Orthostatic hypotension - when lying. And opposite of POTs

[CaveGirl]

Ok, now I'm kind of certain that was causes parts of my problem is some kind of dysautonomia. It's just so odd and I can't find anything about it.

The past two nights I woke up in the middle of the night as I often do. Suddenly I got light-headed and had the familiar waterfall of blood falling out of my head that sometimes happens when I stand up. Only I was still lying in bed!

At the beginning of the year I had a period that felt like the opposite: I'd wake up and feel pressure build up in my head, followed by shortness of breath. Sitting up, and in some cases jumping out of bed and jumping around my bedroom to get my hr up always did the trick. There was one instance where I woke up with this, turned from back to side position, and the same light-headedness and waterfall of blood out of head happened. The pressure in my head vanished with that. I thought: oh cool! and then the 'waterfall' literally reversed and the pressure and shortness of breath came back. Sometimes this happens together with an extremely slow and unclear heartbeat.

Sometimes my heartbeast slows down bigtime and I get drowsy and experience shortness of breath when sitting on the sofa on a very lazy day. Usually in periods when I do have 'normal' orthostatic hypotension when standing up. When this happens the best thing I can do is just up and run through my livingroom to get my heartbeat up. I don't have POTs, but rather the opposite: when I do something strenuous like walking up a mountain my HR doesn't get up and doesn't deliver enough oxygen to my muscles. Once I stop my HR shoots up and I start feeling normal and strong again. Sometimes my HR drops like a stone while running. Cue poor oxygen delivery. 1-2 minutes later all is fine again. In periods with rather bad OH I can jump out of bed and walk around in circles, ignoring the dizziness for 5 or so minutes. During this whole time my HR remains at the resting rate and doesn't go up. Only when I stop does it go up and the light-headdedness and heavy legs go away.

Has anyone here ever heard of anything as odd as this?
I'm female, 47, sporty, normal weight

[Pistol]

@CaveGirl - these symptoms do not sound like dysautonomia but rather like an arrhythmia that causes bradycardia ( slow heart beat ). Have you been evaluated by an Electrophysiologist? A heart monitor can shed some light on this. Even if you had one before and it not did not show anything it is possible it just was not caught before. Although it sounds like it happens often enough that a 30 day monitor should catch these episodes. Depending on the results a pace maker COULD be indicated. In some cases restoring normal heart rate can improve the blood pressure as well. Talk to your cardiologist - what you describe sounds like you might be suffering from symptomatic bradycardia. 

I don;t know what meds you take - if any. Some medications can cause a slow HR as well. 

[CaveGirl]

7 minutes ago, Pistol said:

@CaveGirl - these symptoms do not sound like dysautonomia but rather like an arrhythmia that causes bradycardia ( slow heart beat ). Have you been evaluated by an Electrophysiologist? A heart monitor can shed some light on this. Even if you had one before and it not did not show anything it is possible it just was not caught before. Although it sounds like it happens often enough that a 30 day monitor should catch these episodes. Depending on the results a pace maker COULD be indicated. In some cases restoring normal heart rate can improve the blood pressure as well. Talk to your cardiologist - what you describe sounds like you might be suffering from symptomatic bradycardia. 

I don;t know what meds you take - if any. Some medications can cause a slow HR as well. 

Yeah, I had a 48h monitor and lots of other heart workups. It's all normal. Not the slightest irregularity, nothing. Mind you, the problems didn't occur when I had that thing. Give me a poor night sleep and all is fine. Give me a slightly faster heartbeat from a stressful day and all is fine. I feel that the nervous system is somehow involved in this, but just opposite to POTs: "you want more heart power now because you started working out? Nah, I'll just widen the blood vessels, give you a bit faster heartbeat but not as much as you need. I'm too lazy." I've documented this so often during mountain hikes.
Normal walking at food of incline: normal walking HR

incline: slightly higher HR, but super heavy legs, light-headdedness, burning muscles, not quite enough oxygen.

stop or top of incline: HR shoots up and all symptoms gone within 5 seconds and I can immediately continue, e.g. doing a stiff 10km walk provided the terrain remains flat. This is also something that I have since at least very early childhood. And i'm 47 now. It also happens when I do a spontaneous sprint. Children run a lot. I could never because if this problem.

