Struggling

[Support4Norm]

My partner had a fall 8 weeks ago whilst on holiday in Bulgaria. He had a fractured occipital bone and 3 small bleeds on the brain. He spent 12 days in hospital and a further week in the hotel before he was fit to fly. Within three days of being home he was walking quite well, only occasionally using a stick. He has no sense of taste or smell, still has dizziness and nausea when moving, a gripping pain at the back of his neck and frontal headache. He sometimes forgets words and gets more confused when tired. He continued to improve gradually and managed a,two mole walk on his own just over two weeks ago.

Then he had a real set back, we don't know why. His walking is difficult, he needs a stick and me for support. He shuffles saying he doesn't have yhe energy to lift his feet. Looks down instead of forward, stumbles and tries to rush forward. He says his brain is telling him to run but he can't keep up. Doctor has prescribed drugs for his dizinness but they' re not helping.Hes also talking sodium valporate as a preventative for epilepsy. He's never had epilepsy but it's what was prescribed in Bulgaria.

He says he knows inside it will be alright but he won't do anything to help himself. He's diabetic and has a very poor diet, he's eating very little, prefers sugary food even ghougb he has,no taste. Refuses to drink more yhan a couple of decaf coffees a day, although he's told repeatedly that dehydration will make his symptoms worse.

I tried to introduce a routine so I can help him get up and have regular meals. He's now decided he'd rather 'play it by ear' and get up when he feels like it. The problem is he hates getting up because thats when the diziness starts so he just goes back to sleep. He has no problem sleeping, shoild I just leave him?

I can't understand why he had the setback he was doing so well.

He had a follow up brain MRi on 10 October but no results yet. We've not seen any specialist in this country.

We argue you a lot too. I just want to help him get better but think he needs to help himself too. He keeps saying I'm waiting to see the experts for help.

Sorry for the long post, I'm so tired of not knowing what to do.

[Alibongo60]

Hi Support4Norm, he’s got a lot going on there and if he will I would suggest he goes and sees his doctor, did he have seizures, in Bulgaria, after his fall is that why they prescribed sodium valproate, maybe his doctor could push for an urgent appointment with a neuro surgeon here especially with his diabetes, which if he’s not eating properly etc is going to be putting him at risk of going hypo . I would be concerned that this weakness shuffling his feet etc is new and could indicate something is going on in his brain, or it could be just down to the medication either way it needs checking lots of luck love Alice xx

[Support4Norm in reply to Alibongo60]

Thank you Alice. He's no history of seizures, think it was just given at a preventative. We've got a call planned with his GPS on Tuesday.

[Alibongo60 in reply to Support4Norm]

Is it just a phone call, will be a shame if they can’t see how he is walking, because obviously that’s not normal, when I was in charge in care home I had resident who walked similarly and it was a drug reaction, so fingers crossed, some of these drugs tend to build up in the system and can then cause problems. Keep us informed I hope you manage to get Norm sorted love Alice xx

[cat3]

Hi m'dear. You mention an anti-seizure med. I believe they're sometimes prescribed as a cautionary measure after brain injury, even in the absence of seizures.

Maybe have your husband's doctor think again about these meds as the side-effects can include dizziness & sleepiness (unhelpful for your man's existing issues ?) .......check this with his doc.

Is it possible he's overdone things since returning to the UK ? The two mile walk reminds me of my own determination to prove that I was unaffected by the brain injury. I immediately went gung-ho (bought a bicycle) .....followed by major meltdown.

Brains are complex and delicate organs ; after injury they need months of healing and resting, healthy diet and lots of fluid. So hard for you to instill these rules I know.

The sleeping could perhaps be disillusionment with failed attempts at regaining control, effects of meds, or exhaustion ?

Can I ask how his occipital injury was treated, and did the brain bleeds resolve without intervention ?

Cat x

[Support4Norm in reply to cat3]

Hi Cat

He was told the occipital fracture would heal itself, so no treatment.

He had scans in Bulgaria on the day of the accident and 3 days later. At that stage we were told the bleeds hadn't got worse, there was no change and he would need a follow up scan 30 days after the accident. Back in the UK the gp said it wasn't urgent but we fortunately got cancellation, and he had the MRI scan 7 weeks after the accident. The radiologist said he'd try to rush the results through but could take 6 to 8 weeks.

