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Question to you all..


dizzygirl
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Hi all...

I am wondering..I spokr with an NP today... and she wanted to know if the message I left at there office was right.. that my resting HR was 204.. and that it went higher with exucurtion...

YEs ma'ma it was... well she said that with such high tachycardia like that.. that it is just not POTS related tachycardia.. that we are dealing with a whole new level and kind of tachycardia...and that she said it is time for me to be seen by an EP cardio.. I'm like that is who my normal cardio have been EP docs.. and the one locally and the othere one in the state I live in.. both will not treat me anymore because.. they say that there is nothing more that they can do for..(ie. tried many many meds with no avail!)

SO this very nice NP said that well you need to bee seen by an EP before you come here.. and get hooked up to an event monitor.. so we can see exactly what you heart is doing beating 204-240 bpm...

its kinda scary.. actually alot scary..

this NP and my old cardio called told me today that I need to go to the ER immediately if my HR is over or near 200 again.. at first the nurse at the local office said that I needed to go to the ER if my HR is over 100.. and I am like come on now that is unrealistic.. if I did that I would never leave there.. then she sai if my HR goes to 140 or above and lasts for more them one hour.. that I better be on my way to the ER.. and not driving or riding the bus there.. (i'm Like well geez!.. not like I can drive anyways!!) because chances are I would/could pass out.. then said that if my HR is over 200 I need to MOST DEFINATELY be at the hospital....

I am guessing that my theory on riding it out an home isnt going to cut it...considering that my chest hurt so very badly yesterday and today.. OMG! it hurt to breath.. and my head and eyeballs hurt just as bad...

today they still hurt some but arent bad.. and my HR is now in the low 60's.. :):) Go figure!

the NP put me on a new medication... that is being used to treat pots and manage pots.. called cymbalta.. she said that it will help calm down my ANS system.. and help me till I can make the trip to Ohio.. and also gave me Levson to take for the tummy...cymbalta is originally used to treat depression.. but they are finding that it does something to the neurotransmitters in the brain and helps things with dysautonomia....

and that once I get there that they will thuroughly go over every thing else going on with me.. I thank god!!

But I am curious about this tachycardia thing... and kinda worried too..

hey good news today!! I caled that apartment building that I am waiting to get into and talked to them and told them that I was waiting for a wheelchair.. and they changed my status to the need for a handicapped accessable apaprtment.. and guess what??!! I am #2 on the list and one will be opening up in a few weeks and if the person ahead of me doesnt want the apartment for some reason.. i will be next in Line!!!

'm lke OMG!! that is so freakin' wonderful!! AWWW!! totally made my day...so I am praying that I will get this apartment and that if I for some reason dont get tis one that another one will open up soon...:)

allrighty folks thanks for listening to me ramble..

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Dizzy,

That sounds so scary and awful! I'm so sorry you've been having these freaky episodes lately :) . I wish I could say more to comfort you, but just know that you'll be in my thoughts.

Good news on the apartment though!

Could you take a cab when you have those scary episodes? Or is the hospial too far away?

Sorry to hear you've had such a rough week.

- Lauren

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Lauren Hi!

Yes the good thing about living in this appartment building is that I will be living less then 2 blocks from Hamot trauma center.. and then about 5-7 minutes away from St. Vincents were my old cardio doc is.. so a cab either way wont be more then a few bucks.. thank god.. but it still might be a bit before I get in there.. I am remaining hopefull though..

yes this tachy business is scary ... I wish I wasnt having it.. but I am..

thanks! :)

Linda

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200 Resting OMG!! That is abnormal and would freak the **** out of me. The highest mine has been is about 170 Resting, and i cant remember when that was, i know it was on one of my anxiety attacks.

I know this isnt easy, i have days were i just cannot do anything, although on many occasions if theres friends and family around i will get on with life no matter how hard it is. My worries and problems drag me down when im alone.

