Odd sensation in head going to sleep

[Fluffybee]

Hi,

I’m new on this site and been diagnosed for about 4 years, there’s so many questions I would like to ask anyone to may have experienced the same as me.

I have temporal lobe epilepsy and one of many things that happen to me is as I’m going to sleep, just drifting off and have this massive surge feeling going through my head, this happens up to 3 times a night rarely none.

Does anyone else have the same or am I going crazy !!!!

[KE2019]

Not in bed at night, but I have that feeling, like a hot wave going across my head.

Hugs x it gets easier as time goes on

[Fluffybee in reply to KE2019]

Apart from drifting off to sleep at night the only other tine is if I nod off during the day or in the car I get the same thing, it’s really strong, pretty frightening.

What type of epilepsy do you have ? 😊

[Fluffybee in reply to KE2019]

I think I struggle more because I wax them diagnosed for 4 years so felt no one believed me, EEG came back clear.

But luckily meds helped especially lamictal and Keppra, I then got transferred to a specialist in epilepsy rather than a neurologist who specialised in Parkinson’s. And within 5 minutes he told me exactly what I had, I was relieved someone finally believed me but then hit me I had a long road ahead and a lot to adjust to, so cried all the way home 😫

[Wintersbite]

Hi I've had the emotions and sometimes if laying down I had the feeling I was on a raft on choppy waves during a bad storm didn't matter if my eyes were closed or open (good thing it didn't make me seasick lol) but my mum did ask me a few times why was I crawling on the floor? I told her you wouldn't believe me but my epilepsy is at sea and in a storm she took notes and laughed but said let's get you to land she helped me up that's funny in itself as she was smaller in all ways to me (I'm 5"5 and back then 22st and my mum was 5"2 and used to be 8st this always made me smile as it showed how super strong she was) oh and I'm a photosensitive tonic clonic