Good Christmastime. I haven’t posted for. Some time. Had a SAH two half years ago. Touch and go but with encouragement from my son I got going again. Driving licence back after a year although I no longer like driving it’s not all natural anymore and I try and keep to short journeys. Too many white lines also confusing. My shunt was adjusted to 2.5 a years ago and my balance improved though still bit wobbly and headaches were bearable. Discharged by Addenbrookes in April. Felt about 8/10. In July for no apparent reason, my headaches got worse so did my balance. Went from neRly a mile with the dog to under 1/2 and feel so tired and low. Dr asked for CT and the result last week showed no over or under drainage and consultant has closed my case.
Has anyone else gone downhill for no apparent reason? I’m a councillor and keep busy but I now feel so low and lethargic. Although I don’t tell the family. I wondered if acupuncture would help. I just don’t understand why I went downhill in July. Anyone experienced the same?
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Barnspops
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Im almost 8 years now and find i go up and down. Well for a while then quite unwell. I had Encephalitis but the after effects are much the same for all of us, its just degrees of the symptoms.
My balance is much worse in the winter, the cold and wind arent good for me. I even fluctuate with the weather!!!
I am told i have a chronic condition, and i think thats true for all of us with BI’s, the worse thing about that is that means you have periods of improvement and then regression.
Acupuncture helped me, as did Tai Chi classes but it got to the point where i just found it too expensive unfortunately.
Id say give it a go you have nothing to lose.
By the way i still have reflexology once a month, that has been amazing for me.
It seems to come with the territory ; since a SAH 8 years ago I can't rely on how I'll be feeling for appointments or other commitments as I can feel well and capable one day but wretched the next.
I eat healthily and keep myself hydrated but haven't tried alternative therapies, mainly owing to cost. I take exercise most days (walking/gardening etc., but some days I'm too exhausted and off balance to do anything other than feed myself and rest.
I wonder whether we're still expecting too much with a compromised brain and should maybe lower expectations, then remain on an even keel.
I've been taking masses of packaging and general unwanted rubbish from my daughter's house to the refuse tip today (recently moved in) and I CAN guarantee I'll be good for nothing tomorrow. But maybe if we either demanded less of ourselves or tackled things one bit at a time, our brains & bodies would cope better ?
….all just guesswork of course, but the doctors are stuck for ideas so, for me, it's a matter of playing it by ear. But I'd be interested to hear how you get on with acupuncture m'dear if you decide to go for it.
I found my headaches which started after a BI in 2004, got more as I got older in my forties and I developed intermittent aphasia, which a neurologist said is a migraine symptom. But the headaches may also be worse because I am doing more, it always seems to be a balance, if I stay at home and avoid exertion they are better. I have light sensitivity and lights in most places have got a lot brighter which maybe why I have worse headaches and aphasia.
I would like acupuncture again but it is expensive, when I had it for 2 months, I felt better and I had a good few months after I stopped the acupuncture . I was encouraged to try different acupuncturist in the same practice until I found the best person for me.
With the aphasia that I have now I have found I can talk better/ without word confusion sitting down , which is not so good when everyone is standing up to talk.
Thankyou very much for all the kind advice from this group, and a happy Christmas and a good new year.
I do empathise with the word recall (mine's the minor- dysphasia) especially when we're trying to convey something heartfelt......seems the more emotionally charged we are the harder it is to express it !
I must say I've always fancied trying acupuncture ; pity it's beyond the reach of most of us financially.
I hope you can manage a stress-free run up to Christmas (is that even possible ?) and keep the headaches at bay. And thank you for your kind words Amber.
Have a lovely Christmas and best wishes for 2020. Cat x
I was back to driving after 6 months and, apart from a slight peripheral vision issue which I compensated for by head movement and which resolved itself within a few weeks, it was the cliché of a 'Duck to water' more or less straight away.
But I walk or take a tram whenever possible anyway and only use the car when necessary.
I still wonder whether your fatigue is a result of setting unrealistic goals. Most of us have failed expectations of where we'd be in 1/2/3 years then learned the hard way that forcing the issue and pushing too hard can badly backfire.
Try not to mourn the things you can't achieve m'dear, but properly appreciate those you can, despite a life threatening brain haemorrhage......life can still be good. x
Cat thank you. It is up and down. It would help me if neuros were more honest but I guess in this litigate world they darent be too honest for fear of being sued. It’s so frustrating not being able to do things as before and walking like someone who’s tipsy!
Walking like I've had 'one too many' is still a big issue for me.
Unlike an obvious mobility issue, which is constant, I find I can walk normally if I concentrate really hard, but then I forget and veer off or stagger...…..perfect impression of an inebriate.
..............not a good look mid-morning.
I must say I do accept the difficulty of prognosis after brain injury. My family were given a bleak prognosis early on but, at my 1st checkup, my surgeon used the word 'Gobsmacked' to describe his take on my progress.
I hope you've come through Xmas/New Year unscathed m'love. I'm taking down the tree & other regalia today and enjoying the nothingness of 12th night ! 😌 x
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