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peachychou123

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  1. Sorry if this is very long. I’ve been struggling with POTS since I was 17 and I am 28 now. Like everyone I go through crashes and other times when I feel okay. At times it’s hard not to ask ‘why me?’ I had sudden onset POTS and went from being a healthy active sociable teenager to bedridden overnight. I often feel like I was robbed of my youth even though I try not to see it that way otherwise I will become too bitter. While my friends were out partying and meeting people and having fun I was either on the couch or in bed crying wondering what was happening to me. It took me 5 years to get a diagnosis - prior to this I was dismissed as being crazy and it all being in my head. One of the hardest parts is feeling like no one believes you. Most people including many doctors don’t know about POTS and have little to no interest in educating themselves about it. They cant understand why if I’m at a restaurant I need to leave early because Ive been upright too long and am having chest pain and tachy and feel like I’m gonna pass out. They just think I’m being dramatic or a party pooper. Recently it was my sisters wedding and I had to sit down at a table for 4 hours, my tachy and presyncope was so bad I had to sneak off to the bathroom and lay on the floor for 20 minutes with my legs up against the wall in my bridesmaid dress. Incidents like that help me see the funny side of POTS but the truth is having POTS isn’t much fun at all, and I feel incredibly alone. I have felt 100 years old even before I turned 18. The worst part is the isolation and feeling like I can’t trust my own body. Everytime I get a new symptom I feel extreme dread wondering if it’s just the POTS or something else, whether I need to go to the emergency room or not, if this is just a little blip or something I am going to have to learn to live with long term. I have had two relationships in the 10 years I have been ill and both of them broke down due to my illness. The man I thought I would marry left me a few weeks ago because he couldn’t handle the implications and care aspects of my POTS anymore (even though I try extremely hard to be independent and lean on others as little as possible) Even though the stress from being left again has sparked a new POTS crash I cant blame him because it was immensely difficult for him to deal with this too. I feel myself spiralling down into another POTS crash. Any kind of shock or anxiety or emotional pain like a breakup seems to amplify my POTS because mine is hyperadrenergic. At times I worry about the future, worry about whether my POTS is going to worsen as I age, whether i will ever be able to find a partner who can handle chronic illness, whether I will ever be able to have kids and a family of my own since I am so exhausted by even the most menial tasks. I try to distract myself and enjoy the beautiful sunshine and beauty of nature but my body is always nagging me with symptoms that scare and distract me, I can’t get them off my mind. I don’t want to be a downer but sometimes it gets hard and it feels like outside of this forum, no one really understands. Talking therapy doesn’t help much, I was on fluoxetine and it made my moods worse since I came off it. Valium doesn’t even help the intense dread and anxiety spells I get and recently found out I am allergic to it. I just don’t know what to do anymore. How do you cope with the stress and depression that comes with having a chronic illness like POTS?
  2. Now that I think about it I think I see why my blood pressure was a bit out of whack. Yesterday I had a pretty rough morning and cried for a few hours, crying tends to really wipe my energy levels, as well as dehydrating me/losing salts. I drank a lot of water then tried to salt load a few hours later instead of mixing the water and salts properly. Which might explain the high diastolic and somewhat high systolic and feeling rough, too much water and too much salt both make me feel crappy. I have also been laying off carbs recently, because they worsen my tachy. BUT...I also think they act as a vasodilator, which helps keep my blood flowing better and helps lower my high blood pressure. So even though I am tachy when eating carbs they actually help in a way. But yesterday I barely ate anything except salt and a banana in the morning. When they gave me nitroglycerin in the ambulance a few weeks ago, my blood pressure dropped from 145/90 to about 80/50. I immediately felt way better. Vasodilation seems to make me feel good. I was very stressed in the waiting room and sitting around too long plus very hungry and a bit thirsty but also loaded up on salt. Also been having diarrhea lately which isn’t helping my hydration levels. So I was having a stressful adrenaline rush, not enough vasodilation and too much sodium/not enough water which was hurting my blood flow. I definitely suspect I have always had hyperadrenergic POTS. If it ain’t broke then don’t fix it maybe? I guess I will stop trying new methods and stick to eating carbs and drinking electrolyte sachets mixed with water from now on.
