vepa

Muscle tremors?

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The other night, I had a really scary episode. All of my muscles started intensely cramping up. I was shaking and in a lot of pain and could not get my muscles to relax. I couldn't stand or really control my body much. My friend put my pulse ox on me and my heart rate was 140+ while I was lying down. My BP was also high  (130/90) and it's previously always been low. This lasted for a couple hours before it finally died down. I called the doctor the next morning and he said if it happens again to go into the ER but had no other answers for me. 

Has anyone else experienced this? 

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Hi Vepa! I’ve had these epeisodes happen to me and they are really weird & scary! My husband calls them my Parkinson’s episodes as I shake and twitch and can’t consciously stop it. I haven’t had one in a very long time but I remember they would be triggered by me feeling like I was too cold. I would fee like I had been hit by a truck when they were over! 

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My daughter has these, but I can't say if her bp or heart rate goes up when this happens as I've never had the wherewithal to remember to take her heart rate when this is happening!  Good for you, though!  You sound like you're a step ahead.  My daughter's usually happen due to a cervical issue she has with her neck.  She's got Ehlers Danlos and is 4 months post op for spinal fusion of C3-T4.  I'm thinking that C1 and C2 are acting up and have become more unstable since the surgery.  When she bent her head down last night, it sent off a whole slew of symptoms.  She was semi-conscious, became semi-paralyzed in her upper extremities, and had underlying nerve pain.  Scary stuff!  Usually at night, she has an onset of nerve pain which triggers a lot of tremors in her head, face, arms, hands, and, if we don't catch it soon enough, can go down to her legs.  Before her fusion, her whole body would freeze up, just like you and she would feel like she had been hit by a truck the next day.  This was because her cervical/thoracic instability was pulling directly on her spinal cord.  Do you know if you have any vertebral instabilities?  Do you have EDS?  Just curious.  The next time this happens, try putting a warm rice sock or the like around the back of your neck.  See if it works.  Don't put it around front, though, your corotid arteries are there.  Hope this helps!

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Another shaker and twitcher here!

I would suggest getting your electrolytes checked, particularly if you are drinking a lot of fluids or supplementing salt, potassium, Mg, calcium etc or taking drugs like fludrocortisone or licorice root.

It's scary when it happens x

 

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5 minutes ago, DizzyGirls said:

My daughter has these, but I can't say if her bp or heart rate goes up when this happens as I've never had the wherewithal to remember to take her heart rate when this is happening!  Good for you, though!  You sound like you're a step ahead.  My daughter's usually happen due to a cervical issue she has with her neck.  She's got Ehlers Danlos and is 4 months post op for spinal fusion of C3-T4.  I'm thinking that C1 and C2 are acting up and have become more unstable since the surgery.  When she bent her head down last night, it sent off a whole slew of symptoms.  She was semi-conscious, became semi-paralyzed in her upper extremities, and had underlying nerve pain.  Scary stuff!  Usually at night, she has an onset of nerve pain which triggers a lot of tremors in her head, face, arms, hands, and, if we don't catch it soon enough, can go down to her legs.  Before her fusion, her whole body would freeze up, just like you and she would feel like she had been hit by a truck the next day.  This was because her cervical/thoracic instability was pulling directly on her spinal cord.  Do you know if you have any vertebral instabilities?  Do you have EDS?  Just curious.  The next time this happens, try putting a warm rice sock or the like around the back of your neck.  See if it works.  Don't put it around front, though, your corotid arteries are there.  Hope this helps!

I've never been tested for EDS. I've suspected it due to somewhat vague symptoms like bruising super easily, joint pain, and my hips dislocating and then popping back in randomly, but don't have any hypermobility at all so the doctors won't even consider it. Were her cervical instabilities diagnosed by a neurologist? I currently have a GP, a cardio, and an endo, but I really think neuro would be a lot more helpful for me. Maybe I can use this episode to get my doctor to finally give me the referral.

 

2 hours ago, MamaTrain said:

Hi Vepa! I’ve had these epeisodes happen to me and they are really weird & scary! My husband calls them my Parkinson’s episodes as I shake and twitch and can’t consciously stop it. I haven’t had one in a very long time but I remember they would be triggered by me feeling like I was too cold. I would fee like I had been hit by a truck when they were over! 

Feeling like I've been hit by a truck is a very accurate description. I definitely think the cold could have triggered it, since at first I just felt like I was shivering before it got more extreme, but by the end I was sweating and super overheated. 

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Hi, I'vehad those frequently unfortunately. They got so frequent and bad that getting out of bed was out of the question.  Sometimes they would be in certain parts of my body, such as my legs, or they could take over my entire body and I would flop like a fish out of water. It can be very painful and breathing becomes labored.  My body shakes when I become extremely upset or nervous,  so that is my fight or flight reaction, which is what POTS tremors are. I have found that either an anxiety reducing drug stops them, or my husband rubs my feet and for some reason it calms me down and they slow or stop. I'm sorry you'r going through them, they are ****. But it isn't abnormal for us POTS people. 

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It was a neurosurgeon that diagnosed my daughter.  Actually I diagnosed her, then found a neurosurgeon to support the diagnosis.  So far, we have not had good luck with neurologists.  

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