peachychou123

Ah I see, thank you for this info, I'm glad Midodrine is short acting as I prefer these kinds of meds, but I'm sorry it didn't work for you. My HR is usually on the higher side but as I said my BP fluctuates at random times, so I guess it's going to be a case of trying to balance my HR and BP without either dipping too low or getting too high. I will speak to my cardiologist in a few weeks and see what he thinks about it. All the best and thanks again!

This is so helpful and encouraging, thank you so much. Before I never really put the emphasis on volume expansion either, my doctor just wanted to stop the surges and adrenaline rushes, and for a few years, the BB's worked for that. But I am also going through a rough patch and have become more symptomatic, so now I need more help and have to explore my options a little more. I've read through the side effects of Florinef and found them quite scary, so Midodrine is certainly looking more appealing at this point. Thanks again!

My heart rate is usually around 80 supine/120 standing (this rises to 100 supine and 140+ if I've eaten carbs that day lol) My blood pressure is weird to be honest. It fluctuates. I have heard midodrine can cause supine hypertension, so that's why as much as I want to try it, I will need to consult with my doctor first. I guess he may suggest taking a BB in addition. He is more concerned with getting my HR down.

Yes I discussed it with my doctor and I weaned off them very gradually, cutting my dose down very slowly over a period of months. I was feeling fine without them for around 6 months, and then in early October, after a viral illness, my symptoms worsened. So I can't say for sure if it had anything to do with the beta blockers, really. It was only after taking them for years that I found out about these rebound effects. They also caused me to gain weight and I developed some symptoms of insulin resistance with them which in turn made me feel worse and more symptomatic after meals, so that's why I stopped. My doctor wants me to go back on them for the tachycardia and anxiety, but I am looking to discuss alternative medications besides BB's with him.

He didn't specify what the long term side effects were, but there are lots of studies which have shown they are linked to developing type 2 diabetes, some people can also develop rebound tachycardia or high blood pressure after stopping them, and certain types of angina can be worsened by them. Also I believe that the non-selective beta blockers have an effect on the CNS, so it's definitely possible they contributed to your POTS. Some people's nervous systems are much more sensitive to medications than other people's. I was actually on propranolol for 4 years and it helped my tachycardia, dizziness and lightheadedness a lot, but I came off them about 6 months ago because I was worried about developing diabetes. I do wonder if I am experiencing some kind of rebound effect from stopping them, since my POTS symptoms have worsened, and the beta blockers no longer help my lightheadedness. I have been advised by my doctor to go back on them for anxiety, and have taken a couple tablets since, but not for a week or two now. I already take other medications and don't want to pop more pills unless necessary. My doctors do not seem interested, and I am feeling very frustrated and anxious about all these symptoms. Have you been diagnosed with sleep apnea and received any supplemental oxygen? Has anything been done about your VT or did it resolve itself?

Wow, that's very interesting and I'm sorry the doctors wouldn't listen to you, but I'm glad your spo2 levels have since increased. I know a lot of people who describe feeling as if they have to remember to breathe when they're on beta blockers. I was actually talking to a young ER doctor and when I mentioned beta blockers he said he wasn't a fan of them as a first line of treatment because they have a lot of long term side effects especially when used in the long run. I have also heard certain arrhythmias can make it hard for the oximeter to get a decent reading. Are you currently on any other meds and did you find they helped?

Thank you guys. I'm trying to figure that if the nurses weren't too concerned, I should not be either. I wasn't aware that so many factors can affect these oximeter readings. My anxiety is at a high and I just had another panic attack tonight. I will talk to my GP about it as I really need to get a grip on the constant worrying. I'm driving myself nuts.