  3. Yeah honestly my BP concerned me. I have slight hypertension and usually have a very wide pulse pressure (like 50-55, normal for me is 135/80) so no idea why I only had a 12 or so last night, I was worried something was up and have no idea what may have caused it, aside from mild dehydration. I dont know if maybe it was a faulty reading because I was bending my arm at times? I even asked the doc if they were gonna take it again and he said there was no need. I said something about pulse pressure to the nurse and she just stared at me like what? My BP is kind of loopy sometimes. Basically they gave me an ECG and sent me on my way. No fluids of anything offered. My home BP machine is broken so I can’t even check it. It seems some other users here have struggled with very narrow or very wide pulse pressures too. Narrow pulse pressure scare me because they are often associated with heart failure or hypovolemic shock. But the dr said my ecg was perfect (and I wasn’t tachycardic when they took it) so he didn’t seem to give a crap. I guess POTS patients have a lot of pooling and less blood passing through their heart so it might explain the narrow pulse pressure. I was sitting waiting out there over an hour before they even triaged me. I hope I can get out of this rut, feeling slightly better after downing lots of water. I really need to take it easier. Thanks for the kind words.
  4. Last night I had a rather scary episode that involved me having to get out of a Uber that was driving me home from the emergency room because the driver was running red lights and driving recklessly. Normally I would avoid exercise because I am so deconditioned but I guess last night I was feeling brave...what a dumdum. I had quite a bit of anxiety in the car and was shaken, but was pretty sure I could make it walking the 4 blocks home. What a mistake that was! Pots Tachycardia, narrow pulse pressure (noticed this at the hospital, BP was 130/118 ***, doctor didnt seem to care at all, no wonder I felt so crappy) freezing temperatures that hurt your lungs to breathe, deconditioning and being stuck in the house for the past year and a half, premenstrual syndrome (POTS always worsens around then), blood draws at the hospital + anxiety + fatigue + hyperventilating + dehydration are NOT a good mix, let me tell you. Much less walking deserted streets at midnight like a low inhibition fool. I started walking very fast and pushing myself because I dont like the underpass there, got about two blocks in and could feel my heart racing, I guess I started breathing very deep and fast to compensate? Which was hurting my lungs due to the cold air. And then started feeling woozy like I was about to drop, hands went numb, realized I was hyperventilating very badly. So I’m feeling like I’m about to pass out alone there and then in this freezing dark street, while trying to calm myself down. Heart started racing and skipping, started hyperventilating more unintentionally, really don’t want to faint, trying to grab onto a nearby railing, vision starts dotting. Was trying to force myself to walk but I really couldn’t, had to sit down on the pavement and force myself to breathe slower, and could not get back up or even attempt to walk again. Thank goodness my mother convinced me to take her phone with me because I don’t know what I would have done with my broken one and sitting there alone on the verge of fainting in the middle of the road with zero help available. I was very close to calling an ambulance but decided against it because I had literally just been to the ER and that would be pretty embarrassing. Finally managed to get another cab after 10 minutes (different driver!) who was rather bemused by this unfit lady who can’t even manage a block or two (I think he thought I was drunk because I was slurring my words and stumbling) Anyway today I feel like crap and have been laying low and drinking lots of water, feel like I might have done myself some hurt by pushing myself too hard. Lesson learned - don’t push yourself if you can’t handle it, dont attempt intense exercise if you are very deconditioned, don’t panic even when you feel like you are about to hit the deck, breathe properly, and always ALWAYS keep hydrated. Oh and have a cell phone on you at all times.
  5. At the ER when I was having chest pain they said my troponin level was 0.04 ng/ml. Thats normally the cutoff, basically the high end of normal. But otherwise they couldnt find anything wrong so they sent me home. Prior to this I had been having a couple hours of tachy with pulse 140-160 for a few hours. Has anyone else had elevated troponin due to their tachycardia alone? It’s got me a little worried, usually mine hovers around 0.02 ng/ml but not sure if I’m just being a worrywart 😕
  6. I totally get your fear, I was terrified when it happened too but if you’ve had your heart checked and it’s structurally healthy it’s unlikely a little blip would cause any danger to you. Your heart corrected itself and seems to have done so repeatedly which is good, if these episodes last longer than a couple minutes or so you should go to the ER though. I really do believe the vagus nerve is responsible for so many of these strange little skips. I had gastritis lately and my PVCs and ectopics were way more frequent. I’ve had short runs of these very hard fast beats infrequently for the past 3 years or so. I struggle with anxiety with new symptoms too really wouldn’t spend any more mental energy on it. In fact the ER dr I mentioned it to the other day said these type of short, hard fast palpitations are very common and nothing to worry about in a structurally normal heart
  7. Couple days ago I was on my phone in bed for a while. I try to avoid this because I know it gives me tingly uncomfortable arms due to lack of blood flow. It’s usually mild enough that I can ignore it. Well this time when I put my phone down I had extreme pain and numbness in my arms and hands. It lasted hours and I could not get relief from it. It was quite agonising. Because I was having some preexisting chest pains I got very scared and went to the ER. Because my last trip wasn’t too long ago a senior doctor saw me. He was kind of mad to be honest. Of course he had never heard of POTS and didn’t really care to hear about it. Basically he did an EKG and said you’re good - refused to do any blood draws because I had some not very long ago. I was upset by this and insisted this symptom was new but he wouldn’t budge and told me to go back home and rest. Well ever since then my arms and hands have been quite painful and tingly on and off. I have no idea what’s causing this. It was the kind of ache and pain when you have a virus but I don’t have any other symptoms of one. My mind always panics whenever chest and arm pain are involved. I have regular chest pain but never arm pain like that. Now it seems like anytime I raise my arms above my head for more than 30 seconds they go tingly and numb. Trying to breathe right so as to avoid hyperventilating which makes it worse. I keep worrying my heart isn’t pumping correctly even though my pulse is strong and capillary refill time is okay. Anytime I get a new symptom I freak out. Anyone else experience this arm pain and numbness?
