My POTS treatment story: Ivabradine ♥
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- Опубликовано: 7 сен 2024
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Hi there! So this is my first health-oriented video. I'm going to take the journey backwards from where I am now with my condition to where I was in the beginning. I am starting with this video on the medication that I have been taking for the past few months. I hope you enjoy watching it!
For more info check out my blog post on Ivabradine at liveyourselfbet....
If you're going through the trials and tribulations of POTS, or are still waiting for a diagnosis, I hope that this video helps you.
You can also find me at:
liveyourselfbet...
/ enterflora
/ enterflora
Please feel free to leave me a comment or get in touch if you would like to talk more about the subject of this video. Thanks for watching and take care xx
Ivrabadine has seriously changed my life. I’m 21 and have struggled with pots since I was 14. I struggled with dizziness, passing out, and really bad anxiety because my resting heart rate was around 130 bmp. When I was 16 I spent a month at the Mayo Clinic to learn about the lifestyle changes that are associated in helping POTS. I tried to follow those but it was hard to make those changes when I kept blacking out and constantly felt sick and tired because my heart was running so fast. Finally, I saw a neurologist who decided ivrabadine would help me and it seriously was life changing. I can run for the first time in years, I’m able to keep up with my friends and not feel constantly tired. I’m glad it has worked for you as well!
I take 5mg twice a day and it has brought my heart rate down to about 80 from 135. I completely get the feeling that when you got on this medication you can actually see a future because pots before pots was so debilitating and made me severely depressed. I have a lot more energy and can also do a ton more in a day!
What is your bp and hr?
I’m currently having surges of adrenaline dumps and my doctor just proscribed this. Does this at all help with the release of the adrenaline dumps you can get with pots or no it just keeps the hr low.
@@maureenjacob3902 Hey there! ❤️ May I ask how long time it took for you to notice an effect from Ivabradine, was it days/weeks? 🙏 Thank you in advance!
@@eltonmaragona9014 It has been a while but I think the changes were subtle at first but after about a month I noticed it was really helping
Today is September 19, 2019 and I just started Ivabradine. Just off my first dosage I noticed the difference right away. My heart rate is always really high even during resting. Average 95 bpm. I'm on Coreg which is a beta blocker and it seemed to do its job for a long time but this past year my heart rate averages 103 during the day. I loved feeling my heart rate be 67 bpm when I slept. It was a little scary cause it's never that low. I hope that my future with this medication is as good as yours. I want this med to work. So tired of feeling like I've ran a marathon everyday :(
Thanks again for this lovely video! ♡♡
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
How are your results now a few years later?
Thanks for this great video! I've heard a lot of great things about Ivabradine!
My EDS-related POTS is being managed by Pyridostigmine, since it also treats gastroparesis and IBS-C, and I take either Guanfacine or Clonidine before bed to further treat my POTS while also preventing migraines and treating my insomnia and anxiety-like issues. It's great to know that so many options are available for treating POTS!
I started this on Sunday and already love that I have no side effects!! Every table LG I’ve ever taken has given me the worst side effects, some where life threatening. But this one hasn’t given me any. My hand and feet feel warmer I feel like I’ve got better circulation! It’s incredible. I’ve got an ecg next week to make sure everything is working well. But so far so good, my heart rate hasn’t changed dramatically yet but I’m not feeling awful!
Jazzie CLB are you still on it how are you doing
Thank you for sharing your experience. I have POTS that and have not responded well to beta blockers and my doctor just prescribed Ivabradine (5mg/day) and I’ve been on it for just a couple of days now. Your story is in inspiring and has given me renewed hope in finding relief. I also have EDS, hypermobility type, and like you, the symptoms of POTS have been much more debilitating than the pain of EDS. I know this video is a few years old, but I would love to hear and update on how you’re doing and where you are at in your life now. I hope you have been able to make plans and create goals and reach them successfully!! Best wishes to you, and thank you again for sharing. ♥️
@@eltonmaragona9014 Hi! It only took a few days to get relief and I was back to using an elliptical within a couple of weeks, starting gradually. I hope this helps, but if you have more questions feels free to let me know!
@@poppybridgeport306 Poppy are you still taking the ivabradine a year down the line and is your POTS resolving/improving?
Hi Poppy are y fine?
I hope to try this med. It is now available in the US. My doctor is looking to see if my insurance will cover it. Thanks for this video!
