Living With POTS: 6 month Cleveland Clinic Update

It’s official: I’ve been living with a POTS diagnosis for about six months now. So, naturally, I went to Cleveland Clinic for my six-month check-up last week.

The last time I was in Cleveland was in November for a Shared Medical Appointment (SMA), which is basically a supportive and educational group meeting with other patients living with POTS. I last saw my provider last spring when I first received my diagnosis and treatment plan. I was still in graduate school with one semester left and an entire thesis to write. Now, I’m graduated and have half of a novel written. Oh, how the time flies…

I couldn’t sleep at all the night before my appointment. Not because I was in a hotel room. Not because I was sick with a cold and couldn’t breathe through my plugged nostrils. (OK, maybe that played a role in it.) The real reason I couldn’t sleep was that I’ve been dealing with insomnia for the last 1-2 weeks.

It’s not uncommon for me to have trouble sleeping occasionally. It’s something I’ve accepted as part of living with POTS. But this current phase of insomnia has been awful. I’ll lie awake for 4-5 hours before falling asleep, tossing and turning and getting tangled in my bedsheets. I become a zombie every morning when I peel my body out of bed, staggering down to the kitchen for my daily cup of coffee like the reincarnation of Frankenstein himself. Needless to say, I added it to my list of things to discuss at my appointment.

Speaking of lists, I want to take a moment to emphasize how important it is to make a list of EVERYTHING you want to cover in your doctor’s appointments. Do you have any questions? Concerns? Remarks about your medication(s) or treatment plan? Requests for further guidance? New symptoms or relief from old ones? Write it all down, so you don’t forget anything!

I tend to get anxious before doctor’s appointments (classic white-coat syndrome sufferer here). Even when I assure myself I won’t forget all the talking points I have in mind, the anxiety and brain fog collide, and guess what? I forget. Now, I make lists. You should too.

On the morning of my appointments, I awoke with a flare-up of my symptoms. How appropriate. This wasn’t surprising, though, because I was sick with a bad cold. Living with POTS means that being sick automatically tells my POTS symptoms to kick into overdrive–even when I ask it to please not. My heart rate hovered in the 110s as I stood to wash my face and make myself look presentable. Ugh.

I didn’t get discouraged, however. I knew once the cold ran its course that I would be back to feeling better again. This was just a slew of bad days I had to muddle through. 

After my dad dropped my mom and me off at the clinic, I dragged my tired, sniffling self all the way up to the ninth floor where the neurology department is. The nerves settled in as I sat in the waiting room, and my blood pressure reflected that. Hello, white-coat syndrome!

However, I honestly have to say that my appointment was probably the best one I’ve had yet. My provider is so compassionate and funny. As soon as he walks into the exam room, my nerves feel better. He didn’t rush me, he let me go over all the items on my list, and he adjusted my treatment plan to address my current health state, along with other concerns. Plus, we laughed our way through the entire 45-minute appointment. I almost forgot that I was miserable with a cold. Almost. I sneezed about a dozen times as a reminder.

So here’s my update. To combat this new and unwelcome insomnia, I’ll be starting a low-dose beta-blocker (Propranolol) at night on an as-needed basis. The idea here is that it’ll lower my heart rate enough that I won’t feel it pounding when I’m trying to sleep. That way, I’ll be able to settle down and get comfortable, making it easier for me to drift off to sleep. Has anyone who’s living with POTS taken this drug? If so, what has your experience been like?

Next on the list: I got the OK to lower my pyridostigmine (Mestinon) dosage from 3x/day to 2x/day. How many of you take this drug and experience GI side effects? I’ve had GERD for several months, and I noticed that it started after I began taking the drug 3x/day. Once I lowered it back down to 2x/day as a test, the GERD practically vanished. My provider agreed that I could lower the dosage as long as I still feel the drug’s benefits just taking it 2x/day. So if you are experiencing similar side effects on this drug, this may be a discussion you want to have with your doctor! Hopefully, it’ll work for me long-term.

