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Mountain Goat
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15 Apr 2023, 3:29 pm

skibum wrote:
Mountain Goat wrote:
No idea. I did have a brain scan thing to check for fits. Nothing unusual found. Will need to research what cataplexy is so I can understand it better.
Yep, cataplexy is not epilepsy. You won't see it in a seizure scan. Definitely tell your doctor about what happens to you and ask if you need to be assessed for a cataplexy diagnosis.

https://www.healthline.com/health/cataplexy#symptoms

I also have mild narcolepsy. I sometimes have sleep paralysis. Cataplexy is related to narcolepsy. I have read that narcolepsy can be more common in Autistic people but I have to research that more. But as far as we know, there is no connection between narcolepsy and Autism.


I did look and some symptoms are similar but others are not. The triggers of what I get are either some smells such as new carpets or soaps or perfumes (Soaps and perfumes I actually like the smells of but I think my brain does not!). Another trigger which I have to guard against but have no control of and that is if I have a plan mapped out in my head which has been agreed upon, but someone else makes a sudden unexpected change. I don't feel angry at all but this sudden unexpected change can cause me to shut down!
Often when in a work situation or some appointment etc, I will go trough the whole shift in my mind for hours the night before before I can sleep to prepare myself mentally. For an appointment I often will drive there a day or two before to check I know where it is and where to park so on the day I don't have any unexpected issues.

But two of the main aspects are why it does not tally with cataplexy is that I can get a shutdown when I am calm and not in an extreme emotion due to a trigger such as smell. The other is that one aspect of cataplexy is that when people have an ephisode where they are on the floor unable to move, their hearing and feel is not effected. When I get what I call a shutdown, my hearing IS effected in that I can't externally hear because I have loud tinitus and am in a deeply distressed state (Where with cataplexy one is not distressed). Will seem odd but I will not normally as a rule be distressed when whatever the trigger is that caused the shutdown, but when I pass a partial shutdown stage and head into a full shutdown I am often internally stressed (More of an internal panic as I have a horrible feeling when the tinitus comes (Unable to describe) which sets me into a panic. A bit like when one is about to throw up is the best description though a shutdown feeling has nothing to do with thefeeling of throwing up. Is the way ones panicked state is that is similar (I go unconcious when I throw up and need someone there to clear my airwaves but shutdoens have nothing to do with throwing up in feeling other thanthr same sort of internal panic just before and while they happen... Though with shutdowns, it is more of a fainting feeling with it (But different to a faint as when I faint and come round I need attention to help mecome round, where as with a shutdown I can't deal with attention as it sends me into repeated shutdowns.
(Once while in hospital for a blood test I had repeated shutdowns lasting almost five or six hours due to a staff nurse repeatingly forcing me to speak each time I came to after each shutdown so the shutdowns kept repeating, and I was taken down to A&E and a very skilled doctor there said it was definately not fainting and asked if I was autistic due to my experience in whathad happened. (They had me on monitors etc while in A&E for the last hour).


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skibum
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16 Apr 2023, 10:32 am

Mountain Goat wrote:
skibum wrote:
Mountain Goat wrote:
No idea. I did have a brain scan thing to check for fits. Nothing unusual found. Will need to research what cataplexy is so I can understand it better.
Yep, cataplexy is not epilepsy. You won't see it in a seizure scan. Definitely tell your doctor about what happens to you and ask if you need to be assessed for a cataplexy diagnosis.

https://www.healthline.com/health/cataplexy#symptoms

I also have mild narcolepsy. I sometimes have sleep paralysis. Cataplexy is related to narcolepsy. I have read that narcolepsy can be more common in Autistic people but I have to research that more. But as far as we know, there is no connection between narcolepsy and Autism.


I did look and some symptoms are similar but others are not. The triggers of what I get are either some smells such as new carpets or soaps or perfumes (Soaps and perfumes I actually like the smells of but I think my brain does not!). Another trigger which I have to guard against but have no control of and that is if I have a plan mapped out in my head which has been agreed upon, but someone else makes a sudden unexpected change. I don't feel angry at all but this sudden unexpected change can cause me to shut down!
Often when in a work situation or some appointment etc, I will go trough the whole shift in my mind for hours the night before before I can sleep to prepare myself mentally. For an appointment I often will drive there a day or two before to check I know where it is and where to park so on the day I don't have any unexpected issues.

But two of the main aspects are why it does not tally with cataplexy is that I can get a shutdown when I am calm and not in an extreme emotion due to a trigger such as smell. The other is that one aspect of cataplexy is that when people have an ephisode where they are on the floor unable to move, their hearing and feel is not effected. When I get what I call a shutdown, my hearing IS effected in that I can't externally hear because I have loud tinitus and am in a deeply distressed state (Where with cataplexy one is not distressed). Will seem odd but I will not normally as a rule be distressed when whatever the trigger is that caused the shutdown, but when I pass a partial shutdown stage and head into a full shutdown I am often internally stressed (More of an internal panic as I have a horrible feeling when the tinitus comes (Unable to describe) which sets me into a panic. A bit like when one is about to throw up is the best description though a shutdown feeling has nothing to do with thefeeling of throwing up. Is the way ones panicked state is that is similar (I go unconcious when I throw up and need someone there to clear my airwaves but shutdoens have nothing to do with throwing up in feeling other thanthr same sort of internal panic just before and while they happen... Though with shutdowns, it is more of a fainting feeling with it (But different to a faint as when I faint and come round I need attention to help mecome round, where as with a shutdown I can't deal with attention as it sends me into repeated shutdowns.
(Once while in hospital for a blood test I had repeated shutdowns lasting almost five or six hours due to a staff nurse repeatingly forcing me to speak each time I came to after each shutdown so the shutdowns kept repeating, and I was taken down to A&E and a very skilled doctor there said it was definately not fainting and asked if I was autistic due to my experience in whathad happened. (They had me on monitors etc while in A&E for the last hour).
I would still talk to a neurologist about cataplexy. Where did you see that in cataplexy one is not destressed? Cataplexy is a stress response. It can also vary significantly in how it manifests from individual to individual. Don't rule it out just from reading a couple of things on the internet about it. Those descriptions are not usually complete. Definitely run it by a neurologist because if you do have this, you need to know about it. At the very least, you will know one way or the other from a personal exam of your specific body done by a neurologist.


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BreathlessJade
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18 Apr 2023, 12:07 pm

Recidivist wrote:
BreathlessJade wrote:
is that common?


I usually post this link when someone questions shutdowns as it's usually insightful.

https://everything2.com/user/Zifendorf/ ... s/shutdown

i'll check it out thank you!



BreathlessJade
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18 Apr 2023, 12:15 pm

colliegrace wrote:
I think I experience partial shutdowns. Usually it happens at work when I get severely overloaded.

Here's how I'm defining these experiences right now:
Severe overload: being extremely irritable, feeling sick & just overwhelmed in general. Still able to talk to customers and may be able to appear cheerful or semi-cheerful.

Partial shutdown: I am running on fumes. Talking to customers is very difficult and I may only be able to respond to very necessary questions. I cannot mask at all and customers can tell I don't feel well, may think I'm just in a very bad mood. I cannot escape the situation so I just deal by forcing myself to do the bare minimum.

it's like you're describing my day. wow. i have to pitch product for like 6 hours and at some point i cannot speak hardly at all. the running on fumes resonates with me too. it's so frustrating while everyone around looks happy and loud usually; its stinkin' obnoxious. plus certain people trigger me in different ways. sorry for your suffering but glad somebody can relate