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peachychou123

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About peachychou123

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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...
  7. 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?
  8. Thank you guys so much for all your advice and support, for taking the time to reply in such detail, and for sharing your experiences. I am still extremely stressed and anxious, and still feeling lightheaded, breathless and tachy. I haven't had a d-dimer since this breathlessness started, so I went back to the ER. They did blood tests but didn't even do another d dimer even though I told them I was specifically worried about clots. Doctor was brusque and not interested. So no CT again. I'm still very symptomatic, stressed, anxious, and financially worse off thanks to the cab fare. My grandfather is actually in hospital with a DVT, having a stubborn blood clot in his leg being operated on. He has been in an incredible amount of pain for weeks and the doctors took ages to diagnose DVT even though he was showing so many symptoms. It's possible this is what has triggered my fear of blood clots and fear of doctors misdiagnosing things. Looks like he won't be out until thursday. Even when I explained the family history, it feels like no doc is that interested. I am trying to reassure myself that my CT 10 days before this breathlessness started was normal. I'm really hoping this is just a POTS flare after all.
  9. Like you, for the first few years, my HR would go up to 120 on standing. It left me dizzy and lightheaded and tired, but with enough hydration and salt loading I could manage it. My symptoms remained stable for 6 years. However, after contracting 2/3 stomach/upper respiratory tract viruses in October, my symptoms have markedly worsened. The lightheadedness and dizziness is much more frequent, even when sitting. I have been experiencing frequent exhaustion and chest pain, still not sure if it's heart related or just bad reflux. My tachycardia has worsened considerably. I was at the emergency room a few days ago as my HR was 154 just sitting! It stayed at 127 at rest for a few hours and slowly came down, but it's still shooting up everytime I stand, and it's very unsettling. I have more palpitations and my vagus nerve feels much more irritable after eating, going to the bathroom etc, I feel incredibly weak. I am trying to be brave, but it's been a difficult past month for me emotionally and mentally, and the anxiety that came before being diagnosed 6 years ago has returned full force. I hadn't visited the ER since 2013 or early 2014 I think? Since October I've been maybe 10 times. I am really ashamed of it, but I have just felt so incredibly awful. I was wondering if you have noticed an increasing shortness of breath since your tachy worsened? Currently I am out of breath just walking from room to room. The doctor tried to assure me it was just from my rapid HR and the body trying to get more oxygen going round. But in the back of my mind, I'm always worried my pots 'flare' could be the sign of something more serious. I recently had an echo, 24 hour holter, and a CT a few weeks ago. Being unable to differentiate between POTS flareups and something serious is the worst part of this illness for me. The thing is, I am not currently on any dysautonomia meds, so I'm still holding out hope that I will find something that works for me. From what I've seen a lot of people have relapses and then recover over a couple of weeks. Some people on the other hand tend to worsen. I am just hoping for the best at this point. I feel like my body's delicate balance has been quite traumatised from the viruses, emotional upsets and anxiety, radiation/scans, blood tests (I've had about 15 blood tests over the last 5 weeks...I know each vial is only a few ml, but when they're taking 5-7 vials at a time, 15 times over...that's quite a lot for a POTS patient). I was doing great for the past 6 months, so it does feel like a kick in the teeth. But I'm trying to adjust.
  10. Thanks for providing all this info. I've read up quite a lot on PEs and recognise a lot of what you're saying. I don't think they'd even consider such extensive precautionary anticoagulant therapy. I was given one dose of heparin at the hospital when they said I'd be getting a CT, but the second doctor immediately cessated heparin treatment and cancelled the possibility of CT. I know CTs are a LOT of radiation for the body to cope with. It's just upsetting and frustrating how the doctor from weeks ago ordered a CT that I didn't even need/want. I know he was doing what he thought was best but I thought it was a little OTT at the time as my bloods were fine and my d dimer was only like 280. cut-off is 240. before the initial scan I actually said to him 'if it was a clot wouldn't my d dimer be a lot higher?' to which he seemed annoyed and said 'not necessarily'. long story short that initial CT scan that I guessed would end up showing nothing ended up showing nothing. and now that I'm much more symptomatic and would actually LIKE a scan to check for PE every doctor is telling me to get lost! I was hoping they could do another less radiation-intense test like you said. But the doctors just aren't interested at this point.
