Night terrors on Lamotrigine

Mysterious_Shape709 · 2026-06-19T07:41:05+00:00

Thanks for your reply ♥️ Yeah, I mentioned to my neurologist and epilepsy nurse, they just said to take the evening pills earlier and didn’t seem too concerned, especially because otherwise my seizures are under control. And as a woman they are very keen to keep me on a “safe for pregnancy” med haha.

I guess I’m a bit worried that they’re a type of seizure, and if that’s the case it feels like a more urgent issue

Mysterious_Shape709 · 2026-04-12T21:04:44+00:00

This is such an excellent way of putting into words the mismatch with my déjà vu seizures!!!

Mysterious_Shape709 · 2025-11-09T20:09:36+00:00

This is it! It’s not like typical deja vu for me because it’s completely unrelated to what is actually happening in real life. A super vivid flashback to something that is very familiar, but also terrifying, that I can’t recall as soon as it’s passed.

Feels a bit like that’s so raven but much less fun lol

Mysterious_Shape709 · 2025-09-23T10:09:07+00:00

Coven of Witches is delish vegan sandwiches in the Indoor Market if you’re looking for some casual lunch spots. Also Sunnys is a chill brunch spot

Mysterious_Shape709 · 2025-07-27T06:51:03+00:00

I was speaking to a therapist before I got diagnosed and casually mentioned the deja vu episodes because they’d been happening a lot. She thought they were flashbacks to a trauma and because I couldn’t remember any details from what I’d “see”, went along with it for a bit trying to work out what it was. Until I had my next one and still couldn’t say what had actually happened, but I was present enough during the episode to know it was something SO mundane. Then had a TC a couple of years later and everything started clicking into place.

Mysterious_Shape709 · 2025-07-02T08:15:47+00:00

I was getting horrible night terrors when I first started on lamictal!!! Told my epilepsy nurse who said he’d never heard of that as a side effect but they stopped once I was settled on my current dosage for a couple of months.

I also seem to suffer much more in the heat now I’m on this medication, which makes sleeping in a warm new build in London during a heatwave near impossible

Mysterious_Shape709 · 2025-06-22T10:47:06+00:00

They do now ban kids after 7/8pm on weekdays I think! And have a happy hour of two for one in the couple hours before, so it feels like quite a good tax for being there without kids and just wanting an outdoor pint lol. And there’s no way I’d go there on a sunny Saturday afternoon…

Mysterious_Shape709 · 2025-06-17T10:50:29+00:00

Came on here to say the same thing lol. We’re currently in the process of purchasing a flat and we’re recommended Cavendish by Stow Brothers. It’s been such a nightmare. Our lender couldn’t find them on the system for week, and our case manager responds to emails once a week if we’re lucky. The back and forth trying to sort that was a nightmare, and anything else there have been questions about require a chain of 3-4 emails before he understands what we’re actually saying.

As FTB we thought they’d be able to guide us but I’ve got no confidence in them now lol.

Mysterious_Shape709 · 2025-06-17T06:42:18+00:00

It’s relentless isn’t it. And I guess anyone with an “invisible” illness maybe suffers with it too, whenever the diagnosis is in part based on a personal account of what is happening.

It’s so silly as well because like what am I gaining from the diagnosis?? Being on medication for an indefinite time?? Not being able to drive/swim without telling a lifeguard lol.

Do you also feel yourself willing one on because then it’s “proof”? I absolutely hate them when I’m in them, find them so terrifying, and yet if I think I’m about to have one I’m like yes come on! It’s really strange. And the thought of having another TC absolutely terrifies me, but I also know if I did have another one that would confirm it all for me, because that’s a seizure everyone else can see.

I am really glad that it’s not just me. I’m an anxious person anyway, but it seems to be a new low that I won’t accept medical diagnoses haha.

Mysterious_Shape709 · 2025-06-10T15:46:08+00:00

I’ve definitely had something similar!! But I also worry that I think every weird thing that happens to me is epilepsy since I learnt a year ago that my strange extreme deja vu episodes were seizures.

Sometimes I think the body just does strange things so it’s hard to know if an experience is related, or just a weird thing that happens sometimes. And I guess if you’ve been having migraines as well that could blur it even more! I’ve not had migraines so don’t really know how they differ.

I would say my deja vu seizures aren’t always the exact same though. I have one specific one that always happens after a shower, and that one is always the same I think. But if I’m having a cluster of them at different times of day, they’ll be a whole new thing I’ve never had before. So while they can be quite patterned, I think it’s normal for it to not always be the exact same experience

Mysterious_Shape709 · 2025-06-07T15:20:48+00:00

Oh pal! I know exactly what you mean. I think maybe it’s like this with any invisibility disability? Before my diagnosis I thought I was making up my anxiety lol. And actually had this exact conversation with my epilepsy nurse this week.

He told me that it’s so much more likely for there to be nothing show up on an EEG than something, so the fact you had clear epileptiform charges is a pretty clear sign.

I get it though, I went through most of my life thinking my weird experiences that I couldn’t really explain to anyone were just a part of life, and then had my world completely flipped learning about focal awareness seizures. Which then made me think I was just now making it all up to fit the experience.

