Growing With POTS
Read about members of our community who have shared about some of their experiences with POTS. They are all amazing! Always accepting new submissions to share, if interested, you can access the submission form here.
+ 
Click here to read about our community member, Jamie 
What was your journey to getting diagnosed like for you?
I got sick at 16, six months after receiving the HPV vaccine. I went to the doctor and was completely ignored and told it was probably anxiety I was in high school anxiety is normal. I spent the next 12 years going to doctor after doctor and being told everything from these symptoms are normal for females to being told I was crazy. In April 2021 I passed out at work and that was the final straw for me I had to find a doctor who would help me. Through a friend's recommendation I saw a new doctor at the first appointment he told me "you have been sick for too long we are going to figure this out" It took six months of test and appointments with specialist but in October I went in for a follow up and the doctor said "you have POTS".
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
It kept taking everything from me; my jobs, my friends, my livelihood. I was tired of losing everything and not having an answer for why one day I could do something and the next day I couldn't. Sharing my journey through all of this has helped me find purpose.
What or who has allowed you to grow with your POTS diagnosis?
Social media has allowed me to grow with my diagnosis. I am able to share my story to help others and get to learn from others as well.
What is one phrase or saying that encourages you the most?
I can do a lot, but I can't do it all.
+ 
Click here to read about our community member, Sam
What was your journey to getting diagnosed like for you?
I passed out in an elevator when I was 18. Just a few days before starting college. At 19 I was diagnosed with Vasovagal Syncope, and told I would grow out of it. I knew there was more, and adding salt didn't fix it like the doctor had said. At 20 I moved from California to the PNW where I accumulated many invisible illnesses. Yet this "dizziness" persisted in ways that made me keep questioning. At 24 I finally got my diagnosis from a Naturopath located in Washougal, Washington. Between the two diagnoses I finally felt settled, relieved even.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
There's nothing more motivating than that feeling in your body. The one that tells you you're not safe to carry yourself. That anxiety every time an episode occurs, but all your tests are negative. Even when I had doctors who believed me. Their shock mirrored my own with each negative test, but when I walked out of those appointments it fueled me. I knew my body was trying to communicate with me, I just had to figure out how. This was also a source of motivation, because it felt like a puzzle. Of course I was not simply matching colors, I was trying to find out why I would fall out of bed or why my vision would turn white, but a puzzle nonetheless. Finding purpose is an interesting question. I would say educating people, and showing them that I have found ways to function.
What or who has allowed you to grow with your POTS diagnosis?
The naturopath who diagnosed me absolutely makes this list. Without her I would still have that terrifying unknown feeling. My dog is also a very important factor. She has no formal training, but I have had her since she was nine weeks old so we've learned everything together. She's 7 now, but from a young age she would nudge me before I happen to get dizzy. She will sit on my feet if I try to get up too quickly, reminding me to sit back down. I rely on her, and by studying how she interacts with me, I've learned to pay attention to my own body's cues. Also: An abdominal wrap, a blood pressure cuff, ice packs when it's hot during the summer, and a couple supplements.
What is one phrase or saying that encourages you the most?
You can only control what you can control.
+ 
Click here to read about our community member, Jess
What was your journey to getting diagnosed like for you?
Getting to this diagnosis was so full of twists, turns, long nights, and upsets. Being told over and over that "it's just stress" or "you don't look sick" especially by medical professionals made me feel like the very real symptoms and limitations I experienced daily were all in my head. I questioned my own sanity. I distrusted myself which throttled me into a long, deep depression.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
Validation that what I'm experiencing is REAL has helped light a fire under me to keep searching for answers. It's empowered me to share my story so that others who might be feeling what I did for so long -- that it was all in my head -- may feel seen. I want to lift up the voices of others so that one day, no one will leave a 50th doctor's appointment where they've been told that they're just a young, anxious woman, or some other demeaning and deflating dismissal, and that what they're experiencing is REAL and isn't their fault.
What or who has allowed you to grow with your POTS diagnosis?
I have a few very supportive friends and family members that have been pillars of strength for me in adjusting to life with POTS. Realization that this wasn't/isn't my fault took a long time, but once I accepted that, I started to grow again from dormancy.
What is one phrase or saying that encourages you the most?
This is not your fault.
+ 
Click here to read about our community member, Arrow
What was your journey to getting diagnosed like for you?
It took a while because not a lot of doctors believed me. I was diagnosed at 14 but the first time i have record of experiencing symptoms was when i was in preschool and started fainting. I was always told I would grow out of it, and I never did, it just got worse.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
Talking to other people and friends who also have POTS, because not only will answers help me, but it could help other people.
