zoe ashcraft Posted February 11, 2009 Report Share Posted February 11, 2009 hi all, i've had a history of a variety of seizures since my open heart surgery a few years ago and that includes the long stupors I've read people talk about where you can't move or speak for hours. but presently my seizures are the thrashing about kind, including the frothing at the mouth, yadayda- i've been tested -videoed for four days- my seizures are real, but not epilipetic- but it's hard to figure them since they're changing now with a change in meds- (i'm going off Methadone) i'm just wondering how common it is for ppl to have seizures as a result of POTSand how dangerous or not they might or might not beand also- I personally always thought mine were more a combination of extreme spasming from tethered cord and vomiting, passing out, throwing up from cranio-cervical instability. anybody have any thoughts? and who / what kind of doctor would help? hA! (doctors- do they help?) yuk yuk yuk. we can still HOPE!!! from somewhere over the rainbow, zoe Quote Link to comment Share on other sites More sharing options...
mjan Posted February 11, 2009 Report Share Posted February 11, 2009 hi all, i've had a history of a variety of seizures since my open heart surgery a few years ago and that includes the long stupors I've read people talk about where you can't move or speak for hours. but presently my seizures are the thrashing about kind, including the frothing at the mouth, yadayda- i've been tested -videoed for four days- my seizures are real, but not epilipetic- but it's hard to figure them since they're changing now with a change in meds- (i'm going off Methadone) i'm just wondering how common it is for ppl to have seizures as a result of POTSand how dangerous or not they might or might not beand also- I personally always thought mine were more a combination of extreme spasming from tethered cord and vomiting, passing out, throwing up from cranio-cervical instability. anybody have any thoughts? and who / what kind of doctor would help? hA! (doctors- do they help?) yuk yuk yuk. we can still HOPE!!! from somewhere over the rainbow, zoeHI there Zoe.. I like the way you express yourself. I wish I could answer your very serious questions..but hang in there.. someone will come long and help. Wow.. you had open heart surgery.. what caused that?ANd..I do not understand what you mean when you say.."thought mine were more a combination of extreme spasming from tethered cord...etc. What exactly is going on?Do you see some one now for the seziures?? I especially feel for you as my husband had all kinds but then he did have epilepsy.Just know that you are not alone.. you have us.. we'll help support you for sure. Warmly, Jan Quote Link to comment Share on other sites More sharing options...
pat57 Posted February 11, 2009 Report Share Posted February 11, 2009 Do you know what your heart rate is during the stupors and just before the seizures? Lack of blood to the brain can cause both. With the stupors there would be profound weakness too. Is there? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 11, 2009 Report Share Posted February 11, 2009 FYI, for those who don't know what a tethered cord is, in laymans terms when there is a part of the spinal cord that's "stuck" and can cause weakness and spasming, for one of my students it caused him to lose control of his legs and bowels, and the pain would be excruciating. Quote Link to comment Share on other sites More sharing options...
jjb Posted February 11, 2009 Report Share Posted February 11, 2009 I am very interested in the correlation between dysautonomia & seizures.When my dysautonomia is at it's worse, I likely have simple partial seizure symptoms, frequent clusters of deja vu, visual distortions and symptoms that could be either autonomic seizures OR just plain ole autonomic dys.I have a brother with the convulsive tonic clonic seizures. he also has chiari malformation. Where you have the tethered cord and cranio-cervical malformation, I am wondering if you have chiari and/or a connective tissue disorder.POTS commonly occurs w/ both. I have heard from many that have chiari, also have seizures and some have had seizure control once chiari issues resolved.My daughter has appears to also have dysautonomia. She also had a stoke at birth and now has epilepsy. She has only had one generalized convulsive seizure, the rest have been non-convulsive complex partial (awareness impaired ... stupor like) and nowadays simple partial autonomics.ere is a good article: Epilepsy and te Autonomic Nervous System Quote Link to comment Share on other sites More sharing options...
zoe ashcraft Posted February 11, 2009 Author Report Share Posted February 11, 2009 Hi all~ To answer your questions~ yes, I do also have Ehlers Danlos Syndrome too. And Tethered Cord is for me- where the spinal cord is attached too low and it therefore ends up pulling the brain out of the skull, much like Chiari- creating brain stem compression. I have lost almost all my bladder control, am getting a catheter any day now, and the bowels are too hot either- but don't have insurance to cover surgery- cuz none of the surgeons here believe in this type of TC- only at The Chiari Institute- (I'd really only want the surgery done there anyway)- because they know how to work on ppl with EDS. My heart surgery was necessary bc. of my EDS. and they damaged my neck further becz they didn't use special treatment for my neck- They were just thinking about taking special care of my heart and all those tissues!!!! (oops) So, surgery is a scary thing for me- since two months afterwards is when I started to lose control of the left side of my body and fall over and not be able to move or speak for an hour at a time. I dont have the silent zones much anymore - since I wear a neck brace- 1/2 the time - but I can't walk- more than a wee ways- just barely get around my house, sometimes have to use a walker, always a cane- when out and scooters- tethered cord does that. I don't have anybody taking care of my seizures. I've had a verY hard time getting anY medical help. I've JUST NOW landed my first good MD- in 20 years- he's a long ways away, but maybe I'll get somewhere now that I have hm. TCI and Dr. Francomano have been there from afar- for me- but it's difficult for them to do much from such a distance- (That's New York and Maryland)! Nice to meet ya'll. rainbows,zoe Quote Link to comment Share on other sites More sharing options...
zoe ashcraft Posted February 12, 2009 Author Report Share Posted February 12, 2009 Hi all, sorry to be redundant and reply to my own post but, i am starting to understand maybe ~ how POTS plays a role in my life for the first time- having read some of the past posts on seizure related issues and POTS- Tell me what you think.Today I was stanDing- (hard to do) - since my heart surgery- I've gotten better by small increments- i was able to stand for 60 seconds last year and maybe double or triple that now- but I was over my limit maybe and told my two visiting sisters I needed to sit down but it was too late I had lost ability to function- they had to kind of half carry me to the bed where i started to spasm and thrash and spit froth about~ with their still being able to understand me a bit - they put me in my Pronex cervical traction unit to stretch my neck and that eventually calmed my body down- thus I avoided a full on seizure event- at least that's how I see it. what do you think? is that how it works? i mean, i've read about how people can go into - (i don't know what to call it- various neurological problems- ) from standing too long- thus the name- Postural Orthostatic hmmm. (better stop while I'm ahead on sp. that one) ugh. gotta go, i think my dear sisters left me a gift- the flu~ from over the (achem) rainbow,zoe Quote Link to comment Share on other sites More sharing options...
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