Weird stuff

Hi all. Been a bit quiet for a while hope everyone is o.k.
I have a question. I have SCA6 and recently I have been experiencing odd things that are quite frankly scaring me.
You know when you’re really tired and start to nod off and you feel like you’re falling and it makes you jump? Well, I am having this quite a lot and they are very intense and at times painful. I actually bit my lip a few days ago.
Not sure if it’s some sort of Epilepsy ? Anyone else experience this ?
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Can't say I have experienced this, Beverley. I'd talk to your neurologist about it.

Beverley,
I have been experiencing my sca6 now for a couple of years and I have never had that experience, although I can fall asleep on command, anytime - anywhere.

Hi Beverley, I have SCAR6 and I have recently started to experience the same thing, very weird! I am going to see my neurologist in a couple of weeks so will mention it, I thought it was just me I have a lot of trouble sleeping and get painful restless legs, well, restless everything really and also very sensitive to touch, anyway, because i don't sleep well I doze off and that's when this weird jumping thing starts.

Hi Beverly,

This sounds like "Hypnic Jerks", also known as "Hypnogenic Jerks". It's one of those things which whilst scary to experience, especially when someone doesn't know what it is or worry it indicates epilepsy or something. But an EEG is usually negative during this type of jerk. They are harmless, but if you want more reassurance, ask your Neurologist about it - they might possibly want to check for epilepsy, just to be sure, but probably won't, but just confirm hypnic jerks.

I used to suffer from them badly. They cleared up in time, and I now haven't had one for years.

http://en.wikipedia.org/wiki/Hypnic_jerk

http://en.wikipedia.org/wiki/Falling_(sensation)

As you can read, one theory is that Hypnic Jerks may be linked to the vestibular system (balance mechanism in the ear), then I guess theoretically that people with Ataxia might have an increased chance of getting them, because the cerebellum is malfunctioning this might increase the chance of misinterpreting balance sensations when laying down to sleep. Another theory has to do with it being a response to muscle relaxation as we go to sleep. Since Ataxia can cause hypotonia (floppy and loose muscles, lack of muscle normal muscle tone), then muscle relaxation on top of hypotonia might possibly increase the chance of Hypnic Jerks. I can't see any research specifically into Hypnic Jerks in Ataxians though, so that is just my own guesses.....

I hope this helps set your mind at rest, so at least you won't worry about them, which of course, might make them more likely to happen. They will probably pass on their own, but consider the tips in the articles, and see if they help.


Yours,
Abs

Hi Beverly..Yes I have had that same feeling..when I lie down..but I unfortunately don't have a diagnosis..

I'm told I do not have ataxia..by EVERY Dr..And neurologist.too.. of course they have NO answers..to..WHAT it is..

I've also run the gamet..of drugs..to no avail..

So..I've given up on getting any..HUMAN help..

My GOD..who created..me knows..I have put it in HIS hands..

I get that quite regularly - not quite strong enough to make me bite my lip, but otherwise I do know exactly the feeling.

I'm not sure if I have SCA (my mother and uncle have it), so can't comment on whether or not it would be connected to that, but Abby_unknown's explanation above makes pretty good sense to me as to why it could be.

Sometimes with things like this just knowing that it's normal can take some of the "bite" out of it. I hope that's the case for you.

Best wishes,

Lute.

Beverly,

Some amount of this is actually normal. I had an EEG a few years ago. Usually EEGs do not find active seizures but record only tendencies for them. My EEG actually showed a seizure, which is rare. The original doctor who interpreted this said that I have two different types of seizures. Two years later, after taking some really dangerous medication, I saw a different doctor - he said that having small seizures during falling asleep (i.e. nodding off) is normal. The rule of thumb is, like everything else, if it does not disrupt your life and/or is reasonable then it is "normal" and OK.

Just my own wisdom,

Norbert

Hi Bev:-)
I’ve experienced these ‘jerks’ too but I haven’t had pain.

Yesterday I saw a geneticist, she had a sample of my DNA
and was conducting research into any association with
Epilepsy and Ataxia. I had a seizure in 1990 and have also
experienced de ja vu.
I’m not suggesting ‘jerks’ are related to Epilepsy.

Currently I test negative to SCA6 and am Idiopathic.

She asked if I’d had falls ( I have) and thought a bone density
test would be useful.

I’ll post any further investigations, all info is useful :slight_smile: xB