cma

That's incredible - can you say specifically how you started and what you are doing now? Yes, yes please share your exersice routine. I would like to hear it as well. I've been exercising for a while on a recumbent bike, but I haven't been able to reduce my heart rate at all. I would like to know what I'm doing wrong, maybe I need to push myself harder.

Hi everyone, I had my deep veins on legs tested with doppler ultrasound and valves are working properly. They are not damaged and blood is not leaking back, so why do I still have blood pooling in my lower legs? I'm wearing compression stockings everyday and was wondering that maybe I'm doing more harm than good. They are helping, but I've noticed that I can't really function without them anymore. I don't really know how to ask this, but can my veins get too lazy to constrict on their own when everyday they are provided with the pressure from the outside. I don't know, if that makes sense at all

I was "fired" by two doctors After taking florinef I discontinued it as well, because there was no difference in my heart rate and the doctor who is supposedly POTS specialist here in Ireland had no interest in seeing me after that. She told me I should start exercising and stop coming to the clinic. At the time I was seeing cardiologist as well for SVT's and she put it in nice words that basically I'm his problem now. On my last appoinment cardiologist told me I didn't have POTS, because I can get up from bed and be vertical without fainting. He checked my heart rate and to him 30*4 is 90, so his conclusion was I'm healthy and don't have POTS. I'm tired at explaining them everything over and over again, and what's the point there is no cure anyway. So, I'm just dealing with this on my own, with no meds, just water, salt, compression socks and exercise.

Kirsti, thank you for sharing your experience! Have you seen any major improvement in your POTS regarding that treatment. I don't know what kind of symptoms you have/had and how severe your POTS is, but I found it amazing listening to those feedbacks given by her patients. One girl said that she has improved 100% That's amazing! Even though I would love to see her, I think that would be impossible, because I live in Ireland. Is she using just biofeedback or something else as well? I think this is interesting that

Hi everyone. Found these testimonial videos about dr. Kyprianou's pots treatment on youtube. Patients are giving amazing testimonials and I was wondering have you heard anything about that. They are talking about the treatment using biofeedback. Has anyone tried that? Winter is here and my symptoms are flaring up again a bit. I guess, it's because I'm siting more on my lovely sofa. It's cold, damp and I don't feel like doing much. I'm so desperate at finding some new ways to help myself. The other day I went to see a cardiologist and he didn't seem interested in my condition at all. He told that during his career he saw about 100 people with POTS, but in his opinion only one really had it, because he couldn't stand for a bit. So, since I can in his opinion I don't have it. I explained to him that my heart rate still goes up more than 30bpm changing my position from supine to standing. He decided to test it. My supine heart rate was 87bpm and standing was 90bpm according to him. Poor guy has multiplied 30x4 and got 90! Sorry, about this rambling, just had to get it out of my system. There is no hope to get proper testing and treatment done here in Ireland. Please let me know, if any of you thinks otherwise. So anyway back to the Kyprianou's treatment. Would love to hear what you guys think about that. Is it possible to feel better using biofeedback techniques?

Wow, this is exactly my situation. I don't have kids, so it's a little bit easier for me, but I have the same anxiety as you are describing. I haven't been anywhere alone in last 3.5 years. I go everywhere with my better half and I feel very uncomfortable when he is not around. I am totally fine at home as well and I'm finding it difficult to even get the rubbish out and the bin is just around the corner of our apartment building. Shops are especially hard for me, because all the lighting, colors, noise etc. stimulates me to a point when all I want to do is get out of there as soon as possible. I leave to wait in the car as well, if there are long cues at the checkout, but it upsets me a lot, because while at home I feel almost normal, but as soon as go out I'm reminded that I still am a long way from feeling normal. I don't know which type of POTS I have, but I'm suspecting it's hyper. I don't want to take any meds as well, but I am taking supplements. I find that magnesium gives me a relief and I'm feeling more at ease when taking it. B complex is also good for anxiety, but I don't feel such a dramatic difference when taking it as with magnesium. I hope you'll be able to get out of dreadful circle and will share your experience how you did it. My GP suggested psychologist, who specializes in cognitive behavioral therapy, but since I'm not able to work we can't afford it.

