My Dysautonomia | POTS Story

Feb 09, 2023
People with dysautonomia deserve better Health Journey postural orthostatic tachycardia syndrome

Sharing two years of hidden struggles, pains, and problems. My story of dysautonomia, POTS (postural orthostatic tachycardia syndrome) and severe depression. 


Okay, so I have my podcast. And if you were here listening to this, this does not have anything to do with passion connected. And as much more of a personal note to anybody who knows me loves me wants to know about my life, if you listen to the podcast, and you're here for this, and you just want to hear what's up in my life, and if you want to take something away from it, and hopefully be encouraged, or if there's something I can connect with you on, then stick around. But I'm not talking about sex. I'm not talking about intimacy, or marriage or anything like that. Today. This is this is a very personal video. This is me sharing what has been going on in my life for the past year and a half in a way that I haven't shared yet. On with my podcast, with my business with social media, I've shared little tidbits here and there. You know, saying that things are struggling and I have even shared on there that I have pots, which is Postural Orthostatic Tachycardia Syndrome. It's a form of dysautonomia. So basically, my nerves are dysregulated, which causes a whole host of problems. But I wanted to actually get on here and share what that journey has been like what that really means because there are a lot of people who know me, there are a lot of people who love me there a lot of people who see me online, and have absolutely no idea that life has sucked hardcore for the past year and a half. And I want to share that, I don't tend to be very vulnerable with these things. Unless you're really close to me. And that is something that has been good because I've been able to deal with my problems, one on one. And in my own life, I've been able to just sit down and do a lot of processing and figuring things out. But I also know that community is huge. And I don't use community like I should. And I don't ask for help like I should. And so I guess this video is a little bit twofold. It's one me sharing myself just to be able to share it and get it out there. And for the people that I love to see it and hear me and know me, but then also for anyone who's listening who thinks that they might have pots or thinks that they have things going on that they don't know how to handle they don't know how to share that you might just find a friend in me find somebody who gets you find somebody who understands so this video, okay, how do we start Okay, so it is Monday, and I don't know if I'll have a lamp on Wednesday, so I figured I would go ahead and video this one I just got out of the shower. Which I tend to be more cold think when Kay limp when my limp gets worse, I tend to be more I've noticed a pattern of it's more cold when I'm, you know what I'm saying? Anyway, I'm gonna video this. So yeah, side note things on it. It doesn't hurt. It just feels like I'm about to like fall over. Everything feels really weak. Like if I were to try to lift a leg up, I'd fall over and it all feels like it's tight like in my hips. So all right so both of my legs are still like my knees worked fine. Like they're fine they're just weak. And it's my my back or my like lower back is like the most weak like I feel like I'm like wobbly back and forth. Okay, so this is me having an episode and I am I was getting really lightheaded there for a while I felt like the the air was hard to breathe, and I was lightheaded. And I have a little bit of ringing in my in my in my in in my ear And I feel like my legs are really detached right now. And my body's just really weak I'm really hot just wanted to video it for a second trying to think of any other synonyms I feel like my brains not working very well. Like I can't think. And I just feel really weak couple of nights going to sleep in a row after 11pm which is already been a threshold we knew about I started having what I thought were panic attacks, I would start just violently shaking. hyperventilating getting close to passing out having a lot of just yeah, these awful like attacks, I just call them attacks like, I would be shaking so hard and like you couldn't even you couldn't get me to stop shaking for whatever it was 15 minutes, 30 minutes an hour. The only time I had had that happen before was when I was pregnant with Keita. And there were a lot of things that went wrong with my pregnancies. Bella's birthing process was incredibly traumatic. It was a near death experience that rocked me and stole a lot of things from my body. First of all, tons of blood loss and hemorrhaging, and everything else. And then a lot of my health it just like spiraled down from there, then you add Qaeda in, and two miscarriages and Kaitos. Pregnancy was awful. I didn't get up off the floor. The majority of pregnancy, like all I did was play with bail on the floor and try to survive. And it was hard to eat. It was just awful. I should have asked for more help than I did. Because nobody knew nobody knew how bad it was kind of honestly didn't even know how bad it was like I would share a lot of things with him. But then I would just get embarrassed and nervous and feel like everyone else is able to handle pregnancy, but I'm not. And we gave we had Keita come early, I gave birth to her early after being induced and find out that the placenta was basically done. And my body was done. And I had had one of those like attacks or whatever when she was I was like six months pregnant and sent me to the hospital. It was really, really awful. And after my doctor looked at the placenta, and just like checked my vitals and