Thank you for sharing your story! Glad to know this works for you. I am a new POTsie and trying to figure out a treatment plan.
I also have P.O.T.S. And I am only 13 I will be 14 in a few days. And it's been really hard. But this video has helped me a lot. Thanks!
Try to limit stress! Teenage years can be tough.
@@fdimichele Stress has nothing to do with POTS. For twenty years doctors have been telling people with high heart rates when they stand to reduce stress and as a result the POTS diagnosis has been missed and the patients do not recover. This is not an illness that is in the mind. It is a real, serious, systemic illness and psychiatrists and psychologists are the wrong people to treat this illness.
Thank you so much for posting your health issues and experience with Ivabradine. I was diagnosed with IST and POTS in 2012 and went through hell before being given that diagnosis. My cardiologist has me on Metoprolol (beta blocker) and Digoxin (anti arrhythmic) combo to better control my symptoms. Unfortunately it is not as well controlled as I would like and still deal with breathlessness, tachycardia and low blood pressure, lightheadedness, nausea, headaches and blood pooling in my legs. I was also told that because of the combo of meds that a pregnancy would be risky to not only myself but to the fetus due to the possibility of abnormalities to the fetus because of the drugs that I’m on. I am currently not able to work because of the IST and POTS and my cardiologist has mentioned Ivabradine and suggested that I be part of a drug trial for Ivabradine when available in Canada.
How is ur pots now?
My middle name is “side effect”! So 2.5 mg twice a day? I will definitely try that. I also take midodrine and florinef. Thank you! 💜☮️
Hi! I'm starting ivabradine today. I'll start with a single dose of 2.5. I'm very nervous because my doctor didn't know about it so she sent me to another doctor who works as a cardiologist, and that doctor said a big NO for that medicine. It was a loooong arguing time, but she refused to send it to me, and was very determinate with her statement.
In my country ivabradine you can buy it without prescription so I did it and that's what is making nervous. I hope it works 😔😔😔😔
What country do you live in?
Very good video about ivabradine and POTS. It is so similar to my story, I take a half dose of ivabradine and it just changed my life. My only pain is the question of a baby... I am not compatible with beta blockers and it is not an option to stop this medicine... it makes a so huge difference...
Talk to your cardiologist about it, but I was told that taking ivabradine during pregnancy would depend on the individual. It's not known to be teratogenic (unlike roaccutane for example). But it's a new drug so it's also not known how safe it is to take during pregnancy. If taking ivabradine stops you from fainting, your cardiologist may recommend that you continue to take it as the risk of damaging the baby by fainting may be higher than the uncertainty about taking ivabradine. It depends on why you need it. HTH
In animal experiments teratogen effect was unfortunately described, my medicine packing in Hungary warns to not to be pregnant 3 different ways. My cardiologists first request was to take oral contraceptive and immadiately stop the medicine if I become pregnant. I spoke with 2 other cardiologists about this and they both said that I should stop ivabradine if I would like to have a child. Maybe if we will have more experience, it will be change, but now, I can not take ivabradine during pregnancy in Hungary, my doctors will not prescribe it to me.
Laura Nagy I am in a similar situation. Ivabradine has helped me so much but I'm scared to stop taking it to have a baby.
What is your hr and bp?
How is ur pots
Thank you so much for sharing! I’m 30 and was initially misdiagnosed with inappropriate sinus tachycardia before being diagnosed with supraventricular tachycardia and I underwent a cardiac ablation a month ago. Unfortunately I’m still experiencing tachycardia (about 110bpm in the morning) so my electrophysiologist prescribed Ivabradine (Corlanor). I just started taking a low dose of it (2.5mg twice a day) and haven’t noticed a major difference so I will start taking a full 5mg pill twice a day soon. I normally have really low bp so I was afraid to take a full dose and my docs weren’t too keen on me taking beta blockers. I, too, seem to experience all the side effects from prescription meds so I’m very happy to hear that you haven’t had anything severe. Just wanted to share my story in case anyone had a similar experience 😊
Thanks for the video! Loved your description of describing the different kind of vertigo from pots vs low HR.. I discovered that caffeine plus adderall plus propranolol caused a HR in the 40s.. such a weird feeling! It was very movement oriented..
