Need some type of device to be able to alert paramedics

[tkimber]

Hi All,
I have had to call the paramedics a few times this month due to what my doctor calls autonomic crisis.  I had a severe cold and woke up in the middle of the night to go to the kitchen and started sweating profusely.  Instant nausea, dilerium and I blacked out.  I couldn't yell for my husband since it was 2 A.M. and he was in a deep sleep. My black out was intermitten and I was able to be somewhat conscious for a few moments here and there.  Luckily I was near a phone and somehow found the strength to dial 911.  I can't talk much during these episodes, nor do I have much use of my muscles, but was able to hear the operator and moanfully agreed to who I was and where I lived.  It was a bad episode and wasn't sure I was going to make it.  It was scary. :(  Fifteen minutes later the paramedics arrived, whom actually looked more like I had called the Chippendales.  They were all bulked up.  haha.  Anyhow, my husband was awakend and he knows to put me in a tub of ice cold water. I caught a glimpse of myself in the mirror right before the bathtub event and what I saw was disturbing-my face was a bone gray color-I looked dead.  It will be hard to get that image out of my mind...ever.  Anyhow as soon as I hit the cold water it causes my blood vessels to constrict and thank God, I was back. I looked in the mirror right after and was so glad to see some color back in my face. I was a bit out of it, but at least I was back.  Then the questions started and they weren't believing me.  The medics wanted to know what drugs I was on?  Had I been drinking?  I answered, "Yes, a lot!" Thinking they were asking about how much water I had been drinking. :) That made my husband laugh and pipe in.  I couldn't explain my situation because I am quite dazed after these episodes.  My husband told them that I have dysautonomia which only caused them to look more perplexed.  Finally a paramedic, who was holding a small computer, said, "Wait this can be part of dysautonomia."  'At last', I thought.  This also happened a few weeks ago in a public place and paramedics were called, and since I couldn't explain my situation they assumed I had a stroke or brain seizure.  Ugh.  So afraid paramedics are going to inject me with something weird someday. Which they did once, it was an anti-nausea med and it made me worse...starts with a "C". Anyhow, my question is, is there a bracelet or something I can wear-so that someone will believe me and know what to do?  I'm so tired of them thinking I'm some drug crazed person or drunk.  
Thanks for listening.
Good health to all
Tkimber

[beema36]

I agree with you both because there have been days this site has been all I had to keep me going. I am thankful for all if you.
Beema

[tkimber]

Yes, let's hope that what doesn't kill us makes us stronger.  Haha, Yes, I'm bulking up that's for sure.  And for me this site has been a Gift from God.  So nice to have people to understand.  Thanks for all the support.  
Tkimber

[Heiferly]

I'm glad you've found a good group of ladies at your church for support.  We all need others to help hold us up; dysautonomia certainly adds challenges to our lives.  I hope it's true that what doesn't kill us makes us stronger!!  ;-)  We'll be like the HULK sooner or later.

I know I've said it more than once (okay, more than a few times), but you folks are a big part of what keeps ME going.  I'm glad we have a way of connecting with others who "get it."  

<3  Heiferly

[tkimber]

Oh thank you all so much for the great suggestions.  I live in a small town outside of Las Vegas, so I think I'm going to go to the Firehouse/Ambulance station and just give them my information since this seems to be happening more.  That's a great idea.  And I think I should carry the book with the information in it.  I think you are right, a bracelet isn't going to tell them much, but I was so impressed that this junior paramedic had the medical little hand help computer that tells of most health issues.  So maybe a bracelet won't hurt. Maybe I could just write on there to put me in a tub of ice-no crazy meds either. And will have to add..promise I am not drunk or on drugs. :) Great great ideas.  

Gosh Heiferly, I can't believe they were at your house again.  So terrible.  I feel awful for you.  I get some strange migraine that brings on the crisis also, but yours sounds a bit different.  God Bless your heart.  :(  Hang in there.

Also I will get that book.  I'm so in need of something like that. And can't believe that someone else gets in a tub of ice-that's incredible.  I love that it's a Christian book.  I was always somewhat of a believer in God before this, but now, it seems that's the thing that has given me the most support.  And so sad to say, but have lost a lot of friends since this situation 5 years ago. I suppose it's difficult and depressing for some people to handle and they just don't get it.  But it all worked out, I have a great GREAT support at my church group in Vegas/Henderson.  WE have about 100 girls in our small group.-not so small. And they are always there if I need anything.  I'm pretty much a home body now, which I'm sure you can all relate too.  Can't make plans too often, cause I never know what plans my body has. :) But I do try my best to get to my group weekly, which I look forward to when I can get there.  I just have learned to have faith and to know that a good day is around the corner.    
Thanks,
Heiferly
PS Those were great answers.  And big hug to you Heiferly, and Beema and Lisa