like the vitamins in my body, and my heart rate and my blood pressure, and everything, she was like, you probably would not make it through another pregnancy. You need to not have any more kids. And that was really hard. And I knew it. I knew my body wasn't able to handle it. But to see that, you know, my placenta was done and have run out it was calcifying like it had nothing left to give Keita and my body was just done. And like the moment I had her, and she was out, like my eyesight came so much clearer. I stopped having Well, for the most part, I stopped having like really bad headaches. My body didn't shake as much holos to things like just cleared up. And it's one of those things where like, if you're a person who struggles with anything physical and that goes away, sometimes you're just shocked. Like you're so shocked that you were in as much pain as you were in because you don't remember like it does. It just becomes your normal and when it's taken away. It's like I don't know. I didn't realize how much pain I was in. I didn't realize how much energy I didn't have. Yeah, it was crazy. So have her and like, she's about two months old when I have my first horrible migraine had funny auras pop up and just like had no idea what was going on. Oh yeah, during Bella's pregnancy, I remember seeing like sparklies. And I was like, something is just is this angel? Like, I don't know. Why am I seeing sparkles in the air? Apparently that's a blood pressure issue. Like, headed towards preeclampsia issue. So anyway, there's so much more to this story than that. I'm just giving the basics and sharing this because I need to share it. And yeah, like I already said in the beginning, like everything that goes with it, but I had my first migraine. And then just thing after thing kept happening. Just like not feeling well, or getting sick here, or this or that or the other thing. And so finally, she's, what a year. She's a year old, and are just a little over. And I started having, like I said, what I thought were these panic attacks. And life was definitely at the lowest than I have ever been. I thought that I mean, I, I definitely had depression, like, I had no idea though. Like, I didn't realize like what was truly going on. But I would have these attacks, like every, it started off, like every week. And then after a while it became like every other day. And then it was becoming like close to every day. And I was so lethargic, I was so sick feeling I was so exhausted, I would get up out of bed. And I would try to walk across the room and my eyes would just go black, and I'd be close to passing out. So it was either get to the floor really fast, or, or pass out, like I have two options. And so I stayed in bed, like a lot. I didn't really interact with my kids very well, I didn't make food like I used to which like compounded the issue because then I wasn't eating very well wasn't drinking, wasn't sleeping, because I was in like random pains here and there didn't really understand what was going on, like constantly shaky, constantly dizzy, when I would lay down, I would just I'd have really bad vertigo, I would feel like the room was spinning and spinning and spinning. And the entire time I kept trying to live like I was still okay. Like, when I could get up out of bed. I tried to do everything I tried to act like it was totally fine. Like I hadn't just spent the past week in bed, like if I could get up I would just like keep going I would do my podcasts, I would try this, I would try that I would, I would try to do motherhood as best as I could. And I'm the type of person like so. I my personality type is Enneagram eight, which is like so like the highest energy level, like the person who does everything and then some very much like a type three. They were late on a lot of things. But it's just like, constant. Like I'm the kind of person who has way too many hobbies. And I was trying to keep up with them while I was sick. And during this time I honestly like the few friends I talked to I just questioned like, Am I going crazy? Like what is wrong with me? Like what is wrong with me? Why is this happening? What is going on? And there were a few other things in my life that were really hard and compound this all together. I didn't want to live anymore. And was very seriously on my birthday in 2021 contemplating suicide, like hardcore, it was not it was scary. And thankfully my husband kind of found out because I there are a whole series of events that I would not like to go into. He found out and we started getting me some help because it was just bad. Like he knew about the panic attacks like he was helping me through them or what I thought were panic attacks but he had no idea like how to press like he was working. He's still working, like gets up in the morning leaves before the girls are up and or leaves like right after they get up in the morning and then he's not back until 1130 Two o'clock at night, roughly. So like the entire day, if I didn't tell him what was going on, if I wasn't vulnerable, like, was like, Hey, I didn't do anything today because like, I couldn't get up out of bed, he wouldn't know. And I would try so hard to just make it look like I was keeping up with things, and trying hard to actually keep up with things. So that like, I was carrying my weight. But it was not the same. It was not the same. And anyway, so I start going to therapy. And I have several sessions. And, you know, there's things that everybody needs to work on, like I had things to work on, like, emotionally, psychologically, obviously. But I am so grateful for this therapist, because he was like, I don't think you're having panic attacks. And he said, I think you need to go to the doctor and start like questioning