#floppy head

[sketchnate]

Ben the Givin a Heck Bear - full cartoon on youtube

[keepocat]

~~~~~~~~~~~🍪

[forsurewedontsingopera]

Ignazios wavy floppy hair is so cute.

I’m having serious Igna feels today.

[withasmoothroundstone]

So the ACTH stim test is tomorrow.

There'd better be a doctor at this one.

And I find myself praying they find something obviously wrong.  Which is an odd thing to want.  But if they find something.  That means they can fix it.  And if these episodes are related to cortisol levels.  Then after I start treatment I might never have another again.  So I want to find something, and I want to get into treatment for it, at this stage.

I imagine anyone with an undiagnosed chronic illness can understand this kind of perverse desire when getting tested for things.

It is not pleasant, at all, to wake up and be too weak to move, for a long time.  With your head flopped on your chest or to the side.  They could be right, it could be adrenal, it could be a seizure, it could be a symptom of my possible myasthenia.  But tomorrow we are tracking adrenal problems, and that's what I hope we find out of the three because it's the most treatable.

[withasmoothroundstone]

Okay so I got home last night.

Basically they want to wait on further testing, they said it could be so many things that they can't really know unless they see me while it's happening.  They questioned my evening staff person pretty extensively, who's seen a much less severe version of the same thing.  So my support staff have instructions to detect this and call 911 immediately if they see it happening.  But other than that, I have ACTH testing next week, and they want me to follow up with my neurologist in case it's neuromuscular or seizure-related.

[withasmoothroundstone]

Okay now I'm waiting downstairs.

For my ride to come and take me to the urgent care clinic.  My friend says they might just send me on to the ER, but at least this way I'll have my wheelchair with me.  I hate going to the ER in an ambulance because I don't have my chair.  My van is coming now.

[withasmoothroundstone]

It happened again.

It was milder this time, but it happened anyway.

I think it happened a few times throughout the night, but I was really out of it so I'm not sure.  I do know that around 8 am, I woke up and moved my head slightly from the spot it was propped up, only for it to flop down to the side, painfully hard, and not move.  This time I didn't panic, couldn't panic really.  But I tried moving my arms, and they moved a little bit, it was less severe than last time, but I still couldn't move them very well.  I still don't know how it stopped -- that's the weird part, I never quite remember it stopping, I don't know if that means I'm passing out or what, or if it's a sign of cognitive problems.  But it was so much milder this time, and I still needed medications that the hospital wouldn't be able to give me, so I didn't call 911 when I was able to.  I hate the ER and I don't want to go there for anything short of a serious emergency.

So I am talking to my case manager and seeing if there's any way he can get me to the urgent care clinic.  Transportation is the main issue (regulations keep changing), but I vastly prefer urgent care to the emergency room when I can help it in any way whatsoever. 

I can't say I'm not uneasy that this has happened again.  But I keep getting the nagging feeling that this happens more often than I think it does, and the cognitive blur that accompanies it prevents me remembering clearly.  There's something so familiar about waking up with severe weakness and a floppy neck combined with cognitive problems and difficulty staying conscious.  But I'll have to discuss this with my doctor again whenever he schedules testing on the adrenal issues.

[theramblingark]

Quick Poll

Who else has encountered the forward-tilted head thing with their baby in the car seat?