As always this blog isn’t meant to replace your doctor!!! These are from my own experiences and observations and may not be for everyone. All of these things are meant to be done under the guidance of a heath care professional (doctor, nurse practitioner, physical therapist, etc).
POTS (a type of dysautonomia) involves symptoms like fatigue, dizziness, fainting and a high heart rate when standing up. Along with MCAS, it’s very common among those of us with hEDS!
Many treatments for POTS are focused on increasing the blood volume (and blood pressure) so that the brain gets enough blood when you’re standing up. Here’s where The Levine Protocol comes into play.
CHOP (Childrens Hospital of Philadelphia where I used to do congenital heart disease research in undergrad!!!) created a PDF to help patients understand the Levine protocol a little better.
Salt Tablets and fluids:
I’ve bought these 1gm salt tablets and use them religiously (explained in section 3.1 of this paper). It’s super important that you drink more fluids AND take more salt. This is to increase your blood volume so you have high enough blood pressure when standing up. Not enough salt and you’ll just pee out the extra fluids. Not enough fluids and… well the point is to increase your blood volume and you can’t do that without fluids.
I’d recommend starting with one 1g salt tablet a day with an extra water bottle for a few days and see how you feel. If it doesn’t upset your stomach after a few days increase to one tablet in the morning and one at night. SLOWLY increase to 4-5 tablets (the paper above recommends 3 L of fluids a day and 10 grams of sodium which I have to assume includes all the regular food you eat). If your pee is clear and you’re annoyed by having to pee every hour cut back on the water a bit.
It’s also important to keep in mind that many POTS patients find that salt works for a few months and slowly stops working. I haven’t found any research on this. This has just been my personal experience and that of some others on forums. Those few months without symptoms were awesome though.
I’ve ordered these off of Amazon because they are stackable and can raise your bed gradually. If you put the top of your bed on risers and lift your head 4-6 inches (some say 8 inches this website included a chart so you can see how much you should raise your bed type so that you get the right angle). You can’t just add extra pillows. Your kidneys and heart need to be above your legs at a certain angle. After 3-4 months patients who would faint when standing up improved (explained in section 3.2 of this article). This article found that 11/12 patients who fainted when standing could stand for longer after 3 months of having their bed at a 10º angle. In my experience it’s a little weird but it doesn’t hurt and is a super easy thing to do with little risks and huge potential benefits.
Preventing deconditioning (Exercise and staying upright during the day)
Exercise: I haven’t gone through the exercises in the Levine Protocol just yet. But there’s a lot of evidence that it can help. 71% of the 78 POTS patients who were able to complete Levine’s exercise program (many were unable to and there are a ton of reasons why this might not be the best choice for everyone) no longer met the criteria for POTS! At the beginning the exercises are tough but they are done while lying down. Then over the course of 3 months you can try to transitions to more and more upright exercises. They key is to not skip more than 2 days or else you’ll start to decondition again. I’ll write more about this once I start doing it. There’s also this blogger who did a fantastic job detailing the history of the Levine Protocol and how it personally helped her.
This is my understanding of what exercise can do for POTS patients: It slowly retrains your body to consider “tense muscles” and “exercise” as the normal so your body doesn’t freak out every time you stand. It can also strengthen your muscles which stabilizes loose joints and helps push blood out of your legs and into your head so you don’t faint! Don’t let yourself “decondition.” I know (trust me I know) that it feels better to lie down as much as possible. But this will tell your body that lying down is the new normal and your symptoms will get progressively worse. Try to be as active as possible. However if you are feeling severe pain (during exercise or daily life) STOP and talk to your doctor to avoid injuring yourself.
Compression Garments: This article discusses the ins and outs of medical grade compression stockings which need to be specially measured and ordered with a prescription. I’m personally going to try an abdominal binder. I’m also going to try some zip up compression stockings as I have heard the regular ones are hard on fingers (especially if your fingers dislocate). It’s important that your entire legs and abdomen are compressed and not just your calves (explained in section 4). The mighty has some recommendations but they seem a bit pricy.
That paper I got all this info from also recommends against taking tablets (because of the risk of stomach irritation and dehydration) and instead says to just eat more salt, but my doctor disagreed and so do I. It’s hard to eat that much salt!
I couldn’t find any evidence on this but taking talk may give you a false negative on your tilt table test. However there’s a good chance that will happen anyway.
If you have any other heart issues or have high blood pressure or your doctor told you to cut down on salty foods… DON’T DO THIS!!! Talk to your doctor first.