Trembling When Waking Up?

[gofl1]

Just curious to see if anyone shakes all over when waking up, especially if you wake up unexpectedly. Since my hyper pots symptoms have developed, whenever I wake up to an alarm or noise or whatever else, I feel like a tuning fork being struck for a couple of minutes. Literally my whole body including head shake uncontrollably. This is all while still laying in bed and is much worse when I am really tired. If I wake up naturally, this does not occur. My hypothesis is that it has something to do with faulty norepinephrine release, which I am assuming has a role in waking up.

[julieph85]

This happens regularly to me and just lie you said, it is worse if I wake up suddenly. My entire body shakes so bad it looks like I'm having a seizure. It stops after a few seconds when I start to move my limbs. I agree that it has something to do with norepinephrin. You actually have a surge in NE a few second before waking so I have attributed it to that.

[sue1234]

Yes, I get that. I only awaken naturally, when my body is ready. Maybe once or twice a year I have to waken by alarm for a medical test or something, but I have my iPhone alarm set to the sound of harps. I don't do well at all with abrupt, harsh awakenings.

Years ago at the beginning of POTS, someone phoned at 5:30 a.m. to tell her daughter that was spending the night with my daughter to get ready to be picked up. I was very startled to say the least, and I literally stumbled down the hall to my daughter's bedroom to awaken the girl and give her the message. I then knew I better get right back to bed as I felt like passing out. I learned that day that I will never be able to jump out of bed early in the morning. I usually have to lie in bed for about 15-20 minutes after waking up and then my body feels okay to get up.

[AllAboutPeace]

I get that trembling too when woken abruptly. Is your heart rate elevated?

I also sometimes wake that way through the night. I will wake up to the bed shaking (or my husband wakes me becaue he feels it) and when I'm alert enough to realize what's going on, I discover it is me causing the bed to shake/ vibrate. I feel my pulse and it is crazy high (I don't even notice it unless it's over 130, so I'm not sure how high it gets at those times). Like you mentioned, Julie, as soon as I start moving my limbs I can feel it settling down. I tried to reach for my bp cuff one night to see if it was caused by a drop in blood pressure, but I could feel it starting to settle down as soon as moved around a little.

It takes me an hour of laying in bed in the morning before I'm really ready to move.

[julieph85]

Yes it also happens to me through out the night and it occurs with tachycardia but the two don't have to go together. In other words, I have woken in the night shaking violently but just shaking no tach, and I have woken in the night shaking with tach. Also I used to experience this thing that has thankfully gotten better, but I used to wake up always about an hour into sleep with extreme tachycardia- as high as 180 bpm and it would go on and on for about 20 minutes. I would always know when it was stopping because at the end of it my stomach cramps up real bad and then my hr slows. It could also be triggered to happen if I rolled over in my sleep or stood up to fast out of bed ( like to go to my twins room in the middle of the night when they cry). My doc said he thought I was fainting in my sleep so my body was producing huge amounts of NE to counteract it and that's what triggered the tachy episodes. I still don't understand though why rolling over in bed could trigger one of those episodes if it was just fainting.

[AllAboutPeace]

Julie, I seriously have no idea how you've been able to manage all this with twin babies!

I'm glad you mentioned the rolling over thing... I wonder if that's what is happening for me at those times. I always have to sleep on my right side (with shoulders back, so as not to compress my chest) because I have issues sleeping any other way. During those times of vibrating/tachy I seem to inevitably find myself more in a belly down position when I wake up (???). I am thankful that the very worst (apnea/brady) of my sleep issues seem to be behind me at this stage (hopefully!) Those symptoms were helped immensely by salt and water.

[issie]

Yes, it happens to me too. And I do believe your assumption is correct. I can just move my arm in bed and the same thing happens. I have this throughout the day too. I'm really tired of this response. It wears you out and the anxiousness that it causes is hard to handle. There is extreme tacky that goes along with it. You feel like your heart will literally beat out of your chest. I have the tremors and the shakes too.

I've found that taking Tramadol before bed really helps to alleviate this sort of thing and I sleep more sound through the night and don't wake up every hour with this happening. I've been trying to leave it off to re-set my body - but, this problem had gotten so severe that I broke down and took 1/2 of one at 5:00 this morning. I got some of the best sleep. Also, without it I was noticing that my feet and hands were turning more purple and my POTS was definetly worse. So, for me this is the best treatment I've found for a HyperPOTS response. My neuropathies were getting really bad and feet and hands going numb. This morning woke up with the feeling back and they aren't purple now.

[julieph85]

Allaboutpeace, yes having this illness with newborn and now toddler twins has been the hardest thing in my life! I feel I missed out on bonding with them as babies because I could never breath and I am always dizzy. I have also noticed that the vibrating mostly occurs when I'm laying on my stomach! I actually cannot lay on my sides to sleep at all because my blood pressure drops so low when I do that I become short of breath and dizzy. I'm only able to sleep on my back.

[AllAboutPeace]

Issie, I'm glad you have found something to help you with this, especially if you experience it every hour!

If I could give one gift to the world it would be that everyone should be able to experience a good night's sleep (well food is pretty important too...). Life is soo much easier to handle, no matter what you are going through, if you can have a good solid rest.

Julie, I think having twin toddlers at the best of times would be a challenge! I can only imagine how difficult it must have been for you. As they get older they will come to know about your strength and courage and they will be shaped by that in their own lives. I hope you get things figured out soon.

[ramakentesh]

its a crappy way to wake up i think. makes it hard to make a day of it. I get this when im really bad and then it changes into extreme exhaustion when i wake as I improve.

