Audio books – i really love audio books. Get them from the library or online. They were so important to me.
- Podcasts – lots of different and interesting podcasts are available for free. Look on iTunes store.
- Sitting in different places helped me. I’d move from sofa to a bench outside then to the conservatory. If you can get a bike maybe you can cycle somewhere close by that allows you to sit outside for a few hours.
- Sometimes listening to the TV.
- Know that it will get better.
Advice to friends and family
This is a hard section to write. I think that all you can do is to support the person on a rehabilitation plan and to enable them to do this they might need help. They might need reminding that they will recover (even though progress can be breathtakingly slow). They may also need reminding not to push too hard and rehabilitate too quickly. I certainly needed things done for me. I couldn’t cook for myself for example. My sister put audio books on an iPod for me. Helping the sufferer to keep positive may also be important as its inevitable that the person will feel confused, frustrated and low. Visits were useful as if i had something to break the day up it helped me to get through the boredom. Finding this site and relaying the information to them if they cannot use a computer could be extremely helpful.
How It Began – My Worsening Condition – Fragile Recovery – Life After PCS – My Advice
Hi Shaun, I’m very pleased to see your site detailing your own PCS experience & wanted to thank you for speaking up & helping to bring awareness to others (and hope!). My Facebook friend Gina made me aware of your page & we help run ‘Post Concussion Syndrome Awareness worldwide’ groups on FB which has been going a couple of years.
We see maybe 2-4 new members per week all of whom are struggling to cope or have been sufferers for years & try to provide a safe place for them to chat to others, discuss their treatments & just give words of advice/encouragement. It would be good to stay in touch if possible & we’ve already signposted your page in our groups.
Thanks & Regards
Thank you for sharing your story. I am going to share this with others as today is PCS Awareness day. Thank you for writing it clearly for others who do not suffer from this can understand. I also heard about this through Gina and David. And thanks for writing it clearly and short so my brain could read all of it.
Brilliant. Please share because then more people can benefit from my story.
I was thinking about how to make this site more accessible for people (like i did) who have difficulties with screens/reading. Perhaps recording it as an audio book download or something…?
Hi shaun I’ve signposted your blog through my own, hope all is well with you :o)
I will add your site http://postconcussionsyndromeawarenessuk.wordpress.com/ to my links page 🙂
Thank you for posting your story. I haven’t found much support for people with PCS and just hearing that I am not alone helps. I hit my head while skiing, I think it was about three years ago now (I have trouble with the concept of time and space now) I experienced the same experiences as you describe. I suffered from “brain fog” and migraines for two years, I have greatly improved since the first year but am still struggling day to day activities, relationships, self esteem and constant pain and confusion. My vision still goes in and out of focus constantly, I am often tired and in pain and I have ringing in my ears. I have been to a few Orthopedic doctors/ Nuerologists, (one who told me to lay off the caffeine and go back to work). I took, I think about a month, out of work, and went back on my own accord, not because I felt better but because I was afriad that my co workers did not think my condition was “that bad”. No medical inmaging showed any signs of something serious, so I thought I just needed to suck it up and deal with it, because doctor’s told me nothing was wrong, so I believed them. This year, I was told by chiropractors, who have helped me greatly, that I had severe whiplash, a rotator cuff injury and had injured the “plates” in my skull, none of which was addressed after the fall. I had been unable to advocate for myself, verbalize my symptoms or even ask for the help I needed because my brain was not properly functioning. I was relying comepletley on healthcare professionals, some who may not even believe PCS exists, to make me better. I couldn’t even remember to call about TDI, which I qualified for while out of work, so I went with an income for that time. This past year I also underwent a nueropych evaluation which finaly diagnosed me with PCS. My memory and processing skills are almost non existent. However, I have found that Aderol has helped with my attention and focus, and my stubborness and fear of what people think, has helped me continue to work two, sometimes 3 jobs and pursue my Master’s Degree. I bartend in addition to my day job in order to make money to pay for medical expenses but end up feeling worse after being on my feet and stressed while at work. I often look stupid or drunk even, because my center of gravity is off and my proccessing skills get worse when there is a lot of stimulation. People assume I am just a ditsy blonde. I have found that working and going to school takes all my energy and leaves none left for my recovery and relationships with others. The hardest part of this whole experinece is the lack of understanding. Since it is condition that you cannot see and sounds “made up”, I have found that nobody understands and people often are angry with me for missing events due to being in pain, tired or unable to think clearly. I wonder if having more support would help me to recover. I guess reading this article is the first step.
