So, You Just Got Diagnosed With POTS...

So, You Just Got Diagnosed With POTS...

8 tips for dealing with your latest diagnosis.
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What even is POTS?

POTS: Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia that affects between 1-3 million Americans and millions more worldwide. "For those of you who may be thinking "dysauto-what?"--dysautonomia is an umbrella term used to describe different medical conditions that cause a malfunction of a person's autonomic nervous system" (Dysautonomia International).

If you just got diagnosed with POTS, it's probable you've heard of it before. It's likely you've struggled for years with undiagnosed symptoms and done a fair amount of research on what might be causing your symptoms. But whether or not you've read about POTS or heard the term Dysautonomia before, I have some tips I want to share with you. I was diagnosed with POTS (as well as vasovagal syncope) last week, so I've put together a list of the things that have helped me start to cope and deal with this diagnosis.

1. Watch this video.

This video--a four-minute summary of POTS put together by Dysautonomia International--made me cry the first time I saw it. The very fact that the doctor said, "Just because someone doesn't look sick doesn't mean they aren't sick" is still amazing to me.

2. Remember that you don't have to tell everybody all at once.

Not a lot of people knew I was having a tilt table test, but everyone who did, of course, wanted an update. A few days after I was diagnosed, I was around a lot of people who asked how I was doing and what was new health-wise. I found myself telling or texting the same story over and over again, and it got to be too much. It's okay to just say, "I'm hanging in there," and not go into a full update. Not everyone needs to know, and it's your right to decide who you tell and who you don't.

3. Don't be afraid to ask people to stop talking to you about it.

My family is fantastic, and they care so much about me. I know that, and I truly appreciate them. However, their care became manifested in constantly talking about POTS and what I could do about it and how to "fix it" or make me better. Every conversation for days after my tilt table test seemed to be filled with POTS, POTS, and more POTS information. After one particular conversation, I realized I hadn't been able to think about it for myself, and I just needed time and space. My therapist told me that I really needed a break and that it was okay to need space and to ask people to not talk about it with me. I asked my mom if we could "take a break from POTS" (as far as talking about it; if only my body would take a break, too), and she graciously agreed. So, I'm here to tell you it's okay for you to do the same! Tell those close to you that you're not asking them to stop researching your diagnosis if they want to, but you are asking them to stop passing any information along or engaging in conversation about it. Set a time frame, and let them know when they can forward you any links or resources they've found.

4. Let yourself cry about it.

You should also know that it's okay to cry about it. It was odd for me to realize I needed to grieve my new diagnosis. I had been expecting it. It wasn't a surprise. So, why did I feel so panicky and sad? I think there was still a part of getting a POTS diagnosis that was surprising for me. I've gotten so used to doctors saying, "Nothing is wrong; you're fine," that to have one look at me and say, "Yes, you're sick," is still kind of shocking. My diagnosis was a huge reminder of the reality that I am sick, and I needed to take time to process that. I honestly still do, and I'm learning that that's okay, too. So, let yourself breakdown, cry, get angry, or all three at the same time. Whatever way you need to grieve (as long as it's a safe way!), let yourself go there.

5. Do your research to find out what will help YOU.

While there are a number of things that seem to help all POTS patients, you will also hear a lot of conflicting information. "Never have caffeine again." "Caffeine helps some patients." "Cut gluten out right now." "Diet may not be as important." "Drink only water." "Any fluid is helpful." "Eat potato chips for salt intake." "Don't ever eat starches again." And so on and so forth. Research what other people have found to be helpful, and try things out. It will probably take time to find what helps you feel the best. Don't get overwhelmed with all the information and try to immediately implement everything everyone says will help. Instead, slowly work to find what helps you.

6. Start by implementing the things that are generally helpful for everyone.

It's been proven that increased fluids are a good thing. Grab some vitamin water or an infuser water bottle to help bring flavor to your fluids. Increased salt is a good thing, too, so slowly increase the amount of salt you eat or take salt tablets. Ask your doctor for the best way to go about increasing salt. Compression socks are also highly recommended. Here are some of the cutest ones I've found.

7. Check out these resources.

POTS is becoming more and more recognized in the medical community, and there are some great resources out there. Here are my current favorites:

Dysautonomia International: a "non-profit founded in 2012 by patients, caregivers, physicians, and researchers dedicated to assisting people living with various forms of dysautonomia."

The POTS Center: "This guide – which we’re calling the POTS Center – is intended to be the most comprehensive online resource on POTS."

POTS - Together We Stand: Riding the Waves of Dysautonomia by Jodi Epstein Rhum: This is pretty much a "survival guide" to POTS, written by a mom of three chronically ill children, including two who have been diagnosed with POTS.

Postural Tachycardia Syndrome (POTS): All That You Need to Know by Fhilcar Faunillan: I haven't started reading this one yet, but we ordered it, and it looks like a good guide for POTS patients and their families, friends, and doctors.

8. Know that you will be okay.

I know chronic illness is a hard, scary, overwhelming thing to face, but you're facing it. You're doing the hard thing, and you're doing it well. Now that you have an answer, you can treat your illness and manage your symptoms in a more knowledgable and hopefully effective way. Don't give up now. There is hope.

