Aa
So--who here has vasovagal syncope with sleep syncope episodes?
This one's new. I've struggled with vasovagal symptoms since I was 15 years old. So, I know that I faint for certain reasons, and am usually prepared or at least aware that it is going to happen--if not I usually know why afterward. Thing is, I've been "sick" for the past month. It started with a stomach upset that came out of nowhere one day then, three weeks later, I'm struggling with feeling like I've fainted or come close to fainting in my sleep!!!! This one is disconcerting!!!
I've gotten used to PVC's, and to fainting...I thought I was doing fine...then this. AUGH---thank God all vital functions seem fine, but of course, there is "nothing detectably wrong" with me. So, how the holy heck do you fix it???? :-(
I've gotten used to PVC's, and to fainting...I thought I was doing fine...then this. AUGH---thank God all vital functions seem fine, but of course, there is "nothing detectably wrong" with me. So, how the holy heck do you fix it???? :-(
I just read this research study about this same issue. I experienced these symptoms last night in my sleep also.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768202/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768202/
Re: the stomach vaso vagal problem- since your daughter is having GI issues too & it's been going on so long (I think stomach viruses usually are short-lived), have you considered whether your water or something you are eating might be sickening you and your daughter? Is there something the two of you are ingesting in common that maybe the rest of your family isn't- or do you know if the two of you tend toward a more delicate digestive system when it comes to things bothering it (ie, maybe a low level food poisoning or low level of contamination in water or something), whereas the rest of your family have more of cast iron stomachs? Perhaps you could ask a doctor to confirm if your daughter indeed has a virus or not, since he thinks you are nuts?
You say people are seeing you go into seizures, you are having trouble with speech afterward, weak and disoriented and yet it sounds like your cardiologist is content to risk permanent brain damage from the lack of oxygenation to your brain, etc. (thoughts as a layperson, not a doctor, though I did once graduate from vocational nursing school) with your heart rate going down to eleven beats a minute?
Have you ever considered/gotten a second opinon, laying it on the line with your symptoms and how uncomfortable you and your family feel with what you go through no matter how often it is, and telling that second opinion electrophysiologist if the pacemaker that was once on the table as a teen were there again, you'd want it?
While I have P.O.T.S. and the only time I fainted it was on the tilt table induced by nitroglycerine, I do know to a lesser extent what it's like to have a crazy acting body. On my last holtor monitor, I got up after sleeping without sitting on the edge of the bed like usual for the test and my heart rate went to 160. Lately, I didn't even have to take a shower first for me to get light headed raising my arms... was just trying to look for something on an upper shelf in the pantry with my arms extended upward.
You say people are seeing you go into seizures, you are having trouble with speech afterward, weak and disoriented and yet it sounds like your cardiologist is content to risk permanent brain damage from the lack of oxygenation to your brain, etc. (thoughts as a layperson, not a doctor, though I did once graduate from vocational nursing school) with your heart rate going down to eleven beats a minute?
Have you ever considered/gotten a second opinon, laying it on the line with your symptoms and how uncomfortable you and your family feel with what you go through no matter how often it is, and telling that second opinion electrophysiologist if the pacemaker that was once on the table as a teen were there again, you'd want it?
While I have P.O.T.S. and the only time I fainted it was on the tilt table induced by nitroglycerine, I do know to a lesser extent what it's like to have a crazy acting body. On my last holtor monitor, I got up after sleeping without sitting on the edge of the bed like usual for the test and my heart rate went to 160. Lately, I didn't even have to take a shower first for me to get light headed raising my arms... was just trying to look for something on an upper shelf in the pantry with my arms extended upward.
As always, these forums bring the peace of mind of at least not feeling alone anymore--for that I thank you all.
Tkimber--I will look into the autonomic storming. I do have some new symptoms and news, however, that may be starting to paint a bigger picture. The storming may well be involved, but I think there is an underlying (and previously unnoticed) trigger involved.