[Heiferly]

Do you know if the paramedics/EMTs that respond to 911 in your locality are from the city fire department, a volunteer fire department, a private company that has some sort of contract to respond in your area, or ... ?  I ask because where I live, for example, if I call 911 MOST of the time the ambulance will be dispatched from the fire station by my house.  The paramedics that arrived yesterday informed me that they were bummed because they were actually out of their normal "jurisdiction" (not sure what the right word is), but that they would make a note of my unique circumstances anyway so that if any of their people ever got called to my house again, they would know about my syncope and my bizarre migraines so they would not subject me to any unnecessary treatment and would know more about what to tell the hospital when they brought me in.  I think "my" firehouse ambulance people already have notes on file about my case so that they're more and more informed about what to expect every time we have an "encounter."  It also comforts me that I think they would have that note that I live at this address so if they get a call for a fire at my house, they would know there's a disabled person who has fainting and paralysis attacks here so they would know they need to make sure I'm not trapped in the house in a fire!

So, if there's any consistency as to who (that is, from what place, not necessarily the exact individuals) responds to 911 calls for ambulance where you live, you may be able to have them make note of your special needs so that when they respond to a call at your address they're more prepared.  I would look into that possibility if I were you.  Second, I haven't really explored this myself, but I've heard of other patients getting their specialist/lead dysauto doc to write a brief description of what occurs in their emergency situations, what needs to be assessed, and what treatment(s) need to be administered.  It may need to be written in paragraph form or more like a flowchart depending on whether there's either/or contingencies involved.  If you get a document like that from the doc, keeping that at hand at all times would give first responders something "official" to go off of.  Not all docs are willing to do this though.

Finally, if you haven't read that book that the one officer of NDRF recently published, you really ought to (God Needs Me: Living with Dysautonomia).  She has attacks quite similar to that where she needs to be plunged in ice.  It's a fairly religious (Christian) book, so if you find that off-putting, you might not like it.  But honestly, even if you're not Christian, I think if I were you I'd try to read it anyway and just skim past those parts because it would be worth it (in my opinion) to read about someone else who has similar attacks.  

http://www.amazon.com/God-Needs-Lynn-Fox-Adams/dp/1607995921


I'm so sorry you're struggling with this.  I wish I had better answers.  BIG HUGS!!!!!
-Heiferly.

[Heiferly]

I really hope I'm not going to sound like a "Debbie Downer" here.  I hope that everyone can take this as useful information.  I am also not trying to scare anyone.  Knowledge is power.

I just had the paramedics out at my house yesterday.  My aide had to call them to help with an injection for my migraine (a certain kind of migraine that is accompanied by a type of aphasia where I can't talk properly nor comprehend speech, for those curious, check out the following link and scroll down to the heading "Wernicke's aphasia" and read that section).

http://www.migraine-aura.org/content/e27891/e27265/e26585/e26790/index_en.html

(Also here:)

http://www.youtube.com/watch?v=B-LD5jzXpLE&feature=related


So, after the medicine from my injection kicked in, I was able to talk fluently and comprehend language again (and my head felt SO much better!!).  I spent a few minutes talking to the paramedics.  It reinforced a few points that I've made here before but bear repeating.

1.  First responders such as paramedics, EMTs, and triage nurses will not have heard of the term "dysautonomia" and/or will not know what it means or what the clinical implications thereof are.  In the VAST majority of cases, likewise the following:  "MSA," "multiple systems atrophy," "PAF," "pure autonomic failure," "neurocardiogenic syncope," "NCS," "NMH," "neurally mediated hypotension," etc.

2.  First responders generally WILL be familiar with the following terms:  "orthostatic," "syncope," "tachycardia," "bradycardia," "hypotension," "hypertension," "vasoconstrictor/vasoconstriction," "vasodilator/vasodilation," "positional," "reflex," "anoxic," "convulsive," and many others.

3.  If you want to know how to best describe your situation in language that first-responders will understand and be able to best help you with, ASK A FIRST RESPONDER.  Talk to your EMTs, paramedics, and triage nurses.  Describe your condition, what happens to you during a crisis, and what needs to be done to help you, and ASK THEM what language would be most helpful to them on your medic alert bracelet.  

4.  For example, many of you know that I have cataplexy (sudden, temporary total paralysis attacks) from my narcolepsy.  Unfortunately, I've learned the hard way that putting "cataplexy" on my medic ID bracelet is useless; first responders are entirely unfamiliar with the term.  What is helpful to them?  "May be conscious but unable to respond."  This is elucidated fully in my Medical Binder, which goes EVERYWHERE I go.  