My POTS symptoms have worsened this month, I've been to the emergency room 4 times in the last two weeks and the doctor ended up ordering another chest CT scan, due to increasing chest pain, dizziness, and some shortness of breath. Thankfully my tests have come back normal so far. However, one weird thing that scared me is that during each ER visit, after an hour or two laying in the ER bed, the oximeter beeped loudly. I'd look at the monitor and see that the oximeter was giving readings of 80's or even the late 70's, then would climb back up to 100 after a few minutes. I asked the nurse about this each time. Two nurses suggested the oximeter was falling off my finger. I'm pretty sure it wasn't? One suggested it was because I was slumped on the bed and that might be affecting my spo2 levels. Hmm. But why did it happen 3 other times too? One even suggested my nails were too long! My hands weren't cold. I suppose it's possible that my fingers weren't getting much perfusion, seeing as I was laying down with my knees raised and so I had my hand sitting vertical on top of my lap. I don't have Reynaud's and my extremity perfusion isn't great. but it's not that bad either, y'know? But it also happened when I was seated and the nurse actually thought there was something wrong with the oximeter. The normal lung CT is reassuring. But I still don't understand why I was getting these pulse oximetry readings, or why they follow this pattern of normal for a couple hours, sudden dip for a couple minutes, then normal again. I have to say these episodes scared me. My fingers weren't blue or anything and I didn't pass out. But I was experiencing dizziness. I feel like no doctor or nurse bothered taking these things into account, maybe because I'm only 25? I don't think I've ever witnessed a reading that low. I'm hoping it really was just some kind of oximeter error, but the similarities about the situation each time are strange, and if the hospital equipment gave inaccurate readings, they wouldn't be using it, right? I'm already anxious and this has really set my anxiety off again!

Thank you guys. I'm going to look into all the meds you recommended. Appreciate it.

I was mostly functional on low dose beta blockers for 4 years, but then I got a virus during the first week of October which seems to have exacerbated my POTS symptoms and I feel like I'm 19 all over again (not in the good way!) I've tried hydrating, taking supplements, salt loading, sugar and carbs are a trigger for me so I need to try to avoid them, but I don't feel much difference. I am saving for an exercise bike to strengthen my leg muscles. I also have a lot of brain fog now and it sets in much earlier in the day. I don't think I have vertigo as the walls are not spinning. But I do have that weird 'walking on a bouncy castle' feeling combined with that 'trapdoor' pre-syncope feeling, which is scary. My doctors are not very POTS literate and I know I will have to be the one to research and suggest things to them. I am interested in trying midodrine as I've heard a lot of people's symptoms improved with this med, but I've also seen some users say they built up a tolerance to it. But at this point, I'm willing to give it a shot. I was wondering what you found helped you guys most with feelings of lightheadedness and presyncope, be it meds, exercises, diet changes, lifestyle changes etc. I can deal with most of my other symptoms, but the lightheadedness always bothers me and heightens my fight or flight response. Which in turn, makes me hyperventilate and therefore more dizzy!

It might be worth trying an elimination diet, a lot of POTS patients are particularly sensitive to sugar and carbs among other things. Eating large meals can exacerbate our symptoms as bloodflow is diverted to the GI tract for digestion, which can increase feelings of lightheadedness. My resting HR goes from 75 to 100 after eating carbs. I know when I eat late at night I can't sleep and feel terrible the next day, particularly if it's high sugar, fatty food, or contains chemicals or MSG. The morning after eating Chinese food I ended up almost passing out as my heart was still racing from all the carbs and artificial colors! I know DeliciouslyElla, a POTS sufferer and clean eating advocate, insists a plant based diet with lots of lean protein and veggies worked for her, combined with recumbent exercise to strengthen leg muscles.

Hmm. Well it's reassuring that all your test results came back normal. The fact it happened halfway through eating is an interesting nuance though. As I've said before, the vagus nerve is often very sensitive in POTS patients, especially if the GI tract is irritated in any way i.e through reflux, spicy food etc. It can trigger palpitations, a drop in blood pressure...some people even faint after heavy coughing fits or straining on the toilet! Sounds like an episode of vasovagal syncope. Have you been ill or experienced a virus recently? Maybe you were doing too much at the time. Do you have a blood pressure cuff at home to take before and after these episodes? Do you suffer from reflux or other digestion issues?

