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  1. Oh and one more thing - my blood pressure has been pretty high lately, like 155/90. Could the higher blood pressure be decreasing my heart rate?
  2. Oh boy, the rollercoaster never stops. After a stomach virus, losing fluids and quite a few blood draws in the last weeks I was flaring and my pots was worse, heartrate around 90-100 resting and 130-160 when standing. Okay whatever, I quickly got used to it. But today I took my heartrate and it was 65 sitting and standing up was only about 85-90. This is not normal for me at all. A similar thing has happened twice in the past, a few years back. Both times was before my period (water retention maybe) and I had some weird bradycardia days at that time where my heart rate would stay in the 50s resting (very low for me) and was only about 80-90 standing. It was like my ANS was so overworked it just gave up. After a few days it would disappear and I would be back to my old 80 resting-120 standing potsy self. However I’m still about 2 weeks before my period is due so I doubt that can be it. The only thing I can think is that I drank a lot of water and ate some very salty leftover Chinese food this morning, so maybe I’m retaining more fluid? But I’m always well hydrated at other times too and it usually makes no difference. I have to admit these ‘normal’ or bradycardia episodes scare me, I’m so used to my heart rate being ridiculously high (sometimes reaching 180 after eating/standing) that anything under 80 feels very slow and strange. For some reason I want to go to the ER to ask them why it’s doing this. Also the fact my heart rate isn’t raising by 30 beats when I stand also feels strange. Has anyone else experienced these brief episodes of substantially lower heart rate? Whoever thought normalcy would be so scary...
  3. Thanks for your reply. Its just such a strange feeling. Its like I can actually feel all my blood pooling on whatever side gravity is pulling on. And you are right about sleeping too much; even though I am addicted to long sleeps, my blood literally feels like it’s all sunk to my back or whatever side I lay on if I lie around too long. I am dealing with a lot of splanchic pooling in my abdomen that gets way worse after eating a meal. Think compression hose and an abdominal binder might be the only way to go. Beta blockers make me feel awful but at least they get rid of that strange blood/fluid pooling feeling and my ankles were so much less swollen on them too. My calves and skin go all stiff and hard from the fluid build up. I am so deconditioned atm. My muscles have atrophied since I never exercise or use them anymore. Sigh. I really need to get my butt in gear.
  4. Recently, every day when I wake up I feel awful, like my insides are desiccated, like my veins and arteries have gone on strike, like my blood flow has stopped, or there is no oxygen in my blood or something, like my body is made of lead. I have to wriggle my limbs around and shake myself to feel alive and not feel like I am made of lead again. I have pretty high blood pressure but it feels like there is no blood moving around in my body. I have to drink half a gallon of water just to be able to get out of bed. I drink a litre of water every night before bed. If I stand too quickly I can actually physically feel the lack of blood flowing to my head and shoulders and neck, it goes numb for a bit and my abdomen feels so heavy with blood. My hands go numb within 30 seconds if I raise them above my chest while holding my phone in bed, due to lack of blood flow. Once, I made the mistake of texting my friend for half an hour with my hands hovering above my chest, and had agonizing ischemia pains in my arms all night. I have terrible blood pooling issues, my feet go bright purple within a minute of standing. At the same time I also feel flushed and hot constantly, as if all my blood has gone to my skin but none is actually flowing around inside. It feels like I have very severe hypovolemia, but my doctor ruled that out and said it was very mild, not enough to cause symptoms. I think it’s my blood pooling. My tachy is also way worse. I am getting desperate enough to go back on beta blockers despite the side effects I had last time. I am drinking caffeine to help with the pooling but it makes me feel awful in other ways too. Does anyone else experience this? How do you handle this horrible heavy feeling of all your blood sinking to the bottom like an hourglass? I must buy compression socks, that reminds me.
  5. The young (and handsome, why do they always send the best looking ones when I feel and look my worst! 😔) paramedic who helped me the other day had also heard of POTS and even said it before I told him what was wrong. So far only encountered 2 doctors out of 30+ ER trips that knew much about POTS and both were young, It’s nice to know people especially the younger generation are becoming more aware of this condition.
  6. I get a sizzling noise in the back of my neck and head, kind of like someone frying an egg, or holding a rainstick upside down, kind of like a trickle too, and have had this on and off since I was a kid. For me it mostly happens when I am hungry, if my stomach is irritated or my blood sugar is low. I believe it may be a nerve connected to my stomach (vagus nerve) and for some reason I can hear the signals going to and from it in my brain and spine.