  11. I'm not sure. The doctor said that if my heart rate is going that high (mine is currently at 130-140 standing and at the hospital it actually went up to 193 or something) with such minimal extertion it's like running for other people, so it's no wonder I'm feeling breathless. I am also trying to ignore it and I do feel better in the mornings. It's after eating or being on my feet too long I feel terrible. And yes talking also leaves me breathless!
  12. Your description is what I'm worried about. I know high heart rates will make you breathless but usually I can tolerate high heart rates pretty well without feeling too out of breath. But I currently feel winded just walking at a slowish pace. So it's weird. At this point I've consulted so many doctors and know none of them will order a CT. So what more can I do I guess? I'm sorry you went through such a horrible experience but you're very lucky it was found in time! Can I ask if your vitals (like your spO2 levels or BP) or your ECG at the hospital before your diagnosis showed any abnormalities? What was your PE heart rate versus your normal heart rate? The doctor told me my HR had gone back under 100 at rest so I shouldn't worry. I know most people are diagnosed with clots after the d dimer which if raised usually results in a scan. The doctor tried to reassure me that if my vitals and ECG were normal they didn't need any further investigation. I'm trying to trust my doctors.
  13. Thanks for your reply. I am just concerned because shortness of breath is definitely not normal for me. I am not asthmatic or anything like that. Even when my HR is in the 150s and I'm walking around, I still never felt this short of breath before. I would like to see a pulmonologist but a referral will take months and this has come on suddenly so that's why I'm so worried. I am okay laying flat but as soon as I even sit up I feel the air hunger. My breathing is faster than usual too. I have a history of hyperventilation but usually slow breathing fixes any tingling in my hands. The tingling was continuing even when I was doing that 7/11 breathing. I think I will head back up to the ER but I'm sure they think I'm faking all my symptoms. And I expect I'll get the same answer in regards to having another CT. I'm still much dizzier than usual and weak. I keep panicking which is making it worse. I'm trying to take my mind off things but it's so hard when I feel like I'm suffocating.
  14. 3 nights ago I went to the ER again because my heart rate was 150+ just sitting and I had a blood pressure of 170/150 which is the highest I've seen both values at rest I think. After laying flat for a while it came down to 130 then 110 or so (but it still shoots up on standing) They did blood tests (all were okay with the exception of the d-dimer (clotting test) which came back slightly elevated. At first they injected me with 1 dose of heparin and told me they were going to do a lung CT as my HR was still high, I was feeling very dizzy and quite short of breath. Then yesterday my shortness of breath grew worse after 2 nights of staying in the hospital. The cardiologist came in and told me they'd decided NOT to do a CT scan because I had one a couple weeks ago and he was concerned about radiation doses (I didn't even need that recent scan because I was not having breathing difficulties at that time! but the ER doctor wanted it done!) and I was upset as my shortness of breath had grown a lot worse. I told him I was worried about a clot in the lung. He didn't seem concerned and told me I could go home. I asked another junior doctor on the ward if there was a possibility of getting a CT but they said the same thing about the risks. Isn't the risk of pulmonary embolism more urgent though!!! I am out of breath just walking to the bathroom. I had an ECG and echo yesterday which came back okay besides sinus tachycardia. But I'm so anxious about the possibility that I have a clot in my lungs. I am still feeling unwell and am considering going back to the ER today but I expect the doctor will again refuse another lung CT scan due to the fact I'm in my 20's. I do understand that CTs can cause cancer and I am young which increases my susceptibility to radiation doses. But I've never had shortness of breath like this before and am very scared. Walking around slowly is leaving me gasping. I do not currently have any chest pain (though a lot of PE sufferers said they had no chest pain) but I feel on the verge of passing out and I keep experiencing hypnic jerks and gasping for air as I'm falling asleep. I don't really have any risk factors besides that 3 day hospital stay where I was mostly bedridden and it was 2 days into my stay that the feeling like I can't breathe worsened. Deep breathing and relaxation technique isn't helping. I am in bed on the verge of tears and I feel so weak and tired despite sleeping 10 hours. I am extremely anxious about the possibility of a blood clot and feel like no doctor is listening to me due to my prior ER visits and history of anxiety. I don't know what to do. I regret that ER visit for chest pain a couple weeks ago because if that doctor hadn't ordered a chest CT I could have had one yesterday for my actual worrisome and noticeable shortness of breath. Has anybody here had experience with PE? I know doctors usually know what they're doing but the possibility of PE scares me as they are notoriously difficult to diagnose.
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