Nearly 6 months from a car accident and 3 months on from being diagnosed with Post Concussion Syndrome my main symptoms are headaches / migraines, fatigue and photophobia. I am wondering about a few things that maybe you can help with:
GP has referred me for MRI has anyone had one, is there any point as i have heard PCS doesn’t show.
What are people experiences of headaches / migraines like?
How have people managed work - what helped them find the right balance. Top tips.
Your experiences of pain medication - pain relief doesn’t seem to have any effect or if it does it takes hours to take effect.
Any therapies, medical support that helped
Thank you for your time and support 🙂
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Antique-white
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Hi, go for the MRI anyway but ask your GP for a referral to a neuropsychologist to test your cognition, PCS relates to functional rather than acute damage.
The headaches may be tension headaches due to whiplash effects, ask for a referral to the ENT (ear nose throat) clinic, damage to the inner ear can also cause vision and balance issues and also migraines.
Photophobia is not a good term, think of it as light sensitivity (also causes migraines) and visual processing issues, there are numerous types of each. Go and see an optometrist privately they are not nhs.
Best not to worry about work at all, just rest and try to get yourself well.
Try and get psychological counselling to come to terms with the changes in your life and to understand yourself within that. This will help you avoid or reduce anxiety when it raises it's ugly head.
Mindfulness is good.
To avoid or reduce fatigue, avoid noise, light and busy experiences, avoid TV and screens etc.
It may be a good idea to educate yourself about your condition and methods to improve yourself that suit your condition.
You may find the nhs very lacking in real concrete methods to improve your condition. This will depend on your nhs authority, some have money and others just pay lip service.
It takes a long time to improve but you can get there if you really want, it's about having the will to do it. Make recovery your life, educate yourself and work on it.
How people recover from a head injury depends on many factors; you age, existing health, number of previous injuries and surprisingly mental health / strength.
One of the best medicines for the headaches is good old paracetemol. It has very little side effects compared to other more stronger medicines. All it will do is reduce the pain and not remove it.
You are correct in that most MRI's scans don't show finite brain damage. You will need a high power MRI scanner and specialist staff to interpret the results. It is still worth attending even though realistically there is nothing medically they can fix.
Photophobia or photo sensitivity is easily dealt with by dimming the lights, reducing your screen time (pc's and phones) and wearing tinted glasses. A lot of people find the rawness of bright lights diminish over time but it can still be uncomfortable.
The best way many people have found to cope with PCS is to establish a strict routine where you go to sleep and get up at the same time each day, eat at regular and set times. In between have set periods of work and rest e.g. do half an hour of cleaning, rest 15 mins, do an hour of work, rest for 15 mins, walk for 20 mins. It may seem very regimented - which it is ! but allows you to manage you day and "recovery" and then overtime reduce the periods of rest as you do more.
I always say "recovery" as some people thankfully after time have no issues, many of us improve quite a lot but still have symptoms which we just live with.
The mental effect are one of the most important aspects. dealing with the unknowns, frustrations, trying to do too much and too soon. Additionally there will be times others and yourself, will think that your symptoms are psychological.
Hi I have light sensitivity and a tbi from an rta. I would be carefull about medication overuse headache there is an nhs page about this, I was told to take daily paracetamol and spin, by a neurologist after rta and think that was a mistake. I find a hat and dark glasses helpful and changing all lights at home to lampshades and non led bulbs you can still get incandescent bulbs for medical reason. Good luck
I was in High speed head on collision and Suffered PCS and started with migraines into Chronic migraines and also with Functional Overlay which is treated poorly, my MRI’s didn’t show anything especially as my MRI was 6 months after accident. it took me 5 years of misdiagnoses but got to see the proper Migraine headache specialist and neuro psychologist to get proper diagnosis, and when I spoke about Brain scans the neurologist said MRI isn’t detailed enough to show them but they do have special ones which are much more detailed but they are not available to us only in medical testing at mo.
Hang in there and ask your GP to be sent to specialist Migraine Neurologist as your entitled to it, and don’t except any Neurologist as they can put you Meds that can really make your head worse, I know I’ve been through it. Good luck on your journey and hope you get the help
I believe a Functional Magnetic Resonance Imaging (FMRI) scan can detect soft tissue damage. It might depend on the availability and accessibility of a scanner but you could ask your GP ?
After-effects of PCS can last 12 months+ and in the meantime pacing yourself (including at work), resting when necessary, drinking lots of fluids (preferably water) and taking light exercise are all helpful for hastening recovery.
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