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Medical Id


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#1 conx

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Posted 21 November 2011 - 09:01 AM

Hi! I was diagnosed with narcolepsy 3 weeks ago and am on stimulants for the sleepiness. So far I'm not taking anything for the cataplexy. I sometimes have cataplexy a lot, Especially when I'm on stairs or crossing streets, I'm afraid I'm going to knock myself out or be unable to speak.
As a result I was wondering if many people wear medical IDs like a bracelet or necklace.
If so, why do you do it? What kind do you have? Have they helped?

If you don't wear one, why? Cost? Inconvenience? Never thought it was necessary?

Thanks!

#2 sleepywriter

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Posted 21 November 2011 - 11:19 AM

I don't wear one right now, but my husband wants me to get one to wear when I'm running outdoors. Everyone at work and at school knows about my narcolepsy, but if something were to happen while I'm out running, there's no telling what would happen.

A friend of mine with diabetes recommended www.laurenshope.com. I haven't looked around much yet.

Let me know what you find!

#3 conx

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Posted 26 November 2011 - 09:21 PM

I asked my doctor, who recommended that I get one.
She said that it just needed my diagnosis on it, no name necessary.
After shopping around, I chose to buy from http://www.stickyj.c...-emergency.html
I decided to just get the back engraved with "Narcolepsy with Cataplexy"
It came to just under $30 and I should hopefully receive it by the end of the month or the week after.

I will post an update when I get it, hopefully soon!

#4 PhyllisJ

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Posted 08 February 2012 - 10:28 PM

I was just diagnosed with narcolepsy, so I was reading over the forums. I'm curious...what would be the benefit of wearing a medical ID for narcolepsy?

#5 sk8aplexy

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Posted 10 February 2012 - 03:40 PM

I wear a wrist bracelet and a necklace, both steel with engraving (below).
Plus I have a laminated card w/ info, in my pocket. The description of Cataplexy below (as such is, what I can spend hours explaining, and experience/live/deal with at random times).
Mayo Clinic: "Cataplexy is an abrupt loss of voluntary muscle control or muscle tone. This can result in muscle weakness or, in severe cases, complete temporary paralysis."

Mainly it's just for the odd random moments, to have less to explain and/or, to point at or grab while/as I go down (if I can manage) around those who'd not expect such to occur.

Online it would have cost me around $30-$35 for either, and was $65 total for the two; w/ engraving plus the shipping.
The steel, 1" wide x 3/8" long, w/ med alert symbol on front, engraved w/:

I an I
Narcoleptic w/
Cataplexy...
No Alarm Need
(flip over)
-------------------------------
Do Nothing Unless I Am
Down Beyond a Minute
or Am Unable to Breathe.
-Info Card In Pocket-


If you don't have 'Severe Cataplexy' then all of that, may be less necessary?..

#6 PhyllisJ

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Posted 10 February 2012 - 08:22 PM

I do have Cataplexy, but not as severe as some. Mine has mainly shown itself when I laugh hard...I can't walk, can't open my eyes or keep them open, usually bend over, may stagger. I'm 44, and I can see now looking back over my life when I was young, many times that would have been episodes of Cataplexy. I know my symptoms have become worse over the last few years, micro-sleeps and hallucinations especially - so there's no telling what might pop up these days.

Thanks for your help.

#7 DeacyK

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Posted 20 February 2012 - 08:51 PM

I wear a medical ID bracelet similar to this:

http://www.amazon.co...29788600&sr=8-2

I have pretty severe cataplexy and wouldn't be able to fit all info on an engraved bracelet. This one is velcro (I am as active as possible when feeling good, and this bracelet can be worn in water, etc) and has a 'pocket' inside. I typed up my info - described the condition, emergency contact #s, meds I am on...when I am cataplectic it is difficult to find my pulse and my bp drops severely....this can be quite alarming to those unfamiliar with cataplexy. I felt this style of bracelet allowed me to include a lot of info. Plus, when meds or contact info changes, I simply retype it. I used clear packing tape to 'laminate' my info as well. Wearing the bracelet also gives my husband peace of mind when I venture out on my own.

#8 AnnieJoy

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Posted 13 September 2013 - 08:10 PM

My mom is wanting me to get a bracelet or something with a description, because one of my triggers is confrontation (also being startled/scared) right now she is not letting me get my driver's licence because she is afraid that I would be too tired. She is also afraid that if I was pulled over or in an emergency I would not be able to reply to the person be it a cop or EMT. 
I told her my concern, being that i already struggle with the guilt of being reminded that other people are often inconvenienced by my condition I did not know if I could handle being reminded of this every moment I look at my wrist. 
Though I do know it would be helpful. 
Though while I am struggling to keep my condition undefining of my identity, I do not know if it is appropriate I wear one right now. 

I may need to get over that for safety reasons. 

Does anyone know of commonly used phrases/words/info for people who struggle with cataplexy in speech? Also, are there any times of... well passive looking adornments (no flashy, urgent looking red crosses anywhere...)? 

Just wondering.