Swelling on brain from seizures

[Bahemoth]

My DH 39 has been in hospital for a week now due to a swelling on the brain which they think is due to his epilepsy (he has nocturnal epliepsy) They think his brain is constantly seizuring although he is not physical showing signs of having a fit. He’s now on intravenous epilepsy drugs to try and stop the seizure activity and is due another EEG on Monday. (He’s ready had MRI, CT scan, lumbar puncture etc.) We initially thought it was vertigo.

They doctors aren’t 100% sure the swelling on his brain is due to his epilepsy and said it may be a mitochondrial genetic condition which they’re also doing a DNA test for, as he also has type 1 diabetes which can be associated with mito diseases.

In the meantime the swelling has caused peripheral vision loss, loss of key skills eg he can’t put a shirt or trousers on and severe headaches. He also doesn’t seem quite himself cognitively. He seems very obsessive about his condition, keep taking over me (although he usually quite quiet) and he’s not asking much about the kids etc. Not sure if this is a personality change due to his condition or just his way of coping.

Has anyone been through something similar? Do symptoms like this usually improve over time? Im so worried for him and I’m worried he may not be able to do anything by himself or work in the future. Any advice? Doctors are so busy I’m not getting much from them…

Very sorry about the suituation you are in.
Not a medic but have some experience of neurological units.

The main priority is to gain a diagnosis - only then will the future become more apparent.
Assuming he is in a neurological unit it does take some time to establish this, as brain swelling cases can be complex with a multitude of diagnosis. This can be very stressful and frustrating, it may be that the medical team can’t give answers presently.

With regards to current symptoms, many can improve once swelling or contributing factors ( such as subclinical seizures)are managed. This level of seizures can take time to respond and the finer tuning of seizure treatment can take time to establish. I have seen people with personally changes/ odd behaviours (as a result of subtle seizures rather than long term brain changes) who have got back to themselves.

Once stabilised, if he continues to have symptoms that you describe above- support from neurological Psychology and neurological Occupational Therapy would be recommended as they can assess his cognitive/ behaviours and his level of function. They can also support recommendations for discharge/ support and/ or rehabilitation needs when the time comes.

Once things become clearer I would hope there will be specialist nurses or teams to support, there is a charity that can signpost once there is a clear diagnosis

https://www.thebraincharity.org.uk/

Not sure if the above helps but keen to give some response (as noted none to date).

Thanks so much and yes he is in the neurology ward at the moment. Your post is reassuring and hopefully they can manage the seizures soon so the swelling reduces and we can then see if there are any long term issues. I’ll take a look at that website too. Just trying to find out as much as I can to support him and know what to expect.