Dysautonomia Survival Guide

Hey I'm Kelly and I was diagnosed with dysautonomia 5 years ago. I thought I'd share some tips, tricks, and some laughs for fellow potsies :) if you have anything you think could be helpful let me know!

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Mayo Clinic Fixed My Dysautonomia

Hey guys! I haven’t been on here for a while and for good reason. My health has completely turned around and it’s all thanks to the Mayo Clinic. I went in using a wheelchair and left walking on my own and now I run and workout everyday. I wish I had heard about this program and the things I learned there sooner because it turned my life around so I wanted to share some knowledge with you guys about it. I urge anyone with Dysautonomia or any other chronic illness to look into this because the relief it gave me and so many others is unreal. Under the cut will be more info on it if you’re interested.

I went up to the Mayo Clinic in Rochester, Minnesota last October and was planning on staying there for a week but ended up living there for a little over a month. During that month I was in a program called PRC, which stands for Pain Rehabilitation Center (there is a pediatric one called PPRC for anyone under 22 and that’s what I was in). While I was there I learned so much about Dysautonomia and how to not only function with it, but thrive with it. I was with about 10-12 other people ranging from 15-22 who all suffered from chronic health issues, many of which were Dysautonomia and more specifically POTS. We had our own section of the hospital that we would go to every day and throughout the day we would learn how to function and get past our illnesses. This included physical therapy, occupational therapy, mindfulness, various forms of exercise, fun activities, and discussion with extremely knowledgeable doctors and nurses. They were so aware of every aspect of my illness and how it works, what makes it worse, what makes it better, it was amazing. I have never been in better hands. Two main takeaways from the program were to not discuss how you’re feeling because it only draws your attention to it (this sounded crazy to me at first but it has made a huge difference) and to stay active all day everyday (this sounded beyond impossible but they worked with me to gradually build my stamina up). During this program they are literally rewiring your brain. They were constantly telling us that it was not in our heads, we have very real health issues but there is a way to literally create new pathways in the brain and let the old pathways go away. Those old pathways include responses to pain, nausea, dizziness, anything like that. I wish that Mayo Clinic would spread this knowledge more so that way more people can get relief. I suffered with chronic illness since I was 12 and I finally got relief at 20 years old. It turned my life around completely. I was extremely depressed and barely hanging in there but now I am living the life I always wanted to. I won’t be posting on this blog anymore because discussing symptoms and all that kind of stuff will only take me backwards in my recovery, that’s why I stayed off of here for a year, but I will do my best to answer any questions or messages that come my way about this program and my recovery. Stay safe!

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convos like these...

person i haven't talked to for a while: how are you? what are you up to?

me: i'm hanging in. i'm at the mayo clinic right now, I actually have to stay here for a month

person: oh ok! so you're doing better!

me: no, no not at all...

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I was just diagnosed with POTS, but i’ve never fainted. And for some reason that makes me feel kind of... invalid? Like my POTS isn’t bad, if you get what i’m saying? I don’t want to faint, but I know many people with POTS who do and I guess I just think that maybe mine isn’t bad enough to feel bad about or consider a disability.

I get what you’re saying and I used to feel similarly for various reasons. You are completely valid and you are dealing with a chronic illness that’s a huge pain in the butt. Just because you don’t have one particular symptom does not mean you aren’t suffering too. Someone in life always has it worse in one way or another in every aspect of life but that doesn’t demean what you’re dealing with and it certainly doesn’t make it any less valid <3 

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Hi! I have a seizure disorder and now my neurologist thinks I have an autoimmune disease, POTS, and possibly rheumatoid arthritis. I’m going to a cardiologist to get a for sure pots diagnosis and then a rheumatologist here soon. And in all honesty, I’m terrified. Autoimmune diseases sound so scary and I just feel so lost and like it’s all hitting me at once. I have gotten use to the seizures, and the POTS isn’t a surprising diagnosis, but an autoimmune disease just sounds so scary. Any advice?