what's actually going on. And this is when then Thanksgiving, I finally shared with my parents, a little bit of what was going on. And you know, I should have shared sooner, like, obviously, I should have shared sooner with more people in my life, multiple people. But I shared with them, and they agreed they were like Amanda, you are not like if if you are dealing with depression, like the you know, you're dealing with that, but you're not crazy, like this is physical things are actually happening to your body, things are actually going on. And they pushed me also to go start talking to a doctor. And so I did. And my doctor believed me, God bless her, cuz I didn't even believe myself. Like, I just thought, that's just panic attacks. Like, I'm just like, I'm just shaking, like, I'm just, whatever. Um, and we started running tests, they couldn't find anything. And I hmm, y'all, it is the hardest thing. If you know somebody who is sick. And it's going through tests, and going to doctors, time and time and time and time again. For the love of God, give them so much love. And like so much information. It is so hard to push through a negative test when you know something is going on, and a doctor's test can't show it, it just like is the worst feeling in the world. Because it just makes you again question like, Am I making this up? Is this really happening are these pains like what is going on? Um, and so I kind of paused it because I was like, I can't keep doing this. Like I can't. I went and got like some personal tests from like another like a naturopath and he tested like my cortisol levels and stress hormones and just all of that sort of stuff. And it was all very, very high. And I needed to, you know, address that and deal with that and, but like everything else, I was low on iron, which makes sense. And there was some other things that might have been contributing to some stuff that was going on, but nothing that really made sense for like, really truly what is happening. And so I kind of set it aside and I kind of was like I'm just I can't keep doing this. I can't I can't have another needle poke me right now. I can't have somebody else tell me that they don't know what's wrong. And so I kept pushing it off. And then one night in February then of 2022 I had a drink with Caleb just at home I had we I made us some margaritas I had one drink. And I started feeling really bad. And I went to bed. And I had I had been waking up in the middle of the night like with my heart racing really, really fast and I just thought anxiety or panic or whatever. But this time I had my Apple Watch on which I bought specifically because of all of this stuff going on. I was trying to keep track of my heart and things. I woke up and it was me just laying in bed I woke up with it at 155 beats per minute. And then right after that, like Five minutes later I like I went up, I went to the bathroom, I come I lay back down and I had the sharpest pain in my heart that I have ever experienced. And I was like, I'm having a heart attack, I'm having it's genuine. Like I'm having a heart attack, I have to go to the doctor. So I wait Caleb up. And I'm freaking out. Because at this point, I've had tests done like, I have had like cardiologist stuff done, like I had so many things done, and there was nothing there. So like, I just, but I couldn't fake this, I couldn't fake 155 beats per minute waking up at like 2am. So we load up the girls. And Kyle takes me to the hospital here in Siloam. And by the time I get to the hospital, I'm just like, I'm in so much pain, and freaking out, honestly, because it was like what the heck's wrong. So they take me and they lay me down, they start drawing blood and hooking me up to these monitors and everything like that. And my heart starts calming down a little bit, the pain is still there. And I'm shaking violently, like seizure style, shaking. But my heart starts to calm down. And I, they stand me up for just a second. I can't remember why it was whatever. I think it was like, had to like walk to the bathroom and get a urine sample or something. They stand me up, and they lay me back down. And my heart went from 100 beats per minute, or roughly around there. To just from standing up and laying back down. It was at 188 I think it was in the 180s. And and it stayed there. It stuck there for a while. And the doctor came in and he was like, what, what, like what happened? Like what, you know, he's thinking, like, I just ran a marathon or like, did I did something happened and like I get poked with a needle to make it spike or something like what's going on, but it's stuck there. And they were like, no, she just like stood up for a second and lay back down. So thank God finally, there was like at least a piece of paper to show something's actually genuinely happening in my body. I'm not crazy. We just don't know why. And they run every test in the book other than an MRI. Like CT scan of my whole body, like everything. And there is literally nothing on it literally nothing on it. That was hard to work through. And just sucked because the doctor was like, Excuse me, he's a sniffle the doctor was like, something's wrong with you. I have no idea what I'm like, great. You and everybody else. Like this is awful. This sucks. So sends me away. Like once my heart calms down. They gave me like several bags of like IVs and things like that. But he was like I like just come back. If it happens again. I'm like, Okay, well, what are you going to do? Because like, I don't know. Yeah. So find out later in the story. When I figured out I have pots, alcohol, and pots don't mix. And I have not been able to have a drink. Like, since we figured that out. I haven't been able to have a drink since because even