Hi. Im under King's and pruh local. I have m e and serious side effects from meds. Going to trial this. Thank you for video x I am scared to start this has helped x
Thank you so much for this video! How long did it take you to feel like you could return to exercise? Also, what diet did you change to? Thanks again:)
I love your accent. So cute. Glad to know there is a med out there that helps so much. I am taking a beta blocker and calcium channel blocker and they only seem to help some. Glad to know there are other options. I have high blood pressure so at least I don’t have to worry about the low bp part.
Hey hun. really happy to hear you are having good results.
my gp has just referred me to a local cardiologist because of suspected pots...I wanted to see a pots doctor but she said firstly she wanted me to goto local cardiology service. I'm scared of two things, that they won't know about pots and also that they will put me on a crappy beta blocker. my main symptoms are extreme exhaustion after physical activity brain fog and wobbling. think I had eds too x
Hello, thank you for sharing your story! I just started Ivabradine yesterday, and this video was very reassuring for me. I have Chiari Malformation, Fibromyalgia, and IST. Obviously all bodies are different, but I hope to have some success with this prescription as well! :)
Hey there! ❤️ May I ask how long time it took for you to notice an effect from Ivabradine, was it days/weeks? 🙏 Thank you in advance!
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
@@eltonmaragona9014 I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
Found this really helpful as I’ve just been put on ivabradine for newly diagnosed pots... however I was just told to collect the prescription from my GP surgery as I’m not seeing cardiologist for another 8 weeks. Had no knowledge of this drug and no idea what to expect.
Been put on 5mg twice a day and been taking it for a few days. Only side effect so far is headaches. No changes to my heart rate but I’m keeping a close eye on it as my resting heart rate is usually pretty low (in the 40-50s) so I’m concerned that any medication to lower my standing heart rate (approx 150-180) will push my resting heart rate dangerously low.
All that said, I’ve heard great things about it and I’ve been bedridden for over a year due to severe ME, Fibro and POTS. Hoping if I can get my POTS under control that it’ll help to improve the rest of my conditions as my body won’t be fighting so hard just to be upright.
Hello! I know it's been years since this comment of yours, but I would appreciate an update as I too just got prescribed this medication and have your exact same fears. My resting heart rate is between 40s and 50s, so I am curious to find out how it all worked out for you? Thank you and I hope you are doing much better.
@@princessmari5063 how did you go?? Same concerns here lol
@@NatalieJaide Girl, this medication has been sitting in my cabinet for months bc I am chicken lol. I am gathering up the bravery to try it soon though bc I am tired of being tired. What is you resting heart rate?
@@princessmari5063 you could take half the dose you've been prescribed, or just stop it immediately if you notice any problematic symptoms. It's not going to make you drop dead or anything. If your heart rate gets low you'll get familiar side effects and know it's related to the medication and just stop taking it. It's nothing to stress out about.
Just an FYI: Taking Mestinon 60 MG which lowers heart rate, but only helps when I exercise to keep it down. Its like it makes it a bit harder for the heart rate to react to exercise with POTS.
Hi I also have severe dizziness I was given ivabradine but later I stopped...I m facing dizziness too much now a days
Thanks for posting this! I use midodrine and I find it helps a lot but my POTS is definitely not under control (although I could up the dose if I had a doctor approve it as I'm only at 7.5 mg TID). I also use florinef/fludrocortisone but I don't find it helps me. I have reservations about beta blockers because it would probably mess up my blood pressure even more, but I'm curious about ivabradine. Hearing you say that it helped your heart beat not only slower but more effectively is exactly what I feel I need. Mine just goes a mile a minute but feels like it's doing so in vain. My pulse pressure is so narrow. I'll ask my cardiologist about it when I see him in December and hopefully he's on board to give it a try or has a better idea. Assuming it's available in Canada... I feel like it is now but I'm not sure. Light sensitivity might be an issue for me, but I don't really tend to get side effects with medication. Glad it's helped you so much! Thanks again for sharing your review.
Dd u take beta blocker along with midodrine or u take the midodrine alone?
GRACE GEMINO I’ve never been on a beta blocker. I naturally have really low BP so I think a bb would only make it worse.
