Please help

[cosmos]

Hi,
I don't know whether this is the right forum to tell about my symptoms, but anyway here I go, hoping to find some light to my condition.

I think I suffer of nocturnal epilepsy yet, it's not very clear to me or to the doctors.

This is what happens to me:

- When I go to bed, some times I hear strange noises and sounds that might wake me up. It might be a bell, some weird geometric sound, a car's engine, etc. Also while falling asleep, I might experience very horrible thoughts of tragedy and death; I'm not sure whether they come by themselves or I think of those things myself. The truth is that they are always scary, related to catastrophes or people I love dying.

- Then I fall asleep. At some point I start having some dream about electricity, light or something similar to that; then I wake up and I feel electricity running all around my head, on my scalp. It's not cold or hot, it's difficult to explain. Then I wake up EXHAUSTED. And when this happens, I experience this weird "headache", which is more like a sensation of cold/warm on my scalp. It lasts for few hours, then it goes away.

Sometimes during the day I might have this weird cold/hot sensation around my head; sometimes when I'm hungry I get it. Some others right after eating, sometimes with no reason.

- Other times I dream of machine guns or hammers and then I wake up to this dreams. And then I am SURE I have suffered one of those strange noises that sometimes I hear in the evening.

In the past part of my face used to jerk, but that hasn't happened in long time. When that happened, I was half aware that I was suffering some sort of convolution. I always woke up to it. This convolutions make me think I suffer of nocturnal epilepsy.

However, I have had three studies and no one of them have actually shown any sign of epilepsy. They read like normal and it is SO frustrating.

I have big dark circles under my eyes. I'm tired all the time.

Could this be nocturnal epilepsy?

If you could comment, I would very much appreciate it.

Thank you,

PS, I am a Mexican man, 41 years old, I'm not a native English speaker so I hope I have written this correctly.

 

[kirsten]

Your English is perfect. You don't need to worry about that. Some of us native English speakers fall apart when it comes to writing stuff down anyway, so you don't need to put all kinds of effort into writing correctly.

I'm sorry you're having such an awful time.

Dreams (or nightmares), when they don't happen with seizures, don't necessarily point to epilepsy. You're mainly saying that your problem is a whole lot of nightmares. That seems like more of a sleep/stress/depression problem. Maybe you're having an especially hard time at the moment. Those things can make you have a lot of nightmares. And when you're having a particular nightmare and then wake up being half asleep, you might hear the very things you were dreaming about. That's something everyone can experience. Your sleep stuff kind of leaks into your reality as you wake up. It's normal. Without seizures, they don't indicate epilepsy. That doesn't mean your problem isn't a serious one needing care.

Feeling electricity running around your head isn't typically the same sort of thing we who have epilepsy experience. It's not that literal. We have altered states of consciousness, ranging from feeling different to being completely unconscious, and our body convulses. Electric feelings have been described by some of our members but they aren't very common.

The facial jerking could be a symptom of some sort of neurological condition. There are quite a lot of possibilities, and other tests (apart from MRIs, CT scans, and EEGs) that would diagnose them.

If your doctors haven't turned up anything like epilepsy, it's their job to decide what the problem really is. Too many doctors rule out one diagnosis and then throw up their hands saying, "I dunno." That's not good enough. They are supposed to start ruling out all the other possibilities. Sometimes, they do that by treating the most likely diagnosis, and if that doesn't help, they start looking for other possible diagnoses. If your doctors aren't doing that, it'd help to find a doctor who will.

 

[cosmos]

Hi Kirsten,
Thank you SO much for your answer, it's been very enlightening and relieving.

Yes, I'm aware that there are other possibilities for my symptoms (specifically what refers to my nightmares, there is something called Hypnagogic Dreams, which describe at least partially what happens to me), although I haven't found any alternative explanation for my face jerking (which I haven't had in years).

I hope I find an answer to what happens to me, I'll continue my journey, I need to sleep!

Thank you again!
Carlos

 

[Nakamova]

Hi Carlos --

Some people do experience "tingling" or "brain zaps" as part of their seizure symptoms, but those sensations can also be symptoms of fatigue or anxiety, so it may tricky to figure what is causing what. Have you had an overnight sleep study done? That might be helpful in diagnosing what is going on. Sometimes there can be hidden issues (like sleep apnea) that are causing sleep problems.

Best,
Nakamova

 

[cosmos]

Hi Nakamova,
Thank you so much for replying.

