weeamanda Posted August 25, 2020 Report Share Posted August 25, 2020 Hi everyone. I stumbled across this forum a while back. My story is kind of a long one, but i'll try to shorten it so I can get to the problem I'm having now. Since I was about five, I recognised I had a constant feeling of nausea. I never told anyone until I was about 13 when it was becoming too hard to stand anymore. This started a very long journey (I'm now 24!) of trying to figure out what was wrong. I was accused of being a faker by doctors, one trying as much as to get me sectioned, until I finally gave up and thought that I would just have to live like this forever. I saw a gastro doctor who knew I wasn't lying, but couldn't figure out what was wrong. I took the medication for nausea which thankfully worked a little and I stopped going to doctors after that. I then started taking really bad dizzy spells, and basically ended up in bed from October through to March. I always knew I had a faster heartrate, and after much research stumbled across POTS. Got myself a smartwatch, and lo and behold, heart rate would shoot up everytime I stood. I went to a new GP, and she referred me to a cardiologist here in Scotland. Now here comes the problems. I had an echo which was normal, apart from the fact my heart was beating fast during it. I've now been told I have IST? My resting heart rate for the last two years is normally 56-64bpm. From what I'm reading, IST causes a fast hear rate constantly. I guess it makes sense in the sense that when I get a little nervous, my heart pounds. But a lot of my weird 'feeling' are relieved on laying down. I have blue/red feet and legs, EDS runs in the family, all my symtoms get much worse before a period. When the cardio told me it was IST, I did try to question him a little but I am terrified of being seen as difficult, or too pushy. I have to be honest, I had such a cry after that phone call because at the start, I joined a few POTS groups and I finally felt so not alone. I met people who knew what I was feeling! In desperation, I've found my cardiologists email, and sent him one but I'm not sure if he'll be happy to discuss anything with me via email. I would find it so much easier to ask him things if he let me ask via email. I have no clue what to do next. I know IST and POTS are similiar, so there is a question in my family of "be happy with what you get diagnosed with" but I've waited so long so I want the 'right' answer, if you know what I mean? Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 25, 2020 Report Share Posted August 25, 2020 Hello @weeamanda - welcome to the forum!!! Yes, your symptoms do sound a lot like POTS. Here is a quote from the link below: Inappropriate Sinus Tachycardia (IST) is a condition in which an individual’s resting heart rate is abnormally high – greater than 100 beats per minute or rapidly accelerating to over 100 beats per minute without an identifiable cause; although small amounts of exercise, emotional or physical stress are triggering factors. https://www.heartrhythmalliance.org/aa/us/inappropriate-sinus-tachycardia So clearly - in your case the resting HR is low, so it sounds more like POTS, in which case the HR raises above 120 or at least 30 BPM within 10 minutes of standing. Nausea and dizzyspells also point towards POTS - IST does not commonly cause these symptoms. It is not uncommon for cardiologists to confuse the two, since many physicians are unfamiliar with the complicated mechanisms of POTS. Here is an article you could forward to your physician ( it is very medical, so not easily understood by many patients ) https://www.ahajournals.org/doi/pdf/10.1161/jaha.113.000700#:~:text=Patients with IST have a higher sympathetic contribution,11 bpm%2C ANOVA P%3D0.108). IHR was not significantly It explains in detail the differences between the two disorders. I am not sure what type of physician your cardiologist is but I have always shared articles with my physicians if they did not understand POTS. Some were offended but most were interested and appreciative. I personally would email or mail this article to him and make an appointment to discuss POTS. Once you provided literature that explains the difference he really cannot brush it off. You can also call his office and ask to discuss the difference between IST and POTS. No - personally I would not be happy with an IST diagnosis b/c there is more to POTS than just a high HR. In order to get proper treatment for all of the symptoms ( which can change over time ) it is important for physicians to understand how POTS affects the body ( many body systems are affected by autonomic dysfunction ). In the beginning of my illness the doctors addressed each symptom separately and my medical history looks like a medical dictionary b/c each symptom is listed as a diagnosis. But POTS explains all of my symptoms and treatment is more effective when all symptoms are considered together. Keep advocating for yourself - you are doing the right thing looking for answers and you don't need to be kept quiet with an IST diagnosis. See your cardiologist and discuss your concerns and questions. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted August 25, 2020 Report Share Posted August 25, 2020 I agree with Pistol having the correct diagnosis is very important to get the best treatment. I hope your consultant is willing to discuss this with you but if not I would go back to GP to discuss your concerns and if needs be ask for a referral for second opinion. Quote Link to comment Share on other sites More sharing options...
