Lel

Hi Kris, my body earthquake episodes are also only in my upper torso, and yes, sometimes my heart races during them. What is the mast cell thing in which your doctor is looking into? I'm not familiar with it. There is so much to learn about this stuff. Also, you might want to check out the post called "Ever Experienced Something Like This?". Specifically check out ukwildcat's posts on the second page. Her night shakes sound similar to ours. And oh man, I hear you on the temperature fluctuation thing. Sometimes I'm freezing, so I put on a blanket or two or three. Within a minute I feel like I'm burning up, and where the blanket touches my skin is on fire. Then because of my Raynaud's, my body will be sweating but my feet will feel like a block of ice. How is that possible? Body's are so weird sometimes. I'll definitely keep you posted. Keep hanging in there!

Oh wow, I just had this on Friday while at physical therapy. It is so scary. For me it occurred very suddenly. While doing a strength exercise, I had low level tremors, which is pretty common for me when I do anything with resistance. Then boom: the tremors became intense, full body shaking/convulsions. My head, face, hands, and chest were all numb. Both my feet and hands locked up claw-like. I also was very short of breath. Mentally everything became cloudy. I have spotty memories of the incident. For instance, I have no concept of how much time passed. My PT said my heart rate hit 170, but I don't remember feeling my heart race. Once things began subsiding, I realized how dizzy I was. I needed assistance sitting up, using the restroom, and was eventually wheel chaired out of the building. (For being his first POTS patient, my PT was impressively calm.) I felt incredibly weak and fatigued for two days afterwards. I'd been very symptomatic for the two weeks prior. Rama, you mentioned the docs referring to them as autonomic storms and as hypoxic seizures. Can you (or anyone) recommend a website with a good explanation of hypoxic seizures? As for pupil abnormalities, I'm not sure whether I experienced it during my episode. On other occasion, my PT has commented that my pupils were quite dilated. UKwildcat, I've also been through the epilepsy rounds with the docs (sleep doctors, neurologists, epileptologists, and back again). I call them "body earthquakes." I used to wake up really groggy to this odd sensation of my upper body shaking. For other reasons, my docs started me on Gabapentin. Once on that I was more lucid during these occurrences and realized that no I wasn't dreaming this -- my body was actually shaking. Sometimes I shake so hard that it feels like a train is roaring through me. Intense chills often occur before body earthquakes, and after intense ones I have a strong instinctual fear response. On one extreme instance, I lost the ability to move my arms for several minutes afterwards. I have also bitten my tongue. Despite experiencing body earthquakes nightly, I didn't have one while in the epilepsy monitoring (of course). I think being woken up every couple of hours messed with my sleep cycle enough that they didn't occur. The epileptologist didn't see signs of seizure activity, despite the sleep doctor thinking they were. They concluded that like hypnic jerks (which I also have), my body shakes are a very extreme case of my body getting caught between the worlds of wakefulness and sleep. They've been progressively upping my Gabapentin levels, and these episodes have been drastically reduced. Now I am wondering if the autonomic storm episode at PT is connected/related to the body earthquakes. Hmm… no answer nor solution comes easy with dysautonomia, eh?

Thanks guys! Cheers to success! Do you ever have times when your dysautonomia symptoms hit harder after you're done working out? Sometimes I judge that I need to stop or cut things back. But other times I'll go for a run and deal only with the typical fatigue and joint pain, but then post-workout wham! Dizziness and lightheadedness hit hard. I haven't figured out a way of predicting when post-workout POTS will hit and when it won't. I keep all walks/jogs at a vary low intensity level, and there doesn't seem to be a direct correlation to distance. A similar phenomenon is happening at my physical therapy. Any one else with experience or advice?

I used to run, bike and hike extensively ... and have had to stop. I too am hopeful. Can anyone out there speak to success on regaining past fitness? I know we all are different, but it's nice to get some positive news stories some times : )

I just started working with a physical therapist, and I'd definitely recommend it as a way to begin incorporating fitness back into your life. Their expertise is rehabilitating people -- knowing how to properly progress exercise intensity per the individual. Mine pinpointed my muscular weaknesses, so we're working on that and improving my balance. PTs connected to a hospital or medical center might be more inclined to understand POTS rather than traditional orthopedic center. I have also read that rowing machines and recumbent bikes are good for POTS people.

Do your twiches/jerks happen when resting or while sleeping? While in an epilepsy monitoring unit, I was diagnosed with hypnic jerks. As I understand it, your body gets caught between wakefulness and sleep. For me, sometimes an entire limb jerks, and sometimes just in one finger twitches. Other times mine are so strong that my whole body literally leaps off the bed. I finally knew that I wasn't just dreaming when I landed and the whole bed creaked. Mine are usually exacerbated by a flare-up of symptoms and stress.

Hi Kris, Several thoughts: I have the flushing too. Do you also have problems with full body temperature regulation? I deal with both of these. My understanding is that this is all linked to dysautonomia and the ANS's malfunctions. I have also read that bursts of adrenaline are what specifically cause the flushing. You mentioned gut issues. One of the subsystems of the ANS is the ENS or Enteric Nervous System, which helps control the GI tract. Often food moves through the stomach more slowly than normal. I'm curious about "the strange vibrating feeling" that wakes you at night. I experience what I term "body earthquakes." I used to wake up really groggy to this odd sensation of my upper body shaking. For other reasons, my docs started me on Gabapentin. Once on that I was more lucid during these occurrences and realized that no I wasn't dreaming this -- my body was actually shaking. Sometimes I shake so hard that it feels like a train is roaring through me. Intense chills often occur before body earthquakes, and after intense ones I have a strong instinctual fear response. On one extreme instance, I lost the ability to move my arms for several minutes afterwards. I have also bitten my tongue. Is this similar at all to your experiences? You're the first person I've met who sounds like she's experienced a similar phenomena. I've been sent to sleep doctors, neurologists, epileptologists and spent five days in an epilepsy monitoring unit (and then back through the list a second time). No one seemed to have any idea what it is. Panic attacks were even suggested. Despite experiencing body earthquakes nightly, I didn't have one while in the EMU (of course). I think being woken up every couple of hours messed with my sleep cycles enough that they didn't occur. The doc didn't see signs of seizure activity. They concluded that like hypnic jerks (which I also have), my body shakes are a very extreme case of my body getting caught between the worlds of wakefulness and sleep. They've been progressively upping my Gabapentin levels, and the episodes have been drastically reduced. I do wonder if I'm not having them or if I'm just sleeping through them. I also noticed the posts about Cleveland Clinic. (I go to their autonomic clinic within the cardio department.) The Clinic has a concierge number that you can call to get help with clustering appointments and tests. This is set up specifically so out-of-towners can minimize their travel frequency. I hope this helps. Please let me know more about your nightly vibrations.