Hi. How are you now? Are you still feeling good on Ivabradine? I have POTS, EDS, ME and neuropathy. My Autonomic dysfunction is getting worse and I was taken off a beta-blocker and I am currently taking Ivabradine, but getting very unwell with it. I note your dosage is lower than mine, so I may reduce mine a little to see if I can tolerate it better. Thanks for the video as it was very interesting. My cardiologist said I couldn't have POTS as I had tachycardia, which I know is untrue. I hope your good health continues. Did you do a lifestyle video?
TCampbell36 are you still on it how are you doing with it? I have pots and me
It was a little confusing can you verify that you where taking 5 MG twice a day ? And sometimes you only take Only take 5 Mg once a day.
Thanks so much for this. Have post Covid POTS and starting with Ivabradine tomorrow. Hope it goes well 🙏 nervous!
How did it go? (My comment made March 2021)
I have post covid POTS as well.What was your outcome?
How is ur pots
You feel better now?
@@MrGeri95 much better thanks to all of you who asked. Not taking any meds anymore, only need to take one now and again if I get a viral or sick it can flare up for a few days. I've also been doing HBOT and taking regular vit c, glutathione and saline infusions which have seemed to also help. Hope you all recover soon 🙏
Hi, i am terrified to take ivabradine but my pots is really getting me down. My main symptom is a fast heart rate everytime i stand. Ive been bed bound for 5 weeks. Please someone tell me it gets better if you take it? Im so worried of it dropping my heart rate too low. Sometimes at night when i lay down its 59 but in the day i stand up and its 150+ Without fail. Also, did it cause any breathing problems for anyone thats one of my biggest worries too. I just want to feel better. Help
Why do you say you are terrified? Is it a bad drug?
How r u now
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now.
So happy for you that ivabradine works great for you, i have IST inappropiate sinus tachicardi syndrome my sinus node the natural peacemaker is a problem, so i have fast heart beats often and sometimes when i wake up early in the morning with heavy dizzyness i hope ivabradine will work for me low dosis i will talk with my doctor to give me this medicine and see if it works for me, i am also very sensitive for sids effects. I really like your positive energy!!!!
I have the same exact problem, did you try Ivabradine?
How is ur ist
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
@@sorellefraser888that feeling that you mention i have it one time i was dehydrated. Are you ok now?
@@Jeronimocast hi I have just been diagnosed with a second heart arrhythmia superventricular eptopics. I'm currently taking 40mg nadadol to manage the IST but struggling with the eptopics everyday hope you are well
Love this video! I started today 2.5 mg,- 2x a day. I got viral pots from covid couldn't leave my bed for 2 weeks. Praying this gives me hope!
Twoopposite how r u now
@@rameshlumb4003 better!!
Thank you for sharing this.
Hi. Do you think the vertigo is because of the medicines. I have been having this also on my beta blocker, when my heart rate fell tp 60-70 standing.
I just found this video and looked up ivabradine. It is used for sinus tachycardia.
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
Thanks it's help me alot I go pot to
I started that 3 days ago,5mg twice,it didnt decrease hr at all.Still high
Hi Francesa, have you found that it helps with Nausea as well, or were you experiencing nausea from the POTS?
Do you know the requirements for trying this drug?
I am trying Naltrexone now which is "off label", but only helps a bit with inflammation not all the other symptoms having to do with the heart rate and bp.
I’m really struggling with my pots. I’m under Dr Gall also. At the moment I’m on midodrine but it’s not really helping much. Is it possible to trial Ivabradine if your resting heart rate isn’t very high? I have bad tremors in my hands and legs?
Need some hope.
How can you have POTS if your HR is not high? What symptoms do you get? What's your BP when you stand?
You have to take it twice a day.....5mg twice for fast heartbeat
Taking ivabradine 5mg for suspected IST/POTS just taken my first pill today after an episode of shaking and heart rate increase... I'm a bit nervous. Are you still taking it? And are you alive lol!
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
@@sorellefraser888 hey sorry that you're going through that. You seem quite panicked which is natural given what's happened but remember stress only makes heart symptoms worse. I came off ivabradine quite quickly as it made my heartbeat feel artificially slow and not natural. Docs put me on nebivolol which is quite a good beta blocker without the nasty side effects. I'd suggest you can speak to your doctor about it?
@@Amaadification thanks for your message. My hearts doing what feels like dodgy beats then it's as if my heart lunges to my upper abdoimin did you ever experience anything like that?
