Boom and bust

Hi all, I'm fairly new to this site but would like any advice or thoughts on fatigue and managing 'boom and bust'. I had a road traffic accident over 5 months ago and have had post concussion syndrome since. I had 3 relapses in the first 2 months which all have the same pattern of chronic headaches that last for days, vomiting, light and noise intolerance etc. I had one about 3 months ago which lasted for 10 days before I had any relief from the headaches.

Since then I have been trying to manage my fatigue and thought I was improving and I was going to start a phased return to work. I increased the amount of daily activity a bit to try and build up some stamina and then the weekend before I had another relapse. It was exactly the same pattern and I have just had about 8 days of chronic headaches spending most of the time in bed in a dark room. Is this the sort of pattern others experience when they overdo it? Also any tips please to help on medication as I have tried everything in desperation.? None of the over the counter medicines work, I am taking Amitriptyline which helps a little at night and I tried Sumatriptan but the doctor wouldn't give anymore as he said they can cause rebound headaches.

I have got a neurologist appointment in 2 weeks time and headway have advised me to take a headache diary with me which I will do. These relapses are so tough that it makes me really wary of overdoing it now.

Any thoughts please? Many thanks.

10 Replies

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  • We're all different, so there isn't really a How-To, or any way of transferring one person's experiences directly to another. That sounds bleak, and it's not meant to, it's just that we're all individuals, and can't predict how another will respond, with such variation in area and significance of brain injury.

    The advice from Headway to keep a headache diary is good, you'll start to identify your own triggers that way, but the neurology appointment is also crucial, to check there's nothing structural as such.

    As general advice, stay hydrated, the brain is a big watery thing, and if you've ever had sunstroke, or a crippling hangover, you'll know how vile dehydration can be. Sleep, don't try to knit extra hours into the day, the body, and brain repair during restful sleep, it's essential. (Easier said than done with a brain injury, I regularly wake up at 3am, and can't get back to sleep.) Eat, your body is a vehicle, and needs fuel, I struggle with car analogies because I don't drive, but you wouldn't set off on a long journey without fuel- the jury is out on 'miracle' foods, but keeping it as whole and healthy as you can can't hurt, sugar-boosts are quick, but the rebound often outweighs the benefit. For pain relief, I cycle paracetamol, ibuprofen, and co-codamol, taking care not to exceed limits, Triptans only ever 'held off' the migraine I used to have before my haemorrhage, but that's just me.

    Above all else, be kind to yourself, and don't expect to wake up 'better' three weeks next Thursday, or at some arbitrary future point, brain repair is a long, slow process, no magic wands or silver bullets, we adapt, and improve, sometimes we relapse. Then we get back up, and start again.

  • Thanks for your advice, its a whole new world to me that I knew nothing about before the accident. I have been trying everything including healthy eating and exercise. At the beginning the doctor told me I would be better in 3 weeks, then it was 3 months, then it was 6 months to a year, but it is just an unknown and I appreciate your encouragement to keep going.

  • We keep facing forwards, and carrying on. Some of us have clearer advice than others, and all of us end up in the 'what now?' stage at some point, as much as medical technology is advancing, and saving more of us, our outcomes aren't defined by timelines. I forgot to welcome you into our group, welcome, we listen, and some of us have lived in this weird new world longer than others, I'm only just short of two years in, I don't know it all.

  • Aw it sounds like you have had a long journey already, thanks for the welcome and advice, much appreciated.

  • Hi Presh

    Similar to you I tried to build up my stamina and suffered relapses when trying to recover from PCS. It is a different world indeed. Helpful tips received include

    For Work - try to obtain a nhs neurospychological assessment as this will help clarify issues you may not be aware off. It may highlight the need to focus on one thing at a time, as you may have problems multi-tasking etc. you may need a long, phased return, less duties, frequent breaks etc

    Identify your limitations i.e. the cut-off point before you feel unwell, then ensure you work below that limit (AKA base line), rest afterwards (no mental or physical stimulation i.e. ipad, tv etc) and only increase duration etc by 10% per week when you are no longer symptomatic at your base level. So if you can walk 10 minutes then experience mild symptoms but at total 15 minutes you have clear symptoms, reduce your walks to just below i.e. 8 minutes, rest, then perhaps the next day repeat for 8 minutes. If you can repeat consistently at 8 minutes without symptoms, then you are ready to make a small increment and repeat. The key is consistency, repetition and rest. Steady progress may be frustrating but it will hard wire what works for you and lower the chance of harming your progress via a relapse.

    others gloshospitals.nhs.uk/braini...

    Exercise plans

    If you are more active, they have found recovery works best if we maintain a moderate heart rate and blood pressure. We can under estimate the amount of effort/exertion due to those lovely happy hormones and then suffer badly for days after. Here is a link to help identify your base heart rate during exercise. Other tips incl •Take frequent breaks – Such as two minutes exercise (under your targeted heart rate) then two minutes rest; two minutes exercise/two minutes rest.

    •Calculator: changingshape.com/calculato...

    Best of luck

  • Hi Dory

    Thanks for your advice and tips for recovery. I have to say that it has been hard at times to know how to pace myself and at times very frustrating. But your comments have been helpful, so many thanks and all the best with your recovery.

  • Hi Presh ....wanted to say welcome.... nothing to add to the excellent advice from others here. But good wishes from me

    TN x

  • Many thanks TN x

  • You sound like you've joined the chronic migraine club. Welcome, however much I wish the door had remained bolted to you.

    As a lifelong sufferer whose migraines got much worse with neuro upset I would advise speaking to your GP about prophylactic (preventative) treatment. I agree about the Sumatriptans - but there are other (more expensive) Triptans out there you could ask about. Other meds are an option - I take low dose propranolol (a beta blocker) which seems to help. (It also stabilises my blood pressure so a good anti-rupture side effect where my aneurysm is concerned). I know some people are prescribed anti-epileptic drugs (sorry can't remember which) in low doses too. Some people have Botox injections regularly. I don't know whether the medical versions give you the cosmetic side effects or not (!)

    Identify your triggers - for me it is tiredness, overdoing it, stress, emotional upset and hormonal patterns. I do what I can to combat these - early nights, daytime resting if needed, relaxation (regular yoga and walking), and having a space to deal with emotional issues and stress (for me that is prayer and quiet days regularly with my spiritual director but I guess you aren't hoping to be a priest...so I leave it up to you to find an alternative that suits!!)

    Don't just live with it though, whatever you do - that way lies a real horror. There is help out there and whilst you may never escape it completely - as I say this is a lifelong issue for me - you can get it to a manageable level. Very best.

  • Dear Malalatete

    Thanks very much for your reply and your advice on different medication, its useful to know. I'm just taking Amitriptyline at the moment but have got a neurology appointment (first one) next week so will talk it through with them then. My triggers are very similar to yours and since my last relapse I get fatigued more quickly. It is difficult to know how to pace yourself sometimes particularly with regards to returning to work. I am looking to do a phased return but it seems quite daunting at the moment and I'm now wary of pushing myself too quickly especially as my relapses are so tough and take me a long while to recover.

    Anyway many thanks again for your reply.