Hello everyone. I thought it would be interesting to know what kind of exercises do you perform. It's been a long 3.5 years for me dealing with POTS. I've started exercising about 6 months ago and although I've improved a lot I still don't feel normal like my old self. I am wondering, if I am doing not enough or too much. My exercise routine consists of 3-4 days or cardio on recumbent bike of 35min at my heart rate at about 130bpm 3 days of resistant training for 30-40min. I do leg lifts, bicep curls, squats, lunges and strengthen my abs with various exercises. Could anyone give any advice, recommendations etc. I'd really appreciate it.

Hello everyone! I was diagnosed with POTS over 1.5 years ago. Even though I feel 70% back to normal I have this annoying blood pooling in my legs. My calf muscles feel achy, legs heavy and they have patches of the nicest colors of the rainbow (red, purplish blue) and white on them. I was wondering how many of you have the same problem? I don't know, if I have pooling in my belly, I don't feel anything and the color of the skin is normal. I have cold hands most of the time, but again they don't feel achy or have discoloration on them. I exercise and even though my leg muscles could be stronger I doubt it, if exercise will stop this problem. I couldn't find any solutions online and any feedback would be greatly appreciated. The summer is coming and it's going to be very embarrassing to walk with purplish/reddish legs.

Thanks persephone for your post. I am feeling calmer and calmer with every positive post . And I understand that even though we have the same condition, our bodies are different and react differently to medical intervention. I hope everything will go Ok, if I'll decide to do it. Although I am not sure I have other choice at the moment

Hi there, I just got a rowing machine and I have to say I absolutely love, love, love it! I am not a big fan of treadmills, never was and although I was always looking for excuses to do aerobic training whenever I did it my choice was elliptical machine. I tried recumbent bikes in the past at the gym and I really liked it, but since my wallet is too thin for a good recumbent bike, I decided to go with a rowing machine. I bought used one, but in good condition and started with 5min training intervals. My daily goal is 20-30 min on it. At the moment I am feeling great and will take it from here.

Thank you so much for sharing your stories !!! It's still so scary, but it's comforting at the same time to know that you don't regret doing it. SVT's are not fun at all, but I am still wondering maybe there is a correlation with POTS, because I never had them before getting sick. So there is still this voice in my head, that maybe doctors are missing something, and EP study with possible ablation might make it worse. So I am still confused, but don't really know where else to go, who else to see. lieze it's so interesting that ablation reduced your resting heart rate. Cardiologist that I saw told me, that this ablation wouldn't affect my resting heart rate, unless they damaged main circle of the heart, then I might get bradycardia . angela , I have no idea if they will be looking for sinus node or not. But thank you for this information, because now I know that I have to figure this out So, thanks again for your posts it was so important for me to hear that from ppl who had it done and don't regret it.

I am on cardicor 2.5mg, active ingredient is bisoprolol. I live in Europe and don't know if it's available in US. I started at 1.25mg was doing quiet great, but had a few episodes of SVT, so it was increased to 2.5mg. I don't have any side effects and have been taking it for a year. I can't imagine my life without it, my heart rate would be about 110bpm without it at rest and now it's 70 to 85 bpm. It doesn't lower my blood pressure too much, but I am also taking Florinef 0.1mg with lots of water and salt. Hope this helps.