Do you have any kind of GI or reflux issues? The vasovagal nerve is sensitive in many POTS patients and when stimulated it can trigger these palpitations.

I definitely have POTS because my resting HR has been normal but whenever I stood up it jumped to 120+. But ever since this flare-up my HR has been higher both ways. Can I ask when you get a virus or flare-up, does your HR return to normal as soon as it's cleared or do you find your flare-up of symptoms continues for a few weeks after?

Hi, I actually went to the ER on Friday for chest pain. Had a terrible aching squeezing pain in my chest, jaw, shoulders and arms. I'm having a bad pots flare up right now and my tachycardia is worse than before. I've been getting this pain once or twice a day for a few days now. It is very stressful and scary. They ran an ekg and did troponin at the hospital and everything came back okay so I don't know what's causing this. I'm on beta blockers but they don't seem to be doing much. I'm going to ask my cardiologist for a work up. Still haven't been offered a stress test yet which I feel is important 😕 The fact your checks came back okay is reassuring. I also get very bad constant reflux which causes chest pain if not controlled with PPIs. I would try omeprazole for a few days and see if it helps.

Can I ask which thorough tests you mean? My doctor doesn't seem to want to investigate anything. They did my thyroid, kidney function, liver, infection levels, total blood count, troponin etc at the hospital and said everything came back okay. My doctor blames everything on anxiety and an overactive imagination tbh. When I told them I was lightheaded they threw some anti vertigo tablets at me despite the fact my sitting HR was 119 and I stressed to them it was a feeling of faintness NOT spinning or nausea. They wouldn't even properly acknowledge the fact I have POTS. I am lucky they even referred me. I'm hoping the cardiologist will listen to me.

My body has been stressed since this virus. Like I said I've been in a weird POTS hole and am experiencing unpleasant symptoms I haven't had before. I had tachy for days at rest and it's still higher than usual when walking anywhere. And I feel constantly dizzy now even when just sitting up. And now the chest pains. It's all rather new and unsettling. I'm hoping it's just weird POTS stuff because I went to the ER on Thursday and Friday and they couldn't find anything aside from some sinus tachycardia. But because these symptoms are new onset and I haven't worked out what's normal for me yet there's always heightened anxiety and a sense of 'what if'. But thank you for sharing your own experiences because my anxiety is not helping matters.

That sounds similar to mine. It's like an aching squeezing pain. I'm hoping the cardiologist will offer a stress test asap because like yours it worsens when I'm doing too much.

Thank you. It subsided again after laying flat. So now I'm wondering if it could be angina or connected to lack of blood flow after being upright too long? Hmm. I need to ask my doctor about this. I'm definitely thankful my labs came back okay on Friday but to have this pain frequently is rather disconcerting. I am going through a pretty bad POTS flare-up atm and have been getting lots of adrenaline dumps, extra dizziness etc. My anxiety always makes me jump to conclusions. If it gets worse I'll definitely go back to the doctor. I'm trying to relax but these pains make it hard!

I have painful reflux often but the only time I can remember getting non-reflux related chest pain is a few years ago when I was forced to stay upright for hours - much longer than my comfort level. Also another time when I was out walking in the snow. Recently after having a virus my tachycardia and dizziness has worsened. On Friday I had been up for about 2 hours and suddenly got a very tight constrictive type pain in my chest, back shoulders and left arm. It was terrifying if I'm honest and incredibly uncomfortable. It lasted about 45 minutes. I ended up going to the emergency room but by that time it had lessened. They did an EKG and checked my cardiac enzymes. Thankfully everything came back normal and I was told to take paracetamol and propranolol (beta blockers for anxiety) and sent home. On Saturday, I was up for a few hours and I got the pain again. I laid down for about 30 minutes and it subsided. It feels almost like some kind of angina pain. No pain on Sunday or yesterday but tonight it's back. These episodes are very painful and VERY scary. I'm on beta blockers since Sunday but they don't seem to be helping in fact I've heard these can worsen angina or coronary spasms. I have a meeting with a cardiologist but it won't be for a few weeks or even months. Is it possible I'm having some kind of artery spasm? I don't want to take risks. I'm curious if nitro helps these pains but I'm only 25 and on beta blockers so I don't know how likely they will be to try it. Honestly being diagnosed with angina would be scary but it's definitely preferable to HA or something else! I'm so stressed out these days and these chest pains are just terrifying me. Also leaning forward seems to hurt more? I'm pretty freaked out in case they missed something as technically I've still not had an ECG during one of these episodes.