I did some research and I don't believe I suffer of brain zaps. My electric sensations are mild, like electric rain, like flashes on the surface of my scalp. The 'tingling' thing I have, but they are only when am falling asleep, so as far as I understand they are "normal".

The one thing that keeps concerning me about suffering of epilepsy or not is that after having these electric rain around my scalp (always related to a nightmare that eventually wakes me up) I do suffer of a mild headache. If not epilepsy, then what is this?

I had a sleep study and two EEG with three different doctors. They didn't show any sign of epilepsy.

I suffered of a mild sleep apnoea/hypoapnea, but I had a surgery to correct my deviated septum and I use a mouthguard and I have started feeling better.

I've been doing lots of research over this weekend and I believer I suffer of Hypnagogic Hallucinations; this describes slightly more accurate what I experience.

Still, I have never found anything that accurately describes what's going on to me while I sleep. I hope it is anxiety and fatigue (yes, I'm exhausted!).

Thank you again!

 

[Nakamova]

Electric sensations followed by headache could be migraine, though this seems less likely if they are nocturnal. Do you keep a symptom diary? Do the sensations change in frequency or intensity? Are there certain triggers that make them worse? Do you have any other health issues, dietary sensitivities, etc. that make them worse?

 

[arnie]

I have probably had epilepsy much of my life, even though I was officially diagnosed with it in 1982. I'm 56 now. As a child I used to hear noises when I was waking up. Usually it was a knocking sound. I also smelled really bad smells at night from time to time, and I have always had very vivid dreams. I tend to think that the smells and noises were from epilepsy, and the dreams, who knows? You definitely need to get some answers so you can sleep. Let us know how it turns out.

Cheers!

 

[cosmos]

Hi Nakamova,
I don't keep a symptom diary, maybe I should start now. Yes, the sensations do change of frequency but NOT in intensity. It's always sort of the same (except long years ago, when I did have a face jerking).

As for the triggers, I have identified only one: if I'm sleeping and I hear some noise, I might have one of these nightmares that will eventually turn into an "electric sensation" on my scalp, waking me up.

As far as I know, I am not allergic to anything and I don't have any dietary sensitivity, but this I can't be sure because I have never kept a track on this. Yet, my intuition tells me it's not related.

Sometimes I believe I have some sort of little brain damage that become irritated with fatigue, sleep deprivation and noises in the surroundings of my bedroom. I don't know whether this makes any sense.

Contrary to what Arnie is saying (thank you for replying) I am experiencing this sounds as I fall asleep/wake up only at this point of my life; although my dreams/nightmares have always been very vivid. I have never smelled anything though.

Thank you all!
Carlos

 

[N Sperlo]

Hey Carlos. Situations are different for everybody, but when I was having seizures in my sleep, I wasn't remembering my dreams.

God luck with figuring this out!

 

[cosmos]

Hi N Sperlo,
Thank you very very much for your comment and although you're right that every situation is different, I think you have posted a great insight on nocturnal epilepsy.

May I ask, have you met anybody that actually remember his or her dream while having a nocturnal seizure?

 

[N Sperlo]

Not that I have spoken with. I may have memories of some dreams during simple partial seizures as I woke, but for a few years unbeknownst to me I was having (according to my doctor) simple partial seizures and barely remembering any dreams. Now that I'm controlled, I'm having dreams like normal. I would expect others in similar situations to have similar experiences.

 

[cosmos]

Thank you N Sperlo!

I really wish I know what is happening to me. Last night I had one of this dreams/seizures/electric sensation. But this time it moved from my head to my shoulder; the electric feeling was there, and had a dream related to that. I woke up jumping from it and felt asleep immediately afterwards.

It's so confusing.

Good luck to all of you!

 

[Nakamova]

Hi Cosmos --

Have you tried changing your routine or taking any sleep aids before you go to bed?

 

[cosmos]

Hi Nakamova,
I have tried changing my sleeping routine but haven't really managed to do in part because when I wake up from one of these things, I always feel very tired next day so I take a nap, otherwise I simply can't work. I am a writer and need to have my full attention on my writing, which as you might understand is difficult.

I have tried some sleeping pills, but the result is not nice; I get even more sleepy the next day.

I will try to change some habits anyway, I'll start sporting again (although I have suffered of this in the past, even when I was swimming).

 

[Nakamova]

Sometimes a magnesium or melatonin supplement before bedtime can help with sleep. I like a supplement called "Super Snooze", which contains both of those ingredients plus other things like chamomile and valerian. Assuming there are no contraindications, you could give something like that a shot. best of luck!