  8. I’ve actually experienced a very similar symptom, just the other day it happened again. Like you I am used to the usual PVCs and PACs but very occasionally (like once a month or less) I will get a scary episode with a couple skips and then suddenly my heart will go BOOM BOOM BOOM BOOM very fast for about 10 seconds. It usually happens when I am laying in bed or my stomach is irritated because I ate something spicy or forgot to take my reflux meds. I have had multiple EKGs and they said everything looked good. It’s possible you had a short run of SVT but SVT is usually harmless and can usually easily be fixed if it recurs. If your heart goes back to normal rhythm right after that’s a great sign! You’ve got through it and its likely just a harmless vagus nerve thing.
  9. I've been having a bit of a POTS flare due to yet another viral infection. I only had a cold and sore throat, but my tachy was worse the last few days (120+ at rest, it was 140 in the hospital, when it's usually about 80) and I have been feeling a little more winded than usual with some chest pains, so I decided to go to the emergency room just to be on the safe side. They did an EKG and bloods and my troponin came back at 0.02. The cutoff for normal is 0.034. So technically it's still below the threshold. But I've heard troponin levels should ideally be at 0 in most people. Apparently my troponin hasn't been 0. It always came back at 0.01 in my past blood tests. So it is always slightly elevated, though still low. No idea why. Perhaps the strain of chronic tachycardia? But tonight scared me as I have had dozens of blood tests in the past, but suddenly it has doubled. The ER doctor did not seem concerned in the slightest and in her words 'a rise so small is like it never even happened.' I know there are other causes of elevation in troponin besides a heart attack, but these seem pretty serious i.e. PE, sepsis, etc. I'm wondering if the sustained tachycardia has increased my troponin levels, and if any other POTS patients on here have experienced elevations in their cardiac biomarkers? From a few medical journals I've read it seems that 'intense exercise' such as marathon running can cause small but remarkable rises in troponin levels in some people. I guess walking around with a heart rate of 160+ could possibly count as pretty intense exertion? However, I'm not a doctor, so I don't want to jump to conclusions. Also, I'm only 25, and it seems most of the people in these exercise test studies were in their 40s and 50s. Of course, my anxiety keeps making me think of worst case scenarios like viral myocarditis, or that maybe they took bloods too early and it's going to continue to elevate. But I'm trying to trust my doctors as I've developed a habit of questioning a lot of the things they say. Still confused as to why it was elevated though.
  10. Sorry you've had a flare, it seems this time of year is notoriously bad due to all the germs floating around. POTS flareups are common after catching a virus. Even those without dysautonomia tend to have higher heartrate during a viral illness. Is your blood pressure lower than usual? Can you get ahold of your doctor to discuss why your beta blocker might not be working? You might simply need a higher dosage but of course you'll have to discuss this with your physician first. I had a bad flare during October after a stomach virus and my heartrate was also consistently higher than usual for over a month. Landed me in hospital for 3 days. The post-viral fatigue is still here, and it's kicking my butt. At one point in the hospital the nurse caught my heartrate at 193 and I wasn't even doing anything except standing up! Really exhausting and unsettling. My beta blocker only worsened my dizziness. Hopefully it is just a temporary flare and will go away. Make sure you rest, take plenty of supplements and fluids, try to avoid sugar, carbs and heavy meals especially in the evening (carbs can really set off tachycardia) and don't eat after 5pm. If you become unusually lightheaded, tachycardic or symptomatic it's always good to get an EKG just in case. I can't stress enough how important sleep and rest are during these POTS flares. The more you try to push your body, the worse you will feel. Of course, you can always try recumbent exercises, stretches etc to keep the strength up in your legs and prevent blood from pooling. But if your body is telling you to slow down, listen to it. Hope you feel better soon.
