Viral Encephalitis

[GIL910]

Hi

I am at total confusion with my mom’s recent symptoms of viral encephalitis.

She in year 3 of her journey and her brain has been severely impacted.

She was doing okay but over the last month she seems to. have declined.

My mom is sleeping most the day. She lost interest in the things she enjoyed.

She communicating less often.

She has not interest in self care,

The other day she said she has hallucinations.

Even the doctor is confused all her blood tests came back fine.

She is taking a small dose of Pregablin twice a day. With anti seizure medication

[kitnkaboodle]

Sounds like me, minus the hallucinations. It is expected to have setbacks after E, but the hallucinations make it sound like a neurological problem. Are there any other neurological symptoms? The other ones you listed could be neurological, but also could be psychological or emotional.

[GIL910 in reply to kitnkaboodle]

Thank you so much for your reply.

It is really difficult to pin point what’s been going on.

She seems to lost any interest in doing normal tasks like washing and dressing.

But she eating ok

And sleeps most of the day.

The other thing she keep mentioning is constant burning pain in the mouth, feet and hands.

Her previous CT scan last year showed permanent damage temporal lobes is permanent.

[kitnkaboodle in reply to GIL910]

Burning pain as in nerve pain?

[GIL910 in reply to kitnkaboodle]

It seems like that.

Things have been worse over the last few weeks in my mom behaviour.

[kitnkaboodle in reply to GIL910]

Is she currently attending or open to psychotherapy?

[GIL910 in reply to kitnkaboodle]

Hi

She has had it when she got out of hospital

[kitnkaboodle in reply to GIL910]

Might be worth doing again now

[GIL910 in reply to kitnkaboodle]

What nobody can get to the bottom of is why is she having these strange episodes

Where she sleeps for most of the day and then spaces out and becomes unresponsive.

When she comes around she said she been hearing voices like someone speaking to her and it sounds quite scary.

She talks in a state unconsciousness.

[HSE_Survivor in reply to GIL910]

Can you get an appointment for a review with a neuro specialist ? Encephalitis is a major brain injury , so you’re not being unreasonable asking for the change in your mum’s symptoms to be reviewed.

The recovery journey is a rollercoaster ride. My first 6 months were ok, and then I started losing hair and areas of my skin became purple/ bruised . I lost all energy , but my local Dr didn’t think it could be my meds, as there’d been no changes to the meds I’d been originally given in hospital .

My husband arranged a review with a neuro specialist, and the specialist diagnosed me as becoming allergic to my epilepsy meds, even though I’d been fine on them for the previous 6 months. My meds were changed, and my symptoms improved .

I hope you find some answers, too,

[GIL910 in reply to HSE_Survivor]

Thank you.

[Tertia3 in reply to GIL910]

How is your Mom now? I hope she has improved. Has she had her Vitamin B12 levels checked? It's just that some of her symptoms sound as though she may be deficient in this vitamin. Just a thought, if you've tried everything else and nothing has helped.

[GIL910 in reply to Tertia3]

My mom is still the same. Her epilepsy meds have been increased. We are concerned that she spends most of her time in bed.

She still has strange episodes where she talks to deceased relatives.

She got an appointment with the neurologist next month so we are hoping that will give us further insight into what is going on.

Thank you for asking.

[Tertia3 in reply to GIL910]

Thanks for your reply. I hope the neurologist can help your mom.

[GIL910 in reply to kitnkaboodle]

Thank you. This is helpful.

[Gandalf2]

Knowing which parts of her brain are affected may help. The different parts have different jobs. It may be in her medical records after an MRI scan. A website drugs.com lists different drugs with their side effects and some patient reviews. The effects of enc. are varied and can include everything you mention.

Fatigue sounds to be involved along with depression. Information about coping with fatigue is available in booklet form in hospitals, rest and exercise. If your mother had previous psychological issues thay may be worsened with enc. If her life was previously quite active and good at coping, she may find her present situation intolerable. I find crosswords, reading and the internet a great way of exercising my brain, plus Scrabble and dominos.

It's important to build on what remains, rather than get upset about what has gone. If she is in hospital it will be difficult to keep up whith visits and encouragement. A social worker from your GP can arrange extra support. In our case this takes the form of physio, psychotherapy, speech therapy and counselling. There is telephone help on the Enc.Soc. website.

If your mum responds positively to support, there will tend to be more available as the therapies are in short supply and will be directed towards those who benefit the most. If your mum suffers from short term memory loss she will find it difficult to remember things and lose track of her progress. What did she enjoy doing in the past? It may be possible to work from that direction. Short 5-10 minute things on YouTube are OK for me, films and documentaries are OK in small doses.

My other posts may help with further information.

I'm getting tired, best of Luck, G2

[GIL910 in reply to Gandalf2]

Thank you so much this so helpful 😊