[Pistol]

@CaveGirl - a 48 hour monitor is not long enough to catch these episodes. I would ask your doc for a 30 day monitor, since the episodes continue and you have noted that it is accompanied by changes in heart rate, I had at least 3 30-day monitors that did not show anything other than tachycardia, at that point my autonomic specialist inserted a implanted loop recorder, which is good for 3 years and sends the episodes directly to the cardiologist. 48 hours is simply not reliable to determine of you have an arrhythmia!!! Any symptomatic episodes like you experience warrant longer monitoring. 

[CaveGirl]

5 minutes ago, Pistol said:

@CaveGirl - a 48 hour monitor is not long enough to catch these episodes. I would ask your doc for a 30 day monitor, since the episodes continue and you have noted that it is accompanied by changes in heart rate, I had at least 3 30-day monitors that did not show anything other than tachycardia, at that point my autonomic specialist inserted a implanted loop recorder, which is good for 3 years and sends the episodes directly to the cardiologist. 48 hours is simply not reliable to determine of you have an arrhythmia!!! Any symptomatic episodes like you experience warrant longer monitoring. 

It doesn't exist here, more than 2 days monitoring. The insurance just won't pay for it, and hospitals just don't have anything that they can hand out for more than 2 days. if this really was a heart issue then it should probably be getting worse. but it's not.

[DADofPotsSon]

About 15 years ago or more my Son#2 who has H-EDS and POTS had episodes of syncope in his sleep usually about 2:30 AM.  This was first noticed in College by the doom room mate.  Dr. Grubbs ordered a sleep study and it was determined he had episodes of Hypopnea during his REM sleep patterns and this was causing his syncope in his sleep.  So not only did he have to deal with syncope while he was awake and vertical he had it while sleeping too.  As we did some thinking it became apparent he may have had this in HS too, but undetected at the time.  Dr. Grubbs added some medicines and did some medicine time changes too which seem to fix the problem.  I sort of forgot about this but remembered it reading your post.

[CaveGirl]

Hello DADofPotsSon,

That's very interesting! I likely have EDS, but a fairly mild case, and like so many other things there's just nobody investigating it here. "your joints and tissue are just a bit lax" is the common answer. And yeah, because I make sure my muscles remain strong I have fairly little problems because they've taken over the function of tendons and other tissue. There are just two EDS specialists in the whole country, one of which doesn't take new patients anymore, the other one has waiting times for at least a year for a take-in. I feel the answer to my odd problems above might be partially related to this: poor blood vessel strength, and my nervous system deciding that speeding up the heart when blood pooling happens is just a waste of energy. But honestly, no idea. But yeah, when something happens at night it's usually around 2-3hrs after falling asleep. And inclines up, running, etc is just something that always existed.

[CaveGirl]

After a run today that went somewhat wrong I feel that the low HR I experience also happen when I run. Hey, it's even present in a cardiopulmonary exercise test my doctor had me do. This is today's run. The red line is HR, the orange one pace. I don't know what happened during the first short downward peak in HR. The second bigger one happened when I ran into the wind, This, and a mild upward slope are typical reasons for my HR to suddenly drop down. Hey, this is a drop of over 15bpm. My HR briefly came up again when running in a little stretch of road without wind, and then crashed down again. Give me a tiny bit more strenuous and this happened. Give me a mountain to walk up and I need to take microbreaks every 50-300 steps, during which my HR shoots up and I feel great again. Once I walk on my HR drops together with heavy legs, light-headedness and a feeling of too little oxygen. Rinse and repeat. This only happens upslope.

[Pistol]

@CaveGirl - it could be a vasovagal reflex. When you walk uphill or into the wind you likely change your breathing - or even hold your breath without knowing. You might strain as well. Both of these things ( breath holding and straining ) can trigger the vasovagal reflex, which is a normal reflex that slows our HR. Try to strain as if you are having a bowel movement or as if you are blowing a balloon - you will see your HR drop. 

[CaveGirl]

On 5/1/2021 at 12:39 AM, Pistol said:

@CaveGirl - it could be a vasovagal reflex. When you walk uphill or into the wind you likely change your breathing - or even hold your breath without knowing. You might strain as well. Both of these things ( breath holding and straining ) can trigger the vasovagal reflex, which is a normal reflex that slows our HR. Try to strain as if you are having a bowel movement or as if you are blowing a balloon - you will see your HR drop. 

No, I don't think so. There's nothing in the raw exercise test data that suggests this, and my running breathing is totally regular until I run out of air. At this point on this run I was running with a 3/3 step breathing rhythm and didn't notice the short dip at all. A bit into the longer dip I had to change to 3/2 or 2/2 (can't remember) as I was running out of air.