Hey! I’m so sorry you’re going through this :( I’m sure it must be really difficult. I have no experience with autoimmune diseases so I don’t really have anything too helpful to say. What I can say is that there are medicines out there that can help people with autoimmune diseases control their symptoms, it’s not a lost cause. Being diagnosed can be so scary but one way to think of it is that having a diagnoses means that now you can move past all the wondering and focus on treatment and feeling better. I hope you’re doing well! 

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My doc thinks I have POTS but we don't have a tilt table in town (I may have to drive 3 hours away) so he told me to test myself. I tried a poor man's tilt table test and wasn't seeing more than a 20bpm increase (which does appear to continue to climb but I can't stand longer than the 10 minutes because of the blood pooling in my feet), but when I'm symptomatic my heart rate is 130+, and goes down (along with my symptoms) upon sitting. Has anyone else experienced this?

Hey! I hoope you were able to go get that tilt table test! I have experienced that but not usually to the same extent. I’m on a beta blocker so my heart rate increase isn’t very big but I still deal with symptoms but occasionally when things are very bad my heart rate will jump a lot even though I’m still on the beta blocker. Any one else deal with something similar? 

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Hi!! Bit of a different question, but I was curious; have you heard of others having issues with their menstruel cycles related to Dysautonomia? I tend to get really ill and in crippling, severe pain.

YES. I have this problem and it’s a pain, literally. For one I get very bad cramps, but I don’t know for certain if that part is worsened by the Dysautonomia but I suspect it could be. Mainly though, several days before I get my period all of my Dysautonomia symptoms get so much worse and I am usually bed bound, more than my usual being bed bound. This will usually last until the end of my period. My period is also really irregular which makes me have to guess if I’m feeling worse because something’s going on with my health or if i’m just getting my period. I’m not really sure why this stuff happens but it sure is annoying. 

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I have epilepsy (controlled for now) and was diagnosed with POTS last month. I already quit my job to focus on school when I got sick 2 years ago cause I couldn't manage both but now school is ending soon and I'm worried about whether I'll be able to work well again. Any advice on what type of jobs work best for people with pots, or how to explain my situation to employers? Idk if I could get disability but student loan bills are coming so I've gotta figure out something lol

Hey, congrats on finishing school! I totally get why you’re worried about this, it sounds really stressful. I personally don’t have a job but the first thing that comes to mind is jobs where you are sitting most of the time. Working at a desk might work well! I had tried to get a job with a bakery near me and I explained my situation to them and they were so cool about it and offered to get a chair to put behind the register so I could work the counter but still be sitting. I think being open about it is so important and so is you being cool with it. I know it can feel uncomfortable to talk about it but if you are confident in what you’re saying people tend to feel more confident and comfortable about the situation. Definitely look into disability because you won’t know unless you try! 

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I’m the annon who asked about the tilt table and I’ve finally been diagnosed with POTS thanks for helping me not stress to bad about the tilt table, but it wasn’t even used. Thank you!

I am SO GLAD to hear this! Thank you so much for sending this to me it means so much to hear! I hope you’re doing well! <3

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I don’t know if you would know this but how similar are dysautomia and neurocardiogenic syncope? I was diagnosed with the latter and I’m not sure what I’m supposed to do now

Hello! So Neurocardiogenic Syncope is also known as Vasovagal Syncope, which is the name for a sudden drop in heart rate or blood pressure which leads to fainting. Vasovagal Syncope is one of the most common symptoms of POTS, which is a form of Dysautonomia. So to answer your question, they can definitely be linked together. You could start by asking your doctor if they know anything about Dysautonomia and if they do maybe get their opinion on if your symptoms match up. I would definitely just look up Dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) for yourself and see if any of the symptoms sound familiar to you. If you want to look into it further there is a whole list of doctors on the Dysautonomia International website from all over the world who are well educated on Dysautonomia. Hope this helps! 

