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CaveGirl

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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
  7. My bed is not made for this, but yeah, in the past. While sleeping I slide down the elevated part and curl up at the bottom of it.
  8. It's low. I agree, blood should distribute evenly. There's however something odd going on that causes what feels like high pressure in specific bodyparts from which I wake up which goes away once I sit up. I don't have an explanation either.
  9. Yes, but when you lay down the lowest point is not the feet. Maybe too little blood flow causes a massive pressure in the head, eyes, ears. Not sure. I however get the same symptoms when doing a handstand against the wall, including shortness of breath and a heart rate that doesn't go up. Getting my heart beat faster fixes the problem. But it doesn't explain why this goes away as soon as I sit up. I woke up over the past few weeks with either a pressure buildup in my legs, in my belly or my head. My heart seems to be healthy. The only thing found during a 48h holter test is that my heart randomly speeds up to 100bpm for 20 seconds or so while I sleep. There were nights where unfortunately nothing else happened and I just slept all the way through. My heart also occasionally does a little sprint during daytime, very rarely though. I always thought it was kind of fixing blood pooling but not sure.
  10. Oh gosh, I had that! My doctor ordered an ultrasound to see if something was going on. Of course there wasn't. Then the head problems started. Time to discuss this again. Can blood pooling not caused by serious venal insufficiency but by vasodilation cause a bit of an edema? I have a bit of leg swelling since being a teenager. An unsporty, but normal-weight one. If so, then that might possibly explain my problems. But if extra fluid from this accumulated in the skull then this should be visible on ct, right? But the ct was normal according to the doctor I saw in this emergency treatment. Hmm...
  11. So I went for a run again tonight. I had a pile of salt before the run and wore my compression socks. The run was fantastic! The first part of the run, this is where potential blood pooling might play a role was very smooth. I quickly and smoothly got into my normal running HR and pace. But: this all didn't help with energy. It was just gone at the same point as ever. Thus I wonder if there are two problems: blood pooling, and something else. With regards to blood pooling; is this possible in body parts other than the feet? This would be my head when lying down, then associated with shortness of breath. Maybe in my stomach area (same odd pressure happened in the past)?
  12. I don't have children. My dad suffered from exercise intolerance as a young man and decided to never exercise again. My sister has also problems, but they developed at a later age, and one of her daughters as well, but she's also got epilepsy that nobody can explain and mentally is on the level of a 5 years old (she's 10). Thus there's something in the family. And nobody has a diagnosis. I actually can't exercise slower. Yes, I can walk. But as soon as I run my HR jumps up by a lot. Doesn't matter how slow I run, nor how fit I am. But it's totally under control in that it slows down immediately when I walk or stop, and picks up in a normal way once I run again. I can prevent getting above the second ventilatory threshold usually, just by slowing down. But I can't run at all with a less crazy hr.
  13. I have occasional orthostatic hypotension. But there's usually a reason for it, namely that I pee out a pile of fluid. I have no idea why this happens though. However, if I do wear lower leg compression I'm able to do more. Thus I guess there's still some blood pooling going on. No, not being tested yet. I just had a cardiopulmonary exercise test, which showed that I am kind of healthy apart from little energy coming from fats relative to carbs, and when I correct the test to before I started exercising then it's very, very off: highly hyperkinetic circulation (HR increases nearly 2x faster than oxygen uptake) and a few other things. . But I've been exercising for 15 years, after growing up with knowing I can't run, climb, do all the things other kids do. Thus while the test is kind of normal it should have shown a person that is a lot fitter than I am. Thus I put in a lot of work, but only have the fitness level of someone who goes for a walk every now and then.
  14. That's what I've been wondering. I know that I have rather bad orthostatic hypotension sometimes. For some reasons I have periods where I pee out tons of fluid, and when I stand up too quickly then I nearly faint. It feels like not just dizziness but a waterfall of blood falling down from my head to my chest (I also get small waterfalls in my arm by just lifting it up. I might have a mild form of EDS, mind, and my connective tissue is rubbish). And blood pooling in the legs. Oddly in these periods my heart also seems to think: "well, I could correct this, but it's too much of a bother. I just beat extra slowly" Something is seriously messed up here. I had this the other day again and experimented a bit. Stood upright for a bit, then did a handstand against the wall. Et voila! The waterfall of blood went towards the head, and there was my head pressure and shortness of breath. I suppose, if the heart is not beating faster to solve the blood traffic jam then oxygenated arterial blood can't get towards the brain, hence shortness of breath without any further symptoms. Thus this is happening at night when I sleep, but currently only after I exercised in the evening. Sitting up lets gravity do its thing, and my heartrate might go up a tiny bit. Why this pressure kind of 'got stuck' is a completely different question though, as is why it happens after exercise. Maybe because my veins relax more during sleeping? Yes, I told my doctor about the lumbar puncture. He sounded very disbelieved, and wrote down psychic problems. The treatment was in the neighbouring country, and I'm still waiting for the report and all results. I need to discuss this with my doctor again. Great. I also saw a neurologist for this, and he didn't think I have a neurological problem either. Argh! So I spent a lot of time with the exercise test I had, made lots of additional calculations, and also compared the results to people with POTS and mitochondrial myopathy (as much as possible). There's a lot of similarity with a blood pooling type of pots, but it doesn't quite fit. There's a 100% match with mito if I correct VO2max and heart rate to before I started exercising some 15 years ago though (pays off to be a data geek). And especially that my body is essentially getting all energy from carbs instead of a mix of carbs and fats in every bit of exercise I do seems to be typical. In periods where I don't exercise my fitness diminishes so quickly, and even just working shifts the RER towards 100% carbs where I just sit at my desk and work and walk to a meeting every now and then. Hence I crash when glycogen gets depleted because i don't eat every 90 minutes or so or eat too little carbs because the keto guy at the office organized breakfast. I will discuss this at least tomorrow.