Hi, your video is very interesting :-)
I started Ivabradine 10 days ago (5mg/day), and i can see my heart is slower, i can stay up longer, etc... but somedays it's like the medication isn't working and my heart beat is back to what it was before. Did you experiment the same thing ? Maybe it's because i don't take it since a long time ?
I'll start exercise too, but the fact that i'm overweight and deconditionned is an other difficulty :(
I hope i'll be back to normal one day...
IMHO Double your dose. But don't take it all at the same time.
Hey there! ❤️ May I ask how long time it took for you to notice an effect from Ivabradine, was it days/weeks? 🙏 Thank you in advance!
@@eltonmaragona9014 Ivabradine works within the first hour and fully after a very few days.
Thanks alot for this beneficial video.....i am very happy you got better.... :)
Thanks, I'm happy you enjoyed it :)
Hi - thanks very much for this video. My sister has just started Ivabradine but is feeling very unwell with it. Are you you feeling now? I hope it has continued to help
I have pots. I was just diagnosed a week ago and we do not have iverbadine in the states. My doctor put me on florinef but it caused my kidneys and back to cramp so he put me on a low dose beta blocker 25 mg twice a day lopressor I have not started it yet because I am leary about it
It's a shame ivabradine isn't available :(
I hope lopressor helps. It can be scary to start a new medication but if it doesn't agree with you then you can stop taking it with your doctor's advice.
Hi.. I went to one of my cardiologists bc I too think I have POTS I was in the hospital 4 times last month, I was finally given metoprolol which helps lower my heart rate but it's not a cure. I saw my other cardiologists a week ago & asked her about Ivabradine the other name for it is Corlanor she gave me 5mg twice a day I haven't taken it yet I'm just scared bc I always get side effects.
I am on it now. It's called Corlanor and it's amazing.
@@MelanieGVF how are u today? Is corlanor available in your place?
Well why dont you go to Europe and get a lot of it and come back? People do that.
thanks for this
Hi, do you mind me asking.. now that you have stopped ivabradine (seen that you mentioned you had on your blog post), have your symptoms such as tinnitus etc returned?
Occasionally it comes back, like if I overwork, travel or get a virus, but it is not as severe and constant. I try to keep hydrated and active to keep flare ups brief.
That's great. Do you mind me asking how long into taking ivabradine did you notice your symptoms start to improve/go? Such as the tinnitus.. this is one of my symptoms too
I'm so sorry to double message but just messaging incase you haven't seen my message (also I'm not ashamed to say I'm quite desperate for help).. I'm 6 days into ivabradine now and not noticed any dramatic changes maybe slight ones.. just wanted to know how long into taking it did you notice the changes that you've mentioned?
@@JessicaNeedle It took several weeks/months to see big improvements, alongside lifestyle changes (lots of fluids, compression socks, dietary changes, gradually increasing activity levels). Tinnitus took longer, around a year. Tinnitus retraining and using white noise to sleep helped a lot. Perhaps your dr can help set expectations for your recovery. I hope you feel better soon.
When did your tinnitus stop after ending betablocker ?
may I know the name of biosprolol was it concor 1.25
Ok so I have chiari malformation and syringomyelia but I think I might have pots. I feel like my heart beat feels "weird" sometimes and when I stand up or sit up I get dizzy my heart beats harder and my head is like dizzy if that makes since like my vision gets weird... idk how to explain it... but I don't pass out. Any advice?
I was just Diagnosed with pots After an ablation. I just picked up the drug you're talking about wow it is so expensive. My blood pressure is really low after I eat but it does jump up to 130's or higher. Do people with pots always HAVE low blood pressure. Mine is up-and-down.
I'm sorry to hear that you are having to pay so much for the medication. I'm fortunate that prescriptions are affordable where I live.
My BP is also normal most of the time. Not everyone with POTS has BP issues as well.
@DebbieSparrow how long after your ablation did you develop POTS?
@daphnebrooke-fv3dw the moment vi woke up from surgery Something was really wrong. I thought I was dying.
