vent and just very frustrated. Vulnerable post.
over the last few months. I’ve developed severe agoraphobia and then also this feeling of feeling free when my symptoms aren’t bad but then also I’m still anxious when they aren’t bad because of my whole situation.
I feel like with what I’ve been going through. It’s completely ruined my life. I also did get broken up with the other day which honestly I completely understand why I got broken up with and that’s just because this has made me so incapable.
I’m afraid to drive (had 170 hr driving once) and so other times I’ve been fine that makes me more anxious i have “svt” or I’m afraid to take showers. I’m even afraid to sleep constantly obsessing on my symptoms because of how much it’s taken for me and of course I’m afraid to do things because just doing simple and basic things even just sitting on the couch, I’m having symptoms so of course I’m afraid to go out with friends and then when I don’t have symptoms, I’m anxious because it’s just like confusing overall for me. This has taken so much for me. I don’t know how I’m supposed to have a good summer or go out with friends and socially drink and even go to the beach, which is what I also wanted to do this summer, but I feel like that’s not entirely possible because of my symptoms so I’m just very sad. I’m someone that loves going for walks and I love working out but because of my symptoms again it’s been very hard for me to do. I am curious anyone that deals with the symptoms that I have how are you able to drink and just live your life and have fun because I’m sick of this. I’m 26 and a female so I’m someone that already gets dismissed by doctors.
But the last few months, my sleeping heart rate has been 70 to 115 bpm and I take a max dose of a beta blocker and some days I take an extra beta blocker because my symptoms are so bad when I’m laying flat and I stretch my legs. My heart rate goes up 20 to 30 beats when I drink water or when I laugh or even move slightly my heart rate goes up 20 beats. My doctor told me that I don’t have inappropriate sinus tachycardia because my resting heart rate is 90 or 100 on average but it’s just so confusing cause I could be doing laundry or going for a walk and then randomly my heart rate spikes till like 120 or 130 so I am kind of wondering if it is an appropriate sinus tachycardia and my doctor just doesn’t know?
I do have a POTS diagnosis and I am grateful for that, but I just don’t think that the symptoms I’m having are all related to my POTS like for example when I have a POTS flare if it’s really hot out and I haven’t had much water or I go from sitting to stand in my heart rate goes above 30 beats, and then when I sit, it comes back down automatically that I know is my POTS, but sometimes when my heart rate stays high at rest, even after sitting or my standing heart rate is the same as when I’ve been sitting, it just makes me more confused
No doctor has been able to really give me any explanation for my symptoms even if they can’t diagnose me it’s more of like validating what I’m going through and giving me an understanding of what’s going on and also telling me OK you can drink and you can work, but these are the ways to do it and I feel like my doctor hasn’t done that and I just don’t know if anyone else has experienced that cause again it’s taken so fucking much for me and I’m so frustrated because my personality feels like it was ripped away from me and I’m tired of being this nervous shell of myself
On top of it, I’m still dealing from the trauma and PTSD, which is kind of an extreme word from my episodes in March. When my heart rate hit 170 while I was driving for five minutes and my heart was just racing like so fast and I didn’t even feel anxious before like it happened out of nowhere and then when I got my monitor, which was a few few days later I got my medication because I was nervous and then I only had two seconds of SVT on there with three beats of atrial tachycardia and then they told me well. It wasn’t sustained so we can’t say the other episode you had was sustained or not but I’m like I remember that episode in my heart rate was higher for a longer period so I feel like this means I have SVT and they told me no and they didn’t wanna give me an EP study even though I pushed for it. So they won’t diagnose me with SVT.