This all started with a (very mild) stomach upset on July 29 that seemed to go away after 24 hours. But since then I've been "tired" and cannot complete a workout (which had gotten to 40+ minutes of aerobic and/or weight lifting by that time). The fainting or pre-fainting spells have been associated with stomach upset (but you can never tell whether the stomach is the chicken or the egg) and in the past week that has morphed into a fuzzy head (like you are almost tipsy, but still able to function normally as far as the outside world sees) and headache with achiness--like a virus. This would worry me more if my daughter (7 years old and so far "normal") weren't experiencing fleeting stomach upset with intermittent diarrhea and headache--for more than a week--with no fever or other symptoms. I'm beginning to think this is all some stupid virus that is very slow moving and that has triggered my vasovagal because of the stomach involvement. Hmmmm. Meanwhile, the doctor thinks I'm nuts--I'm used to that anymore though.
LivingInHope--I've had a loop monitor in the past, but the cardiologist--who does believe me because he actually has seen my tilt results etc.--doesn't seem to think this is a "big deal" in the world of vasovagal big deals (whatever they may be). I think he thinks similarly to what I typed above--which at least would mean that this too shall pass--eventually. But until or unless it does actually pass and become just another blip in my weirdly healthy but screwed up medical file it is yet another unexplained, and very lonely and scarey situation. Since nearly no-one else knows what this is like to live through it is frustrating and begins to make you think you are nuts after awhile. It is also scarey because you feel like you are out of control of your body and that you may not wake up next time!! When I was 18 they did mention a pace maker, and honestly, I'd be fine with that if it were on the table again--because my heart and plumbing are in GREAT shape, so the pacemaker would just be a backup. But, my cardiologist doesn't seem to be thinking in that direction anymore. The previous diagnosis of VASOVAGAL seems good enough for him, and he hasn't mentioned a new tilt test. I think he feels that since this isn't a "regular" (weekly or even annual) thing that the pacemaker would be overkill. I think he doesn't live in my skin and whether this crap happens annually or triannually doesn't matter--it is hard on me, but worse it is hard on my husband and kids who are frightened by the symptoms when they surface!!! :-(
Thanks for being there--It is simply reassuring to know that others at least "get you" when you are dealing with weird things like this!!!
Yours
April
Tkimber--I will look into the autonomic storming. I do have some new symptoms and news, however, that may be starting to paint a bigger picture. The storming may well be involved, but I think there is an underlying (and previously unnoticed) trigger involved.
This all started with a (very mild) stomach upset on July 29 that seemed to go away after 24 hours. But since then I've been "tired" and cannot complete a workout (which had gotten to 40+ minutes of aerobic and/or weight lifting by that time). The fainting or pre-fainting spells have been associated with stomach upset (but you can never tell whether the stomach is the chicken or the egg) and in the past week that has morphed into a fuzzy head (like you are almost tipsy, but still able to function normally as far as the outside world sees) and headache with achiness--like a virus. This would worry me more if my daughter (7 years old and so far "normal") weren't experiencing fleeting stomach upset with intermittent diarrhea and headache--for more than a week--with no fever or other symptoms. I'm beginning to think this is all some stupid virus that is very slow moving and that has triggered my vasovagal because of the stomach involvement. Hmmmm. Meanwhile, the doctor thinks I'm nuts--I'm used to that anymore though.
LivingInHope--I've had a loop monitor in the past, but the cardiologist--who does believe me because he actually has seen my tilt results etc.--doesn't seem to think this is a "big deal" in the world of vasovagal big deals (whatever they may be). I think he thinks similarly to what I typed above--which at least would mean that this too shall pass--eventually. But until or unless it does actually pass and become just another blip in my weirdly healthy but screwed up medical file it is yet another unexplained, and very lonely and scarey situation. Since nearly no-one else knows what this is like to live through it is frustrating and begins to make you think you are nuts after awhile. It is also scarey because you feel like you are out of control of your body and that you may not wake up next time!! When I was 18 they did mention a pace maker, and honestly, I'd be fine with that if it were on the table again--because my heart and plumbing are in GREAT shape, so the pacemaker would just be a backup. But, my cardiologist doesn't seem to be thinking in that direction anymore. The previous diagnosis of VASOVAGAL seems good enough for him, and he hasn't mentioned a new tilt test. I think he feels that since this isn't a "regular" (weekly or even annual) thing that the pacemaker would be overkill. I think he doesn't live in my skin and whether this crap happens annually or triannually doesn't matter--it is hard on me, but worse it is hard on my husband and kids who are frightened by the symptoms when they surface!!! :-(
Thanks for being there--It is simply reassuring to know that others at least "get you" when you are dealing with weird things like this!!!
