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.