Will you be living alone? I know from experience that when your alone (goes for most of us) we feel more anxious cos theres no help or support. If you are or will be living alone is there anyway you can get a friend to moove in with you.

I really feel for you. At present im going to the gym cos i notice if im at the gym i feel better about myself and feel better about coping with life.

God Bless you

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Hi.. my tachycardia is not anxiety induced...I have been living alone now for about 9 yrs... with the exception of the past 5-6 months.. but when I move I will be living on my own...

SO most of the time I have dealt with this potsy business on my own.. without much help from anybody...

The only time that i get anxiety and panicky is when I start having trouble breathing...in the middle of the night.. and when I have bad alleric reaction to medicatio and cannot get to a phone :)

I hope that I can get some help with this tachy..!!

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Dizzy,

I know it must be difficult, but you really need someone who can offer support around you. Im not calling you weak or anything, but you need someone whos there to offer support and help you on your way.

Wouldnt it be nice to have a friend who can support you in the bad times you have in the middle of the night, or someone who can make you your dinner and comfort you whilst your really ill. You really shouldnt deal with this alone.

Im trying to say your disabled and need help or anything, im saying it from a point of view of myself and many others, support is crutial, you have a sholder to lean on, a face to talk to, someone to laugh with.

If your perfectly fine on your own then i give you the upmost respect and praise, as your a strong girl.

Sorry if it comes out sounding wrong to the reader, i mean well :)

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Dizzy Girl,

If you don't get to feeling better I don't know what we will have too do with you. I understand your worries, it sounds like you would have some kind of blockage. They have 30 day event monitors as well as 24 hour event monitors. I would definitely ask for the 30 day to make sure they get a very clear picture of your heart rate. My heart rate does not go that high it most of the time only goes up to the 140s, but ut starts out in the 40s sometimes even 30s. It is most of the time my blood pressure that goes up when I am resting 200/126 and down when I stand 80/60 sometimes even lower when I pass out 50/30. I do agree that everyone in our situation needs help at times I know how hard it is to think we have to realy on others. I am also very independent but I have learned when too say I need help. Getting the help we need means that we can also get the rest we need and they will help you to feel alot better. Ihave learned that I have too nap everyday for at least 2 hours and this helps me get through the day. I hope you get the help you need , and let me know if there is anything I can do. Meanwhile you will be in my thoughts and prayers.

Best Wishes,

Rita s

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Linda I've had exactly the same thing myself recently--running at 190-200 and then the following day dipping into 60 or below.

my new cardiologist has recommended yet another tilt test- I suppose he wants to see me have a do infront of his eyes.

But I always get a bit freaked by it. THe other night afte rI got out of the bath my pulse stayed in the 190s for a couple of hours when I was lying flat. It was very weird. Everyhting seemed warped. I should've gone to the er, but as i'm forever saying, here there is no point.

I guess if your eyeballs and head are hurting like that, you probably should go.

I know what james means about having someone around. Mine aren't caused by anxiety. but my pots attacks sure gte worse when I panic, and if I had been on my own over the last few weeks, I'd have REALLY been afraid. It might be an idea to see more of people when ypou're like this, so they can keep an eye on you, though I know when I feel rubbish I actually want to cut myself off. It's a difficult one. Is there anyone you can ask for advice on that? Any god mates living nearby?

good luck and keep us posted!

P x x

:)

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Hi persephone..

oh my.. they want you to do anyother tilt test!!?? my goodness I hate those things!.. tha last one I had done in July..I crashed hard after that one and havent been the same since!!

I wish you well and hope that you too can find some help!...

I know what you mean about the ER.. iavoid it at all cost.. itsno use going there.. they always say the same thing.."there is nothing that we can do for you here... you need to follow with your cardiologist's and neurologist.. the experts.."

so when I am bad I stay home!!

besides my bed is much more comfy then a hospital gurney!.. :):):P:P:P:P:P

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