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Kris4444

Vibrating Sensation Waking Me From Sleep

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Does this happen to anyone else? If so, what causes it?

At first I thought one of my dogs was scratching itself on the bed but once awake I realized that it was me and it was internal, the vibration was on the inside of me.

It only happens in my sleep. Just weird.

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Hmmm. I'm taking 1 mg of clonidine too. I take it in the morning.

Yes my NE levels are1199. I flush like crazy but no one has looked into mcas yet but we are working on it.

I know this has happened before the clonidine but it was different, more of a buzzing feeling. This is exactly like you said, like the bed was shaking or an earthquake...

I take an SNRI. I wonder how many of my symptoms might be from that.

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I forgot to answer you about sleep. Im exhausted when I go to bed and normally fall asleep well but I wake often and toss and turn a lot. I wake up tired. Sleep is my #1 priority on my medical leave.

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I wouldn't blame the Clonodine, even though both of my very weird episodes were on Clonodine. I couldn't handle Clonodine for other reasons.

I'm not on an SNRI, so can't add inmput.

Please share your experiences with sleep with me! Are you able to sleep with a high NE?

As for meds, have tried 2 BB's, and both caused my BP to go dangerously low, Clonodine made me feel even more tired, and currently am trying Mestinon at a 'micro' dose. Don't hold out a lot of hope for it,

Please share your sleep experience.

Thank you

K

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Well good he wasnt alarmed. I haven't mentioned it to anyone. I don't see a cardiologist regularly. All of this is very new. I was seen at Mayo in January. Still trying to sort things out.

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I have had this too. The first time I became aware of it was when my husband woke me with "why is the bed shaking?" I was on no meds at the time (about a year ago). I still have it sporadically now (while sleeping) when I'm symptomatic in other ways. For me personally, I *think* it's an adrenalin surge in response to my low HR/BP while sleeping. That's speculation on my part but I know those numbers drop during sleep and my baseline numbers before bed are alread low.

I don't have flushing, but have had some other issues that have come up since pots like dermatographia, hot/cold urticaria(hives), unusual rash from the sun which definitely indicate sensitivities that I've never had before.

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Rachel I'm not sure if it's my heart pounding or what it is.

AAP so you were physically shaking? I couldn't tell if I was or not. It felt like it but I'm not sure.

It happened last night when my husband came to bed but on a much smaller level. Maybe he startled me when he came to bed. Idk.

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Kris,

I experience the same thing, though not all the time. It usually wakes me from a sound sleep in the early morning hours, but my hr seems to be fine. It has happened while on the couch as well in the evening and like you, I look to see if my dogs are scratching or otherwise shaking and he or she is not. It's weird. Don't know how to explain it and it is scary. I just started noticing mine a few weeks ago when it started waking me in the morning, but it doesn't happen every morning. I am not on your type of meds and I don't see a cardiologist either. I posted something about this too and from what I can gather, it might be adrenaline, although like I said, my vitals seem fine. Go figure. Just another wonderful symptom of POTS to deal with.

Feel better :)

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I just assumed it was pounding heart because it is a very similar sensation to when my pacemaker kicks in. Having said that, it may well be my pacemaker kicking in! Do any of you have a pacemaker?

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Rachel - I don't have a pacemaker.

Partly the reason I think it has to do with my vitals is because I also would wake with a 'choke' at times but I'm never sure whether it was my heart or breathing that is causing the issue (other times I've woken with wacky rhythms), so I like to be hopeful and think that this surge is a way of keeping me out of trouble. It doesn't neccessarily coincide with an increase in hr though.

I have also had those "core tremors" while sitting on the couch. At those times, it seems related to something I'm eating because it is almost like clockwork - 20 mins after eating and lasts about 40 minutes. I have tested out foods to see if I get the same response everytime, but I don't.

I would love to be able to figure this stuff out...

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Will read everyone's posts in a bit, but YES this happens to me!! Every couple months this will happen a few times a week. Feels like a seizure almost but I'm mostly shaking/vibrating on the inside. Can sometimes correlate with tachycardia but other times not...

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Wow I had no idea I would get such a big response! I have not been officially diagnosed with hyper pots yet even though my NE levels are way up there. Do you think this is related to potsy type symptoms then?

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I used to have this symptom when my POTS was at its worst. Despite trying dozens of different medications over time, that symptom was always around. I could never account for it, but it did go away once my symptoms began to improve. It's been years since I've experienced it, but I remember it being terrifying. I even asked about it while I was a patient at the Vanderbelt studies and they had no idea what I was talking about.

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I want to add that I am NOT hyperpots. It is terrifying! I'm glad it's a sporadic- every month or two thing - and not a daily occurrence.

Finally have a f/u on Friday and its on my (long) list of things to talk with the doc about.

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Just thought i would add - I get the internal vibration too.

It's not my heart rate and I don't feel ill with it and it only happens in bed. Its got better recently but when i first had full on pots it was lots of nights.

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This may sound daft, but is there any chance that there's building work going on near you? I've had a number of times when there's been building work nearby and they've used heavy machinery for half an hour or so in the morning only, just enough to wake me up thoroughly and stop me from going back to sleep. There was one wonderful time when they were resurfacing the car park near my bedroom window, and the machinery actually made me vibrate and made the windows rattle.

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