We’ve received inquiries from dysautonomia patients who are having a hard time accessing their normal medical services and providers during the COVID-19 pandemic. Many healthcare facilities are postponing non-urgent appointments, surgeries and testing in order to minimize the risk of exposing patients and medical professionals to COVID-19.
Additionally, many medical professionals are being called to duty to serve individuals who have been severely impacted by the virus, or the are very busy answering many questions from their own patients. Please be patient with your healthcare providers at this time. They are facing the same challenges all of our families are struggling with, in addition to trying to serve their patients.
As much as possible, we should all avoid visiting hospitals at this time for non-urgent situations. Not only will this protect you from unnecessary COVID-19 exposure, it will also protect others in case you may have COVID-19 (you can infect others even if you don’t have symptoms). Read the CDC’s advice on what to do if you think you or a member of your family may have COVID-19.
Dr. Jeffrey Boris, pediatric cardiologist and Dysautonomia International Medical Advisory Board member, offered to answer some of the more pressing questions we are receiving from our patient community.
Q: I can’t get the IV saline infusions I have been receiving. What should I do?
A: It depends on how you have been getting the infusions. Some people get them at their doctor’s office. Some get them at an infusion center. Some get them at home. If you have been getting them through your doctor’s office or through an infusion center, speak with your provider and see if the infusions can be set up for you through a home health prescription. It may take a bit longer to start, as the provider will have to get insurance approval. I would recommend against routinely going to your local Emergency Department for infusions, due to the risk of infectious exposure. If at all possible, you should increase your oral salt and fluid intake to compensate for the saline you are unable to receive.
Q: I can’t find the electrolyte drink I usually use. Is there a recipe for a homemade electrolyte drink?
A: You don’t necessarily need to have an electrolyte drink. If you are taking in adequate amounts of fluid (2 to 3 ½ liters/day) and the equivalent of 1 to 2 teaspoons of salt per day through your food, that is actually quite good. There are salt capsules, such as Salt Stick Vitassium, that can help.
A homemade electrolyte drink can be a large glass of water with a little flavor, a little salt, and a little sweetness (to take advantage of the sodium-glucose pump, which helps you absorb fluids from your gastrointestinal tract into your bloodstream more efficiently). You can experiment with different combinations until you create a drink that you like. Here are some ideas.
Flavor: fruit juice, citrus, ginger, berries, melon or cucumber
Salt: any salt will work
Sweet: sugar, honey, or maple syrup
You can find Dysautonomia International’s salty snack and meal ideas here.
Q: I can’t get refills of my medication at the local pharmacy. Any ideas on how to get common dysautonomia medications without leaving home?
A: A number of insurance companies have a mail-order option, in which you get a 3-month supply sent directly to your home. Check with your insurance plan to see if this exists for you, then have your provider order it as a 3-month supply through the mail-order group. Make sure that you get the name of the mail-order group working with your insurance company so that you can pass it on to your provider.
Q: I can’t get my fludrocortisone (Florinef) prescription refilled, but I can get licorice root. How much licorice root should you take to equal .1mg of fludrocortisone?
A: The short answer is that we do not know. Licorice root is a supplement that is not overseen by the FDA, nor has there been adequate scientific study of it or its effects. Since it’s not overseen by the FDA, the amount (or contents) advertised on the bottle may not be what you’re actually getting. Also, the cleanliness of the plant as well as the supply chain of ingredients may be in question.
Q: I can’t get my midodrine prescription refilled, but I heard phenylephrine (Sudafed-PE) is a similar drug. Can I take this while my midodrine is out of stock?
A: Although phenylephrine is similar to midodrine, it’s not the same. All of the research that has been done with it in POTS patients has been using intravenous infusions. Thus, we do not know the appropriate dose, much less how long it would work. The side effects associated with chronic use are also not known, except for rebound nasal congestion. I would recommend against using this as a substitute. Consider using compression stockings (20-30 mmHg, waist to toe) while awake instead.
Q: My physical therapy appointments have been cancelled. What exercises can I do at home?
A: The modified Dallas (Levine) exercise protocol is available through the Dysautonomia International website. In general, you want to exercise recumbent (reclined, not upright, such as recumbent bicycle, swimming, or rowing machine), starting with 10 minutes per day, and increasing until getting to about 60 minutes per day by the end of the second month. You should be exercising about 5-6 days/week, which is a lot, but is very important to reduce symptoms. You should also be doing exercises to strengthen your core and leg muscles. With continued exercise, many people start to feel better by month 3-4. Exercise like this should be maintained indefinitely. Patients often state that they feel bad if they skip more than 2 days in a row. If you do have to skip, due to illness, back up 1-2 weeks in the protocol, and then pick back up.
Q: My psychologist/psychiatrist appointments have been cancelled. Where can I get mental health support at this time?
A: This is a difficult problem. I would definitely recommend contacting your psychiatric provider/counselor to find out how they are specifically the managing care of their patients. Some may be able to care for you by phone, others by Skype or FaceTime, others by a specific telemedicine link. Recognize that, due to everything happening in society at the present time, they are going to be overwhelmed with many patients requiring their attention, so try to be patient as you (and they) navigate this new, but temporary, reality.
In the US, your local affiliate of the National Association of Mental Illness (NAMI) may be able to suggest alternative local resources. 7 Cups is a free online source for emotional support.
If you missed our recent webinar, Coronavirus Q&A for the Dysautonomia Community, sign up for the Dysautonomia International email list to receive a copy.