weeamanda Posted August 25, 2020 Author Report Share Posted August 25, 2020 Thank you for your replies @dancer65 & @Pistol! I haven't received an email back at the moment, but I will pursue this further. and try to stand up for myself. Is it possible to have both IST & POTS? I guess IST would make sense because when I get even slightly nervous, my heart rate goes sky high. But then I have the orthostatic symptoms too. Sorry for all these questions! Edit, I also forgot to mention another reason I was distressed after the phone call was because I was to phone on Monday and set up an appointment for this week to start IVABRADINE, which to be honest, I'm not sure if I want to take a medication at the moment. I'm so scared if I reject medication, they won't believe me anymore. I have to go in to hospital for a few hours for them to 'trial' it, and I can't take anyone with me because of COVID. I CANNOT say no to doctors, even when i'm uncomfortable with what they suggest. The tachycardia is really the least of my worries, I've had it so long I don't notice it much anymore and it doesn't distress me. I couldn't bring myself to phone, which also prompted the hurry to email the cardiologist. I feel so pathetic sometimes! Luckily I have a bad cold at the moment and have lost my voice, so that was an excuse I could use. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted August 26, 2020 Report Share Posted August 26, 2020 I have POTS and VVS and if I’m stressed physically or emotionally my HR goes high and the addrellin give me the shakes . I find deep breathing and meditation helps in these situations but it can be hard to concentrate when I feel like that ! If you are unsure about medication I would explain to Dr you would like a bit more information . Medication often is trail and error for each patient reacts differently. I started on florinef which helped only a bit but when they changed me to midodrine the improvement was significant. i hope all goes well for you keep us posted x Quote Link to comment Share on other sites More sharing options...
weeamanda Posted August 26, 2020 Author Report Share Posted August 26, 2020 @dancer65 the same thing happens to me, I have to be given Diazepam at the dentist because I shake so bad that they can't work without it. I hope I get a reply back, but as of yet, nothing. I'm assuming he's pretty busy so I'm trying to be patient. Thank you for all your help! Quote Link to comment Share on other sites More sharing options...
weeamanda Posted September 4, 2020 Author Report Share Posted September 4, 2020 Well, I'm not sure anyone will see this, but what a time I've had of it. Still no reply from the cardiologist, but he's went ahead and arranged an appointment for me to come in to a ward on the 15th at 9am, to stay all day! I'm not allowed anyone in with me, COVID and all that. To be honest, with all the reservations described, additionally I'm not sure I want to be in a hospital during a pandemic. Especially on a medication that will lower my already low resting heart rate. I assume it would be fine in clinic because as I said before, nervous = high heart rate, but I worry about when I get home and my heart rate goes as low as 49bpm during sleep. I'm actually a little annoyed he just went ahead and booked this in! He noted on my final diagnosis letter that I notice 'fluttering' when standing, and have 'episodes' of nausea. As I explained in the first post, and to him, I'm nauseous constantly, and have been since I can remember. I'm popping in a note to my GP tomorrow that enables my Mum to be able to speak to doctors with me, then on Monday I'm going to phone his secretary and ask if he can phone us before then because I have questions I need answered. My Mum is going to support me, and hopefully enable me to feel like I can 'question' his diagnosis. It's not that I don't agree with IST, but I firmly believe POTS should be written down too. I'm just so annoyed at the idea he's going by my 'resting' heart rate when I'm in a hospital, not when I'm actually resting and relaxed. He told me the reason they do 24 blood pressure monitoring is because you can't get an accurate reading when someone's nervous, but it's not the same for heart rate? I've since went back into my notes to see what he said at the start. I mean, doesn't that basically confirm POTS too? Also, EDS has never been mentioned again which I was looking forward to exploring further. He asked me to draw a family tree with a list of all symptoms occuring, and I did so. It would have been good to have at least gotten that confirmed, since my brother suffers quite badly with muscle pain and he's by far more hyperflexible than me. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 4, 2020 Report Share Posted September 4, 2020 @weeamanda - I would trust your doctor, since your resting HR was consistantly elevated I don't think he is wrong by suspecting IST AT THIS POINT. I also personally do not think it a bad idea to admit you for Observation for further testing or try-out of meds, The best way to figure out what is going on with your HR and BP is to monitor you in hospital. Let us know what happens, and good luck! Quote Link to comment Share on other sites More sharing options...
weeamanda Posted September 9, 2020 Author Report Share Posted September 9, 2020 Just writing a final little update. Spoke to the cardiologist this afternoon with my Mum on the phone. He's not sure where just IST came from, he's officially diagnosed me with a POTS/IST 'mixture' as he explained on the phone. Ivabradine is left on the table, and he says I can pursue this whenever I want but for now he's happy with me trying the more conservative measures. He suggested trying bananas for potassium, which I might just give a go! I'm very relieved and now satisfied that everything makes sense. Thank you so much for all your support, much appreciated. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted September 9, 2020 Report Share Posted September 9, 2020 Pleased this all worked out for you , hope you manage to get things more under control . X Quote Link to comment Share on other sites More sharing options...
weeamanda Posted September 9, 2020 Author Report Share Posted September 9, 2020 Thank you very much @dancer65 I hope you're managing well also! xx Quote Link to comment Share on other sites More sharing options...
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