like a sip, just like like my body just reacts so badly into shakes into heart problems into blood pressure issues into headaches into everything, so I can't touch it, which kind of sucks. I kind of miss it. Like being able to just have a drink. But, you know, if it keeps me from being in the hospital, I'm okay. So, yeah, fast forward, like several months. And they're all things like all the doctors are like it's heart related. It's heart related. It's heart related, because like all the pain and all the problems were in my heart. They do Holter monitors overnight. Holter monitors, I do like a stress test where you have to like run on a treadmill and try to like see what triggers it. And nothing, nothing, nothing, nothing, nothing. And then finally, it was like the beginning of summer and they did a tilt table test which basically just you lay down for a while and then they told you up and they test you're like does the blood go to where it needs to go at the right time? Like what is happening and that one finally finally came back positive and diagnosed me with pots, which is actually a neurological issue and I don't even want to get into the medical system. And its mess that much but I am going to touch on the fact that I I would have immediately been sent to neurology like I should have, and nobody even recommended that to me. They're like, just see your cardiac cardiologist while I see him, like a few months later, and he's like, Yeah, I can't like here's some meds to help with the blood pressure so that we can force the blood up to take care of everything, but like, I can't help with everything else. I literally gave him a list of symptoms. Like my ear has been ringing, I still have headaches and migraines. I have pots creates got gut issues, which are not fun. I have like stabbing pains down there stabbing pain in my heart, like so many other things, the shakes, I'm like, can we not? Can we get this figured out? And he's like, you just need to eat more salt and drink more water. And here's a med but like all the rest of it. He was like, I can't help you. Why can't he help me? Because it's a neurological issue POTS is nerves nerve related, like something in my vagus nerve, which runs down your spine and back up through to the top of your throat and connects to every organ in your body. Is the regulator for it all? That's where Potts is. That's where the problem is. It's a nerve issue. And nobody sent me to a neurologist. Go figure. I didn't know. I mean, I'm stupid in this whole thing, because I'm doing tons and tons of research trying to figure out what the heck is going on. And yeah, so anyway, we're here 2023 And I'll have my first neurological appointment next month. So that's like, that's, like, way too long for this to thing going on. Um, but getting that diagnosis was like so Vereen cried hard at that, because I needed that so bad. I needed somebody to tell me like everyone agreed there was something going on. They just couldn't tell me what the heck it was. Everyone agreed that life was awful. And it sucks. And it's like, POTS is so incredibly debilitating. I mean, I wish I could video my I don't wish actually like part of me does. Like I could video my whole day to show you guys what I have to go through. And I'll explain a little bit of it, but it sucks. And I don't give myself enough credit. And people who are healthy do not because I've been there do not give people who struggle with like debilitating diseases and things. And of credit because this is just freaking awful. So anyway, fast forward to this fall. More stuff starts popping up. I start having a limp. That is like really, really weird. I don't know how to explain it. My hips are weak and stuck and just confusing. It's made me fall a couple of times. Add that on top of being dizzy. And having vertigo. And you make for a really just like uncoordinated clumsy grandma. Like I'm hilarious. I really need a walker. Yeah, so this video is 25 minutes. And we're still going. But that's because I and this is even like this is a short, obviously shortened version because it's not even sharing everything. But I start having like numb patches on the back of my legs, my hands and feet, I wake up to them stinging and tingling. So what's the only other thing that I can think of that does this is Ms. Which was terrifying for me to think of? Because and not but I've seen that thing. But it was just like terrifying. Because I know what that is. And I watched somewhat watched a family member go through it. I have an aunt who has MS and what their family has gone through and what it does. It's rough and awful. And just I can't I don't know. So I go and get an MRI and get it tested and I don't have a mess and I don't have a tumor and there's nothing going on my brain. So it's definitely still somewhere within the vagus nerve, but I'm still having more symptoms than what Potts is associated with. And so talking to every doctor here in Northwest Arkansas that I have from cardiologist to my regular doctor to I'm going to neurology now and we'll see what they have to say but pretty much everyone is like you are beyond my help. And so I plan to go to Mayo Clinic and Start with there. See if I can get on the pots, clinical trials that they have going. And then also just have a panel of doctors look at all of the stuff and see if we can figure out what the heck is going on. Because I would like to walk straight for at least the next few years Yeah, but I got that news. What's today, today's the 19th of January, I got the MRI news, the 16th. And I was not like happy I mean, I was happy to not have MS and happy to not have cancer and happy to not have anything like wrong in my brain. 



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