Hello everyone. I haven't been here for a while. Nothing much happened since the last time though. I am doing pretty good on most days, have some down ones, but can't complain much. Tiredness is not my main problem as for many of you. SVT is. I had 4 episodes in the last 2 years of very fast heart beat 180-190bpm and had to go to the ER, because couldn't stop it myself. I was given adenosine. Not a fun drug at all. I was referred to cardiologist in hope that he will know why I am having those episodes of SVT. So I saw him a week ago and all he suggested was EP study. He told me he wasn't very knowledgeable about POTS and that ablation would do nothing for my POTS, but would solve SVT problem. I have to tell I am scared to have an EP study. The thought that they'll will try to provoke fast heart beat scares the crap out of me, but it seems that I don't have any other choice. I would like to start a family soon and what if I will get that dreaded SVT during pregnancy, I am not even sure if adenosine is administered to pregnant woman. I would like you to share your stories. Is EP study painful? Many of you say that, if you knew you had POTS you wouldn't have done an ablation, but if I understand correctly ablations are done just for abnormal rhythm where beta blockers don't help. I am diagnosed I have POTS, am taking beta blockers, florinef and licorice root. I would really appreciate any info you could give.

Thank you all so much for taking the time to tell your experiences! Even though I wouldn't wish this to anyone it's comforting to know that some of you have experienced this. I've tried the syringe and massaging the neck it didn't help for me. I didn't try pulling up my knees to the chest or drinking cold water so if it will hit me again this is what I will try. It is very scary and mine is like yours tilly it just comes out of the blue. I don't even have the feeling that something is wrong all of the times when it happened I was fine and relaxed at home, my heart wasn't beating high or anything and just woosh it starts beating like crazy. What is interesting to me that it is not the same feeling when my heart beast fast lets say after climbing up the stares and when the SVT hits. In svt it is so hard it seems that my heart is banging against my chest to let it out. I don't know about electrolytes I got them checked right away in the ER and I was told they were fine. I am suspecting that my bp might have been low before the episode of svt, because I am taking beta blockers, but when svt hits my bp shoots up as well. My mouth dries up immediately also. I might try reintroducing caffeine into my diet again. I've eliminated it in hope not to aggravate my heart rate. I don't have any other symptoms that most of you guys experience like fatigue and on some extent I am doubting that I have POTS ( even though my heart rate went up during the TTT from 105 to 140). Maybe I have something wrong with my heart instead. I am afraid to fly, because I haven't been able to control it myself yet. cma

HI, I was just wondering how many of you have episodes of supraventricular tachycardia? Yesterday was the fourth time that I ended up in the ER with SVT which was stopped only with an injection of adenosine. My heart starts beating fast 160+bpm and doesn't slow down on it's own. I am taking beta blockers every day and I was prescribed fludro as well. I don't drink, don't smoke, don't use caffeine, drink 3 litres of water before 3pm do everything in hope, that I won't experience the terrible SVT's episode, but...

Yes and I was always suspecting that anesthesia which I was given during wisdom teeth extraction opened the gates for my POTS symptoms. After that day my life has changed forever.

I started fludro a week ago 0.1mg daily. Since then I've been getting these digestive cramps. It seems that spasms are coming from the stomach up to the chest area. No acid reflux only cramps. I've also increased water and salt intake. Maybe it's from the salt. Has anyone else experienced something similar. I called my doctor and he told me that this is not one of the side effect, so I don't know maybe it was just a coincidence that I got stomach problems at the same time as I started fludrocortisol.

Yes it's the same for me. Left ear is affected, but it's not that I can't hear with it or that I hear with the right one better, but it's like something opens up in it and I can hear my heart beat. It is so annoying. I need to close my nose with fingers and try to breath in through it. It helps for sometime.

HI, I was officially diagnosed yesterday. My heart rate went from 106 to 140 bpm on the TT. My blood pressure drops slightly, but then comes up again. So I don't faint. They tried to make me faint on the TT, but I didn't just felt so uncomfortable there for those 30 min. Anyways i was prescribed florinef 0.1mg in the addition to my beta blockers. I am starting it today and see how that goes. I live in Ireland no Mayo clinic here and I doubt I will find any good specialists with real POTS experience. After my diagnosis the doctor tried to give me hope saying that it is totally treatable and that this is just a phase in my life. I thought about all the ppl on this forum who have been sick for a very long time, who have good specialists working with them, but still can't manage a normal life.

