Fluids & Hydration
It’s commonly known that patients with hEDS are challenged to stay hydrated, although the reasons for this are not straightforward. One thing to consider is the frequent diarrhea which depletes the body. To compensate for this dehydration, ordinary water is often not sufficient, and drinking too much ordinary water may cause unexplained nausea. So you may end up needing a “boost”, which can be done in two ways: use either hydration additives or bottled water that already has hydration additives. Also, while I can drink any bottled water, with or without additives, Diane cannot. This means that all water choices are not even equal. Here is what we found:
Standard water vs electrolyte water –
Everyone, including hEDS patients, can obviously drink ordinary water, but some need lots of it. Drinking too much water, filtered or not, may cause nausea, and the reason is unknown. You are likely to need a good choice of water with hydration additives, or electrolyte bottled water. There are many good brands of electrolyte water choices, and based on our research, “SmartWater”, “Life Water”, and “Fiji” are the top choices. Funny enough, even electrolyte water choices are not equal, regardless of the additives. Diane could not tolerate the brand “SmartWater” for some reason, but she was okay with “Life Water” and “Fiji” water. So how do you make your selection? Here’s what we did: during a calm digestive tract period, I bought her a case of each to try for a week. Right away, she could not tolerate the brand “SmartWater”, so she stopped. Then she tried the other two for a week each and was fine, and her hydration level improved. So now we at least have a choice, which is nice. As a final note, try consuming at least 2 bottles per day, or around 2 liters, and do it slowly throughout the day.
Hydration additives –
There are many hydration additives on the market, and we can not judge or compare due to our lack of knowledge. However, the top two that have been known to work well for most people as well as hEDS patients are “nuun” tablets and “Liquid IV” powder. We have used both. Many hEDS patients reported success with “nuun” and Diane has used “Liquid IV” during her trips and travels. We recommend that you try these products, and other similar products, and learn which one is best for you, and then stay stocked up on your preferred one. Diane have used “Fiji” bottled water on an ongoing basis at home and at work, and ‘Liquid IV” when she’s on the road. So, try and figure out what’s best for you, whether it be additives, bottled electrolyte water, or a combination. It is important to note that hEDS patients need lots of help to stay hydrated.
Hydration beverages –
We don’t have much experience with sports drinks and Pedialyte, as we generally don’t enjoy them to begin with. Diane used both in her early stages of dehydration, but now she only resorts to Pedialyte during times of illness, like cold and flu. Diane does not prefer sports drinks, as they cause her nausea and abdominal pain, so therefore we cannot advise against them as we don’t have sufficient trials and experience.
Alcohol –
Alcohol generally has devastating after effects for hEDS patients- please refer to the fermentation section above for the reason. However, there are some alcoholic choices that are generally okay, in smaller doses. Again, it is all about the fermentation; for example, most beers have negative effects on the digestive tract, beyond a sip or two, but most wines are usually okay, with slow consumption. As for hard liquor, we don’t drink much of it, and therefore we don’t have much experience to offer; you will need to do your own research and trials.
Interesting Note –
As you age, hydration becomes more challenging for the general population, and dehydration may lead to other consequences. For example, during the time I was completing this webspace, I turned 60, and this was during the winter months. I started having itchy eyes, ears and nose, so I made an appointment and visited my ENT. During the 3 weeks waiting to see my ENT, my heart started to skip a beat frequently, sometimes continuously. I have had this condition since childhood, it is benign but annoying, and happens once in a while. Except, in this case it was happening a lot, like for hours at a time. After meeting with my ENT and doing some blood work, it turned out that I was low on electrolytes. So, I started using “nuun” in my water 1-2 times daily to boost my electrolytes. The result was instant, and now my heart is back to skipping beats only once in a while. That was surprising. But after doing some additional research, it made sense. First, the filtered water I was using depleted some of the needed electrolytes from the water, so I am now using tap water, as our tap water is relatively safe. Second, aging requires additional hydration, either because the body is no longer efficient in utilizing the current intake of electrolytes, or old body parts require more of the same. Recently, Diane has switched to Evian water, which is supposedly designed to bring natural mineral water straight from the French Alps. It is expensive, but has worked well for her.