It's been nearly 3 years since Meghan's symptoms started. She has been less than cooperative with the many things we have tried to help with managing these symptoms - a fairly typical response by someone in their early teens. But still maddening nonetheless. One doctor early on in the process suggested we try compression stockings. The compression is supposed to keep the blood flowing upwards and reduces the amount of pooling of blood in the lower legs and feet. For the POTS patient, the blood vessels are not getting the message to squeeze hard enough (or sometimes at all) to get the blood from the feet back through their body and to their head. If the patient also suffers from EDS or hypermobility, like Meghan does, this increases the pooling effect in the lower extremities due to lack of collagen in the veins. People often associate compression stockings with older people or for those having surgery when circulation problems are more common. Somehow even Meghan had a negative view of them before we even started looking.
There are lots and lots of compression type products. I went out and bought several colorful pairs for Meghan to try that were like tights - it goes from the toes to up over the stomach. We were both a sweaty mess after wrestling to get them on. They made her itch and her stomach hurt more than it already did from the POTS. We weren't given a lot of direction from the first doctor who mentioned them. Not knowing any better, I had Meghan wear them at night - and really that was the only time she was open to wearing them. I guess I thought any amount of time she would wear them was a good thing and it didn't seem obvious to me that when you are laying down you don't need them like when you are standing up. A lot of obvious stuff in the beginning just didn't seem that way. So, okay. It was more important to wear them during the DAY time.
They are also very expensive. But if you ask your doctor, they should be able to give you a prescription for compression stockings. Lots of insurance policies do cover them when prescribed by a doctor. You should definitely start out with one pair and see if they are comfortable and if the patient will even agree to wear them. Most good pairs start at $50 and go up quickly from there. The level of compression also varies and the higher the compression, the better they are at keeping blood moving.
Dysautonomia International recently ran a blog post, The Skinny On Compression Stockings, that got me thinking about them again. I had pretty much given up on the full stockings. Meghan does not like anything that tight on her stomach (me either for that matter) and it greatly increases her already short bathroom break times at school trying to get them up and down. I am always searching online for things to try and in December had found some cute compressions socks I put in her stocking for Christmas. The pair had been laying on the floor of her bedroom for weeks. My Mom, who also follows Dysautonomia International's Facebook page, saw the same article and asked if Meghan had been wearing compression stockings. I decided to revisit the topic with Meghan. She had a pair of shoes she really wanted and I suggested that we get them if she agreed to give the compression socks another try - just the socks - not the full stockings. We are currently at a medium compression 15-20mmHg. I hope to get a few pairs in the next range which is 20-30mmHg as she gets used to them. They are itchy she keeps telling me - but we are on week number 2 - so far so good. Not sure what we will do when the weather gets warm and she starts wearing shorts...we will cross that bridge when the time comes. Off and on she experiences throbbing in her feet. I am hoping this will help with that and the dizziness she feels after sitting through class.
Two sites we have tried are: Crazy Compression - they have tons of colors from flowers to tie dye. Another one is Cute Compression - the ones with kitty paw prints were what finally convinced her to try wearing them. Meghan loves anything with cats or dogs. They can't be too flashy that people would ask her uncomfortable questions - but paw prints are apparently acceptable. Same with the polka dots or tie dye.
Most of the things that are used to help POTS patients manage symptoms, help to an extent. There aren't things that help 100% for most patients or even 50%. It is usually small improvements. I am hoping it will help enough that it will extend the amount of time she can do an activity or to make her a little more comfortable at school (minus the itching and complaining that they don't help). But...she is still wearing them ;)