POTS (Postural Orthostatic Tachycardia Syndrome) Treatments

POTS (Postural Orthostatic Tachycardia Syndrome) Treatments

November 8, 2019 57 By Jose Scott


I was going into presyncope and like losing my vision and feeling horrible like most of the time that I stood up… (music) Hey guys, so I feel like the past couple of days I’ve been in a sort of minor pots flare. I think a lot of it has to do with the fact that I’m standing up now for like the first time in six weeks. So I’m standing a lot more than I’m used to and I think my body just you know forgot how to deal with gravity. So today, I thought I’d talk to you guys all about the different pots treatments that I’ve tried and what currently works for me. So just a very fast overview pots stands for Postural Orthostatic Tachycardia Syndrome and it’s a type of dysautonomia and so what this causes is it whenever time I’ve you stand up basically your heart rate increases dramatically and it just causes a lot of symptoms and I don’t feel good when it happens. Obviously there’s a lot more to this disorder, but I’m not really getting into it. I’m are just talking about the treatments that I’ve done. So what my first treatment that I started when I first got diagnosed with pots about I guess a year and a half ago was something called Midodrine. I’ll put it right here and I started off on two point five milligrams between two and three times a day I believe. This medication increases your blood pressure, and so, I took this because first of all while I have pots I also have Orthostatic Intolerance / Orthostatic Hypotension, which is very very common to have along with pots, and so a lot of times when people have low blood pressure it contributes to their symptoms or actually even having low blood pressure or an unstable blood pressure can contribute to the tachycardia aspect of pots. So therefore when you take something that increases your blood pressure it can really prevent your heart rate from having to increase so much. So when I started taking it it did help me a lot and it helped me a lot especially when I was walking and I’d feel very like lightheaded and insanely out of breath and just unwell. That’s like one thing it really helps me with and then it also helps me when I stand up. But it definitely proved to not be enough for me and I actually could just as easily take half the dose and basically get the same benefits, so now I take half the amount 1.25 milligrams. I have to cut the two point five milligrams in half because that’s like the lowest dose, and I take it like once to maybe three times a day, but honestly some days I don’t take it I really just take it on the days that I need it. So now I want to talk about another treatment that I do which was a second thing I took it’s called Propranolol and this is a beta blocker and it slows down your heart rate. Unfortunately, it also sort of lowers your blood pressure which is bad if you have low blood pressure like I do so It’s good to make sure that I take Midodrine with it or just make sure it’s not a day where my blood pressure is too low and then I can skip the Midodrine. And this has probably been the most helpful treatment for me. It really slows down my heart rate because obviously with pots my heart rate is like the number one thing that’s problematic and I just when I stand up it does not increase nearly as much. I mean it still goes over the 30 beats per minute increase. It definitely increases more than that with it. But it’s like maybe it’ll increase like 40 beats per minute 45 beats per minute. It’s something that’s like very manageable, whereas like if I don’t take it and I don’t take the Midodrine, I, you know, I’ll probably increase like 70 beats per minute. So there’s a definitely a big difference in my symptoms when I stand up. But honestly at a certain point I was going into presyncope and like losing my vision and feeling horrible like most of the time that I stood up and sometimes I’d like fall to the ground because like I felt just so terrible or like it was out of my control completely. And with this like I mean, maybe it’ll happen once a week. Maybe not even, I mean that’s how much it’s helped me. It is it’s been amazing. Also, I take ten milligrams if you’re wondering by the way, and there are other beta blockers that I know people take in that that can really help them. Now the next thing I did which has also been very helpful, but it’s not sustainable for like a long time are saline infusions. So I got this done at an infusion center and my doctor made me do it over four to six hours because as she told me and a lot of other people’s Cardiologists apparently know about this, As other people I know it like had the same thing, I have to get it done over four to six hours for like one liter of fluid, which is crazy and not just because sometimes people with dysautonomia when you give them a lot, it’s sort of like your autonomic nervous system might sort of get a little bit shocked like it doesn’t know how to deal with it and you either just might pee it out and then it’s like a loss of time. Or you just like might feel worse. So I know that I have to do it over at four to six hours. It does help, To be honest Propranolol helps more So I’m really glad that I found something that does not require me to get intravenous access. So meaning they have to put an IV into my arm. I sit there for like four to six hours and get this drip. It’s so annoying. I would go up between once and twice a week. And so while it did help it didn’t help as much as Propranolol it helped more than that Midodrine. Also the saline and salt and it can increase your blood pressure more which is like good if you have low blood pressure. But I think the main issue with this one is one you need to sit there for forever. But then also they they’re constantly poking at your veins and that’s not something you can do for that long on a frequent basis. So if I was going between once and twice a week, she said I could do it all of last summer, but if I wanted to continue, I’d need to get a central line. So that usually be like a port or a PICC line or a Hickman or something like that and I’m like, well, like I understand it’s totally worth it for some people I just feel like because the Propranolol works so well for me even though I wish I could you know deal