Finding an approach that works
Staying hydrated has been an important part of managing Diane’s digestive difficulties. Diarrhea, nausea, and difficulty drinking enough have sometimes made this challenging.
Some people with hEDS or HSD also have conditions such as postural orthostatic tachycardia syndrome (POTS), for which clinicians may recommend additional fluids and salt. These recommendations depend on the individual; they do not apply automatically to everyone with hEDS or HSD. Extra salt or fluids may be inappropriate for people with certain heart, kidney, or blood-pressure conditions. The Ehlers-Danlos Society: dysautonomia
This page describes what we have tried and explains some important differences between hydration products.
Ordinary water and bottled water
Safe drinking water is suitable for everyday hydration for many people. Electrolytes also come from food, so adding them to every drink is not automatically necessary.
Diane has found some bottled waters easier to tolerate than others. In our experience, Smartwater did not agree with her, while the water we knew as Life Water and FIJI seemed better tolerated. More recently, she has preferred Evian.
These observations helped us find drinks she could use comfortably, but we do not know why her responses differed. They do not establish that one brand is medically superior or that other people will react in the same way.
The word “electrolytes” on a bottle does not tell you whether it provides enough sodium or other minerals to replace significant losses. Some waters contain small quantities primarily for taste. For example, the current U.S. label for original Smartwater lists electrolytes added for taste and zero milligrams of sodium per serving. Smartwater product information
Bottled mineral water and water with added electrolytes should not be assumed to perform the same job as an oral rehydration solution.
When electrolyte replacement may help
Diarrhea and vomiting can cause the loss of both water and electrolytes. Depending on the severity, replacing water alone may not adequately replace those losses.
An oral rehydration solution contains glucose and electrolytes in proportions designed to support fluid absorption. A pharmacist or clinician can help select an appropriate product, particularly when symptoms persist or other health conditions affect fluid balance. Severe dehydration may require hospital treatment. NIDDK: treating diarrhea
Follow the product’s mixing instructions exactly. Do not use extra powder or tablets to make a stronger solution.
Our experience with hydration products
We have used Nuun tablets and Liquid I.V. products. Diane has found Liquid I.V. convenient during travel. We have also used Pedialyte during illness.
These are personal experiences, not evidence that these brands are the best choices for everyone with hEDS or HSD. Each brand may offer several formulas with different amounts of sodium, sugar, other electrolytes, and additional ingredients.
Check the specific product and serving instructions. Consider its intended use, ingredients you do not tolerate, and any advice from your healthcare team.
Diane has experienced nausea and abdominal pain with some sports drinks. That does not mean all sports drinks are unsuitable for everyone, but it shows why tolerability matters. Sports drinks, everyday electrolyte supplements, and medical rehydration products are not automatically interchangeable.
How much should you drink?
There is no single fluid target appropriate for every reader. Needs vary with body size, activity, weather, illness, food intake, medicines, and medical conditions.
If you have POTS, recurrent dehydration, or persistent digestive symptoms, ask your clinician for a personal fluid and, where appropriate, sodium target.
Bottle sizes vary, so “two bottles” is not a reliable measure. Count fluids from other drinks as well, and remember that food contributes water.
If drinking causes nausea, small, frequent sips may be easier than large amounts at once. Do not force increasingly large volumes or assume that nausea proves you need an electrolyte supplement. Persistent difficulty drinking needs assessment.
Alcohol
Alcohol can worsen symptoms for some people, including those with dysautonomia. It should not be used for hydration.
Diane’s tolerance of particular drinks is a personal observation. We cannot recommend wine as generally suitable for people with hEDS or HSD, or explain differences between beer and wine simply by fermentation.
Alcohol content, other ingredients, medicines, and individual health conditions all matter. If alcohol triggers symptoms, avoiding it is reasonable; there is no need to experiment to find a drink you can tolerate.
A personal experience with palpitations
Around the time I turned 60, I experienced a marked increase in the skipped beats I had occasionally noticed since childhood. During a medical assessment, blood tests showed an electrolyte abnormality. After I began using an electrolyte drink, I noticed that the episodes became less frequent.
That is my experience, but it does not establish that an electrolyte drink will treat someone else’s palpitations—or that filtered water caused mine.
Different water filters remove different substances. Reverse osmosis can reduce several dissolved minerals, but the effect depends on the system. A blood electrolyte abnormality requires assessment of its cause rather than an assumption that drinking water is responsible. CDC: choosing home water filters
Older adults may have a reduced sense of thirst and need to pay closer attention to drinking regularly. This does not mean that everyone needs more electrolyte supplements as they age.
New, worsening, or recurrent palpitations should be medically assessed. Palpitations accompanied by chest pain, breathlessness, or fainting require emergency help. NHS: heart palpitations
When to seek help
Seek urgent medical advice if you cannot keep fluids down, are urinating much less than usual, or have persistent dizziness when standing. Confusion, difficulty waking, or breathing difficulties can indicate a serious problem and require emergency help. NHS: dehydration
Our aim is to share practical experiences while encouraging a hydration plan that fits your needs. The most useful drink is one you can tolerate and that provides what your situation requires—not necessarily the most expensive product.