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ER Embassedor


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Somehow, I feel I let everyone down. I don't know why I let it get the best of me this time. But I did. My heart jumped to 130 (on the commode) this morning -- litteraly some running through me. Not terribly unusual for me but normally if I lie down my HR goes right back down. But it didn't. And instead of waiting even five minutes I caved and called 911. Goodness knows why ... Must have been the season finale of HOUSE. ;-)

Anyway 5 minutes and 2 police cars 1 hook n' ladder oh and yes 1 ambulance later there I was with a room full of uniforms as I tried to explain I had dysautonomia and this wasn't too weird for me. I got out my DINET card and passed it around. They all read it. Really read it. The cop said "wow I bet you went through the ringer before they finally got this diagnosis right." What compassion!

Unfortunately they decided to run an IV and cart me off in the ambulance -- because let's face it they were there and it must have been a slow a.m.

I was terrified ... thinking of all the POTS ER stories everyone goes through. But I also remembered you were all there with me. Holding my hand. I thought -- I guess I'm the POTS ER embassedor for DINET today. And I held it together. I told the EMT to please make sure the hospital called my cardio so that they'd have my relevant info. I told him POTS people can have a really rough time at a strange ER.

The EMT was terrific he really heard me. When they rolled the gurny in he told at least four of the attending staff that I had dysautonomia and to contact my doctors for proper info.

Turns out the ER doc on call knew about POTS. He said we've gotten lots of POTS patients through here ... but they haven't gotten the formal diagnosis yet.

We talked for a bit -- he did the ekg and sent me off to contact my doctor as necessary.

I saw my PCP this afteroon. He offered my lopressor -- this is a betablocker right? He said I could cut it in half and just take it if I was having another storm.

Do others take bb's as needed?

Anyway it's been a long day -- and I should just remind myself I did OK despite the circus.

Thanks for your good thoughts.

EM

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EM, You did so well with all of this! And, it sounds as though the ER medical crew deserves a great big hug, as well! I'm so glad that something that can be terrifying turned out so well. I hope you do well on your new medicine. I just wondered, you mentioned a DINET card. I know it's probably been mentioned a million times here, but where do you get one? I think, as many times as I'm in the ER, I need one!

Again, I'm so glad that your experience turned out better than expected. Let us know how your new med works out for you.

Linda

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Earth mother, wow that must have been scary for you, with your heart racing. I hope that you are feeling better.

I am glad that you didnt have a negative experience with the ER, and it sounds like the Emergency ambulance and police were nice to you too, that is good. I am so glad that the ER doc was responding positivley to your pots.

And dont worry about hitting 911, thats what they are there for to help you!

So they want you too tke lopressor an extra one as needed? I think that that would be ok, I take an extra propranolol, when I am having real bad tachycardia.

I am not sure if propranolol is a beta blocker, I think that it is.. could be wrong though.. :)

Your cardiologist cleared it right? the extra meds?

Well I hope that you are resting comfortably tonight and not feeling so potsy!!

Linda

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Guest tearose

Hi earthmnother, hugs to you!

Well, you certainly had an adventure today!

I am sorry you had such a storm and felt terrified. You must be tired from all the fuss.

The good thing about this is that you: are going to be okay; you gave others the opportunity to meet and assist you; you got to ride in an ambulance...you certainly left a wonderful impression that will stay with all those you met today and they may be better able to help someone else for having met you today!!!

I bet you are so glad to be home tonight!

You didn't let anyone down! Not even yourself! Don't even allow those thoughts to linger!

You are correct, we are sending you good thoughts and hope that you will get a good night sleep.

Take care to rest up now.

tearose

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EM, my gp wants me on a BB, but we've decided to use Cozaar instead because of the fact that I have asthma and BB's are generally contraindicated for asthmatics.

Good for you for teaching some people today...and how nice that you're experience, even if it meant an abulance trip, was pretty positive. Cool.

Nina

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Hi EM,

Congradulation for handling this situation so well. I am quite impressed (positively) also by the medical personnel. It shows that there is hope for all of us.

I take my BB every 4 hours.

Sweet Dreams

Ernie

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Sorry about the ER visit but thank goodness everybody really 'heard you'.

Yes, I take a beta blocker as needed...only once in a while...very low dose...10mg propranalol. It's generic Inderal. Many entertainers take bb's for stagefright as needed, especially the short acting kind.

Always know the name of your meds, folks, and what they do. and the kind of med it is. We sure can't count on the doctors and we usually know our own bodies better. If we aren't our own advocates nobody else will be.

