Seizures: Hi All Just wondering if anyone's... - PSP Association

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Seizures

beau1988 profile image
13 Replies

Hi All

Just wondering if anyone's LO with CBD has experienced seizures. If so, can you please describe one. My hubby has had 2 incidents that may or may not be a seizure. Any advise would be appreciated. Thanks

Kerry

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beau1988 profile image
beau1988
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Kevin_1 profile image
Kevin_1

Hi Kerry

My Liz is toward the end stages of PSP. She has started getting seizures. They present as rigidity in her whole body. Her face contorts as if in pain. She sometimes bites her bottom lip and cannot release it afterwards without a little assistance. There can be smaller 'spasms' after the first 'big' one. There is no shaking afterwards. She is not disoriented afterwards and she is conscious and aware throughout the fit.

The doctors cannot objectively decide whether it is a muscle cramp like seizure or some form of epileptic seizure. However the italicised comments above seem likely to rule out epileptic episodes. Liz herself has managed to communicate that it is like cramp, it is painful (epileptic fits are not generally painful) and that she experiences it in her muscles and not her head.

She is given Midazolan by intra muscular injection whenever she has one of these which is about every couple of weeks. It works very well. Midazolan is used for both epileptic type seizures and muscular seizures/cramp.

I do hope this is helpful to you.

They are horrid things!

Warmly

Kevin

beau1988 profile image
beau1988 in reply toKevin_1

Thanks Kevin sounds similar to my hubby. He threw his head right backwards & yelled out both times.

Kevin_1 profile image
Kevin_1

They are horrid aren't they.

Can you get anything from the doctor?

beau1988 profile image
beau1988 in reply toKevin_1

Well funnily enough we had just been to neurologist & he reduced one of his meds because he said as the brain deteriorates it can't cope with the meds & they can cause the jerks & seizures. I have cut the med back & so far no episodes but he still has the jerks

Kevin_1 profile image
Kevin_1 in reply tobeau1988

That's great. Could you tell me what med. that was? I will check Liz's meds.

PM me if you prefer.

Thanks

beau1988 profile image
beau1988 in reply toKevin_1

Citalopram. It's an anti depressant. He was on 40 mgs now down to 20.

Kevin_1 profile image
Kevin_1 in reply tobeau1988

Thanks

Liz is on 20mg Citalopram. I will talk to the doctor.

beau1988 profile image
beau1988 in reply toKevin_1

Ok good luck to you & Liz

kenh1 profile image
kenh1

My wife CBD has been on Midazolam by syringe driver 5mg over 24hrs. for over 2 years now with no seizures or spasms.

Her whole medication regime was prescribed by the Palliative care team based at our local hospice.

beau1988 profile image
beau1988

Maybe because of midazaloms seditive qualities. My hubby takes serepax & the jerks definitely are much less until it starts to wear off. Our GP indicated that jerks & seizures would be a part of this disease as it progresses

Spiralsparkle profile image
Spiralsparkle

Yes Mum has had several big tonic clonic seizures since 2017 & trialled many epilepsy drugs. It often happened in the early hours so luckily in bed so not much damage done to her apart from inside her mouth where she had bitten herself. They are scary things. She was be in alot of pain for days after when the whole body had gone into spasms. She would not be aware it had happened until she came round. She also started having smaller episodes in the day where she would have ones that happened without the full body being involved but she wasn't aware something had gone on for a few seconds.

She has had myclonic jerks since 2013 that got worse over time.

She was on Citalopram that was debated by every man and his dog as known to increase spasms , jerks etc they all disagreed on what to do for the best.

I've no idea how sadly where she is at or what meds they ended up messing about with. The hospice got her on a good regime last year but then the GP took over and cocked it all up once she was in the nursing home

beau1988 profile image
beau1988

Thanks Spiral. Sorry for your mum. It's hard with conflicting advice. I think it's trial & error most of the time.

Tttp profile image
Tttp

Good morning, my brother has been having seizures for about a year now had one when the Doctor came to see him they are called muscle seizure’s and very common, he like zones out but when it’s over he is ok, so many different symptoms, they come and stay or go.

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