Venting Sleep seizures?

[Red]

I've been having really weird experiences as I'm falling asleep - it happened only once in 2018, twice in 2019 and so far, four times this year; three in this month alone. It happened last night, which is why it's so fresh on my mind; I need to get it out.

It's like sleep paralysis except it's not - I can usually hear and sometimes see what's going on around me, usually a YouTube video as I'm drifting off. A vibration starts on one side of my head along with a rushing in both my ears, like you get when yawning, starting low and quickly both sensations rising in intensity to be unbearable. With this comes the inability to move, including my eyes, which have both been stuck closed and stuck open on different occasions. I can feel my back arching and there is generally a very hard fight through panic and fear into consciousness before finally coming round.

Nobody has ever witnessed it, my heavy sleeping partner has never noticed it the two times he's been sleeping next to me when it's happened. I've only ever been dreaming once as it happened last night, and it was incorporated into the dream, my mind imagining my partner reacting and helping just to snap awake and find him sleeping, despite having dreamt of a cluster of around three or four attacks (this usually happens too - I can even wake up, shift positions and have it happen again).

Nobody believes me, it's just another in a long list of "nonspecific symptoms" that have cumulatively plaguing me over the last few years. But just recently I've experienced the onset of migraines I've rarely experienced before, along with various other neurological symptoms such as odd, singular muscle twitches, random pins and needles/feelings of wet and/or warm/cold in small patches on limbs, and sudden, unexplained throwing up of entire stomach contents from time to time, mostly at night and in the morning (happened 2 hrs before episode last night)...

It's distressing, doubly so when you can't really talk about it. Don't want to worry my fiancé or teen, yet it's hard to keep a lid on it all when it's all happening so often! Frustratingly, every time I mention it to anyone it's explained away as "sleep paralysis" and "oh everyone gets to random oddities from time to time". Agreed. Every day though? Nobody is taking it seriously despite me shrugging it off until this month, where it just seems to be getting worse and worse.

It's making me feel twice as bad not to be heard, not to even have anyone attempt to figure it out or even believe I'm feeling what I'm actually feeling, just the assumption that I must be making a big deal out of nothing - something that is very much not part of my nature - and considering how impactful it all is, I don't think I'm really making much of a fuss at all.

IDK just a vent as nobody listens IRL. Sorry to be on here whingeing again, I try not to make it too often lol. Thought getting it out in writing might clear it from my mind for a while so no obligation to read, but thanks if you did

 

[Giraffey]

That is a near-perfect description of hypnagogia (a set of hallucinations occurring as you are falling asleep). It's a fairly common but entirely subjective experience. To an outside observer, you will just appear as if you were sleeping, although you may or may not suddenly wake up afterwards confused and distressed. The equivalent when it happens in a dream (usually towards the end of the dream) is called a hypnopompic hallucination. I experience it regularly myself. I won't go into the possible causes as unfortunately, there are many and it's difficult to evaluate remotely, even for a professional.

You mention having a slew of odd neurological problems that have developed over the years, have you ever had any of these investigated by a neurologist or a GP with neurology experience? It can be difficult to get taken seriously, especially if the initial investigations reveal no abnormalities or obvious cause.

If you've had the appropriate evaluations to rule out a physical disease (organic) cause (bloods, physical, EEG, a brain scan if indicated etc) and they're still drawing a blank - have a look through some of the symptoms here and see if any of it appears to fit: https://www.neurosymptoms.org

If it does, then don't take it as a diagnosis (common sense I know, but I have to say it), but it might give you another avenue to explore with your doctor and indeed the neurologist after a referral. It's a fairly common complaint in neurology clinics although lesser-known among GPs and other practitioners. I've recently been treating someone who suffers from this and the improvement has been dramatic.

Don't give up Red, whatever is going wrong, there is an answer out there and hopefully, a path can be found to help you feel better

 

[Red]

Reading now. Thank you

 

[_Minsk]

sounds similar to Exploding head syndrome(Youtube Link) i think

 

[Good4Nothing]

Could you be having strokes?

 

[Red]

Who knows what it actually is?
There are many things it potentially could be, looking at several different conditions that have these signs and symptoms in their descriptions.
What I need is a medical professional who's willing to look deeper, run the right tests and find out what's wrong instead of instantly dismissing me as insane and/or lazy and/or dramatic. I don't know why it's so hard to find one.

 

[Giraffey]

Who knows what it actually is?
There are many things it potentially could be, looking at several different conditions that have these signs and symptoms in their descriptions.
What I need is a medical professional who's willing to look deeper, run the right tests and find out what's wrong instead of instantly dismissing me as insane and/or lazy and/or dramatic. I don't know why it's so hard to find one.

The first step Red is to start keeping a symptom diary. Whenever you experience one of these neurological symptoms, write down the time (roughly), the symptom (be as specific as you can), and briefly what you were doing (and/or thinking) just before it happened. Once you've collected a week or two worth of symptoms, write them into a little summary (ie. during the last week I have experienced the following symptoms).

You can then take that information to the doctors and it should be much easier for them to build up a picture of what is going on. Not all conditions require a battery of testing, but unfortunately, some doctors can be more resistant to investigate than others. Try to find a doctor that will listen, if you've gone to the trouble of producing a symptom diary then that is a good start because it makes their job easier and helps to tie a number of different and seemingly unrelated complaints together.

That would be my advice on first steps anyway. An experienced doctor or neurologist will spot the subtleties in certain symptoms and patterns of symptoms and be able to narrow down the list of what it could be and once you start to do that it's much easier to be taken seriously and get the right treatment :)

 

[Red]

I've been keeping a fairly comprehensive symptom diary for over a year; I did the same for my endometriosis and not one of my three specialists for that even cast an eye over it, or its abridged version.

I think you're right though - it simply comes down to finding a doctor who is willing to listen instead of glancing at me in one moment and drawing wrong conclusions, possibly heavily coloured by their own prejudices... hard to judge how they're going to be until meeting, and at £200 a consultation it's not as simple as casting around indefinitely they're not even my resources!

It's so tiring and I'm already exhausted.

Hoping the next doc is much more approachable!