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POTS med alert bracelet?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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POTS med alert bracelet?

I have a question that I personaly have been debating on for a while. I was diagnosed with POTs syndrome not too long ago but I have had it since I was a baby. It had been a medical mystery for so long and we finaly figured it out. Even though it hasnt been long to be diagnosed my mother has wanted me to get a MED ID bracelet to let people know that I had syncope issues but now that we know it is POTs also. In addition to that diagnosis I also have ASD, Autism Spectum Disorder, Aspergers syndrome. I dont want to have a med ID because I feel like im telling the world that im screwed up. But at this point I dont even want to go to work anymore because it has gotten so bad that i have been sent home early and I have medication that I take for it that isnt really doing its job very well.... And im only 17. Could anybody please tell me whether it would be ideal or good to get a med id bracelet? If anybody has any input please help me!  Thankyou so much!
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612876_tn?1355518095
Hi, Nice to meet you and welcome to the forum!

I can tell you that I personally have been wearing a medical ID bracelet 24/7 for about the past 5 years now and ... seriously ... NO ONE really gives it a second look or asks me about it, so it has ZERO impact on my social life or anything like that.  So if your concern is that it would somehow stigmatize you or make you stand out at work or among your peers, it's probably one of those many things that we as humans tend to worry unnecessarily over when in reality others just aren't that observant or perhaps just don't care.  

If you do put POTS on your bracelet, I suggest merely putting "postural tachycardia" or at least writing out "postural orthostatic tachycardia syndrome."  Very few first-responders will know what postural orthostatic tachycardia syndrome is, and even less will know what POTS stands for, so having that alone engraved on your bracelet may be pointless.  They will, however, know what the concept of "postural tachycardia" is, because the words themselves are recognizable medical jargon and are self-explanatory; they seem to be less confusing to paramedics when removed from the context of the full name of the syndrome which often is entirely unheard of to paramedics, EMTs, and triage nurses (whereas an MD can easily infer POTS from the phrase "postural tachycardia" if they are indeed familiar with the syndrome).  

If you have syncope, it is also definitely prudent to have that engraved on the bracelet.  First responders DO know what syncope is!!  (No need to bother with "neurocardiogenic syncope" or "vasovagal syncope," etc., just "syncope" will suffice.)  

Whether you want to put Aspergers on there or not is up to you, but outside of the Autism community, the ASD abbreviation is not well known, so I wouldn't use that initialism for the engraving.  (Normally I wouldn't speak on topics outside of the field of autonomic, but my career experience is in the autism field, so I have some level of confidence in saying that that's an autism community-specific abbreviation and that people outside our community tend not to know it.)  I would go with "autism spectrum disorder" or "Aspergers Syndrome" instead, if you decide to put that on the bracelet.

I would definitely list any drug allergies and an emergency contact phone number (pick someone with a cell phone who tends to ALWAYS have it on and ALWAYS answer it ... these days it seems all of us know at least one person like that).  Even if that person isn't the person who can make decisions for you in an emergency, if they're the easiest to get a hold of and are willing to track down your emergency contact person, they could be the best choice to list on the bracelet.  (For example, I list my sister who would then hunt down my mom, because my mom only has a landline and might be tricky to get a hold of in an emergency.  My sister is MUCH more likely to answer because she has a cell phone that's always with her.)

As you might gather, yes, I'm in favor of wearing a Med ID bracelet, especially for folks with syncope.  It can give important info to first responders when seconds matter.  But ultimately, you have to make the decision that is right for you.  You may want to consider a Med ID necklace that hides more discreetly under clothing, or one of those Med ID USB fobs (just realize that not all EMTs/paramedics can access those, so it may not always be as practical as a regular Med ID).  You may want to look at the companies that make ones that look like regular jewelry; they can be more costly, but some of them are *really* pretty.  There are also "sport" ones out there.  

If you're interested in any of these options and need help finding links to explore them online, let me/us know and we'll get you some ideas of what's out there.  

Welcome again!!  So great to meet you!
Heiferly.
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875426_tn?1325532016
Before I was diagnosed with P.O.T.S. and with a background that included vocational nurse's training, orthostatic tachycardia would have said something to me rather than postural tachycardia.  I don't think I would have understood what was meant by postural tachycardia, but would have understood if someone said orthostatic tachycardia with the training I received.  That's why I tell medical people either the whole name of the syndrome or just tell them I have orthostatic tachycardia.  
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875426_tn?1325532016
I don't wear a medical bracelet myself, but I don't have syncope with my P.O.T.S., as some, including yourself do.  I think it would be a good idea for you to get one, listing all medical conditions that would help medical workers to be apprised of.

I think if a person has the hyperadrenergic form of postural orthostatic tachycardia syndrome., it would be wise to mention the word hyperadrenergic also on the bracelet, because there are certain medications that would exacerbate (make worse) the tachycardia and the medical workers should be made aware you shouldn't take certain medicines because of it.
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612876_tn?1355518095
Thanks for your input on how to word the tachycardia from a nurse's perspective.  I'll try to remember to advise people to list it as "orthostatic tachycardia" in the future.  

This made me look at my bracelet to see if I even have anything about tachy listed on there, but I realized I don't (then again, I have tachycardia, but not POTS per se).  No room for it, I've got so much other stuff crammed on there, LOL!!
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875426_tn?1325532016
You're welcome!  Well, as long as you have down what would exacerbate your tachycardia somewhere easily accessible to them, that's most important, I think, since they can figure out the tachy part by taking your pulse. :0)
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Thank you guys! What kinds are there and how much can I fit on them? I have ALOT to write!
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Thank you guys! What kinds are there and how much can I fit on them? I have ALOT to write!
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875426_tn?1325532016
I hope Heiferly is more knowledgeable than I on how much you can fit, but it would look there are a lot out there and it would depend on the size of the portion of the ID where info can be put.
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Heiferly
Columbus, OH