with my symptoms better. It’s not worth the risk of getting things like like sepsis, which is terrifying and just also I don’t like if I don’t feel like I really need it then I don’t want to have to get another surgery or got something implanted in my chest or even if it’s not a surgery have something in my arm when I have like such a risk for getting sepsis and having other issues. So I just at least at this moment I think that that’s not really something that I want to call an option for myself even though my cardiologist would like totally before it, I totally would not be at the moment, but it’s really really helpful for some people and they totally need to do that and you know, it’s awesome that that treatment exists. So I also just want to say that I have a blood pressure monitor as well as I think two Aqsa pulse oxys, oximeter, ox ometer I don’t know how to say it and I don’t use them very often just because I tend to like I don’t really care what my blood pressure is or my heart rate is unless I’m feeling very symptomatic, but some days I’m like I can’t tell what is making my pots bad. Is my blood pressure low? Is it fine? is my heart rate really high and I need to use those monitors to help me figure out what’s going on and sometimes it’s like none of the above and I’m like why am I so symptomatic? Like what mean is it? Like blood pressure? Is at heart rate? And sometimes I think I just don’t know what it is. But usually if I take my blood pressure, it’s months. It’s low and then I’m like great I’ll take a Midodrine. But then if it’s not low at all and it’s like totally normal or like higher a little bit, you know On the high side or just normal then I’ll just take a Propranolol and it should be fine, you know, so I’m able to figure it out. And then also I use it because at night time if my blood pressure is low, I can’t take Midodrine. You’re not going to take it and then lie down for like multiple hours because that your blood pressure would like dramatically increase and it could be like kind of dangerous or bad for you. So I can’t take it at night. I have to take it… I think they said at least four hours before bedtime… it could be six. So I always just kind of play it on the safe side. So during that time, here’s another treatment that I do. I eat something that’s very salty or I literally take a bag of salt and sort of just dip my finger in it a couple times. More than a couple times. A bunch of times and just kind of lick it off. I don’t really mind the taste of salt. I can definitely deal with it. So I know it’s not an option for everybody. So something else I take is called a salt stick. You know, let me go get it. Hold on. So this is it. It’s called Salt Stick. And I mean it doesn’t have that much… wow, actually, maybe a little potsy talking about pots. It doesn’t have that much sodium in it. It does have a bunch of electrolytes. I mean a couple different types. So it has Magnesium, Sodium, Potassium, Calcium, a smidgen and the Sodium is a hundred milligrams for two tablets meaning it’s four percent of your daily intake of salt. So, I mean it’s not that much but if you’re gonna have four of these, I mean, that’s eight percent. It’s like a decent amount. It’s funny like on pots, in pots, sometimes you’re like on a high-salt diet and it’s like the total opposite of like anybody else. So I’m just gonna eat one right now because I want to. Something else my cardiologist had me get is called Nuun. N.u.u.n. and it also has electrolytes and let’s see… I keep getting up in between because I forget to get something and it’s like making me extra potsy. But it’s like fitting for this, you know video. I don’t usually get up a bunch so… ya know. That was so weird. So what how is Vitamin C, Calcium, Magnesium, Sodium? Let’s talk about the Sodium. One of these has 360 milligrams such as sixty percent of your daily value. So I mean, that is actually pretty decent. my issue with those is like I drink a lot of water and I love the taste of water. But when I put that in water I’m going to like want to drink it all in one sitting like really quickly and I can’t really do that. Things will just hurt my stomach a lot. And so like I don’t really like to drink them. I don’t know. I just feel like I’d rather to eat salt but I do think that they probably do help because they have salt in them I just like don’t really take them. When I bought them I thought I would and than I started.. I did a couple and now I’m just like month to month, oh, I’ll take one which is like bad, but whatever. So I also take something called Duloxetine and it’s an antidepressant. It’s an SNRI and I actually started taking it for pain that I have for my Ehlers-Danlos syndrome. But what’s interesting is my cardiologist was so happy that I was taking it because apparently it’s really helpful for some people who have pots and so I… so she actually increased my dose from 20 milligrams to 30 milligrams. It may have helped my pots. I couldn’t really tell and I couldn’t tell if it was like in my mind, you know, thinking that I was helping so like it was, you know, something like that. But um, honestly, I had too many side effects from increasing the dose. I was just very tired and like everything was kind of like fuzzy looking, but not in a bad way, but like a little bit bubbly. I don’t know and I have like very vivid dreams that were honestly exciting and I like them, but whatever, I had to give it up. So I was like honestly, can I go back to the 20? She was like sure. Now there’s another thing I’m interested in trying and that’s physical therapy for pots. I know some we’ll have found it to be quite helpful. I don’t know anything really about it. But there are certain exercises that you can do that are supposed to actually help. So I’m interested in that. Maybe after I make more progress with my knee I can bring it up to my physical therapist see if she knows anything about it and if so, maybe they could do some of the exercises and I’ll show you guys. So I think that is it for my pots treatment. I feel like I’m gonna like end this video and then remember something else but right now that’s all I can think of. Drink a lot of water too. Like a lot. So yeah. Please let me know if you have any questions. Subscribe if you want to see more videos, and I’ll see you on the next one. Bye.