What or who has allowed you to grow with your POTS diagnosis?
My mom!
What is one phrase or saying that encourages you the most?
“Being brave doesn’t mean you’re not scared. It means you are scared but you’re hanging in there.”
+ 
Click here to read about our community member, Monique
What was your journey to getting diagnosed like for you?
I was misdiagnosed at 10 years old when I first exhibited symptoms so I had to wait 20 years to finally find out what was going on with me. I got here only because a friend of mine recognized my symptoms and told me to talk to my doctor about it. Without her I don’t know where I’d be, gaslit or treated for just anxiety or depression, who knows. It has been an emotional roller coaster to look back at two decades of my life through this new perspective, how I had been comparing myself to people who were just healthy for years, and realizing the things that are off the table for my future now.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
I was having migraines 5 days a week and existence was just suffering, I got very scared when I found myself thinking that if this is what life was going to be like I didn’t want to exist anymore. It made me push for more appointments and trying chiropractic and physical therapy options.
What or who has allowed you to grow with your POTS diagnosis?
I’m trying to grow, but I think it’s still happening all underground for now. I am applying for disability to relieve financial stress but for now I struggle just to work 10 hours a week to pay for the basics. I’m helping the people in my life understand more about it which makes things a little easier on me. I hope to pursue being a writer and making art to support myself on my own schedule and work around migraines and flares and not be responsible for anything my brain fog can royally mess up. I’m still in the struggling stages of trying to put down roots.
What is one phrase or saying that encourages you the most?
Since POTS needs you to take a lot of sodium, I like to say I’m “Worth My Salt”, I still have value and I’m worth the effort to care for myself.
+ 
Click here to read about our community member, Eliza
What was your journey to getting diagnosed like for you?
It was very long, I started with fatigue, and loss of appetite, and a visit to the A+E department with an acute breathing attack, I was sent home about 3 times from my GP, telling me it was a virus, then given antibiotics as he said it then may be a bacterial infection, of course they only made me feel worse. After about 3 months, I was withering away at my friend's house, they basically saved my life as they made sure I got to the hospital, telling me not to leave until the Dr's told me what was wrong with me, at that point I was skinny, having night sweats, terrible pain in my abdomen area, couldn't keep food down and anything I could eat gave me diarrhea. I was in the hospital for an undetermined amount of time, I honestly don't remember, I was fainting all the time as I had anaemia and lost track of time. The Dr's tested me daily, blood tests to find out what was wrong with me. They initially diagnosed me with Churg Strass Syndrome, then changed it to Epstein Bar Virus, then after a kidney biopsy and bone marrow extract, which was excruciating, they finally diagnosed Wegners Granulomatosis (now called Polyangitis Granulomatosis). They started me on Steroids upon admittance to hospital, but with the diagnosis they increased the dose to a higher amount and introduced Cycophosphamide, which I found out later was oral Chemotherapy!! They never told me and I thought it was just a part of my illness that my hair started falling out! I gradually started to feel better, but the drugs gave me lots of side effects, the worst of which was steroid induced psychosis. For which I was restrained and admitted to a locked psychiatric ward and given antipsychotic medication to counter the effects of the steroids!
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
My life on medication lasted from 1997-2014, during this time the side effects I experienced motivated me to look for an alternative. In 2005 I had to give up my job due to the severe side effects, and with the help of some friends I went on a quest to find answers, I had homeopathy, then Bio Resonance, it took 4 years of the latter treatment to bring my blood levels back to normal, I spent all of my benefits on this treatment. It was worth every penny though. In 2015 my blood levels had returned to normal ( I have the documents and blood work to prove this) and I felt well enough to go back to work. Having trained as a psychiatric nurse from 1999-2003 I didn't want to go back to nursing as I no longer relied on medical drugs for my health. I started window cleaning with my husband and trained to come a masseuse which is what I now do, along with working as an online health coach, guiding and supporting other chronically ill sufferers to enhance their level of health at their own pace. The only medication I currently take is for high blood pressure. After going vegan and taking herbs and doing bowel cleanses my health is better that in was when I was a child. I had chronic asthma, ezcema and allergies as a child and so now feel the best i ever have, no allergies/ asthma and only minimal ezcema on my hands.
What or who has allowed you to grow with your POTS diagnosis?
My friends, if it were not for them, I would have probably died of kidney failure back before my diagnosis, as I had no energy to get myself to the hospital. Also friends who suggested that I try traditional medicine, I was not previously a believer in holistic medicine, but the proof is in the pudding so to speak and my new level of health speaks for itself!
