To hope DH is wrong about nocturnal seizures

[Overactiveimpulsiveness]

I have epilepsy which is mainly nocturnal; it is triggered by lack of sleep, alcohol, all of the usual ones. The main trigger however is hormones. I get clusters during my period, and mid cycle.

I take two medications at the moment (max dose of brivact, and Lamotrigine both twice a day) which have dramatically reduced the frequency, and severity. There are still some slight symptoms during the two times of my cycle, mainly prodromal, and nothing serious. However I have noticed during my period this month I have woken up teeth clenching as well, no grinding, just the clenching. I am not stressed at the moment. Could this be linked to the epilepsy, or is there likely another cause?

Dh thinks it is, because it is a huge coincidence that this has happened during one of my main trigger points. Does this mean I am still having seizures potentially in my sleep? I am just at my wits end with it, having been trying for years to get it fully under control.

This sounds distressing, OP. I don’t think anyone can say. If this is linked to seizure activity, would it represent an increase or intensification? If so perhaps you should contact your neurologist or, second choice, GP.

Thank you @poetryandwine I'm worried it has happened before in my sleep, because I have woken with aching teeth previously, sore neck etc. It just always seems to be at the two main trigger points. Since the medication it has controlled the rest of the month really well, and the intensity has reduced massively at the main trigger points. Prior to the meds I was falling unconscious, so this is an amazing improvement.
In the past the epilepsy would cause my body to tense badly during my sleep, which now it isn't doing as far as I am aware, my muscles haven't felt as sore. Today is the worst the clenching has been, it hurts right up to my ear on my left side only, my neck was sore yesterday. I have been through periods of worse stress, and not encountered this, so it is really odd.
I have an appointment coming up in a month with my neurologist, and will mention it.
I am just so fed up of it all, I am lucky the medication has worked as well as it has, and have to accept it may never fully go. I want to go back to work, my youngest has just started school .😩
I have told dh I don't want to just assume everything is linked, because it could be something else. He is convinced they need to give me a different drug to relax my nervous system/brain.

It sounds like maybe something that can eait for the neuro appt.

I sympathise greatly! I have complicated migraine and was sometimes l

Sorry to hear you're worried, epilepsy is shit (I've done a lot of threads about it!) I'd also post this in Health if you haven't already, AIBU gets the traffic but some MNers have hidden AIBU as it's a bit Fight Club. I also have nocturnal epilepsy that unfortunately changed to daytime too.

Do you have tonic clonic seizures or is it "just" symptoms you are experiencing, my brain is a bit woolly so I may be reading your post wrongly. Do the symptoms usually include teeth clenching, or is this new? I'd also ask if the clenching is actually waking you up, or are you waking to find they're clenched? It doesn't sound like it could be a side effect of meds, if you've been on them for a while already?

I can't really help that much as if I have a seizure, it's clear I've had one. I find though with new symptoms though it's always a process of elimination to get an answer - ruling everything else out to leave a (usually just preceded by a "well it's possible" ) answer - rather than a symptom just having a straightforward answer/diagnosis. Does that make any sense? I'm tired and not very articulate!

I've been amazed on here how much MNers medical support varies for epilepsy. I seem very fortunate as my hospital has an epilepsy support service staffed by specialist nurses - you can ring the helpline and leave a message with any query, like the one you have, and they will call you back. Others on MN say they just have to wait to see their consultant yearly with no contact in between!

So my "advice" would be ask the professionals, but I don't know how easy it is for you to do that? The hospital I am under for epilepsy isn't my local hospital, it's further away but has a specialist neuro centre. I think you have a right to choose, a few MNer have chosen to have their epilepsy care from a different hospital.

So my post is really just to say ask the experts if possible, and to sympathise with you. It's just so fucking never ending and never straightforward, isn't it? I had a short period where my seizures were nocturnal and controlled, then all of a sudden it all went haywire. One benefit of having suffered for years though was that during all these years technology had improved massively so an updated MRI gave some answers. It's worth pushing if you've not had one in a while?

So much depends on your medical care, but I hope you get some answers.

Oh, I am so sorry about your migraines, and hope they improve as well.

Gosh I took so long typing that I cross posted with lots, sorry!

Sorry

falling unconscious. It was hard to distinguish from seizure and, interestingly, is controlled by an anticonvulsant (topiramate). I haven’t lost consciousness in years and only occasionally get a more traditional migraine. Seems a miracle.

