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Katybug

Strange New Phenomenon Happened Today

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Has anyone experienced this?

I got home from a morning appt and was tired so I took a nap. I woke up 3 times and each time I felt like I was in a dreamlike state (but I remember each occurrence so I must have been fairly conscious). The weird part comes in as each time I woke up I was having some sort of "tremors" or shaking through my whole torso and limbs. I couldn't discern if I was shivering or tremoring. I could see my body tremoring through the blanket. I definitely wasn't cold. And then, it felt like it stopped after 20-40 seconds each time and I would instantly fall back to sleep. Once I woke up and was feeling rested/ready to get up, I have not experienced any more tremor/shaking/shivering. I feel mostly ok but some of my muscles are sore like they feel if you've been shivering for a long time.

I honestly don't even know what to make of this. Any ideas are welcome.

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Oh my Katybug. That doesn't sound like fun. I have not had that happen myself but I just wanted to send out a virtual hug your way! :)

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I'm so sorry Katie. I don't recognize it but Sarah's suggestion sounds a possibility to me. Hope it won't happen again!

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Hi everyone! Thanks for the support. I thought about the NE spikes. And maybe that's what it was. It was just so weird (like a trip to Crazytown weird) because it would wake me up but only for less than a minute and when the shaking would stop I would just be instantly asleep again. Of all the things that have happened to me since becoming sick, this wasn't the worst or most painful, but it was definitely the strangest.

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Sorry you're feeling strange :( Sometimes people jerk/twitch just as they're falling asleep (hypnic jerk), but I've never heard of shaking before sleep.

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Hi Claired. Yes, I do sometimes experience myoclonic jerks as I fall asleep. This was completely different than that but thanks for the suggestion and the support.

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Hi Katie. How dreadful. I'm so sorry you experienced this. It must have been frightening. Other then Sarah's thought of possible NE spikes I can't think of another explanation. Hopefully this is a one time occurrence.

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Katy, when I first became sick, I had something similar happen a few times. Fortunately, I have not experienced it since.

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I haven't had that exact experience but most times when I'm not feeling well trying to sleep can make me worse. Actually usually all sleep makes me worse now that I think of it. No matter how I'm feeling, even if I'm doing great, every morning is a struggle for me.

Hope it doesn't happen again for you!

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I have had this in the past. I thought I was having a seizure. It only ever happened while resting but not awake. It was scary. I felt like I lost control of my body but was aware of it. I don't know too much about it but I did do some research on "deep" seizures that are not caught on an EKG. Later, I thought it was likely due to electrolyte imbalance or lack of blood flow.

For years I had the "pop fizzies" in my head...not real seizures per se but like someone shook a coke can and let it off in my head. I have not had that for a little while now. But I can tell you that these happened when I took SSRI's, abilify and NSAIDS. I don't know if it was a mild serotonin storm ???? I really don't know...

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Thanks folks. I had one episode of this again last night. I guess I will be chatting with the docs about this. I just got my DEXA scan report in the mail and my bone density is in the toilet (not shocking due to meds I'm on) but whatever this new muscle or nerve thing is will need to be discussed before/as part of what we decide about addressing my bone density. Some of those tx can affect calcium levels and electrolytes.

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Really interesting video. I'll have to pull out my old sleep studies and compare to what this doc is talking about. There is another study out there showing POTS patients have something called alpha delta sleep syndrome.

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One of the drs. mentioned in the video is my neurologist! This is so relevant. I don't respond very well to sleep medications but have great success with valerian root. Taking Gabapentin works wonders for the nerve issues. My legs don't move around and keep me awake. they used to just jerk but not like restless leg syndrome...just jerkiness or uncontrolled twitching. Since taking the medication, I don't have that anymore. It also would happened during the day too.

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Interesting. I can't take sleep meds (besides benedryl based meds) because they give me night terrors. But I have in the past taken a homeopathic called Formula 303. It's valerian, passiflora, and magnesium. I actually used it for muscles spasms after I dislocated my tail bone but it's other indication is use as a sleep aid. That might be worth a try if I have any more of these episodes. I was ok last night.

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