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Hi! I have a question, hope you don't mind me asking. I've been really out of breath the last few months, when I'm just walking to get something at work or something and my colleagues joke that I'm out of shape but I feel my heartbeat like, skyrocket, when I'm this out of breath. Even when I just stand up from sitting it goes up 40 bpm and I'm kinda scared and also getting dizzy the last couple of days. Mainly I'm concerned about my heart rate but idk what to do?

Hey anon! I love getting questions! I’m sorry you’re dealing with that. I’m the same way and it can be a real pain especially if people make comments about it, but it’s usually because they don’t know any better. Do you have Dysautonomia because the heart rate increase is a classic Dysautonomia symptom. I would go to the doc and let them know what’s going on. If you’ve been diagnosed and your doctor is familiar with Dysautonomia they will most likely tell you that it’s really normal for someone with Dysautonomia to experience this and probably suggest putting you on a beta blocker. I’m on one and holy cow it makes a huge difference. It really levels out my heart rate and without it I can actually feel my heart beating, super uncomfortable, but when I’m on it that goes away! If you haven’t been diagnosed go to your doc and fill them in and see what they have to say. You could ask them if they are familiar with Dysautonomia and if that’s something you should look into. Don’t hesitate to ask if you have anymore questions! 

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Hello! I was diagnosed back in 2013 and it seems to get worse with anxiety. I’m now in college and my dysautonomia just gets worse. Have you had any experiences with Vanderbelt’s Clinic? I’m thinking of applying to go over the summer, but I’m also extremely scared. Also, what are your main symptoms?

Hey there! I personally get worse when I’m going through something really upsetting/emotional and anxiety as well so I get it. I’ve never been to Vanderbilt but my doctor did tell me that there are some really bright doctors there but he personally refers people to the Mayo Clinic in Rochester, MN. This is a really late response but if you haven’t applied I think it’s worth a shot! Most places need your doctor to recommend you, just something to keep in mind. If you have applied I hope you were able to go and get some relief! Going somewhere new for treatment is really intimidating but in the long run it’s worth the shot. 

My main symptoms are dizziness/blacking out and nausea, but I also have lots of others like aches and pains, brain fog, digestive issues, the list goes on and on. I just got referred to the Mayo Clinic and I’m not gonna lie I’m pretty scared but all I can do is think about the good that could come out of it! I hope you’re doing well, send me a message to update me if you feel like it! :) 

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I’m back!

So I’ve been gone for quite a while and I’m really sorry for all the unanswered messages, asks, and comments. My health has had me in a bad way so I haven’t been on Tumblr but I really want to get back into it! Sorry in advance for the flood of asks I’ll be answering. I’ll have some more interesting posts up soon! Hope everyone’s doing well! <3

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when your chronic illness makes you flaky as a damn croissant

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Hi, I was recently diagnosed with pots, and I've been having nausea every day, do you know if a lot of other potsies do too? My doctor says it isn't, but I'm not sure anymore...

YES. I’ve been nauseous for 7 years straight because of my Dysautonomia. I know many other people have the same problem. Dysautonomia can cause its fair share of stomach issues. It’s affecting my digestion, motility, and has even caused me to develop severe intolerances to food such as gluten, dairy, and soy. Going off all those was years of trial and error trying to figure out what would help. I’m shocked your doctor said that. Nausea/stomach problems are very common for people with Dysautonomia. Message me if you need anything! :)

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Hi!!! Thought I’d ask since I’m a little confused; I was diagnosed Dysautonomia by a rheumatologist, and the cardiologist I want to later said I don’t have POTS. They’re not the same thing, correct? I’m not sure since how people speak of them in the same breath makes it seem like they might be? Or is POTS just a form of dysautonomia?

Hi! I was confused on the same thing when I was diagnosed and I swear my mom had to explain it to me a thousand times! Dysautonomia is an “umbrella term” used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. POTS is one of those conditions. It’s very possible to have Dysautonomia, but not POTS because POTS is one of the many forms of Dysautonomia. POTS is diagnosed with a Tilt Table Test, where they measure your blood pressure and heart rate. If you’re having dizziness getting a Tilt Table Test might be the next step! Feel free to message me if you have any more questions! :)