What is one phrase or saying that encourages you the most?
It is health that is real wealth, not pieces of gold and silver - Mahatma Ghandi.
+ 
Click here to read about our community member, Julianna
What was your journey to getting diagnosed like for you?
I've lived with POTS my whole life and never realized what it was. In my early teens, my symptoms became increasingly worse and could not be ignored. My doctors told me all my random symptoms could not possibly be related and after lots of appointments and tests the doctors told me there was nothing abnormal. Finally, after some late-night research, my mom diagnosed me and scheduled me a tilt table test with a neurologist just to prove it. Sure enough, she was right :) yay mom!
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
The days I can't get out of bed makes me so frustrated it motivates me. I just want to feel good and I know it's possible. I believe there's a way to heal from POTS especially through creating a healthy lifestyle. It may take time and lots of experimenting to find what works for each person, but I am slowly learning how my body responds to certain things and that's a huge step. Taking tons of meds for the rest of my life is not the answer (at least not for me). Imagining a life where I feel energized, healthy, and at peace is the ultimate goal and that goal is my motivation.
What or who has allowed you to grow with your POTS diagnosis?
My sister. We both have POTS :') It's a struggle, but we are able to share our experiences and tips and tricks with each other. We never have to explain anything because we both know what it feels like to live with.
What is one phrase or saying that encourages you the most?
It's okay (if you need to take rest, if you couldn't make it to class, if you weren't productive today, if you had to cancel plans etc). It's okay.
+ 
Click here to read about our community member, Rosemary
What was your journey to getting diagnosed like for you?
When I was around 5 I started struggling with dizziness, fatigue, nausea, heart palpitations, loss of vision… but I was so young I couldn’t put words to what I was feeling. My mom took me to many doctors and they all said it was just having anxiety. By the time I was 10 I was in counseling and on medication for anxiety, OCD, and depression. I was having panic attacks every time I got dizzy because nothing could stop it. I was terrified of being dizzy. I got really depressed because nothing they had me do or take was helping me. I felt so trapped. One day, a few weeks after I turned 15, I had a really bad dizzy spell. Everyone was telling me it was anxiety but I knew something else more serious was going on. It was one of the longest spells I’ve had. My aunt actually has decided Mia and she told my mom I had very similar symptoms to what she was dealing with. My mom took me to my pediatrician. turns out, he actually specialize in Dysautonomia. They did LOTS of blood work. He sent me to a Dysautonomia clinic where I was tested. I did the tilt table test, and as they were tilting me up the nurse said “I can’t tell you this.. but you heart has jumped over 50 bpm and you haven’t even been tilted all the way. You have POTS. I was relieved and terrified. But I knew this was a gift from God.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
I had always longed for feeling “normal”. I would see my family live life and get to do things I couldn’t do, and as a child dealing with these things I didn’t understand what was happening and what was wrong with me. I was tired of feeling sorry for myself and living in fear. I started fighting. I have fought for answers for as long and I can remember. When I found out what was wrong, and that what I was feeling was real, I had so much more grace for myself. I’m sick!?!? It’s ok not to be ok everyday. Entering this stage of treatment for POTS, I’ve had to realize there is no such thing as normal. I don’t need to compare myself to a healthy person. I have my own goals and small wins. I hope to someday help other with POTS find relief and purpose through their illness.
What or who has allowed you to grow with your POTS diagnosis?
My Mother has been so amazing through this journey. She has given me so much grace in finding my new “normal”. Making water for me, Bringing me my meds, crying with me, fighting with me, loving me the best she could. She has helped me find what works and what doesn’t. I’m so grateful for her. She encourages me to grow.
What is one phrase or saying that encourages you the most?
“Just because I could yesterday, doesn’t mean I can today. Just because I can’t today, doesn’t mean I won’t be able to tomorrow."
+ 
Click here to read about our community member, Meredith
What was your journey to getting diagnosed like for you?
I had POTS symptoms for years but all my doctors told me it was anxiety or my chronic migraines. In January of 2020 I passed out and landed in the ER. The doctor told me I had a panic attack and discharged me without any testing other than taking my blood pressure (which was high). I was incredibly upset because I know my own body and was sick of my problems being dismissed as panic attacks. Upon follow up with my neurologist, I told her that I knew something was wrong and this was more than anxiety and migraines. She took me seriously and ordered testing. I first had an EEG, then an MRI and EKG. After those I was given an autonomic neuro lab, which was how I was diagnosed. The whole process took about 7 months.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
The thing that motivates me is knowing that I survived years of POTS without even knowing I had it.