[issie]

I've found that taking Tramadol before bed really helps to alleviate this sort of thing and I sleep more sound through the night and don't wake up every hour with this happening. I've been trying to leave it off to re-set my body - but, this problem had gotten so severe that I broke down and took 1/2 of one at 5:00 this morning. I got some of the best sleep. Also, without it I was noticing that my feet and hands were turning more purple and my POTS was definetly worse. So, for me this is the best treatment I've found for a HyperPOTS response. It works on the NET dysfunction issues that I have and helps with pain and evidently must help with vasoconstriction/vasodilation. I want to research that last one and see if there are any studies to suggest that this is what happened. My neuropathies were getting really bad and feet and hands going numb. This morning woke up with the feeling back and they aren't purple now.

I finally got around to looking this up. I found several articles showing that Tramadol is a vasodilator. As I've always felt that I'm low flow and have overly constricted veins - at least peripherally.

Here is an article that also shows how Tramadol lowers NE levels by 60%. It definitely helps my surges and tacky. It helps with vasoconstriction and it calms me down. I also find that MY bp levels come down. (But, according to this study - that doesn't happen. But, with me it does. I have higher bp's.)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1573343/

[Wendy C.]

Julie, I hear you about the feeling of not bonding with my baby during his first 3 months because I was so out of it with my symptoms. It feels like a blur and I get sad when I see a really young baby because it makes me realize that I barely recall those times and I feel guilt for it. Logically, I know I did the best I could given the circumstances. Luckily, we have totally bonded over the past 14 months and all is fine on that front. I hope the same for you. Interesting how you said that your bp goes too low if you sleep on your side vs. back-I will have to test mine in both positions to see if it varies.

I had those short periods of severe shakes while in bed during the past 2 years, but they haven't happened in a couple of months. It may be because I take 2 salt tabs, drink lots of water and a few sips of Gatorade immediately before bed. I also do my best to sip on Gatorade whenever I awaken during the night. The episodes would usually occur when I was laying on my side and was just about to fall asleep, but reached over to turn off the lamp. Sometimes they happen if I get startled awake, too. I mentioned it to 4 different doctors and they all shrugged and ignored it.

I also have to lay in bed for about 45-60 minutes before I have the strength to get out of bed. Thankfully, my toddler is great at entertaining himself in his crib that long, as it really helps me out.

[jenglynn]

I am a little "trembly" when I wake up in the morning... But some of your episodes sound much worse I'm so sorry! Not the way you want to start the day, is it??? But my husband tells me I have several periods of trembling,shaking, twitching- often violently so during the night, but it's never woken me up- although it is enough where it wakes HIM up several times. I've been wondering what this is and if something I need to be concerned about or just add to the list of unexplained symptoms. I have autoimmune mediated autonomic neuropathy and a quite aggressive Autoimune Disorder. I am very orthostatic hypotensive with what I would call moderate to severe (usually, especially lately trending toward severe) tachycardia. If anyone has an explanation for my episodes, I'd love to hear it!

Thanks,

Jen

[jenglynn]

And Julie- Bless your heart having to manage this with twin babies who have now grown into toddlers. I hope you have a lot of support. One of my biggest sources of guilt about this illness, as debilitating as it has become for me, is how it has affected me as a Mom. We have 6 kids- oldest is 15 and youngest is 8. They are all pretty self sufficient but I am not "there" in the way I always was before. I feel I've had these conditions my whole life- but being the type of person I was- I had to be Super Mom as well as Super everything else. I survived on adrenaline and always pushed myself to the limit. Major perfectionist and I can look back now and say Super Controlling. Well, these conditions can change those traits in a hurry when I can't be vertical for more than 30 seconds before I'm unconscious. I know how stressful it has been for my kids and family and it breaks my heart what they have gone through ( my 11 year old son found me unconscious after a syncope spell in my bathroom who knows how long after because it knocked me out- but I had split the back of my skull open with the impact of the fall and the first thing I remember is barely opening my eyes- my head in his lap- his whole shirt, arms, ect. Covered in my blood. Our 13 yr old was down there too and I heard Josh (11) tell Austin (13) to keep applying pressure to the big wound and he was going to lift me up- because he thought if I was a little more upright it would lower my blood pressure enough to stop the bleeding because he knows what happens as I get more upright. And my blood loss was significant by this time but it worked and he was careful not to lift me TOO high to make me unconscious again. Bleeding had stopped by the time the paramedics arrived). I just keep thinking about how scared they must have been and how they will probably never forget that day. It breaks my heart.

I'm sure we all go some feeling of guilt or feeling like a burden- it has been really hard for me because I'm the type who could do it all and never ask for help. Well, that person is gone and I've had to learn to let goof my controlling, bossy nature because if I'm not doing it- I'm not going to get willing helpers if I criticize. But it hasn't been easy. I bet in someways, though, I'm closer to my kids than ever- that would be my silver lining I guess. I can't do as much FOR them.., but I can be there and talk all the time.

Jen

[kmichaelson]

I have this sometimes as well, especially (like you said) when I'm awakened suddenly. I don't think mine is as severe as yours, but it is kind of a "tuning fork" feeling, like my adrenaline or norephinephrine just kind of went off the charts!

[bellgirl]

I used to have jerky movements, when I slept, and my heart irregularities and tremulousness used to wake me up, along with my apnea, and then I would sweat profusely; I still perspire when I wake up, but with my Cpap, Klonopin and Beta blocker, I'm much better I can't imagine doing this with small children...My heart goes out to Julie and Jen!!

[Alykat]

I don't have jerky movements while I sleep but I wake up trembling so hard I vibrate myself to the bottom of the bed, as if it were absolutely frigid. I feel cold when it happens, it only stops when I stand.

is this something a 13 year old like me should experience? Does anyone else experience this?

[MomtoGiuliana]

Difficulty with temperature regulation is a symptom of dysautonomia.

I sometimes feel cold in situations where it doesn't make sense.