Seizures In My Sleep

[Yazoo34]

Hiya I've been suffering with seizures since May last year. They seem to be happening in my sleep. I don't know wether they're short seizures or seizures happening through the entire night until I awake. I read about them on the internet and they're called Nocturnal Seizures. I'm awaiting results from my MRI to get a diagnosis. It's really tiring and leaving me anxious and depressed. Just trying to understand these seizures because after a few days pass and my muscles have recovered I will often have the feeling of twitching, the shakes or funny feeling in my head.

[BrynGlas]

Hi, I have had fits in my sleep before and the only way that I know I have had one is that I tend to bite the inside of my cheek, so that is the give away for me.

My fits are under control now I am happy to say, but I recognise that drained feeling that you describe very well.

When I was first diagnosed many years ago now, I had 'absence' fits. I never blacked out and was aware of things going on around me, but afterwards, that absolutely drained, cream-crackered feeling is what I remember well and I had no idea that it was epilepsy for some years.

I am happy to say that the medication these days is a lot better than it was in the 80's when I was first diagnosed. I was actually having fits in the late 70's, but I had no idea what it was, I never blacked out or anything like that, so never bothered my doctor about it because it happened rarely.

I finally went to my GP at the age of 32 approximately, when they increased in frequency. I was referred to a Neurologist, who gave me an EEG & told me what it was wrong. I was amazed and so was my family, because there was no internet then where you could find out about such things. We had only ever heard of people falling on the floor and shaking about, biting their tongue, etc etc.

Have you been referred to a Neurologist yet, or been given any medication?

And do you mind me asking whereabout in the UK you are?

I live in North Wales and I am now being treated by a Neurologist from the Walton Centre, Liverpool, who have a satellite clinic near me in my lical hospitol, in Bangor, Gwynedd.

Before that I had to go to the Walton Centre itself (in Fazackerly, Liverpool) which was a trip and a half from my home and on public transport too, (because I had to surrender my driving licence of course) but the Walton Centre I can highly recommend, if you are within a reasonable distance if it.

Have you joined any of the other Epilepsy groups and Forums? It is good to have someone to talk to who knows something of what you are going through, even if we don't share exactly the same type of seizures/fits I would say, so you are going the right way about it, in my opinion.

Please feel free to PM me if you like, anytime.

Just a thought, there is a series on BBC 2 called Hospital. Last week's episode was about the Walton Centre and how neurologists were treating a different type of epilepsy than I have, but it was very interesting.

It will be available on iPlayer now if you would like to find it.

Called Hospital, BBC2, the episode was the 6/8 and if nothing else it will introduce you to the Walton Centre, the only hospital of it's kind in the UK I believe.

[Yazoo34 in reply to BrynGlas]

Hey thanks for a little insight an being able to listen to others having similar experiences helps a bit. So thnks again. I'm from the Midlands.

My MRI has shown an enhancing dural based malignancy; meningioma or haemangiomapericytoma which are possible differentials. The scan on my brain is being reviewed at an neurosurgical and neurology department in North Midlands.

As I await further information I've been google searching the symptom words tryna understand what they are and what they do. To know I may have some what of an tumour that wraps itself around my brain nerves and spinal cord is daughnting. Scary to know that something is pushing down and causing me to have the seizures I have.

I'm disappointed tho because the department have cancelled my appointment due to the COVID19! I am experiencing something I don't understand, they shouldn't cancel my appointment.

The seizures are unexplainable I need answers!!

As u can tell I'm a little frustrated and trying to be calm. So hard not knowing what or when the next one will be

[BrynGlas in reply to Yazoo34]

I understand what you are saying Yazoo.

I didn't have any of those possible problems and I can only try to imagine how you are feeling. I stupidly thought of only my epilepsy, not any of the things you have mentioned from the scan results.

This virus has a lot to answer to hasn't it?

I can only say that this Group will be here when you need a hug or to have your hand held for a few minutes. Life can be hell at times.