  7. I get sudden feelings of terror at night called hypnic jerks. For me they are very bothersome and if I am flareing or overtired I get more of them, sometimes 8 times a night. I get flashes of white light that seem like someone took a picture with a flash camera. Sometimes hear whispers or people saying my name. Sinking feelings like being on an elevator hurtling towards the ground floor. Feeling like I am passing out and fainting even while lying down. Even a few episodes where I thought I was dying and screamed and leapt out of bed. I get sudden feelings of extreme anxiety and ‘dropping’ to the ground all day too. Like being on a dropzone ride at the funfair. My eyes will go all googly or ill get sudden fizzing or sizzling noises in my ears from nerves (I think) and whooshes in my head and ears. The surges also happen in the morning for me. My body dumps a huge load of adrenaline and cortisol. My chest will feel tight and painful. I feel like I can’t breathe properly. I will feel dizzy and the walls spin. My heart rate is very high and I need to wait 10-15 minutes for it to calm down. I feel intense feelings of panic, dread, sick to my stomach when this happens. If I attempt to get up, my hr will shoot even higher and cause me to pass out and hyperventilate. So I need to just wait it out, drink some water and breathe deeply. Before I got diagnosed, I would frequently and randomly burst into tears, from stress and cortisol overload I think. Like just randomly tears would start pouring out of my eyes. I noticed myself getting a lot more short tempered and impatient as I get older unfortunately. After years of being dismissed and called weak or a malingerer, I’m not a huge fan of other people anymore. They annoy me much more than they used to.
  8. Today I was crouching for about 10 minutes in the shower and noticed when I stood up I felt very breathless and was gasping for air just for about 5-10 seconds. My heart rate wasn’t TOO fast. So I don’t get why I was so out of breath. Same thing happened when I was laying down for a couple hours then suddenly sat upright. Got that weird air hunger again and felt short of breath, then it disappeared when I breathed deeply for a few secs. i always get tachy when standing or moving but not really this gasping for air sensation. i am very mildly anemic, heavy menstruating right now, and also had two sets of blood tests a few days ago which didn’t help. Is it due to less red blood cells circulating to my lungs? Despite keeping well hydrated and good blood sugar levels, those blood tests really took it out of me and I felt very dizzy and tachy afterwards. Still feeling a bit more tachy than usual. So clearly my brain senses there is less oxygenated blood flowing around. Whenever I get a new symptom I start panicking and wondering if it’s something sinister instead of just POTS 😕 If you can relate please let me know!
  9. Recently learned I have hospital acquired anemia from all the blood tests I have had over the past 2 months of POTS crashing and hospital visits. I must have been low on iron to start with. ive noticed my dizziness, presyncope; brain fog, confusion, memory loss and fatigue and neurological symptoms are way worse at the moment, likely due to the anemia causing poor perfusion. Been experiencing numb hands and cold feet more too. Today I have been feeling particularly bad, tired, confused etc, however something weird shook me up tonight. I was drinking a glass of water with an iron tablet and felt like there was something hard and sharp in the water while drinking it, I felt it touch my lips, then looked down and to my horror saw a pretty large solid piece of broken opaque whiteish glass in my water, that I had almost swallowed down. I instinctively panicked, then went over by the sink to slowly empty the tumbler out and retrieve the large piece of glass that somehow ended up in my drink. Well I did that except there was no broken glass. I spent a few minutes making sure to search for it, but there was nothing to be found. Now I’m freaked out a bit. It was a large piece of glass impossible to miss, I am sure I saw it and I felt it bump my lip, and I did not swallow it. But when I looked there was absolutely no foreign object in my drink. I have never suffered hallucinations or delusions of psychosis before so I am a bit concerned now that I was seeing/feeling things. Is it possible this is from low brain capillary perfusion or hypoxia of the brain due to the combo of POTS and low iron/hemoglobin? Yesterday I had a horrible vasovagal near syncope in public. Would love to hear if anyone else has experienced this when crashing. I have heard of people having postural hallucinations and anemia induced psychosis before, including a woman who had low iron and would claim to see her dog wearing a fedora (lol) but there is not very much literature on it. I also feel extremely stressed atm so not sure if that could be it too. I also feel like I am seeing slight shadows or flickers in my peripheral vision which is freaky.
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