Anyway, best wishes

"He is convinced they need to give me a different drug to relax my nervous system/brain."

If only it were that simple...

Thank you so much for your reply, and time taken. I am sorry for everything that you have experienced yourself. It is frustrating isn't it?!

I have focal to bilateral tonic clonic. They were all over the place before treatment, some didn't progress past certain stages, some did. Just before starting meds they worsened to all fully progressing to unconsciousness.

Since the medication the more serious seizures have stopped. I have suffered only prodromal symptoms with awareness twice a month, which is amazing considering. I don't lose urinary function during my seizures; the only way I could tell if I had experienced a nocturnal one was if, they happened as I was going to sleep, woke me up, or on waking, and if I woke up feeling like I had been kicked around a football field, with migraine dizziness and tiredness the next day.

I had so many symptoms I think the remaining ones the meds haven't mopped up are coming the light. I think I have had clenching before, but all of the other symptoms sort of took away from it.

I had an mri 3 years ago and all showed up as normal. They think it is genetic due to a deceased family member having had it. I will definitely mention it to my neurologist. I can get in touch anytime, due to it not being 'under control' officially yet, where it would then go to a nurse for annual check in. I just feel like such a fraud with the symptoms being so minor now. I don't know what other drugs they can give. I take 200mg brivact, and 200mg lamotrigine per day, split into a morning and night dose.

Oh sorry @Epilepsy I forgot to say I have been waking up to finding their clenched, and it has also woken me another time.

Could be worth getting an Apple Watch and app to see if it picks up seizures?
You can buy a headset which notes seizures including absence seizures, it’s almost like a portable eeg. You can hid it under a beanie but you may not need to if issue is when in bed asleep.

I have always wondered about this kind of thing, thank you. I have a watch (not an expensive apple one), but it shows heart rate changed which seem to show spikes from 60ish to over 100 at times during sleep. Dh thinks I need to send screenshots to the neurogist. I feel these can be unaccurate, though, and caused by dreams, movement or other external factors. I will look up the headset, but it is probably very expensive.

Sorry, that should say inaccurate, and they're further up; I clearly cannot spell today!

i think if you got an Apple Watch direct from apple you could send it back even if you’d used it worth checking.

heres the headset I looked at but I’m sure there are others just google eeg headset
www.epihunter.com/product

Maybe not relevant but some medication can cause teeth grinding/jaw clenching/ bruxism - not sure about the AEDs you're taking but some SSRIs do eg Sertraline

Thank you, I only take 2 AED's, no SSRIs. No known side effects of that. I am getting hormonal migraines as well, probably all connected. It is so tricky with epilepsy, because you need to rule out all of the possible other causes too; it is a nightmare. I think that is why I ignore some symptoms and say "Oh it is probably X, Y, or Z causing it.

It's good that you have a neuro appt coming up so hopefully it can be investigated further. Please don't feel like a fraud - I don't think any symptoms are "minor". Like you say, there never seems to be a definitive answer for a specific query, just a list of things to rule out to find an answer! So all symptoms are part of a jigsaw, and the more pieces you have (even the smallest or most minor pieces), the more information you have to get a look at the whole picture.

Epilepsy is just so fucking frustrating, it's like herding cats getting to get it under control. The amount of medication choices and 8 million side effects for each med, doesn't help! It's hard to untangle what is epilepsy related and what is medication related.

Not to mention the kicked around a football field bit! I am very kicked around today and feeling very self pitying fed up. Liquid diet today (and a straw!) so I can't even eat cake...

Meant to say, my neuro isn't very keen on smartwatch/other medical device at home type of thing. They prefer proper clinical tests carried out in a hospital setting. Lots of Hellraiser (showing my age!) type of wires coming out from your head type thing...

Hi i just wanted ask a question if have a 16year old son with ASD learning disabilities and epilepsy i see you say something about prodromes I'm not 100% sure what this is but had a letter today from doctor and it says it in my son letter my son gets pain in his head every day it can happen up to about 15 times a day feels different to a headache don't last long from seconds to 20 mins different lasting times he gets really panicked and think he is going to have a seizure but he doesn't have a seizure and last week while when he went to see his doctor she said she thinks the seizure as she seen it happened so I just to see what prodromes you have sorry to ask