s-pot Posted September 30, 2011 Report Share Posted September 30, 2011 Ive recently bin feeling POTS changing symptom wise :/OH was my worst problem before. In last couple of weeks Im experiencing alot more arrythmias and feel closer to fainting. My previous most common symptoms were sudden BP drops and severe wretching and fatigue, ive never experienced full syncope with POTS.However the other night when i was dropping of too sleep I was awoken by the usual feeling of my heart doing a somersault in my chest...more severe and prolonged than usual. This was followed by (im guessing) at least 5mins of uncontrollable body and facial seizure like twitching. I believe i was having a partial seizure. Althou fully concious and aware of surroundings and noise I was unable to open my eyes, had pressure in my head and just felt very strange. I then felt it pass all of a sudden and was able to settle again.The twitching is coming and going at times still but not like it was that nightIm reading online about Reflex Anoxic Seizure and am wondering if this could have been due to a sudden lack of blood flow and oxygen to my brain? I usually sleep with my bed tilted as it seems to improve my condition but for those couple of nights i was away and unable to do this.Just wondering if anyone has experienced this or has any information about POTS and these Reflex Anoxic Seizures im reading about?Would greatly appreciate it if anyone could shed some light. Im a little concerned now about my change in symptoms as i am working in a hospital environment and prefer to be well prepared if POTS is going to take an unexpected turn!!Thanks all for readingS-pot Quote Link to comment Share on other sites More sharing options...
lieze Posted September 30, 2011 Report Share Posted September 30, 2011 I would suggest some type of event monitor where you can record what is actually going on with your heart.I felt like I was having all types of arrhythmia's that first year or so of POTS. Nothing ever showed up on my event monitor though.That might be a place to start and if it's isolated to when you sleep maybe a sleep study would catch it. I know it's probably not the normal sleep study activity but it would be great to have a report of what is actually going on so they could have a chance to decide treatment options. Quote Link to comment Share on other sites More sharing options...
lieze Posted September 30, 2011 Report Share Posted September 30, 2011 The other thing I recall is most weird activity showed up for me about an hour into sleep.I would wake up about 12:30 either screaming, gasping for breath, or with heart pounding.I was unable to sleep on my left side at all-it triggered an event for me. Also I needed to be propped or I would wake up with the heart beating so fast and feeling like it was off balance is the best way to describe it. I never did any shaking though. Just the weird activity usually an hour into sleep. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 30, 2011 Report Share Posted September 30, 2011 The other thing I recall is most weird activity showed up for me about an hour into sleep.I would wake up about 12:30 either screaming, gasping for breath, or with heart pounding.Yes, it started this way for me too! It was terrifying to be jolted awake, unable to breathe. Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 1, 2011 Report Share Posted October 1, 2011 S-pot,If you are right about what you are experiencing, it IS worrisome that it is occurring when you are lying down. THAT is usually how reflex anoxia seizures are resolved...I recently got to watch my husband have a reflex anoxia seizure. Very scary for me as it happened while he was sitting & I had to get him to a lying position without hurting him. (I'm 130lbs & he's closer to 200 )Luckily, there was help nearby. We were at his orthopedics office They had just removed his cast revealing an awful- 100+ staple incision and left us alone while it aired. He started speaking gibberish, then his head, arms and legs began seizing. I was able to scream for help. Two doctors and a nurse immediately appeared & hoisted him onto the examining table. Once he was lying down, the seizure passed. He, too, sort of retained a limited degree of consciousness during the event. He basically fainted sitting up. You appear to be fainting while you are lying down.If I had to guess what caused that a few things come to mind... Maybe if you stayed in one position for too long, your blood flow could be inhibited, especially if you are hypvolemic. My son's Hopkins docs likened this to a coke half full. When you lie down, coke/blood can better get to the top/brain, but the amount is still somewhat insufficient. I know during the day, assuming the same position for too long, brings on symptoms even if one is sitting. The other thing I wonder about is pelvic congestion. (I am assuming you are female ) This is basically varicose veins in your pelvic region. Perhaps too much of your already limited blood supply pools there when you lie down??? These are really far out guesses, but might explain the lack of blood to your brain while lying down. It would be wonderful if you could discuss this with a knowledgeable doc. Hope it doesn't happen again!Julie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.