I’ve had two back to back concussions in the span of a month as a result of poor medical advice given to me about concussion recovery in relation to retuning to sport. Long story short, I got a concussion playing volleyball at the start of November and got another one at the end of November because the A&E doctor did not tell me the correct information about concussion recovery times and returning to sport. I got a concussion on a brain that was still in the process of recovering from a concussion, which I didn’t know about because I felt ‘fine’. Now four months later, I’ve been diagnosed with post concussion syndrome and have been experiencing symptoms non-stop.
For those who have this syndrome or have had multiple concussions, have you got any advice for managing symptoms on a daily basis or any advice for dealing with the emotional toll it takes on you? I’m struggling with processing what happened as I can’t really remember and I’m struggling with the fact that a lot of my life has changed since then. I’m not allowed to do any exercise other than walking, my university grades and work have been affected, I can’t drive, can’t process things the same and overall I’m just not the person I was before the injury! Any advice would be much appreciated.
Thanks
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Purpledog2
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I’m so sorry this has happened to you Purpledog2. Two concussions in a short space of time must be tough to handle. I’ve only had the one and 3 months on still struggle with symptoms and emotions as I come to terms with the trauma of the incident and the uncertainty of the future. What ever you do, don’t rush your recovery like I did to try and prove it was nothing. Take as long as you can and look after you - and talk to people about how you’re feeling and the toll it’s taking on you. But hang in there - we’re going to ok, right?
I’d agree with Timotei0612 , don’t push yourself too hard and rest when your body tells you to. I didn’t do this but after 4years and still trying to understand and learn the best thing to do that’s the no.1 thing I’d recommend. I’d also say if you feel you haven’t had enough guidance from the medical side don’t be shy in going back for more help/advice.
Thank you both for the advice. I have been listening to my body and resting when needed but it just interferes with my daily life so much!
I saw a specialist back in January who has referred me for occupational therapy to help with university and if my vision issues persist, to see an ophthalmologist. I’ve seen my GP a couple of times as well and have recently tried Naproxen for the headaches which helped the majority of the time. Might go back and see if I can get more!
purpledog2. Go to physical therapy and speech therapy. That will help so much. Do cognitive exercises from a post concussion author. Your speech therapist will help. Exercise, walk, try to resume as many activities as possible. You might consider dropping a class to manage your stress or take a semester off. I have pcs with Tourette’s… imagine that! Lol. If you have AdHD you might ask your physician about adderall . It’s helped me focus. Good luck!
I don’t have any therapy or regular appointments for my condition, just have to rest and take it easy. I have been referred for occupational therapy to help with my university work but the waiting list is so long!
The only exercise I’m allowed to do is walking and I try to do it as much as my brain lets me but it’s not as often as I would like! I did consider taking the rest of the semester off but I only have four weeks left and it would save me from having to retake it next year and possibly not being able to go into my next year because I haven’t finished my current year (hope that makes sense!)
have you been referred to the head injuries unit? My GP referred me after I was complaining about all the issues I had. I then received vestibular physio to help with dizziness and blurred vision
I was referred to a rehabilitation clinic that specialises in brain injury rehabilitations but they’ve only referred me for occupational therapy and to get my eyes checked if my vision issues persist (which they do). Might consider asking for vestibular therapy. Thanks for the advice!
I'm thinking a guy. And for all of us in the early stages it's hard not to push ourselves. We've been taught to do that. But brain injury is different. We have to be in advance of the brain, look after it like a baby, give it breaks and sleep.
Depending of the areas hit, wear sunglasses if photophobia in advance of seeing bright light. Ear defenders for noise Before you reach noisy areas. Etc.
It's going to take a long time. Accept patience and endurance and hope, all together.
I try to take it easy but I’m in the last four weeks of my current semester and have two more assignments and an exam to do and then I’m done. Fortunately, the support services are aware of the issues have been very helpful. Just a struggle trying to manage recovering from a brain injury with the workload of being a university student!
I frequently use sunglasses and headphones to help with noise and light sensitivity but recently my hearing has been all over the place.
Hi Purpledog2, I am so sorry you are going through this. I echo Nemo24's advice to look at Headways website, particularly this link headway.org.uk/about-brain-...
As Headway says, your pituitary gland can be damaged after head injury and can cause some of your symptoms. They say this happens 'occasionally'. However there is a systematic review by Schneider that finds that pituitary damage happens after 16% of concussions (called mTBI in the review) which to me is more than 'occasionally'. Also they say 'there are currently no clear guidelines in place for the assessment and treatment of pituitary function after brain injury' which isn't true either. There IS guidance from the British Neurotrauma Group jnnp.bmj.com/content/88/11/971 which you might find helpful to brandish at your GP if you look into this.
The thing to be aware of is that growth hormone is the hormone most commonly affected and that there is extraordinary reluctance on the part of the medical profession to test properly for this - you often have to go private. The test you should push for is not measuring your IGF-1 levels which can be normal in up to 65% of people with growth hormone deficiency, but a stim test such as the insulin stress test, the glucagon stimulation test, the GHRH + arginine test or the recently developed macimorelin test (cheaper but only 85% accurate). Reasons for denying you a stim test range from 'all your other pituitary hormones are normal' (but isolated GHD is by no means unknown) to 'your MRI didn't show anything' (but MRI tests often don't show pituitary damage). Plus of course 'your IGF-1 is normal'.
I think you probably do have this problem and if you need encouragement and support in your pursuit of proper NHS treatment, then please come to us at Christopher Lane Trust and we'll do our best! Very good luck anyway.
hi Purpledog, the main thing is to let your body rest when it needs to. I’m 4 years down the line and still have nonstop migraines and post traumatic headaches after a double concussion. Youth is on your side, so you will get better. If you’re as old as I am, it’s much harder… insist on vestibular therapy (I’m still waiting) , CBT for brain injury and physio.. I’m still waiting for that too. Only do a bit of walking to start with and build up. Good luck. Having endless migraines is the worst so hope you don’t get them!
Any brain injury is going to impact your Autonomic Nervous System and you will have issues that result from this. Recovery times can take years.
Minimise the symptoms by eating healthy, drinking plenty of water, minimising stress and fatigue, and get your blood checked periodically to make sure your levels are normal....particularly vitamin B12.
I would be putting aside work and university so that you can recover.
You need to see a Neurologist. They will probably send you for a scan which may or may not show the damage. Regardless, it's a Diffusional Axis Injury:
Like I said, recovery times vary, so you may want to think about if you can claim some government income support while you are injured and IF you recover enough to go back to work.
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