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The shakes


Hippopotsamus
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Anyone else have this? Or insight into why this happens? If I wake up in the middle of the night to walk to the bathroom to urinate then lay back down in bed, I start shaking. Looks like intense chills but I’m not really cold. Sometimes accompanied by headache/anxiety. I’m conscious and do not feel faint. Blood sugar fine. HR and BP ok. Is this from the arousal of my nervous system from sleep? Blood volume/electrolyte stuff? Just wondering if I’m the only one. 

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I get something similar when in a particularly bad flare up

I find heating my core helps (even though it is my legs that are often shaking)

I use an electric heat pad

I also don't feel cold, but the heat still helps

I find that the muscles that are shaking are sore and if I massage them the shaking improves

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@Hippopotsamus - I think this is a common occurrence in dysautonomia. I get it, usually accompanied by yawning ( as an attempt by the body to get more O2 ) and can lead to syncope or seizures for me. I was told it is due t the ANS making too much adrenaline which constricts the vessels which then causes tremors etc. , at least that seems the case for me. I control this by laying down, covering up with heating pad ( warm blankets in hospital ) and - hopefully - it goes away. Overdoing things or getting too stimulated can cause this. 

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I can't help @Hippopotsamusbut I can sympathise.  It's one of the things I really hate when I'm in a flare - I wake up with a jolt and have full body tremors which last at least a couple of hours.  If I concentrate really, really hard I can stop them but the amount of energy it takes is enormous so I rarely bother trying any more.  I haven't found anything that helps - heat doesn't work for me but it does go away eventually.

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I was wide awake last night and thinking about this and remembered someone on another forum said a weighted blanket had helped stop the tremors.  Actually they said it had also helped them sleep better too.  Because of my hEDS I was a bit worried the weight might make my joints move out of position and some nights they don't need any help doing that(!) but if that's not an issue for you it might be worth a try?!

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2 hours ago, cmep37 said:

Because of my hEDS I was a bit worried the weight might make my joints move out of position

@cmep37 - I believe it actually could PREVENT your joints from moving abnormally because you move differently under a weighted blanket. 

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I sometimes start awake with terrible tachycardia (165bpm at times) and breathlessness that lead me to have panic attacks. I usually get the shakes really bad as well; my entire body spasms as I try to breathe and calm down. It usually takes me 45 mins to an hour (and lorazepam) to finally get my heart rate back down to the 120s or lower. It is exhausting. 
 

For those suggesting the weighted blanket, I can understand where you are coming from! My husband will lie across my legs or put weight on me to help me calm down and reduce the shaking. It helps tremendously. 

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This sounds so much like me shakes shivers goosebumps horrible nightly with tachycardia up down BP nausea headache bone pain seizures or aura . I also have a weighted blanket from ebay I will link it . It seem help but does not stop it also sometimes if am agitated it hard get up but would recomend I will go find the  link.

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  • 2 weeks later...

Pistol. if you see this! (couldn't get the quote to work, sorry), regarding your thoughts on adrenaline release.  Do the doctors know whether the exertion/stimulation actually causes overstimulation of the ANS and subsequent increased adrenaline?  I get this reaction only during sleep if I have done something I know is a trigger,  for about a year and definitely getting worse.  I also feel extreme chills and what seems to be paresthesias (ie chilling throughout the arms and legs, yet a burning sensation at the same time (Dx of neuropathy, but don't know if it is small fiber in addition).   Then the next day always a flare and feeling worse, and almost like a flu or virus, with continued chills all day.     I notice this will strangely also happen if I go to bed later and then can't get to sleep.  It's almost like the lack of sleep acts as a trigger.  This is also a really strange thing I've just started experiencing too, and wonder if anyone else has it - I see visual hallucinations (always a large spider crawling on the wall that looks like a tarantula!  So very strange and scary.  This freaked me out, so I looked it up, and strangely there is a connection with dysautonomia.  Think maybe we all could relax more if we knew it was all dysautonima-related.   Same thing as hippopotsamus (love that name!), when getting up to the BR or especially when startled from sleep.   My personal belief is that our nervous systems are so sensitive, that when they get overworked for us or startled, we react with these spells, but it is just a theory, and I know all of you are wondering the same thing as to the cause.   Thank you.

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  @Hippopotsamus - I get this weird thing where if I flip over in bed or if I get scared or I stand up and then lie back down when I feel really tired or am half-asleep then it feels like my body is vibrating and sometimes it feels like there is an earthquake going on. I haven't found anything helpful for it. Hope it gets better for you!

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4 hours ago, Amyschi said:

Do the doctors know whether the exertion/stimulation actually causes overstimulation of the ANS and subsequent increased adrenaline?

Hi @Amyschi - it was explained to me that in my case a sudden drop in BP triggers the ANS to overcompensate by activating the sympathetic NS, which dumps adrenaline and causes constricted blood vessels increasing HR and BP, tremors and chills and other symptoms. Afterwards I often feel like I have the flu - like a fever but no temperature. 

 

4 hours ago, Amyschi said:

  I notice this will strangely also happen if I go to bed later and then can't get to sleep.  It's almost like the lack of sleep acts as a trigger. 

More likely the inability to sleep comes from the high adrenaline, so you are already in a flare when you cannot sleep. This happens to me when I get overstimulated - the levels go up and don;t come down, so I can't sleep . That in turn makes everything worse - like a vicious cycle!

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Thanks so much, Pistol.  That is a logical explanation.   Interesting too about not being able to sleep due to the same.   I always thought of that as a trigger, but you are right, probably all a continuous cycle.   It is amazing that you said you feel like you are ill with a flu afterward - I am exactly the same, and sometimes wonder if it is an illness, but it seemingly happens too often for that.    You are always so helpful and knowledgeable (such a help to all of us!),   Take care.  .

 

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  • 2 weeks later...

Thank you all for posting/commenting. I was looking into weighted blankets after my most recent flare up so think I'm going to try it. I too have what I call "internal tremors" which are so hard to describe to others if you have not experienced them. I am also dealing the burning sensation after nightmares, tremors and waking up abruptly. I am determined to calm this flare up down because I had been doing really well up until the last few weeks so thank you for the advice!

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On 12/17/2020 at 10:36 AM, Pistol said:

@Hippopotsamus - I think this is a common occurrence in dysautonomia. I get it, usually accompanied by yawning ( as an attempt by the body to get more O2 ) and can lead to syncope or seizures for me. I was told it is due t the ANS making too much adrenaline which constricts the vessels which then causes tremors etc. , at least that seems the case for me. I control this by laying down, covering up with heating pad ( warm blankets in hospital ) and - hopefully - it goes away. Overdoing things or getting too stimulated can cause this. 

Makes sense. But with an adr spike, you'd feel agitated

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