A year ago this week I started doing weekly infusions for my hEDS/Dysautonomia/POTs diagnosis. They have been life changing to say the least.
For roughly three months prior to trying my first infusion, I was basically bedridden. My fatigue was disabling to say the least. The weirdest part was that I would not be able to sleep at night, would fall asleep early in the morning for a few hours (2-4 at most) and would just lay in bed completely exhausted all the time without being able to sleep. With this kind of fatigue you would expect that I would be sleeping all the time but instead I would have the TV on not even realizing what was on the screen. I literally didn’t have the energy to pay attention to the TV, read or crochet, I just laid there! On most days I ate all of my meals in bed and only got out of bed to use the bathroom. Don’t get me wrong, there was the occasional day where I would feel okay enough to get up and do something for a few hours but that happened maybe once every week or two and it was usually to go to a doctor appointment or see my daughter at a school event. Then I would be knocked out for days to a week all over again. I felt frustrated, hopeless, depressed, angry and like a failure as a wife and mother.
I saw different doctors who suggested vitamins, diet changes, exercise and other stuff that didn’t work so I decided to do my own research on how I could help myself. Some searches mentioned that people with POTs and Dysautonomia benefit from Myers Cocktail infusions due to the vitamins and extra hydration in the saline. It is very common for people who have these disorders to easily dehydrate (without even realizing it) and be low on vitamins, especially vitamin B if they have the MTHFR gene mutation. On top of all of that, I am gluten-free so there are other nutrients that I do not get from my regular diet.
As an experiment, I called a mobile infusion company and made an appointment for the next day. The nurse came right to my house and did the IV in my family room. That day I was still tired but the next four days I was able to get out of bed, actually do things around the house and spend time having fun with my family. After the fourth day I was getting fatigued again but realized that there might be something to this!
I contacted my primary doctor who actually does different vitamin infusions at her office as a spa treatment and she agreed to let me do them there weekly to see if they worked consistently. Within weeks I was able to live a more active life. I have been able to go on vacations, spend time with friends and family, run errands and do a lot of daily things that I used to do. I’ll be honest, I still have my bad days where I am extremely fatigued but now it happens a lot less often and usually when I am in a flare-up. On the day of the infusion I am usually very tired which is common with a lot of people but then next day I am feeling better and it lasts almost a week.
The infusions are not the only reason I am doing better. I stay very hydrated, eat better, do physical therapy, use red-light therapy, meditate, have a much better sleep routine (8-10 hours a night!) and use a tVNS (transcutaneous vagus nerve stimulation) – each of which will have their own blog explaining what I do and how it has helped.
Unfortunately insurance does not cover the infusions but if they are deemed medically necessary or you have a prescription with the proper medical codes, once you meet your deductible some insurance companies will reimburse you a portion of the cost.