[cat3]

Thanks for that info. The present pace of treatment, tests & results is diabolical (I've waited 10 weeks for an abdominal scan & 18 months for a osteo appt).

I hope your husband's results come soon and help highlight his issues. In the meantime it might be beneficial for him to sleep as much as he needs. It could be post concussion, which often wipes folks out.

Maybe make a deal that you'll let him be for now so long as he drinks plenty of water and eats more healthily !

You can get advice & support and printouts on brain injury from the helpline on 0808 800 2244 after the weekend.

Best wishes to you both.. x

[Hidden]

Morning. First I'd say please seek the help of a neuro surgeon and your GP. Although the support from here is fantastic, don't take medical advice from here. As a point on that the advice about lots of fluids can be bad. If there is a pituitary sodium issue too much fluids could have catastrophic results. Push to see your GP in person and get referrals for Occupational Health if you can at the least as they will assess him quickly.

[Beachlover321]

Good morning Support4Norm. 8 weeks is still very early days for your partner. I had a fall on the beach 13 weeks ago hitting the back of my head on a rock. I also had an occipital fracture and a bleed on the brain. I was in hospital for 5 days. The fall has also left me with no sense of smell or taste. I have also ended up with very sensitive hearing, whereby I have to wear earbuds if there’s any noise from crockery, cutlery, vacuum, just day to day noise really that goes on in the home is excruciating. It’s bern very difficult to visit my grandchildren because of the noise. I’m on the list to see an ENT specialist. I’ve also ended up with bad headaches, especially if I overdo it in any way at all. Recovery is very slow going and tiredness is always with me. Since I had the fall, I’ve decided to eat everything healthy for the brain - just to make me feel like I’m doing something to help myself really,

I agree that there’s very little support following a TBI.

I haven’t experienced the shuffling, but I was pretty dizzy whilst walking around in the early days and did not feel stable. It’s better now but I still tend to push to the right when for some reason.

They do give anti seizure tablets here after the fall for a week or so as a preventative.

I would definitely push for a GP appointment and not a phone appointment as the doc does need to see his walk. I found the GP was out of his depth with the TBI, he even admitted it and told me to ring the hospital secretary.

I have also been referred back to the neurologist but haven’t had an appointment notification. I wish your partner all the best in his recovery, but you do need to keep pushing the doctors in my experience. Good luck.

[Wheelchairdave]

Really sorry to here this story I'm hoping for the situation to improve soon.

[Painting-girl]

Hmmm so he's had a traumatic brain injury, with bleeds, only eight weeks ago, so based on my very mild traumatic brain injury, he's likely to be in a pretty bad way still, I am guessing he feels like hell and his brain isn't be working very well - working memory, which we use to keep things in mind while we make a decision ( any decision) can go out the window after brain injury. He'll be sleeping a lot, but not necessarily at night. Bear in mind that doing everything will be difficult for him. (By the way, when I lost sense of smell and taste with Covid this year, the only things I could sense were sugar, salt, and heat from spices - so tended to overdo salt and sugar - will he eat curry?)First thing is to get him some medical support - please ring the Headway helpline in office hours ( 0808 800 2244) and ask who you need to get the GP to refer him to first. Then ring the GP. Then make sure he's referred to consultants with expertise in brain injury. Neuropsychologists can run tests to see what brain functions aren't working that well, and advise on strategies to cope. Neuropsychiatrists are the medical doctors who are the experts on drugs for brain injury - so don't worry if one is recommended, it's not about it 'being in the mind' it's just the way the different branches of medicine have grown.

It will help your partner if you can help him make notes of what he wants to ask before an appointment, and then also go into appointments with him - because our short term memory is usually shockingly poor too.

Hopefully he will be able to access some occupational health locally too - his GP is the gateway to all this. Was he covered by any insurance when this happened? How old is he?

Meanwhile while that is in the pipeline, have a good read of the Headway literature.

One key thing is for him to take a break from any screens, reading, noise, and light, for ten - fifteen minutes every hour - just to lie down in the dark. It honestly is a game changer in terms of coping - a lot of symptoms are related to the fatigue following brain injury.

[sashaming1]

Look for headway websites (eg. headwayuk.com) for help. There are others too.