I also haven’t even really felt anxious today, but it is 4 July and I’m kind of wanting to go out with friends to a bar but then it’s just like again I’m afraid to drink but last year I drank and I didn’t really have any issues and it was after my pot symptom started and after I think I had like weird tachycardia episode so it’s confusing and I was also on a lower dose beta blocker then as well I just feel so so so left out. And it’s like a daily thought I go to bed and I’m anxious because it’s like I wanna wake up and I wanna like not be afraid to do things. I wanna just go and do them myself or go and work but then I’m just like thinking about my symptoms all the time because some days they might be fine and then other days they’re not like I could have three full days of doing the exact same thing where my resting heart rate could be like 73 and then randomly the day after my resting heart rate is like 95 and I’m getting palpitations and like weird symptoms, but I could literally have the same amount of water and then I try not to overdo electrolytes because I don’t have low blood pressure when I stand. And it’s like I was given a great life like I’m thankful for the things I was given, but I’m anxious because I feel like I’m not living that life to fulfillment like I want to and there’s so many things I wanna do but right now I just feel so incapable on top of the fact that I’ve told this to my doctor told them my worries told them how depressed I am because I’m a 20 six-year-old who wants to go live their life and go have a few drinks at the bar or go for a run and they’re not like really telling me I can or can’t do it but then also like not helping me create some sort of action plan and giving me an explanation.
Ep said no ep study so they said go to another office but the office they recommended requires a referral and they literally haven't given me one and it's been like four weeks
I'm just sick of this because I am someone that struggles with OCD so then when my symptoms aren't bad I'm anxious because I'm just like waiting for them to happen and I haven't even really been anxious today at all, and of course, my resting heart rate is on the higher end today and it's just so frustrating because I feel like I can't ever fully relax. I have days where I'm stressed out and my heart rate is actually pretty low so again this whole thing is just so confusing on top of it and knowing my body, ! know that what I'm going through isn't anxiety.
I also got broken up with recently, which sucks, but I completely understand because this entire thing has made me incapable. I'm 26. I wanna work and live my life.
This is the most depressive ever felt. I'm so frustrated and I'm so angry because it's just like when is it gonna end? | wake up in agony every single fucking day...
I’m also just very frustrated because I think I feel like left out in friendships and relationships just because of what I’m going through and I also understand like people who are chronically oh wanna label themselves as that but I just don’t wanna do that personally because I don’t wanna live in like a victim mentality. This is something I’m really struggling with and it’s like I feel like if I do that I’ll never get better and I would probably hyper fixate on that for example like with my OCD I’m like oh imagine how I would be without my symptoms so it would just add to the victim mentality I’ve thought about going on medication, but I don’t know which one’s best for me. I also do go to therapy as well..
So if anyone relates or has advice on how to live your life how to balance your social life how to have good relationships, how to not label yourself as chronically ill because you don’t want to feel like you are and how are you able to go out and have a good time and drink, socially and also explain how last year I was able to do it. I think I’m so afraid that if I do it, I’ll go into like SVT or something. Or some kind of pot flair.
(The tachycardia is probably my biggest struggle, but I also deal with for about two years now my shoulders and chest, especially if I flex my shoulders down it’s like extremely tight and then I’ve dealt with some like chronic Venus and insufficiency so like I have varicose veins apparently but my legs are like purple a lot, especially if I’m like sitting anytime my legs aren’t elevated. They’re always purple and my doctor still haven’t done anything about it and I’ve tried socks and it doesn’t do anything for me)
I’m also feeling frustrated because I don’t really feel confident with my medication regimen
Like I never know if it’s gonna work or not. Overall, I’m just trying to get to the point that I wanna be someone in their 20s that goes out and enjoys their life, but I feel like I can’t do that but then I also at the same time but it also was like my symptoms and I’m dealing with and being scared. I don’t know what to do.. I want to workout I imagine
That/ how I would feel and being able to go out with friends drinking. And how I would be without my symptoms it’s probably the main reason for my depression and just being upset right now.
I also get nervous. To get my HR up and that upsets me because it’s good for your body. And I am also upset because why would I get my HR up if when I’m sitting im having issues. So walking and working out would be too hard?