5.  I used to believe that any terms on my medic ID bracelet that were unknown would be looked up, or that they would call the hospital and a doctor would tell them what it meant.  In reality, in a crisis situation, this has NEVER been the case.  Sadly, not even from triage nurses, WHO ARE SITTING AT THE FRONT DESK IN A HOSPITAL FULL OF DOCTORS, IN FRONT OF A COMPUTER WHERE PRESUMABLY THEY COULD LOOK IT UP THEMSELVES ... AND THIS IS AT THE HOSPITAL WHERE MY MEDICAL RECORDS ARE IN **THEIR** COMPUTER SYSTEM SO IT **REALLY** WOULD NOT HAVE BEEN ROCKET SCIENCE TO LOOK IT UP.  Please, please take heed:  in what is perceived to be a true emergency situation, time is of the essence.  No one is stopping to make a phone call or look up a definition.  They are following the protocols for *normal* treatment of *normal* patients who manifest the symptoms you are displaying.  As we all know, in many cases this will not be the appropriate treatment for a dysautonomia patient because we're far from "normal."  The choice is up to every individual.  Talk to your EMTs, paramedics, and triage nurses if you don't believe me.  Ask how often it actually happens in the field that someone calls to get verification on info found on a medic ID bracelet.  They have failed to understand info on mine MANY times (it's been a long process of trial and error for me figuring out how to word stuff on mine), and NOT ONCE, has anyone ever called or looked up what they couldn't understand.  It just stays a mystery until I either become able to speak for myself, something (more on that in a second) or someone else fills in the gaps, or I get all the way to the actual doctor and thus someone who does know what the terms mean (hopefully).

6.  Medic ID bracelets/necklaces (I have both, though I wear my bracelet 24/7 and the necklace I never wore as often) do not always get spotted in an emergency.  They also will not fit all of the information that first responders and the hospital really need about you.  If you have a history of syncope or other consciousness-altering emergencies where you are not able to speak for yourself, I firmly believe (though this is only my opinion and you're free to disagree) that the medical booklet or binder is the way to go.  Mine may be overkill, but it is thorough and I have EVERYTHING I need with me every time I am at the doc's or the hospital, no matter what the circumstance:

-Emergency cover page with name, date of birth, vital information that people would need in an emergency if I'm not talking for myself (like that I might LOOK unconscious but actually be paralyzed, etc.), all drug allergies and contraindications, major diagnoses, etc.

-Medication list with drug name, dose, indication, and rxing physician

-Chart of medication dosing schedule (i.e. what med is taken at what time of day)

-Pill identification descriptions (if pill box ever accidentally gets spilled, anyone can identify each pill and get it back in the right section of pill box to be taken at proper time of day)

-List of all physicians, therapists, caregivers, etc. with addresses and phone numbers

-Copy of insurance cards

-Copy of living will, healthcare power of atty, & organ donor documents

-Medical history including surgeries/procedures with dates, inpatient hospital stays with dates, and all diagnoses (also most pertinent test results for your primary diagnoses to indicate severity may be helpful)

-Family medical history

-Emergency contact list with names, relationships, phone numbers, addresses, AND a brief statement that you are granting a two-way release under HIPAA for your medical information to be shared by any means (face-to-face, over the phone, voicemail message, etc.) with all of these people.  Make sure to put your signature on this.  Ask a hospital administrator or social worker in your hospital if you have questions about whether what you have written is sufficient.


It may seem like a hassle to travel around with all this, but it has saved my rear more times than I can count to have everything on hand when I'm unable to speak, the person accompanying me to the hospital doesn't have the litany of my medical info memorized to a T, or it's just much more convenient to have a doc's office run off copies of my info than to fill out forms for an hour before my appointment.  I would encourage people to consider both "dumbing down" their medic ID bracelets and carrying a booklet or binder that contains the bulk of their medical information for doctors' purposes (the latter particularly for those folk who know their next ambulance ride/ED visit is a matter of "when" not "if").

[beema36]

I use medicalert. They send  bracelet, necklace or even watches. These are engraved with most pertinent information. Then ems hopefully will call them as they have all your information on file and can explain to them. There's a small yearly fee but to me its worth it.
Beema

[Mom2four85]

I would get a medic alert bracelet and put on it Dysautonmia and Syncope; each on a separate line then they will know what it is or be able to look it up or call if they dont know.

You may want to add your husband's emergency contact number on one line so they can call him if he's not around.

There's some great bracelets out there but I stuck with one with the Red emergency emblem on the front so it didn't look like just a piece of jewelry.