Yours
April
While I've had event holtor monitoring before, I've never had a loop recorder monitor, but I'd read of someone on a dysautonomia forum (I think it was this one) who got one. If these faints where your pulse is lowering to about 11 are happening fairly regularly, one of these heart rate event monitors you wear for a long period of time ought to prove out your symptoms to your doctors. Has no doctor ever suggested one? If you could prove to them your extreme bradycardia, I wonder if they would suggest a pacemaker?
Correct potassium levels is so important and low potassium can cause numerous symptoms, including fainting, feeling unable to move, weakness, nausea, and more. Has your doctor tried to determine the cause of your low potassium? Have you been given potassium supplementation? Is your primary care physician monitoring your potassium level regularly?
Correct potassium levels is so important and low potassium can cause numerous symptoms, including fainting, feeling unable to move, weakness, nausea, and more. Has your doctor tried to determine the cause of your low potassium? Have you been given potassium supplementation? Is your primary care physician monitoring your potassium level regularly?
I just read your post and was so shocked to hear someone have the same symptoms I have. I came on to post a question. I have been having a terrible fibromyalgia flare up and got desperate and read that magnesium helps relax the muscles. I'm so sensitive to everything, including any type of medication and some supplements. So the directions said to take 2-3 heaping teaspoons. I took a very flat half teaspoon. About 2 am, I starting feeling like I was falling and having those weird little seizures that I also get. My heart rate went crazy and I started sweating and got a terrible stomach ache. My normal blood pressure is so low, usually 90/60. But while I was just sitting there it was 127/80. I would meditate and it helped but the minute I started to drift off, my heart went racing and I started to get that black out feeling. I have these often, but not normally in my sleep. So I have stayed up most of the night and am wiped out. My blood pressure is still a mess and I'm burping up that magnesium still.
But what you described above is also what I have, I go into some kind of seizure that the neurologist calls autonomic storming and sometimes she calls it autonomic seizure and says it has a dysreflexia situation. She said you don't have to have a spinal injury or familial dysautonomia to have either. It's rare, but it's possible. Usually by the time we go to the ER my symptoms have passed, but my blood pressure can sometimes be stable or up and down. One time many years ago, they recorded my blood pressure to 56/36 and it was chaos in the ER when that happened because my blood pressure quit being able to be measured and it caused a grand mal seizure. Luckily I never had the grand mal seizures again. But during the moderate episodes I too cannot lift my arms, my speech is slurred and the last time the ambulance was here they accused me of being drunk or on drugs. haha. Finally they looked up my disorder of Autoimmune Autonomic neuropathy and said this is possible to happen. I also am very cold when this happens and sometimes I throw up, but not very often do I throw up. Look up autonomic storming, I'm not a doctor but it sounds very similar to what I have. Have you had a QSart test? That's where they were able to diagnose the Autoimmune Autonomic Neuropathy. Those machines are hard to come by.
Please feel free to ask me any questions. You are one of the few people who is having similar symptoms. And I'm so sorry for you. It's very unsettling.