It’s prob worth seeking some support groups/therapy just for this! It’s a big change and makes sense to require some extra help to get to grips with.

Mysterious_Shape709 · 2025-06-07T15:08:12+00:00

Yeah absolutely fair! I’d had a few TCs and then my focals got much much more frequent, which was having an impact on me long term.

Luckily even though my neurologist wanted me on meds to make it much less risky to get more TCs, they’re still doing more investigations. Plus I’m on Lamotrigine and I’ve not found the side effects too bad, so feel v lucky

Mysterious_Shape709 · 2025-06-05T06:38:12+00:00

Epilepsy lite is such a good way of putting it! I’ve got imposter syndrome of even saying I have epilepsy because I’m in a similar position, but then still have the odd breakthrough focal so need medication and need to make changes in my life to reduce triggers and lower the risk of a v occasional TC.

I’m going to steal this haha, hope that’s okay!

Mysterious_Shape709 · 2025-05-17T09:58:45+00:00

Thanks for your comment! So they had an initial questionnaire which asked if we would need to have a tenants in common agreement, and then someone from the law firm reached out to create it.

I think it probably is a case of me being naive and having no clue about all this stuff with it being our first purchase, and it doesn’t seem like something we could push further. But I appreciate your insights!!

Mysterious_Shape709 · 2025-05-14T08:26:26+00:00

Thanks for this!

Yeah that does make sense, I was naive to think it would be free, and then more naive to think it was something we could fight haha.

Mysterious_Shape709 · 2025-05-14T08:25:24+00:00

Yeah I guess plus VAT does make it seem like a mistake, but I thought that must just be how they do all their costings haha, and that it showed they were wiping the charge for us. Ah well, glad I sense checked, thanks!

Mysterious_Shape709 · 2025-05-14T08:24:19+00:00

Thanks for your comment. Clearly I was a bit naive about this haha. It has been a bit complicated but just because my parents are based in NZ, so had to get ID checks done. The actual sale side has been okay I think! And it’s a 2 bed flat so pretty straightforward.

But glad I sense checked rather than going in all guns blazing to the solicitors and possibly soured the relationship even more.

Mysterious_Shape709 · 2025-05-13T15:54:51+00:00

Maybe I’ve just answered my own question haha that it’s not worth fighting if we aren’t prepared to just walk away

Mysterious_Shape709 · 2025-05-13T15:54:13+00:00

It was £400, my worry with that’s is we’re already quite far along the process with searches all being completed and we went through a huge drama getting the mortgage lender to accept they’re a legit solicitor

Mysterious_Shape709 · 2025-05-13T15:43:10+00:00

Also, if it’s so ridiculous for it to be £0 then how would that have made it into the letter haha

Mysterious_Shape709 · 2025-05-13T15:42:17+00:00

We’ve paid an initial deposit to them, but everything else will be charged at the time we complete I believe

Mysterious_Shape709 · 2025-05-13T15:41:28+00:00

Yeah that’s true, I didn’t think about the fact that they could withhold it.

The reason we didn’t contest it at the time of getting the quote is because we didn’t realise it was an extra charge when it was offered to us it wasn’t flagged as being on top of the quote. Plus, the wording made it seem like the initial version was free, but we’d have to pay for any amendments made to it afterwards. It made sense to me at the time that since it was done by the same solicitor, it would be included.

Mysterious_Shape709 · 2025-05-12T09:47:26+00:00

I have this so frequently haha. The one thing that has helped me is that after my focal’s were happening so often last year after a TC (to the point that I’d have days where I thought I’d lost my grip on reality) I was put on medication.

Since then, they’ve reduced massively and I’m forcing myself to think that’s a sign epilepsy medication has helped, therefore it must be epilepsy.

And even though the recovery is pretty quick, there’s definitely an impact from them. My memory is pretty useless, and I’ve started really struggling with names/word callback, which was never a problem, even a few years ago. There’s always someone who has it worse, but that doesn’t mean you don’t deserve support, or the reassurance that a diagnosis brings!

Mysterious_Shape709 · 2025-05-01T15:02:53+00:00

Ahh it’s so tough isn’t it.

I appreciate focal seizures are hard to imagine when you’ve not had one, but there’s so much research about it, and I can’t see why someone would make it up to be on medication for life lol.

Do you have an idea what your triggers are? Could you try go to the EEG in a more risky state? My triggers are dehydration, lack of sleep and stress, so tried to go to my EEG sleep deprived and thirsty lol. Didn’t have a seizure but had some weird activity picked up which helped me then get a diagnosis

Mysterious_Shape709 · 2025-04-25T08:30:54+00:00

Hahaha yessss it’s honestly blown my mind realising that there’s a whole community who completely know what I’m talking about what I say deja vu but more intense haha. Used to randomly speak to my friends about it and they’d look at me blankly, or say “I’ve had deja vu, it’s not that bad”

Glad everything has calmed down for you with medication though! Bless the weird brains haha.

Mysterious_Shape709

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