Twitches / jerks

[Anna_Mellor]

I have been diagnosed with nocturnal epilpesy since 2019, however since june /July I have begun to notice I am beginning to have twitches and clusters of these mostly in the evening. I have now begun to experience a constant headache. Is this similar to anyone else has experienced?

Thanks for your feedback

[Caesard]

What subtype it was diagnosed? Simple, parțial, complex, generalized? Localization? And what about etiology? What's likely to be causing it?

[Anna_Mellor in reply to Caesard]

Thanks for your reply

Well it hasn't beem disgnosed as the epilepsy nurse said they would speak with the neurologist .

I think I'm looking for if anyone experiences this and how it looks / feels ? As I experience them frequently each day now but are not long lasting. It just whether this is myoclonus or something else

Thanks

[Caesard in reply to Anna_Mellor]

I am sorry but this clustering may be a confirmation . May it's the key word here.

Did they started you on something? Some ACMs may give the same effects as a side.

I would suggest:

1. to focus on diagnosing it. Is it epilepsy, is it something else (it can be)

An EEG should be easily obtained, an overnight EEG is of paramount importance for diagnosis and localization (overnight as you say it occures during the night - maybe you detail a bit on that - what happens, how does it looks and feels)

2. If confirmed - optimally done in paralel - investigate the possibly etiologies (infectious, immune, autoimmune, CVD related, metabolic, hormonal, etc)

Also a MRI with epilepsy sequence is in order and very important to set or exclude a structural problem.

Time is on the essence, please try to stick to reveal what the problem and it's nature are.

Your story is scary close to mine. I feel you and I can relate. I know it's very scary but let me please reassure you it will get better.

[Anna_Mellor in reply to Caesard]

Hi Caesard

Thank you for a very detailed response and I definitely will take this and speak with professionals.

I haven't had an EEG/ MRI since before my diagnosis as my first one was thought to be isolated. I then moved and therefore moved nhs trust so the new trust hasn't seen my history files. The beauty of the nhs !. So given the time elapse and the new symptoms I will ask for this in put.

I will also consider what could be triggers/ if I'm unwell/ periods etc

Thanks for giving me some thoughts

Hope you have a nice / week 🙂

[Las1k in reply to Anna_Mellor]

Hi Anna

My 15 yr old daughter did get twitches and jerks , plus bad headaches , she was diagnosed with juvenile myoclonic epilepsy back in Aug 2021, she also has photosensitivity epilepsy, her medication levetiracetam stops her full blown seizures and near enough all the twitches and jerks , however lately her headaches are getting worse and are mostly daily which I think maybe due to studying on laptops and under horrible lighting in her classrooms, she does say once she's stopped the studying and taken some paracetamol the headache subsides in about 10/15 mins , she says the headaches are intense and are felt above both eyes . Once gone she says it leaves her with a "heavy " head for a while .

Hope that info helps in some way

Lindy 🙂