Happy Health to you,
Tkimber
But what you described above is also what I have, I go into some kind of seizure that the neurologist calls autonomic storming and sometimes she calls it autonomic seizure and says it has a dysreflexia situation. She said you don't have to have a spinal injury or familial dysautonomia to have either. It's rare, but it's possible. Usually by the time we go to the ER my symptoms have passed, but my blood pressure can sometimes be stable or up and down. One time many years ago, they recorded my blood pressure to 56/36 and it was chaos in the ER when that happened because my blood pressure quit being able to be measured and it caused a grand mal seizure. Luckily I never had the grand mal seizures again. But during the moderate episodes I too cannot lift my arms, my speech is slurred and the last time the ambulance was here they accused me of being drunk or on drugs. haha. Finally they looked up my disorder of Autoimmune Autonomic neuropathy and said this is possible to happen. I also am very cold when this happens and sometimes I throw up, but not very often do I throw up. Look up autonomic storming, I'm not a doctor but it sounds very similar to what I have. Have you had a QSart test? That's where they were able to diagnose the Autoimmune Autonomic Neuropathy. Those machines are hard to come by.
Please feel free to ask me any questions. You are one of the few people who is having similar symptoms. And I'm so sorry for you. It's very unsettling.
Happy Health to you,
Tkimber
No---my "fainting" never involves a feeling in my head. No--it is always weakness, stomach upset, a rush of adrenaline and lowered heart rate leading to loss of conciousness. Yep--lots of fun. I always know when it is coming, and it has never (in the past) happened without some triggering event (trauma, sickness, injury, or tilt table---). The results are significant. My heart rate drops to approximately 11 beats per minute when I do pass out, and those who've witnessed it say that I have a fetal position seizure (common with severe bradycardia). It usually lasts approximately 5-10 seconds then I regain conciousness but spend 2-10 minutes in a foggy/sleepy state. I am lucid upon awakening, but unable to complete sentences and express myself well because of the weakness and disorientation. The weakness is the big thing though--barely able to lift an arm or leg, fighting to stay conscious--and after I pass out it's the "shakes" or involuntary shivering and cold that occur once I've fully regained conciousness.
What has happened recently are "pre-syncope" episodes with weakness and upset stomach and one very scary event that felt significantly "post-syncopal" though there wasn't anyone around to see if I actually passed out. I awoke feeling sick, weak, and cold, with uncontrollable shivering and that "foggy" feeling that I know too well. If it had been the middle of the day and I had these symptoms, it would have been after passing out (she says with much experience, though the nurses and doctors rarely believe me until they see it).
I went to the ER, and of course my heart rate was fine, blood work--fine (barely low potassium levels), BP fine, chest x-ray fine, orthostatics fine. So I'm back in the cycle for testing (Echocardiogram, stress tests, more blood work, etc etc etc) and simply don't expect any answers because, with the exception of an actual VASOVAGAL SYNDROME diagnosis with positive tilt results they never find anything to fix :-(.
I don't want to be sick--and I surely don't want there to be any major issues to address. I am thankful that my cardiac functions etc are fine, but it sure would be nice to know what caused this new thing....
April
What has happened recently are "pre-syncope" episodes with weakness and upset stomach and one very scary event that felt significantly "post-syncopal" though there wasn't anyone around to see if I actually passed out. I awoke feeling sick, weak, and cold, with uncontrollable shivering and that "foggy" feeling that I know too well. If it had been the middle of the day and I had these symptoms, it would have been after passing out (she says with much experience, though the nurses and doctors rarely believe me until they see it).
I went to the ER, and of course my heart rate was fine, blood work--fine (barely low potassium levels), BP fine, chest x-ray fine, orthostatics fine. So I'm back in the cycle for testing (Echocardiogram, stress tests, more blood work, etc etc etc) and simply don't expect any answers because, with the exception of an actual VASOVAGAL SYNDROME diagnosis with positive tilt results they never find anything to fix :-(.
I don't want to be sick--and I surely don't want there to be any major issues to address. I am thankful that my cardiac functions etc are fine, but it sure would be nice to know what caused this new thing....
April
So, do you mean you awaken and have a certain feeling in your head that makes you think you've either fainted or come close to it? Or are you having a feeling of being pulled into/sinking into deeper sleep? Have you been tested for sleep apnea?
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