@@DebbieSparrow that’s so terrifying! I had an ablation in Oct last year and pots hit in March this year but my functional doctor says it’s from a toxic mold exposure. I’m just trying to rule it out as a possibility
@daphnebrooke-fv3dw I'm so sorry, do you have the Pots under control. I've learned so much about it. Propanaol and hydroxyzine are life savings. Compression pants and electrolyte drinks like IV on amazon help tremendously. Plus, drinking pickle juice.
i measured my standing heart rate from 66 resting rate to 108 in 10 seconds. crazy
Andrew Barrett tilt table test are kind of an archaic way of testing and aren't necessary anymore. If your phone has a pulse tester I know most Samsungs do and will store the information in your phone make it a point to take a record of your resting and then you're standing. If you happen to be jumping 30 to 40 points upon standing you most likely have pots. Also check your blood pressure from sitting to standing and write that down so they have everything. One of the number one things I've learned is that doctors have no clue of what to do with us however there are treatment centers one is right in Texas and that just is like she says in her other video to take in a lot of fluids she was told 3 to 4 liters which is basically a gallon of water a day. Get lots of sodium. You can buy electrolytes and drop file format on Amazon so definitely look into doing that. Gatorade is easier to get but then you're dealing with all the sugar and chemicals. She mentioned in her other video that she was recommended to go on a low GI diet and I will say that the low glycemic index I think is smart because whenever I have too much sugar it seems to make my tachycardia act up. Making sure you get enough sleep is also super important. I'm definitely list symptomatic when I do and my electrophysiologist Evon recommended that I have a sleep study.
@@bridgetterenee3515may i know what electrolytes we can buy in amazon for pots?
Same here. In rest 64 standing up 118
I am waiting to trial ivabradine under he same consultant - may I ask what happens on the trial day, and how long you were there for?
Cant wait for it - my hr gets as high as 191 just pottering around the house - I am exhausted and dizzy constantly, and my life is on hold (I have EDS as well) - The cardiologist is the first person that took anything seriously - I am really hoping it will sort my hr enough to manage my day to day living again! Your video was great - thanks xx
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
How do you feel now a day with your treatment, is it currently the same?
Did you say you're on 2.5mg twice daily? :)
Are you still on this medicine how are you now please reply I need help and want to try it
Hi, no I stopped taking ivabradine about 3 years ago and have not needed it since. I took it for over a year alongside making lifestyle changes and saw a huge improvement in symptoms during that time. Check my most recent video for the update
Did u had sinus tachycardia?
What is the other condition you have?
did you have breathing problems with your Pots? I am about to try it in America it was finally fda approved. are still on it? how much mg did you end up needing?
+guitarlearningtoplay I had quite significant breathing issues so had respiratory physio, which was really helpful. I stopped taking ivabradine in February 2015, but it worked amazingly while I needed it. I started on 5mg/day and reduced it to 2.5mg/day after a few months, but everyone is different.
+Francesca I am not sure I understand. You have breathing problems before Invabradine or after you started taking it? Not sure what phisio means , is that like physical therapy? What did you take after you stopped and has anything new helped? I am disabled already 4 years from this
guitarlearningtoplay I had breathing problems before taking ivabradine. Respiratory physiotherapy is like physical therapy but specifically for breathing. It was very helpful! I am not taking any medication currently. It has taken a long time to see an improvement but a plant-based diet and regular exercise has helped me the most. I hope that you find something the works for you :)
A raw vegan diet and inhaled steroids helped me back in 2006. I had a remission for 4.5 years, then I moved 40 minutes away and wham it came back and slowly kept getting worse this time all that doesn't help. But I also have Sjogren's Syndrome, autonomic neuropathy. I hope this helps, I also started IVIG 3 months ago but thats been rough
That sounds really tough. Sometimes stress can make it worse - I know it does for me - especially if you also have an autoimmune disease. I think in the UK IVIG is only used for specific autoimmune conditions, but I hope it helps you. Exercise is really key as well but we all start at different levels - at first a walk around my garden was exercise!
Can I ask what you’re resting Hr was before you started taking the medicine my resting hr laying is between 56-72 and I was told to take half of 2 mg of this but I’m just fearful it will indeed drop my HR too low. Also did it help with any aid in getting rid of any of the adrenaline rushes. Thanks so much. Just trying to find a good regimen for my body or if I want to try to do it naturally.
The latest research on Ivabradine shows that it does reduce Adrenaline and Norepinephrine in your blood. This was totally unexpected. It makes it the perfect drug for POTS. But your HR is so low that Ivabradine might be dangerous for you. How did the 1mg dose go?
