I'd like as honest of an answer as possible if there is even an answer. I have a form of Ehlers-Danlos as well as Postural Orthostatic Tachycardia Syndrome. There have been plenty of attacks, but there have been a few severe ones. During one particular incident, my heart rate rose as my blood pressure dropped and I could feel my senses leaving. My hearing felt left until I heard nothing, my nose felt like it was hit with a hammer until I could smell nothing, a bitter taste until nothing, my body started going numb, and my eyesight started to get a "dark tunnel" like effect until everything was dark.
In the hospital, my heart rate was 187 and my blood pressure was 60/30. I am a 24 year old male and weighed about 120lbs. My family stated that the nurses were constantly with me because there were numerous times when I would stop breathing.
I have no recollection of the event other than a recalling the feelings leading up to the point where I fell unconscious. I have no memory of that day, but was apparently "non-responsive" for almost an hour from when my family stated I went unconscious to when I apparently opened my eyes. Unfortunately, the doctor is no longer at the hospital and the medical record doesn't saying anything like "deceased" or anything and they didn't do anything like CPR or something (I'm not sure what they would do, but I don't see anything).
The question that keeps rattling in my mind is ... was this close? I'm not sure why it keeps bothering me, but it's something that I want thoughts on. From what I've seen, a heart rate of 187 is not too good and a blood pressure of 60/30 is not too good either, but since my heart was beating fast I'm not sure if that's the same as an incredibly low heart rate and BP. My heart rate is normally 60-62bpm when laying down and standing up ranges between 90-100 (from the POTS).
Take this for what it's worth from a nonphysician and nonexpert in Ehlers-Danlos/POTS, but it doesn't sound to me like you came close to dying. If you had actually stopped breathing, you would have been intubated in the ER, and you would have been admitted to intensive care. Probably the reason the nurses were keeping a close eye on you is because they wanted to make sure you did NOT stop breathing. Perhaps your breathing slowed down enough that the doctor got ready to intubate if necessary. But if you had actually stopped breathing, you would have definitely known about it later. You would have been told by the doctors and nurses. Respiratory arrest is a severe crisis. You wouldn't be guessing about it, especially after you've reviewed your medical records.
POTS attacks, if frequent, can be very debilitating, but each attack is self-correcting. When you stand up and your blood pressure drops, the body puts you back down in a supine or prone position by making you faint. Not pleasant, but with enough time in a horizontal position, your blood pressure and consciousness will return to normal. In the particular incident that you describe, it took about an hour for everything to re-regulate back to baseline.
The high heart rate is the body's way of trying to compensate for low blood pressure. It keeps enough circulation going that all the organ systems continue to work. The high heart rate also self-corrects when you get horizontal, as the blood pressure returns to normal. A person who is otherwise healthy can tolerate a heart rate of 187 or even higher, for some period of time. I wouldn't venture to guess how long, but for a good while.
That's my way of looking at this, anyway. Since your post had been up for a couple of days and no one else had responded, I thought I'd give it a shot. Maybe someone who knows more will post now. Oftentimes, it seems like someone who has specific knowledge won't post until they get a chance to correct the first person who responds, hahahah. Sorry you are having to deal with this. Good luck.
But you really should ask your doctor if it's possible to die from a POTS attack, because if not, then you can be relieved of the worry. Again, this is just my limited knowledge that I'm going out on a limb on, but I think the risk of death from Ehlers-Danlos is from valve disease, aneursyms, and dissections -- not from POTS attacks. If you find out differently, please post the information, so I won't keep on saying something that isn't true.
You can be checked for valve disease and aneurysms, and when people have a dissection, there oftentimes was a pre-existing aneursym that was a red flag. So the fatal stuff doesn't necessarily come out of the blue. Since you have the diagnosis of Ehlers-Danlos, I assume you're being followed by an expert doctor. If not, you'll probably want to arrange a consultation with an expert, as soon as you can, so that your concerns about fatality can be addressed and so you can make sure you're getting optimal management.
To worry about dying from an unpredictable attack of something is a bad worry for a young person to have to live with. I hope you can get some solid medical information that will help you.
I am several times your age but I am a fainter and halso have a form of Ehlers-Danlos, and based on my very long experience, what you describe is the basic "faint." When you reflect on it, it seems like near-death, I know, but it is really a temporary alteration of consciousness due primarily to a drop in blood pressure. Your POTS condition complicates things slightly, but no, you were not close to death.
However, when the conscious mind gets around to analyzing a strange event like this, the whole thing can become rather traumatic, and unless dealt with, it can become sort of obsessive.
My advice to you: Ask for a referral to a counselor to discuss and de-fuse the experience.
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