Cover Image Credit: Oles Kanebckuu

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8 Reasons Why My Dad Is the Most Important Man In My Life

Forever my number one guy.
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Growing up, there's been one consistent man I can always count on, my father. In any aspect of my life, my dad has always been there, showing me unconditional love and respect every day. No matter what, I know that my dad will always be the most important man in my life for many reasons.

1. He has always been there.

Literally. From the day I was born until today, I have never not been able to count on my dad to be there for me, uplift me and be the best dad he can be.

2. He learned to adapt and suffer through girly trends to make me happy.

I'm sure when my dad was younger and pictured his future, he didn't think about the Barbie pretend pageants, dressing up as a princess, perfecting my pigtails and enduring other countless girly events. My dad never turned me down when I wanted to play a game, no matter what and was always willing to help me pick out cute outfits and do my hair before preschool.

3. He sends the cutest texts.

Random text messages since I have gotten my own cell phone have always come my way from my dad. Those randoms "I love you so much" and "I am so proud of you" never fail to make me smile, and I can always count on my dad for an adorable text message when I'm feeling down.

4. He taught me how to be brave.

When I needed to learn how to swim, he threw me in the pool. When I needed to learn how to ride a bike, he went alongside me and made sure I didn't fall too badly. When I needed to learn how to drive, he was there next to me, making sure I didn't crash.

5. He encourages me to best the best I can be.

My dad sees the best in me, no matter how much I fail. He's always there to support me and turn my failures into successes. He can sit on the phone with me for hours, talking future career stuff and listening to me lay out my future plans and goals. He wants the absolute best for me, and no is never an option, he is always willing to do whatever it takes to get me where I need to be.

6. He gets sentimental way too often, but it's cute.

Whether you're sitting down at the kitchen table, reminiscing about your childhood, or that one song comes on that your dad insists you will dance to together on your wedding day, your dad's emotions often come out in the cutest possible way, forever reminding you how loved you are.


7. He supports you, emotionally and financially.

Need to vent about a guy in your life that isn't treating you well? My dad is there. Need some extra cash to help fund spring break? He's there for that, too.

8. He shows me how I should be treated.

Yes, my dad treats me like a princess, and I don't expect every guy I meet to wait on me hand and foot, but I do expect respect, and that's exactly what my dad showed I deserve. From the way he loves, admires, and respects me, he shows me that there are guys out there who will one day come along and treat me like that. My dad always advises me to not put up with less than I deserve and assures me that the right guy will come along one day.

For these reasons and more, my dad will forever be my No. 1 man. I love you!

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I Stopped Taking My ADHD Medication And It Made Me 10 Times Happier

Many people with ADHD choose to medicate to manage their symptoms, but that choice is not without any negative side effects.

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When I was 7 years old, I was diagnosed with attention deficit disorder.

I was in the third grade and falling behind in nearly every subject and my teachers were losing hope. I endured several weeks of testing before being diagnosed, but even more weeks of medication testing after I was diagnosed. Once it had been determined that I responded positively to medication, I began taking Concerta.

I took Concerta every day from fourth grade on to my freshman year of college.

About every three years, I would start taking a stronger dosage and every time my dosage increased, I experienced more and more negative side effects of the drug.

Common side effects people experience when they take ADHD medications are altered personalities. The meds make you feel more reserved and uncomfortable. You are constantly on alert and this makes one feel very self-conscious. Another side effect of ADHD meds is suppression of identifying personality traits and strong emotions. Many people, including myself, report feeling robot or zombie-like. All of these side effects disappeared when I stopped taking Concerta.

Around the beginning of my first year of college, I considered stopping medicating.

College is a fresh start and I was beginning to wonder what not medicating would feel like. I had become so used to the way Concerta made me feel, I did not know what it felt like to truly be myself. So, after being medicated from 2008-2017, I stopped taking my ADHD pills.

At first, I didn't feel much of a difference, but as time went on I began feeling happier. I found myself to be more outgoing and social. I have always been considered a warm, approachable person, but this was different. People began commenting on how often I was smiling, my friend group was expanding, I began feeling more confident in myself and speaking in public.

During the fall semester of my sophomore year, I began experiencing the symptoms of my ADHD on a whole new level. I was having extreme difficulty paying attention in class, trouble completing all my assignments in a timely fashion, forgetting simple things, and more.

I felt like my grades were suffering and I was worried not medicating was compromising the quality of my education because I no longer had pills to help me manage my symptoms, so I started medicating once again.

At the start of my sophomore winter semester, I began taking Concerta again in hopes my educational experience would improve. While school was easier to manage, I could not stand the way the meds were making me feel. I experienced intense migraines, loss of interest in any/all activities I once enjoyed, I stopped eating, and my friends often commented on how dull I seemed. Due to all the negative side-effects of starting my medication again, I got rid of them for good.

Over a year has gone by since I first made the choice to give up my medication.

School is a lot harder and paying attention takes significantly more energy, but I would not trade any of my ADHD struggles for the feeling of finally being free from the methylphenidate based drug used to treat my disorder. For the first time since third grade, I feel like myself and I am proud of who I am and who I am becoming.

Editor's note: The views expressed in this article are not intended to replace professional medical advice, diagnosis, or treatment.

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