Hi, what is the biofeedback breathing? I was trying to find some info online, but couldn't. I am thinking maybe I also have problems with acidity. I am burping ( excuse me ) all the time and three times ended up in the ER with supra ventricular tachycardia. I am happy for you that you are doing better and thank you for sharing your experience and giving hope to every one else.

Hello everyone. I have to admit it's been a year since I last logged and posted something on to this website. I was doing pretty good for almost a year. Heart rate still high without medication, but a lose dose of beta blockers really helps me. On the 19th of october I had a traumatic experience of SVT. I don't know how many of you have it. I never faint I just have a high heart rate and occasionally a sudden SVT. One second my heart rate is normal ( with a help of beta blockers of course ) the next it is raising to 200 bpm. Nothing helps - blowing in to the syringe, maneuver of the vein that's on the neck, nothing. I had to call an ambulance was taken to the ER and given intravenously adenosine, I believe it's called so, but I am not sure. The drug gives you a terrible feeling all over the body, seems that the muscles are expanding enormously. It happened again yesterday. The funny thing is that both times before the tachycardia I burped and I was thinking if this is what causes it or was it just a coincidence. I would also like to know if anyone of you have the episodes of SVT or just orthostatic tachycardia? Thank you so much for taking your time to read this. P.S. sorry for the mistakes, english is my second language.

Hi all, So for me I am feeling my worst in the morning. I take beta bloker in the morning at 7.30am and the go back to sleep for another hour or so. I usually stay in bed until 9.30am. Then take a shower and have breakfast and my heart starts speeding up. I don't understand why is this that once I am out of bed it isn't that bad, but at about 11am every day it starts speeding up. It is so weird, because beta blockers sould be working already. And then towards the end of the day everything slows down and in the evening my heart rate is normal. I take only a tiny dose of bisoprolol 1.25mg in the morning and then haft that dose in the afternoon. Any thoughts on this experience? cma

Yesterday I was reading about different herbs and horse chestnut got my attention. It says that : " Numerous double blind, placebo-controlled human studies have shown horse chestnut to be effective in the alleviation of symptoms of chronic venous insufficiency and varicose veins. Results have demonstrated that supplementation with horse chestnut has helped to relieve the associated swelling, itching and aching that oftentimes accompanies these conditions. It also seems to improve the tone of the veins by enhancing the ability of the veins to contract and pump blood back to the heart." I have blood pooling in my legs which cause the discoloration and heavy feeling with itchiness and coldness. Has anyone tried horse chestnut?

Yes, count me in. Actually this was my first symptom and I thought that it was a very bad panic attack, but it never went away. Since then I always felt very weird in stores and I haven't been there alone for more than a year. I don't go anywhere alone, because anxiety adds up to orthostatic tachycardia and I feel like passing out, but I never did, my eyes become watery and I get tightness in my neck. I still think that anxiety is playing a major role in this, because stores are the worst place for me to be in while hospitals make me more relaxed ( I know weird ) and I don't have such noticeable feeling of dizziness in them.

tearose thank you for your reply, this time my left foot toe is affected more. It is very weird, because mostly second toes are affected and I don't feel anything unusual on other toes. They are red, swollen and somewhat painful when I press . Nothing to the extreme, but if I bend my toes toward the sole it is difficult and I can feel it when I walk. This has happened before and it goes away in a few days. Still haven't figured out what is causing this to happen. Probably there is nothing I should be too worried about, but still wanted to know if anything like that happens to any of you. I am using compression socks everyday, but they are the lightest compression the ones for traveling, but still they are helpfull for me. I was wondering maybe this is because my feet are always cold and the joints get inflamed from the cold, but probably I would get all the toes involved then.