I'm glad my hospital ECG was normal and that it's not showing up all the time but I'm getting these severe presyncope feelings very frequently and I don't think they managed to capture it as the hospital so I'm scared they missed it. If these skipped beats with lightheadedness are the same thing (NSIVCD) then that means I might be getting them multiple times an hour. I'm used to getting singular ectopic beats but never sudden lightheadedness with then so this is freaking me out. I don't understand why I got this prolonged QRS reading or what's causing it. The paramedic said I should maybe take my propranolol again to slow my HR but I've read propranolol can cause prolonged QRS so I don't feel comfortable without a cardiologist's advice? But at the same time I'm exhausted and dizzy from the tachycardia itself and if the tachycardia is causing these prolonged QRS waves like the paramedic suggested then letting it continue might be bad?

Today the palpitations and lightheadedness with skipped beats & palpitations felt really bad. I actually had to call an ambulance. The paramedics did 4 heart tracings. During one I got very dizzy and felt another skipped beat. My HR was about 125 resting when it's usually around 80. When I looked at one of the tracings I noticed it said non-specific intraventricular conduction delay. I asked the paramedic if this was dangerous. He shook his head and said if anything dangerous showed up he would be obligated to take me to hospital. He did not seem that concerned and seemed more worried about sinus tachycardia. The other paramedic said something about my HR being too fast which could be causing this abnormality in my ECG reading. They took me to a&e and the doctor did another resting ECG which they told me was fine. They also checked troponin and said that was fine too and discharged me. On the way home I was still getting these weird sudden presyncope feelings with skipped beats. When I went home I googled this non-specific intraventricular conduction delay and it says it can be dangerous and is associated with pre-syncope, syncope and even cardiac arrest?! Now I'm very worried. Now I'm concerned because it was not captured at the ER even though I got a resting ECG and they hooked me up to the heart monitor for an hour. I wasn't symptomatic while in the er. I've had a normal holter and echo about 5 years ago when I was much less symptomatic. Obviously I need to see a cardiologist and get another holter to investigate this but the waiting list is months and I'm very concerned and anxious about these weird new developments in the meantime. Can anybody explain why I might be getting this and has anyone else had NSIVCD show up on their ECG?

Thank you for your kind words. I took the diazepam about 2 hours ago and I was feeling a little better and slightly more relaxed, but now I seem to be having some kind of hot flush? My face is going bright red and I feel hot. I just talked to the pharmacist and he said to talk to my doctor tomorrow but now I'm scared I'm having an allergic reaction to the diazepam?? He said diazepam allergies are rare but occasionally do happen. Edit: the facial flushing seems to be going down a little. No swelling or itchiness or tightness in throat thankfully. That was a little strange however. Hmm. Think I'll talk to my GP before taking it again. My anxiety is no joke at this point! Can't even take valium without panicking. Lol.

Dr took my blood pressure and listened to my chest. The chest tightness has subsided but I'm getting a slight ache in my left shoulder and arm, which of course is also heightening my anxiety. Dr gave me 2mg diazepam so hopefully I can stop having these panic attacks on top of this illness. I'm a little nervous about taking any kind of new meds but I'm going through so much emotional distress right now, I don't know what the alternative is.

I'm going to see them this afternoon. But they usually just blame everything on anxiety. Obviously anxiety is part of it but this virus is what brought on the anxiety and I keep worrying about potential complications. They said they'd give me some low dose diazepam for now.