What or who has allowed you to grow with your POTS diagnosis?
I feel I have allowed myself to grow with my POTS diagnosis. I have not let this illness define me or stop me from anything. I started college and moved across the country this fall, which is something I never thought I could do while being chronically ill.
What is one phrase or saying that encourages you the most?
I didn’t come this far to only come this far.
+ 
Click here to read about our community member, Sarah
What was your journey to getting diagnosed like for you?
I had to get an ambulance out at work, due to an episode, the overnight stay in hospital was traumatic - my care and diagnosis was straightforward afterwards. Lost my job though.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
It was like a light switch had been turned on, suddenly I couldn't stand without feeling dizzy, or vomitting, I couldn't be left alone. I needed answers otherwise I wouldn't have been able to complete my degree.
What or who has allowed you to grow with your POTS diagnosis?
Medication. I'm fairly stable now. Understanding partner. Understanding GPS. Understanding employers. Understanding my limits.
What is one phrase or saying that encourages you the most?
I'm not sure I have one. Just understanding and awareness.
+ 
Click here to read about our community member, Kirsty
What was your journey to getting diagnosed like for you?
Very hard. I had to go private as my gp wouldn’t refer me to the NHS and have had all sorts of issues getting gps and private to communicate. When I was like 14 I went to my gp for dizziness/vertigo and was told to do more cardiac exercise. I was doing at least six days of sports a week at that point! Late last year my osteopath suggested I get checked out for POTS, so she wrote a gp letter, who wouldn’t refer to NHS so we asked for private. The first private doctor I tried did a blood test, echo and 24hr ecg. Blood test was clear, so was echo, but apparently nothing was wrong with my ecg (even though when I stood it recorded pulses of over 170). He talked down to me and belittled me, and would only talk to my mum (who I'd brought for emotional support and knew hardly anything). I even started crying at one point as I wasn’t listened to, and he said I was being too emotional. I left with nothing, and my mum was now doubting me because of what he said. Months later we saw a different dr and I took my dad, who was there to back me up and make sure the dr listened to me. He was sceptical because of the notes from the previous dr but referred me for a tilt test. The tilt test nurse seemed to be more knowledgeable and professional than all the doctors. I then went back to the cardiologist after the test was analysed, and he kept us for half an hour talking about mostly irrelevant things. At the end he diagnosed me, and sent me off without any care except instructions to drink more water and salt. We then had to request for him to send the diagnosis to the gp, and we didn’t even get sent a copy of the letter or anything! We had to request that separately, which took ages.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
Social media and the stories from others, also my wonderful osteopath, and of course my being fed up from dealing with incompetent doctors who are supposed to help with your issues.
What or who has allowed you to grow with your POTS diagnosis?
My osteopath, and lots and lots of research. Also the knowing that I have an answer for why I’ve been struggling.
What is one phrase or saying that encourages you the most?
Pain only makes us stronger, and whatever it takes. Both from marvels Natasha romanoff.
+ 
Click here to read about our community member, Liu
What was your journey to getting diagnosed like for you?
It was horrible. It took me 2 and a half years for my pain and concerns to be validated. Mental breakdowns and panic attacks in the doctors offices for the amount of medical gaslighting I received. My parents at one point thought I was making it up for attention, I feel like a part of them still believes that.
During your journey with POTS, what has motivated you to fight for answers and what has helped you find the most purpose?
To be honest I have no idea, part of me thinks I just wanted to prove to everyone around me I was not going insane. Because the fatigue and pain I have to go through every day is very real, and I knew it, even when everyone around me told me it wasn’t.
What or who has allowed you to grow with your POTS diagnosis?
I feel like I'm nominated for some award and I have to thank the people that have helped me with this grabs the trophy. Well first I'd like to deeply thank my psychologist, seriously, would not be alive without her. Next off I have my mother and siblings, they help me every day, validating my feelings and helping me understand that this is not the end, and I will (hopefully some day) be ok. :) Up next is music. Music in general. I get to put on my headphones on blast, and forget all about my surroundings and problems. Last but definitely not least, my sweet creature, Mr. Harold Styles, (my dearest teddy-bear) named after the one and only, he goes with me to my doctor appointments, my hospital visits, and my IV treatments, he has helped me through a lot and im so incredibly thankful to have such a great inanimate bear in my life :)
What is one phrase or saying that encourages you the most?
Well as you might have guessed, I'm a huge Harry Styles fan, so a phrase I repeat to myself when I feel like I'm never gonna be ok is "we’ll be alright."