Neurocardiogenic syncope and advisability of wearing medic alert bracelet

[rachelsma]

Is it advisable for someone diagnosed with NCS to wear a medic alert bracelet? I now am taking midrodrine but still feel lightheaded and during my tilt table test, fainted after less than five minutes, had a seizure and no blood pressure.

[LivingInHope]

You're welcome.  Hope you can get some testing to rule this out or get it diagnosed, if you are suffering from it.

[rachelsma]

No they didn't, but I do have Hashimotos... Thanks for suggesting that.

[LivingInHope]

You're welcome!  Did they rule out Addison's disease also?

[rachelsma]

Thanks so much for your responses! I really appreciate them.

I was very frightened with my tilt table results. I've been fainting for years and no one took it seriously until I was having a medical procedure and the anesthesiologist asked if my pulse was always so low. I had no idea! She suggested going to a cardiologist and that's when I had my testing. My bp is kinda low too. I started midodrine and drinking lots of gatorade and water but still lightheaded most of the time!

Thanks guys.

[Heiferly]

Yes, although I would put the word "syncope" rather than "NCS" on the bracelet because it is much more widely recognized by first-responders (even "neurocardiogenic syncope" might throw some for a loop, so it's up to you whether or not to include that part on the bracelet).  Remember that a medic alert bracelet's primary function is to RAPIDLY convey information to FIRST RESPONDERS who are NOT doctors.  There are a lot of medical terms that first responders simply are not familiar with, so it is best to keep it simple,  include information that will be most likely to be helpful to those folks in light of what they will be seeing and the decisions they will be having to make, and to put more detailed information in your purse/wallet/backpack/glove compartment (i.e. something that you carry on your person or a caregiver carries with you AT ALL TIMES).

Things to include on the medic alert bracelet:
* name

* drug allergies (if there are too many to fit, and this applies to a few people in our community including myself, list the BIGGIES—the ones that cause anaphylaxis—and skip the ones that just cause a rash or other minor reaction; you can list those in your detailed info)

* name and phone number for at least one emergency contact person (It is more important to list a person who carries a cell phone and can/will always answer, even at work, than to list the person you MOST want contacted if that person isn't always easy to reach; if your primary decision maker is difficult to reach, have your emergency contact person be set to hunt them down once they get a call from the hospital.  The hospital will not have the resources to try calling someone over and over frequently or at several different numbers until they get through, but we all know someone who is attached at the hip to their phone who can do this.  List THAT person (and make sure you give them a printed copy of your detailed medical info so they can answer questions if needed)!

* You may or may not want to list meds that you take; many people are on too many meds to list, and meds can change frequently as well.  If you are steroid dependent and may need stress-dosing of steroids in an emergency, that can be important to put on the bracelet.  Those on insulin would want to put that.  Likewise if you are on blood thinners.  

* If you have any in situ medical devices, list those (implantable loop recorder, pacemaker, gastric pacemaker, vagus nerve stimulator, implantable cardioverter-defibrillator, etc.)


If anyone would like to have input on what information might be good to carry with you in your purse/wallet, let me know and I can start a thread describing what I carry as a starting point to give people ideas.

Best,
-Heiferly.

[LivingInHope]

While I don't have it (diagnosed w/POTS), yes, I think it is a good idea for those diagnosed with NCS to have a medic alert bracelet.  What a frightening experience during the tilt table test!