After that appointment, I had to kill about three hours until the SMA later in the afternoon. My parents and I wandered the halls of the clinic, I took some photos, we bought a plethora of snacks in the cafeteria, and then we settled in an area with comfy lounging chairs. It always amazes me how many people are at the clinic, especially the great distances some of them travel to be seen there. I drive five and a half hours from New York, but some people fly in from other countries. It reassures me that I’m in good hands on my journey of living with POTS.

The SMA was very interesting and informative. Half of these appointments are education-based, and the other half are discussion-based group work with other POTS patients. For privacy purposes, I obviously can’t share anything from the latter portion of the appointment. But I will share some of the information and tips Dr. Wilson shared in his lecture.

According to Dr. Wilson, people with POTS experience impaired vasomotor tone (how well the blood vessels squeeze), so blood pools in the legs and pelvis. Your body tries to compensate for this microcirculation by increasing sympathetic tone, which then increases levels of circulating adrenaline. All this extra adrenaline is a causing factor of the tachycardia (and other symptoms) we experience with POTS.

So, the big question is: How can those living with POTS practice self-care to tackle the effects of all this extra adrenaline pumping through their bodies?

Below are some methods we learned to help do just that.

Valsalva Maneuver

Plug your nose, close your mouth, and then try to exhale. This increases pressure in the middle ear and chest cavity, and it can equalize pressure in the ears. It helps prevent palpitations, and it will lower your heart rate after initially raising it. *Note: Do not perform this if you have heart disease.

Diving Reflex

This one reminds me of the ice bucket challenge. Immerse your face in a bowl of ice-cold water, and hold ice cubes for an extra bonus. Or, you can place cold compresses on your forehead and over your eyes if that seems more tolerable. 

Acupressure

Place light, steady pressure for one minute in the middle of your sternum at the CV17 pressure point. (You can Google this.)

Practiced Breathing

Take at least five minutes out of your day (preferably multiple times a day) to draw focus to your breathing. Focus on inhaling for three to five seconds and exhaling slowly for five to eight seconds. You may feel dizzy or lightheaded at first until you get used to it.

Meditation/Guided Breathing Apps

Apps like Headspace and Calm are excellent for finding your zen! They’re also great for beginners who’d like more guidance during meditation or deep breathing sessions. I personally love the soundscapes on the Calm app. Listening to the sound of rain or ocean waves is so relaxing. When I’m not suffering from insomnia, these soundscapes make me pass right out like a baby. There are also other apps that are free you can try! My boyfriend gets a Calm account through his work, so I just use his. But I used the free app Let’s Meditate before and liked it.

I’d love to hear about anyone else’s experiences with any of these techniques! I’ve tried SO many times to practice guided breathing, but I’m convinced I suck at it. Breathing slower makes my heart rate higher on my fitness watch, so either I’m just quirky or breathing wrong (LOL). I guess I’ll have to get better about practicing it consistently before I judge it. However, I have tried the Valsalva Maneuver, and it does work to lower my pulse. Meditation is something I’ve been told to try several times, and I do love doing it…sometimes. Other times, I can’t quiet my mind, and it’s like torture.

The biggest takeaway I took from this appointment is to make it a priority to find a moment (or two) of zen a day while living with POTS syndrome and dysautonomia.

Maybe you do other things that effectively destress you, like reading, or painting, or sitting in nature, or playing with your pet. Whatever it is, make time for it every day–even if it’s only five minutes. Consider it another action item on your daily planner that you get to cross off at the end of the day (please tell me I’m not the only one who finds satisfaction in crossing items off lists?).

So on our way back to New York, I made it a priority to destress from the nerves of the day. I plugged in my earbuds, took some cold medicine so I could breathe, and got several hours of much-needed rest.

Until next time, Cleveland! 

If you haven’t already, read My Story next where I share my journey to receiving a POTS diagnosis.

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