Best wishes

[EpilepsyAction1 Partner Epilepsy Action]

Hi – this must be a tough time for you. Seizures can start when you are awake or when you are asleep. Nocturnal seizures are now called sleep seizures because they start when you are asleep. So they can happen if you have a nap during the day as well. We have some information about sleep seizures here that you may find helpful: epilepsy.org.uk/info/wellbe...

It can be hard to know what happens when you have a seizure at night. Most seizures last between a few seconds and 2 minutes but it’s possible to have more than 1 seizure during the night. I’m linking you to our information which explains about different types of seizures: epilepsy.org.uk/info/seizur... . You may be able to use our information to help you to identify what’s happening at night.

You can feel tired and unwell after a seizure and our advice is to rest if you need to. We also have some first aid information you may find useful: epilepsy.org.uk/info/firsta...

It can take a little while to get an accurate diagnosis of what is happening. You might find it helpful to read our information about diagnosing epilepsy:epilepsy.org.uk/info/diagno.... This explains about the different tests and information that’s used to help to get the right diagnosis and treatment for you.

If you can keep a diary of everything you’re noticing this can help the doctor get an accurate picture of what’s happening: epilepsy.org.uk/info/diagno...

If it would help to talk things through you’d be welcome to call us at the Helpline and talk to one of our trained advisers: epilepsy.org.uk/info/suppor...

Regards

Mags

Epilepsy Action Helpline Team.

[Yazoo34 in reply to EpilepsyAction1]

Thank you for your reply. I appreciate the information and guidance you are sharing with me to assist me with any further information I may seek.

Thank you.

[butter_fly]

I have seizures in my sleep. I can relate! Yes, it is unnerving to not be aware that you are having a seizure. Feel free to ask me any questions!

[Yazoo34]

I've had two more seizures in the last three days I feel terrible.. I've told my consultant and my gp and they've arranged for some medications for me to take until I get a booked appointment for neurology. I woke this morning with my wrist completely dead n in pain my calve in agony and my tongue slightly bitten. I really can't stand it I wish it was all gone

[Hidden]

I think its better to have them in your sleep when i have seizures when im awake it feels like im getting electric shocks from my head down my spinal chord with blood and fluid coming out my nose untill i passout since 2014 ive chiped all my teeth had half of them pulled out the dentist said if i get them repaired i will just break them not worth it for $35,000

[Yazoo34 in reply to Hidden]

Since being placed on Medication to stop the seizures I have not had any since my last one. It's not nice having them in your sleep because you can choke on your tongue at the same time which I have had only one of those and if no one notices you having them I don't think the outcome will be very good. All Nocturnal seizures have been me nearly biting my tongue right off and waking up to a blood filled pillow and not being able to feel your wrists or arms which aren't nice at all you can barely walk. Yet I understand what you are trying to say and that can not be nice either. I wouldn't like to experience what you go through. I feel terrible when I have them in my sleep after waking up as I hve no knowledge of having them or feeling until I wake up and it is terrible once you wake.

I have to go visit a specialist at the end of the month for another brain scan as underneath the meningioma they said there is some swelling underneath the meningioma tumour. This is worrisome but as it stands I am happy I have not had any seizures since starting my medication

[Bebopper]

Hi Yazoo34.

I don't know if this will help you, but this is my experience. In May 2016, at the age of 72 with no previous history of epilepsy, I had my first sleep seizure and a second seizure two months later. Taunton Musgrove NHS Hospital (Neurosciences Department) in Somerset subsequently diagnosed these as focal seizures and prescribed the anti-epilepsy drug Levetiracetam (trade name "Keppra"). Every day since then I have taken two 500mg tablets of this drug — one in the morning and the other in the evening. I have had no further sleep seizures or any other kind.

I had to surrender my driving licence for a year, but had no problem getting a 3-year Medical Driving Licence from DVLA Swansea at the end of the 12 month period. This is now due for renewal.