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Do anyone get non epileptic siezure's with CFS/Me

Charts profile image
4 Replies

I've been getting non epileptic siezure's and currently the doctors are looking into CFS/Me as my diagnosis. I only get these seizure if I over work my body, by over work I literally mean walking round my house for 5 mins. My legs just can't tolerate me walking, they are just giving in and I'm dropping to the floor. Days before this started happening I was struggling to shower and get dressed and then started having non epileptic siezure's upon being active. If I sit or lay down it doesn't happen.

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Charts profile image
Charts
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4 Replies
Osteomyelio profile image
Osteomyelio

Do they say it’s an “orthostatic” issue? I have orthostatic hypotension and if

I sit or lay down, but if I’m standing my blood pressure drops and I get light headed and have seizure like symptoms

Charts profile image
Charts in reply toOsteomyelio

My blood pressure don't seem to be dropping when standing, my blood pressure seems to be on the low side but not dropping upon standing. My heart rate rockets when I stand up and move around. I just got a reserve of energy that seems to be like 10 mins, if I use all that it like my body shuts down. Hopefully gets some answers soon

Bobbassett profile image
Bobbassett

Hi Charts,

I have ME /CF fibromyalgia and a bunch of other health issues.

I began having involuntary muscle spasms a few years ago.

I was referred to a neurologist who diagnosed ‘functioning’ myoclonus, in his opinion, caused by hypersensitivity of the brain.

It can happen if there’s a sudden or unexpected noise, more so first thing in the morning or later in the afternoon as I get more tired. Sitting, lying down or sometimes when I am standing in one place. It’s very rare that the spasms happen when I’m walking.

I was prescribed with dopamine and this has helped quite a bit.

Ask your GP for referral to a neurologist.

Wishing you the best of luck,

Take care

Jan xx

ALKT profile image
ALKT

just a suggestion you might like to check the science for m e website .it has a lot of info and a very active community.

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