I am glad you got a compassionate bunch, Emily. Nice to hear a positive ER story.

P.S. What, pray tell, is a Dinet card???????

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Wow, sorry you had a bad day EM, but at least the experience was positive. Lopressor is indeed a beta blocker. It's a very old one. Nice you got to teach people a few things while they fussed over you too! You should never feel bad about calling 911, it is always better to be safe than sorry.

I never heard back from the ER head at the hospital I went to, so I filed a formal complaint with the state today. But that is another thread. Just glad you are okay and hope you are back to "normal" soon. morgan

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Hi EarthMother - I am sorry that you felt so bad this morning, but am happy that the emergeny room personnel,emt's & police treated you so well today. Hope you have better days ahead!!!! :D

P.S. - Sophia - A DINET Card is the card that came with our bracelets when we ordered them that states the following information:DYSAUTONOMIA INFORMATION NETWORK-DINET.ORG "Dysautonomia can affect all automatic(autonomic)functions in the body, including the vascular,respiratory and digestive systems. Each day may bring health challenges for those with this syndrome including abnormal fluctuations in heart rate, blood pressure and body temperature. The simplest activity, such as standing up, may be a challenge!" - Hope this answered your question Sophia. Have a good night! Beth :)

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EarthMother, how are you feeling today? Hear hear to what Tearose and others have said ... You didn't let anyone down! You were absolutely at your best in a very difficult and scary situation! You done good ...

My favorite part of your story? That you felt all of us holding your hand when you were most afraid. It's true! We were there with you! Cheering you on and reminding you to breathe! (I have had many instances when I've conjured you up--last night, in fact, when I woke after an hour and my heart was doing flippityflops or some such dance...)

My doc has said I could take my beta blocker daily or as needed; it's prescribed both ways for folks like us. I take mine daily--12.5 mgs of Toprol XL--and many days I want to up the dose, but if I don't have it with me, I'm out of luck!

Let us know how you're doing, OK?

peace,

merrill

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Guest Mary from OH

EM-

Way to go!! I think you did a great job!! Of course, despite the craziness of the situation, you were the calm among the storm. I can just visualize you as this refreshing breeze coming into ER. You had them all hopping because of your calmness and organization!! Bless you! I'm glad that you had such a positive experience and that the emergency crew and the staff at the were educated and continued to be educated about POTS. What a pleasant experience depite the scariness of the situation. I hope you're feeling better!!

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Guest Julia59

Sorry to hear you had to go to the ER---but glad to hear they took you seriously and did their thing, and then later hooked you up with your PCP.

I've had those episodes---and they were very bad in the beginning of my POTS.

I have been on a beta blocker for 14 years now. I started in 1990 before I ever knew I had POTS or what it was. I was told MVP then----(1982) but didn't start the BBs on a regular basis until 1990. In 1982 the BBs were too strong, and I took phenobarbitol for a few months, and interestingly no symptoms for about 8 years until 1990. Once in a blue moon I would get those heart drops in your belly spells----OOOOOOhhh I hated that---and still do.....

I tried to go off it but I would get those spells of tachycardia and terrible shakes---yada--yada. But for about 10 years that's the only symptoms I had---other then a few milder spells in the 80s after my son was born. The bad stuff didn't start to happen until 2000----then I crashed with all the rest of the fun stuff we get. It seems when ever I got a little too thin--they seem to have gotten worse. Now i'm about 30 pds heavier then i want thanks to wellbutrin, and I only get those spells rarely, but I am also on the BB. My cardiologist in the 80s would be happy if I gain about 10 pounds, and he would always tell me you'll do better with a little weight on.

I can't do without the BBs. I'll even have a rather high HR on the darn BBs. , usually after stressful events, or over doing it ect.

I do Ok on the beta blockers, but now and then i'll get a little upper respiratory difficulty---mild though. Once in a while it will scare me a little. I also had weight gain from the BBs. When I started them I only weighed about 115 pds---then later more weight because of the wellbutrin.

They are excellent to keep the tachycardia spells at bay---but some don't tolerate them well because of the low blood pressure issues being the dominant feature of their POTS---or like Nina----the asthma does not get along with BBs.

I did increase the dose for a while in the beginning of my POTS, otherwise i've always been on 20 mg of propranolol three times a day---another 20 was when things got worse (2000). The BBs do not help the other POTS symptoms.

I think i'm talking in circles---so i'm gonna get out of here----- :unsure:

Julie :0)

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