When you don’t have any known health conditions or allergies, finding an over-the-counter (OTC) medication to treat a minor illness is fairly simple. You can go to a pharmacy, scan the aisles until you find the right section, and grab a box that lists all the symptoms it is intended to help with. Allergies? Grab something from the allergy section. Cold? Grab something from the cold medication section. Indigestion? Diarrhea? Heartburn? Grab something from whatever-they-call-that section. You may look at ingredients and what they are intended for. You may look for words like “non-drowsy” or “quick relief.” You may select one that a friend or coworker swears by. You may gravitate towards what is on sale, if you are budget conscious.
When you have LQTS, that changes. You have to be far more cautious with medications than the average person.
There are currently 237 medications to avoid/use caution with if you have congenital LQTS. Yes. 237. That is a lot. Some are OTC meds, intended to treat minor illnesses like colds, heartburn, allergies, etc. When I tell people that, they often react with “whoa! So you can’t take anything?????” Well, no. I can safely take lots of things. I just have to be careful about checking to make sure meds are safe for LQTS.
How to do that is a skill you acquire.
You read the information on the SADS website: Drugs to Avoid
You become skilled at reading labels. Here’s a good resource for that, if you need to brush up: OTC Drug Facts Label (FDA)
It becomes instinctual to grab your phone and look ingredients up on the CredibleMeds website or app.
“Is that safe for LQTS?” becomes a standard question you ask whenever a medical provider suggests any medication, whether prescribed or OTC.
You learn to double check yourself when they say it’s safe because mistakes do happen and not all providers are knowledgeable on LQTS.
You learn to be skeptical of herbal/homeopathic/natural treatments that aren’t regulated in the same way, and to not just automatically assume they are safe.
You learn to check interactions with your beta blocker or other medications you might take.
You sign up for email updates from CredibleMeds and the SADS Foundation, so you will be informed of updates and new meds added to the list.
Along the way, you increase your health literacy and become a better advocate for you and your family.
When you or someone in your family is first diagnosed with LQTS, finding safe OTC medication options for minor illnesses sounds like a MAJOR challenge. Once you have lived with this diagnosis for a while, it becomes business as usual. It’s still a challenge, but you learn to deal with it.
I asked several experienced LQTS families to share their approach to determining if an OTC medication is okay to take.
Here are their answers:
“When I or my kids need any OTC meds, I look at what symptoms I’m actually trying to treat and pick out a few different medications that treat those symptoms. Then I compare the ingredients listed for each medication to the CredibleMeds list. I also look to see why an ingredient is on the CredibleMeds list since some are “conditional”(for instance, if electrolytes are not balanced or if more than recommended is used). Then if one medication doesn’t have any ingredients on CredibleMeds then I choose that one. If there are not any medications without an ingredient on CredibleMeds, I fall back to why an ingredient is on CredibleMeds. Anytime I’m in doubt about picking a medication, I speak to a pharmacist.”
“I often hand my phone to my teen to look up the active ingredient because the CredibleMeds app frustrates me, and I can never remember the login to the website. We always look up active ingredients rather than brand names. It’s important so you don’t miss something.”
“When my Qtie has a minor illness, I have always some go to medications at home that I‘ve once checked and I know are safe. I live in Germany and we‘re always very well-advised by the pharmacy-team when it comes to new medication and to check all the different otc-brands they suggest to take. In case of new meds, I check the suggested medication by searching for the active ingredients in the CredibleMeds list/app and having a look at the contraindications or side-effects on the patient information leaflet (keyword „arrhythmia“). When in doubt, I ask the pharmacist or EP. ”
“When my kids or I am sick ( in which we are now), I have some go to medications that I know are safe. If we have tried those, without relief, I go browse the pharmacy for what will treat our symptoms, all while having the CredibleMeds list up. If I have questions, I ask the pharmacist. If we are feeling really rotten, I will call my cardiologist and see if he thinks the benefit will outweigh the risk of taking a medicine on ‘the list.'”