@@JohnBedson my resting hr is 50-65. I too was just put on this medication for my inappropriate sinus tachycardia and POTS. My heart rate shoots up to 140's just standing. Sometimes, while sleeping or at rest it also suddenly shoots up. You think it's dangerous for mr to take? Also, can you provide me a link for the research you pointed to here? Would love to read about it. Thank you so much. I know it's been a while since you commented, but I am praying you answer.❤
I know it's been a while since you posted this, but curious to know if that 1mg worker for you? I too have a low resting hr and about to start this med.
Are you still taking Ivabradine? Any long term problems with it? If you stopped can you please tell me why?
No, I stopped taking it after a year as my POTS symptoms had significantly improved and I no longer needed it. I also wanted to stop taking it as it isn't approved in pregnancy and I wanted to have kids.
@@enterflora Thank you SO MUCH for answering! So, you do not think that Ivabradine caused you any problems? And do you think it may have helped you overall get better?
@@parrotheada1 It caused bradycardia for me personally, but otherwise no issues. It definitely helped me to get better as I could do more and live a more 'normal' life.
@@enterflora so what helped you that you stopped taking the medication?
Did u ever had skipped heart beat
How are you doing today?
Did have sleeping problem
Ivabradine does not affect sleep like Beta Blockers do. My 13 year old son sleeps great on this drug. He slept terrible on Beta Blockers.
You should probably keep your videos focused on the subject matter, this could have been done in 3 minutes and without the medical misinformation, but good to know about the ivabradine effects
Does it cause brain fog pots?
Yes
Did anyone got troubles with their eyes/vision after they started taking ivabradine? Because i certainly did :(
Yes I had
Do you take anything for inflammation? Do you take anything for anxiety?
Hi, I would be really keen to have a chat with you 😊
Me too. Could we somehow start an 'Ivabradine for POTS' discussion group? The doctors are so hopeless that unless we patients help each other, no one is going to recover.
How is ur pots now
I have not experienced any further POTS symptoms, though still experience pain etc. due to ehlers danlos
Good hopes from u
please leave the education for the experts, i really just wanted to know about how this medication affected you, this could have been a 3 min video, so annoying
Are you still on Ivabradine? (February 2021) Is it still working? Any new tips?
I stopped taking ivabradine in 2015 and have not needed it since. I took it for 12 months in total and gradually reduced the dose as my POTS improved with diet/lifestyle changes.
@@enterflora This video is truly outstanding. It's one of the best and perhaps THE best video for advanced POTS treatment on RUclips. You have beaten all the top doctors in the world who have presented so much obsolete garbage on other videos. This has helped my 13 year old son substantially. Thank you so much.
@@enterflora Thanks so much - this is a brilliant video - have you remained symptom free since you stopped taking ivabradine back in 2015?
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
@@sorellefraser888 Did you taper off the Bisoprolol? Many people stop their beta blockers dead and start Ivabradine and the heart speeds up due to the absence of the beta blocker. This is a great drug and I suggest that you persevere to try to get adjusted to it. If you stopped the bisoprolol dead you would be having problems. What dose of Ivabradine are you on?
I totally get the flopping heart 😂
I have inappropriate sinus tachycardia. Been taken beta blockers Bisoprolol for 6 years but its not working anymore tk control the tachycardia and I can only tolerate low dose due to already low BP. I started this meds 5 days ago and I'm struggling with it. Causing me chest pains but worse than that my hearts doing weird beats then I'm getting a dropping sensation as if my hearts suddenly flipped and dropped to my upper abdomim it happens again and again. Felt breathless on them too. Has anyone else had these side effects. It's so scary but so is the tachycardia it's so worrying as to what to do for the best. My sudden fast hear rate ruining my life ibhave panic attacks all the time now from fear of my heartbrate just spiking out of no where suddenly I'm scared everyday my heartbgojjg to explode or ill pass out everyday I feel like I'm going to die. I'm frightened to be on my own now
Hi
What beta blocker were you on? Does Ivabradine give you side effects like arythmia?
Morten Hamre Hi! I was taking bisprolol, but we didn't get on! I didn't have any irregular rhythms on Ivabradine, but I did have slow hr. Will update soon :)
Did you get the HPV vaccine? This condtion has been associated with vaccine injury. The symptom you describe are the same. Please read the book, The HPV Vaccine on TRIAL. iT WILL HELP YOU!
No, I've never had the HPV vaccine though I have had several other vaccines (flu etc.) before and since developing pots without any issue.