It’s still October and that means it’s still Dysautonomia is awareness month! We wanted to do a follow up from our latest post, I think I have POTS now what and explain what to do once you finally get a POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis.
Em: Luckily, we got diagnosed with POTS at different times (Kate was first) so we only went through that whole process of ‘what is this??’ only once. By the time I was diagnosed, I had already learned a lot about the condition by watching Kate deal with it for years.
Even though we have both had a proper POTS diagnoses for years now, it still can get overwhelming at times. It’s a condition that is hard to get on top of because all aspects of life can send the symptoms into a spiral. On bad days, it seems like we’re constantly playing the guessing game, ‘Did I do too much? Drink too little? Work out too hard? Not sleep right? Eat something that’s making my Mast Cell worse which in turn is making my POTS worse? Or am I just getting sick with a regular ol’ virus?’.
The flurry of questions that accompany a flare up are nothing compared to getting this new diagnoses which be overwhelming. (Actually as with many diagnosis, it can also be a relief ). If you just found out you have POTS and have no clue about next steps, we comprised a little list of where to start…
Get a doctor
Obviously, this is the most important step of the whole list. Unfortunately we have found that a high number of doctors (and a crazy high number of ER doctors!) are not well versed in POTS or don’t even know what it is. Try to find a POTS specialists if you can, or at least a cardiologist who is very knowledgeable about the condition; POTS is tricky and getting the right cocktails of medications is vital.
Stash up on your favorite electrolytes and salt pills
POTS patients generally have less blood volume than a healthy person, so our goal is to ‘pump up’ our blood volume to keep our blood pressure more normal. How do we do that? Fluid and salts! Remember, it’s a balance, if you drink too much fluids with no salt, the fluid wont have anything to hold on to and you’ll just flush out your electrolytes.
If you’re in school, get a note from your doctor, make copies, and bring it to all your teachers
Having POTS will likely make it hard to keep to a strict schedule and you might end up missing your fair share of classes. Let your teachers know and get them a doctors note as soon possible so they’re aware you’re dealing with a medical condition that is responsible of your absences.
Get compression pants and socks.
Your blood doesn’t circulate as it should with POTS. Instead, it pools in your legs because our blood vessels can get lazy and won’t push the blood up to the top half of your body. Compression pants and socks help fight against blood pooling and any accompanying swelling. Check out our list of our favorite compression pants here.
Tell your friends and family
A support system is so important. POTS is a tricky one to understand – It’s very ‘good one day, suddenly bad the next’ and it can easily make you seem flaky or unreliable if people don’t know the reasons behind your absences. Don’t be afraid to explain in great detail what is going on with you and send medical articles about POTS to the ones you care about, so they can try to understand it as well as possible
Have items to help with your temperature regulation.
Did you know having POTS can make it harder to regulate your temperature? Actually, as I write this post, I have a hot water bottle on my lap even though the temperature is in the high 60’s. I’m constantly cold, and Kate overheats really quickly. To combat this, we keep hot water bottles, electric blankets, and cooling cloths close by to help
Get a work out regime in place
At the Mayo Clinic, they stressed the importance of an exercise regimen for POTS maintenance. Exercise helps train your blood vessels to not be lazy and to ‘push’ the blood back up to the top half of your body. Start extremely slowly and only increase by a minute each day, even if you feel like you can do more. This helps avoid crashes due to overexertion.
Take your sleep hours very seriously
Having 6 hours of sleep versus 8 hours of sleep can greatly affect your POTS for the following day. Insomnia is often a symptom associated with the condition due to high adrenaline and tachycardia, and sticking to a schedule can help train your body to start winding down at the appropriate time. This is something we struggle with because our adrenaline often spikes at night, but we try to block out at least 8 hours a night where we have the time to sleep, to give ourselves a better chance of feeling good the following day.
If you have symptoms of Mast Cell, ask your doctor about it
For the first few years of having POTS, we didn’t know what Mast Cell Activation Disorder (MCAD) was. There’s a big correlation with people who have POTS and who have MCAD, though this is not well known. Basically, with MCAD, you don’t break down histamine properly so your body acts like it’s having an allergic reaction to seemingly random foods, and this makes your POTS flare up. Read more about it here, and if this sounds like you, be sure to ask your doctor about Mast Cell Activation Disorder . Getting ahead of our MCAD has drastically improved our POTS.