  11. I have also been dealing with some heavy fatigue for the past week. I felt too weak to physically move from the couch at times, and like I could fall asleep while standing in line at the checkout. Brain fog is also worse, I've been spacing out more and find it hard to concentrate when people are talking to me. From what I've read on this forum, it seems a lot of people with POTS or dysautonomia struggle during this time of year. Like you said it could be the combination of the seasonal changes, temperature fluctuations (it's cold outside but often overheated indoors in many places which can provoke vasodilation/vasoconstriction), plus an abundance of flu and other viruses floating around. And yes, the dry air definitely makes you feel dehydrated. Before I'd always found winter a doozy compared to summer, as the heat can really exacerbate my symptoms. But I've been flaring badly since the beginning October. It started with a stomach bug. Your body might be fighting off the start of a cold or flu. Today I went for an interview and I don't know if it was the effort of climbing stairs or the fact they had the central heating on full blast, but I felt so ill and faint I could barely concentrate, and immediately had to ask for a glass of water. I've also been having a lot of anxiety in relation to my symptoms worsening (though thankfully a month later my HR is finally coming down to my previously POTSy 'normal'.) If it's any consolation even my fittest healthiest friends have told me they're feeling wiped out from the seasons changing! This weather just makes everyone want to curl up and hibernate. I hope you feel better soon.
  12. Well as I was getting dressed for bed I noticed a bit of weird swelling in my leg today. Most people say their ankle or whole calf swelled up. Well, this swelling is weird, it's slightly bulgey, localized and near the surface in one patch. No pain, but there's a patch maybe 6cm long and 4cm wide, and less than 1cm raised, on the front of my left calf, that is swollen. It's hard to see from the front or just by looking, but when I look down at my legs, especially under a light, I can see the shadow where it's definitely raised. I have always had some pretty thick blue veins underneath that patch of skin, and to be honest my other leg has some mild cellulite & uneven fluid distribution too with some bumps and bulges, so I have no idea if it's just some pooling/fluid from eating lots of salt and being on my feet a lot today, or a sign of a clot. Either way I'm really worried. I'm so tired of running to the ER but I think I will need to get this checked out and make sure they run a d-dimer this time. I wonder what they can do as I've heard ultrasounds often miss DVT especially those in the thigh, pelvis, etc. A few weeks prior to this I was getting a lot of pain in my lower back/left hip. But my d dimer was only marginally elevated when this was going on (cut-off 240, mine was like 287) My anxiety is just through the roof atm At the same time I'm trying to remember that I have been having a lot of tachycardia and lightheadedness, feeling like I'm gonna faint multiple times a day, and just generally feeling awful since October 1st, and the good thing is I had a chest CAT scan that came back clear on October 20th (I started feeling short of breath on the 31st, so technically my clear chest scan was done just 11 days before the shortness of breath started)...hmm. And the night BEFORE the shortness of breath started - Oct 30th - they'd actually given me a tummy shot of heparin as a precaution in the hospital. So I don't know what to think. The chances of developing a PE that timeframe, between the scan and right after the heparin dose, seems pretty slim. But I would hate to have something serious go undiagnosed. 3 different doctors have told me they don't think I have a clot, and that should be enough to calm me down, but my anxiety won't let my mind relax and now I'm hyperaware of every symptom. It's maddening. I have a box of low dose valium in my cupboard and I'm tempted to pop a pill or two but I know it's just going to make me even more dizzy lol.
  13. As far as I know it's common for any kind of infection or virus to increase HR. It's your body's way of trying to pump it's white blood cells around the body more efficiently, 'patrolling' for sources of infection. If you develop a fever or severe pain/swelling, it'd be best to see a doctor.
  14. I was on propranolol for 4 years and it helped a lot. I came off it and felt fine for about 6 months, then relapsed last month. I have tried the propranolol again and while it lowers my high HR, it isn't doing anything for my dizziness anymore. In fact, I've heard that when you use beta blockers long term, the body tries as hard as it can to 'unblock' these blocked signals. Usually by increasing adrenaline production. So now I feel that my body has become extremely sensitive to adrenaline and thus much more symptomatic. Don't get me wrong, it worked great all those years, but I'm going to explore other meds with my doctor before going back on BBs I think. I seem to be experiencing rebound effects. But that said, many people take BBs for decades without any adverse effects. Maybe I just shouldn't have come off them...
  15. Sometimes my bp is lower, sometimes it's normal, sometimes I'm hypertensive. I have felt dizzy and lightheaded at all of these pressures. For me, I think it has less to do with bp and much more to do with heart rate. Slow and fast heartrates can both lead to lightheadedness. In both cases the body is struggling to circulate oxygenated blood around the entire body. I also have felt lightheaded sitting and sometimes laying down. Currently I am in the middle of a POTS flare, so my lightheadedness is awful, I keep getting those weird 'trapdoor' 'falling' sensations even when sitting. It is NOT vertigo. I have been up and down to the ER a lot as I am worried about the possibility of something more serious. The dizziness is very debilitating and the symptoms which has always been the biggest source of anxiety for me. What did your specialist say?
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