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POTS and seizures?


Roy
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I was wondering if anyone out there has had seizures.

Yesterday I had my first and hopefully last one.

After a long day at funeral services for a relative of mine I came home to rest. I stood up to go and get something out of my car when I collapased in the doorway.

I fell straight on my butt then on my shoulder rolled onto my back and went into a full seizure. I don't remember anything besides being loaded into the ambulance.

They did a CAT scan, blood tests ect. Everything came back normal and after 5 hours in the ER I felt fine and they sent me home with the advice to see a neurologist.

Today I have felt fine other than dealing with a bruised tailbone and shoulder.

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A neurology visit is probably a good idea, just to rule out that your seizures aren't anything other than your autonomic issues. Not sure if it helps you much to hear that I know several others with POTS who also have seizures. I witnessed on firsthand at the NDRF conference a few years back; In this case, my friend says any major overwhelming emotion seems to set the seizures off.

My friend had gotten startled by a loud noise in her room and had a big epinephrine surge. There were 3 girls in the room, and they all went to bed and fell asleep. However, one of the girls heard thrashing and woke up...it was my other friend seizing. Her roommate called our room and we came down, along with Dan Smith (Linda and Dan Smith started the NDRF). She had a few brief seizures in my presence and then finally came out of it on her own, but was really sluggish and confused for about 10 minutes.

Hope you're bottom and top are doing better! :angry:

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I have seizures a little less lately since I have increased my heart medication. It is definitely related to stress or trauma. I often get them after an upsetting day. I have also noticed it has something to do with my heart. My boss has carried me out of work having a seizure. I forgot to take my heart medication the night before.

Good luck in finding a doctor that knows what they are. My Heart specialist did not have a clue and I had one in his rooms. My doctor on the other hand is amazing and understands most of the problems and if she doesn't she goes and learns more about it.

You tired after one, feels like a work out.

Good luck! : P

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  • 4 weeks later...

hey im new here hi everyone.i just like to say that my pots started off with seizures but i didnt think u could have seizures with pots or can u? i was misdiagnosed with epilepsy because i had slow brain waves he he.! well that is true i am abit slow.

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My doc says they're the nerves in the muscles not under control. I call it shaking and after talking with the doc and being observed by a cardiac tech that had some experience with degenerative nerve diseases in the back of the squad, we've figured out that they're actually NOT real seizures. They said it is the nerves basically acting on their own instead of being controled. It's another symptom of the autonomic system failure.

Mine also gets worse under stress, or anything else that can/will trigger a NCS or POTS spell for me. Even good stress triggers mine. It usually get the worst when I'm having a bad spell or a migraine or bad NCS/POTS headache. If I try to control it or if someone around me tries to hold me still, it gets worse. I've found the best thing to do is stay calm, let the muscles shake/twitch, and try to imagine them relaxing. I've found that thinking about what is hurting or having trouble, thinking of it relaxing seems to help tremendously!!

They've also run the battery of tests that we're all soooo used to getting by now and all of them show normal, nothing wrong, nothing abnormal, nothing unusual, etc. My doc says there's really nothing you can do for it other than to stay calm, try to relax, try to loosen the muscles--like getting someone to massage them, applying heat--like a heating pad on the area/s that are shaking sometimes helps too. A room-temperature soak in the bath while trying to relax seems to help for the really bad ones that go over the whole body.

??????? Does anyone else have a trigger-point where the shaking usually starts? Mine is my right arm. That is usually the first thing to start shaking. If it's really bad then my legs are what shake and it's all of both legs. They don't even shake in unison, they shake independant of each other.

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