Katy, you are not alone. We are just orienting ourselves to PCS with our 18 year old daughter who fell out of a cheer stunt on 1/5/13. You have our prayers and support. It is real and yes you do feel like you are in a fog. Educating others and knowing you are not alone is a start.
I’m currently suffering from PCS myself due to a terrible car accident on the job, delivering pizza. It makes me feel so much better to read your story and know that I still have a chance to return to a “normal” life. I’m currently 20 years old, and the accident happened August 28th of last year. I’ve been on several different meds, I’m currently going to cognitive rehab, and they’re considering sending me to other kinds of rehabilitation to try and work me back into a normal life. I, too, lived an active lifestyle, and reading this I feel like one day I very well could return to it. I would love to return to school and do something great with my life, maybe be a businessman or what have you, and this was a fantastic boost to my moral, knowing that it’s not just me and that someone else has beat this.
God bless you, and I hope the road ahead of you be a smooth one that allows you to move even further forward,
Thank you so much for this, I have been suffering from PCS since May 2013, and I just recently had a set back from taking a walk! I was feeling great before then, my headaches, nausea and dizziness were all under control; so being that the weather was nice, I decided to take a walk and woke up the next day in more pain than the initial accident. My neck hurts all the way down to my back and all the symptoms are worse I feel like I am losing my mind and to make things worse I have children, it is so unfair to them that I can’t spend much time with them. I sit in my room and cry and blame myself for so many things going wrong right now. I am also 26, I live in so much fear that my life is going to past me by I was supposed to be returning to school to finish my bachelors this fall but my recovery is really slow because I have some other chronic illnesses, but your story gives me hope, I’m not alone you give me strength and faith that I can get better, thanks for fighting Shaun
Hello Shaun. Thanks so much for taking the time and energy to share. Our daughter Hannah fell from a cheerleading stunt Jan 5th 2013. She has all of the symptoms you described. She finally had to drop out of school last year. She is back this year, as it is her Senior year, but every day is a struggle. She fights every day to get up and go to school.. I could write so much more, but I live with it every day and going over it again just adds to our struggle. I am looking for a support group and feeling led to be an advocate for PCS among students involved in sports. If we had not had someone point us in the right direction for our daughter we would have thought she was a defiant rebellious teen, we would have been really tough on her and we would not have gotten her the help she needs. I wonder how many other kids have been misunderstood who are actually suffering from PCS. The psychological effects can be devastating. We are still in the middle of the challenge and learning as we go. Our daughter is a Senior this year and has lost so much. While her girl friends are cheering and enjoying an awesome Senior year, she is at therapy and psychatrist trying to learn to cope with pain, confusion, memory loss, depression… Thanks for sharing and I look forward to more contacts. Knowing that this is real will make a big difference to many. God Bless each of you that have posted.
I am so grateful to have found this article. I was the victim of an assault also. Pounded over 8 times on the back of my head. Since then I have suffered all you have listed here and then some. The noise in my ears and head sounds like I am inside a room and there is a Mardi Gras going on outside. I can n’t make out specific words or sounds but it’s crazy. If its not that the ringing in my ears is so intense i just have to try to drug myself to sleep. I can’t concentrate,am forgetful to the point of being scary. I shouldn’t drive but at times I have to. I have completely withdrawn into my house. Only going out if I have an appointment. I used to be a runner, I can’t walk down the hallway without bouncing off the walls. I get so depressed….. it is almost overwhelming. I just called my physician again to try another painkiller. I have this cycle of not sleeping for over 48 hours the sleeping for just about as long. Thank you for sharing and letting me vent . At least Im not raging at the innocent! That too happens on a daily basis.