Below is a letter written for people newly diagnosed with postural orthostatic tachycardia syndrome (POTS). It’s also a great tool for loved ones who are interested in understanding life with an illness.
I know that things are scary right now. It is life-changing to be diagnosed with a chronic illness, and it takes a while to process the news. To be honest with you, I am still learning to accept my diagnosis. But there is always hope, and there is goodness to be found in even our darkest times.
My goal in writing this letter is to share what I’ve learned with you. I am not a medical expert, so please consult with your medical team before making any changes to your treatment. I am dividing up this letter by topic to make it easier to read in case you have “brain fog” or trouble concentrating.My story: POTS can be triggered by a trauma or illness. I got the flu in January 2014. After that, I never really got better. I was able to return to work from mid-January til March (with a lot of sick days), but things got pretty bad for me. I worked at a residential treatment center for teenagers with mental illness. Most of the nursing staff could tell I was not myself. I lost 10 pounds in about a month, I was always exhausted, I had memory issues, my cognition/decision-making skills were impaired (“brain fog”), and I was very irritable. I craved salty foods all the time. I was also sick with one cold or another that whole time. One night, I was working, and I made a simple mistake that was out of character for me. My co-workers made me take a break. Once I got alone in a conference room, I started sobbing. I just broke down crying. I was overwhelmed and felt awful. I let my supervisor know that I couldn’t stay for the rest of my shift. She’s an RN, and she knew I was unwell, so she graciously let me go home. I was never able to return to work. It has been heart-wrenching for me. Weeks of sick leave turned into months, and then my short term disability was over. I was “let go” due to benefits running out. If I am well enough to work in the next few months, they said they would be willing to hire me back. Right now, I just don’t think that’s realistic for me.I was (mostly) bed-bound for a few months. I was exhausted all the time and I could barely keep my eyes open. I couldn’t have very long conversations because I would run out of breath and experience chest pain when I spoke. All I was able to do was watch TV, eat, and sleep. I struggled to shower because standing and lifting my hands above my head was painful. I used an ice pack on my chest, but I couldn’t get the pain to go away. I didn’t know that a high heart rate was causing the chest pain because my doctors never looked closely at that part of my vitals. Once they saw my heart was anatomically healthy, they dismissed my chest pain.I was informally diagnosed with POTS in April 2014. Before that, I had a terrible ER visit. I’ll spare you the details, but I was dismissed as overly anxious and I felt belittled by the staff that treated me. Thankfully, my nurse practitioner saw was determined to help. I went through a battery of tests, which took a good amount of time. I had a sleep study and a narcolepsy test done to see if I had a sleep disorder, but nothing but insomnia was found. I had a few chest x-rays, blood work, and more EKGs done. Finally she did a “poor man’s tilt table test” out of desperation. She took my vitals laying down for 3 minutes, then sitting for 3 minutes, then standing for 3 min. My heart rate went from 95 sitting to 150 standing, and my blood pressure was low. She referred me to a neurologist and he did a normal tilt table test to confirm the POTS. I became tachycardic very quickly after being moved upright. I actually had to end the test early because I was afraid I’d pass out. My neurologist also did an MRI of my head/spine and I had an event monitor for 30 days.
Doctors and communication: When my symptoms began, I had a family doctor who didn’t believe that I had anything unusual going on. I’d dealt with fatigue and anemia for years, but she just didn’t believe that a healthy-looking 20-something could be ill. I was shuffled around her practice, from doctor to doctor, since she was rarely available. I decided I needed to see someone else. I talked to a few friends about their doctors, and I started going to a local nurse practitioner.It’s really important to find a medical provider that you trust. My NP has never doubted that I know my body better than anyone else. She listens to me and takes me seriously. She saw my rapid decline first-hand and she trusts that I will be honest with her. Before I visit with any medical professional, I make a list of my most troubling symptoms and my top concerns. I take the list with me since I tend to easily forget things. I have found that the more specific I can be, the better. I try to specify when certain symptoms began, if there’s anything that triggers them, the intensity, etc. I also keep a log of my blood pressure, temperature, heart rate, and what I was doing before I taking my vitals. At first, I took a reading every day. I varied the time of day and activity so that my doctors would have some variety. Now I take a reading every few days, or whenever I am symptomatic. I record all of it on a sheet in a binder.After a few terrible Urgent Care and ER visits, I have developed a system. I have “Medical Preferences and History” document saved on my computer that has all of my basic information to give to medical staff in case of emergency. It makes it much easier to have it on paper so that I don’t have to remember everything in a crisis. I also have an accordion folder that has separate sections for medical records, medical bills, insurance statements, work disability paper work, etc. I take the accordion folder with me to every appointment and I keep my “Medical Preferences” document in the front of the folder. I also have a keep a copy of a “Medical Professionals Guide to POTS” in the folder to give to medical staff unfamiliar with my condition. Here’s the website for helpful handouts: http://www.potsuk.org/download_pots_leafletsSodium and Fluids: I drink about 64oz of Gatorade or Nuun drinks a day, and I also drink about 36-40oz of water. That’s a total of about 100oz/day. I had an app on my phone to track my fluid intake until I got used to it. It’s a lot to drink, and I go to the bathroom a lot. I also take 2-4 Thermotabs a day. They are an over-the-counter sodium/potassium supplement. I order mine online. Taking the Thermotabs helps me get enough sodium without over-salting my food.Driving: I don’t do a lot of driving these days. For a while, my neurologist limited my driving because I was dealing with feeling lightheaded and dizzy most of the time. I also deal with brain fog, which impairs my ability to make quick decisions. Right now, I drive short distances every once in a while. I make sure to plan ahead and hydrate a lot the day beforehand, and I don’t drive if I feel unsteady. I have to ask for help to get to and from a lot of my appointments. My goal for 2015 is to be able to drive 10-15 minutes on a regular basis.I hope that I’ve been able to help you as you start the journey of living with POTS. Please let me know if you have any questions about managing this illness. I am always happy to share what I’ve learned to help other people.Sincerely,Danielle(Just another POTS patient)