  15. Please bear with me. Since earliest childhood I've not been able to run, climb, etc. In my teens I realized I can't walk up mountains. No idea if this was present earlier. I'm nearly 47 now. Just a summary of my symptoms: I can exercise and do, but not good. When I walk I run out of energy after roughly 120 minutes, when I run after roughly 70 minutes. I literally hit the wall, bonk, whatever you want to name it. All muscles in my body cramp up for minutes when I go to my max, then I limp home under pain and feel weak, confused, and in mild pain for two days. Basically how people describe depleting their glycogen stores. Year of running, hiking, cycling etc have not improved this at all. Fitness aside, In theory people should have enough energy to run half a marathon. I don't. I've been running for years now, yet can't run a lot faster than walking speed despite structured running programmes to get better. As such, I can't improve on my VO2max and I'm still the slowest runner out there. My HR when doing any sport but walking on flat ground is always very high. There's just no improvement in that I'm able to run at a lower heartrate. My vt1 zone is roughly between 160-180bpm, and most running is at the upper end, thus around 176-180. I estimate my HRmax at 209. Once I get past 180 all exercise stops due to burning muscles and shortness of breath. I think this is the VT2 threshold. I can't walk uphill. I have no breath to speak, and need micro breaks after 50-300 steps which provide immediate relief from burning, fatigued leg muscles and shortness of breath. Old people overtake me while chatting happily. No problems downhill. The typical 9 hour mountain hike consists of 6 hours up, 3 down for me. I crash if my diet consists of too little carbs, if I'm active before breakfast or don't eat every at least 2 hours. People are supposed to be able to fast for a day. I last 2 hours if I do more than laying in bed. I had a cardiopulmonary exercise test recently, and I'm not sure something is there. The doctor chose much lower ventilatory thresholds than I would have chosen based on my own experience. Based on his interpretation all is fine. Based on mine I seem to get very little energy from fatty acids and none when running, cycling, etc, but this is influenced by other parameters that I can't calculate, like buffering of lactic acid (which wasn't tested). Thus all might be fine after all. Oxygen uptake was a bit low as well. I had a few occurrences of lactic acidosis from short bursts of high intensity activity, like sprinting for a train, or trying to run up a hill. Apart from all this I'm totally normal. I'm not dizzy, not tired, no palpitations, nausea, tachycardia apart from when exercising (but HR increases slowly when I start and comes down quickly as expected when I stop). I'm happy, active, do lots of fun things, climb trees or crawl into extensive caves on my stomach with just my phone torch that I should not crawl into. Yes, my heartrate shoots up briefly when standing up, and rarely I get a bit dizzy (feels like a waterfall rushing from head to chest). Exercising, and especially mountain walking feels like there might be a blood pooling issue, but I'm not sure. Compressive calve sleeves seem to help somewhat. But they do nothing against bonking and my constant need for carbs. There also seems to be a family story with exercise intolerance. It could be an error in metabolism, but it's a lot milder than what other people experience. Or some very, very untypical dysautonomia. Also, when I exercise a lot I sometimes wake up at night with what feels like my heart stopped beating. I nearly faint, sit up in bed and it's gone. I go back to sleep and feel how my heart slows down again and stops. Once I get fully awake, jump a few times through my flat and then go back to bed it's gone. With some acidoses I get the same, but it lasts for weeks and eventually gets so mild that I'm not at risk of fainting anymore (still shortness of breath) and can just remain laying. And notice how a massive pressure builds up in my head, until I sit up again. Rinse and repeat. In these phases I also get shortness of breath during daytime, which I also get rid of by moving. It's like my heart seems to think: "there's a pressure gradient somewhere and no point trying to get blood and oxygen there. I keep it easy now" I had some recent checkups in a hospital, and all tests were normal. CT normal. They did a lumbar puncture in the end, and 15 minutes later I was dancing though my hospital room because I've not felt so good in weeks: pressure gone, dyspnea and wheezing gone, brain working. I have no idea why, but it did the trick and I'm still fine now. Well, I still get mild nightly symptoms when working out in the evening. This all feels like the autonomous nervous system is somehow involved. But not sure. Oh yes, I don't feel understood by my doctors. Hey, not everyone can run for 60 minutes, thus why am I complaining? Thus a diagnosis seems far away. Opinions? Could this be some kind of dysautonomia?
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