Okay, Confusion Setting In...heart Rate Stuff...

[Becia]

And this could be my brain fog, but bear with me.

The past two weeks have been pure **** on me. My syncope episodes were hitting of 20 a day, with many falls and injuries (thank god nothing major, just sprains and twists, but enough is enough there), and after nearly giving myself a concussion on Saturday with a fall they couldn't get me to come out of, a friend drove me to Ohio State University's hospital yesterday to be checked out for a second opinion. When I got here, I was due for a second dose of my midodrine, which I took in the waiting room, and told the staff, which were cool with it.

After all the er testing, I was sent to the observation wing, and it was too late to get my very last dose in, because I take it no later than 6pm, and it was 8 when they moved me. When I was in the er, my heart rate was 50-60, no higher than 70 or so while laying, but sitting me up shot it all to heck. And my blood pressure was really high, like 150's for the top number. That part has never been that low on me, in fact, I've had bps as high as 170's for the top number. All last night and today, they have been relatively high,or high flat out, like recently,it was 132/86.

Now, they have withheld all my normal meds, my midodrine and florinef all day, to observe what happens when sitting, when laying, and standing. Heart rate has been sky high, like sitting if I am rushed, 158 earlier. Standing it hit 171 and was trying to climb,but I passed out and it dropped down to the 90's it had been running through the night, unless I had a trigger happen, like when they drew blood, knocked on the door (noises really bother me, I'm also very sensitive to touch, but if the jerk had just used my ac vein like I requested, not the little one on my knuckle, we might have avoided that out). Being completely unmediated for these past going on 29 hours has been literally horrible, and really has me out of sorts.

I've read as much as I can about my meds, but I guess I'm missing it or not understanding it. I am under the impression that florinef and midodrine are to help increase blood pressure, yes? What the heck would be increasing my heart rate so much? Is this the POTS? Or is one of those two drugs help keep that lower? Sometimes even laying down I feel my heart racing like greyhounds at the track, which is really unnerving, and I think, one of the reasons I don't sleep well, because before my ablations, I felt every single PVC and misbeat, and it bothered me a lot.

They are sending me home right now, and I am being referred to Toledo in a possible autonomic system failure a a big possibility,but they are increasing my florinef for the time being to see if I can possibly pull out of this period somehow. I'm really freaked out, and I know panic is not a good thing for a Potsie, but I'm really tryingt figure out how to get back on an even keel again. I still have passed out around14 times today, with Iv therapy helping buff me up with my fluid and sodium intake, which they say is right on par (except I always feel like all I do is drink, and when it's times eat, I don't want to because I've filled myself up on fluids), and they gave me some potassium this morning too.

Am I confused? Completely possible. I am really trying not freak out, but its not easy. At least I'm getting to go home to a trigger free room, my comfortable pjs instead of a rough gown and bedpan waiting (they refuse to stand me up for any reason, even though I am normally good for a few minutes if I can go at my pace, and not rush), and honestly, my stash of m&ms, because this chick needs comfort food, and chocolate seems on par, lol.

Edited August 28, 2013 by corina

[Becia]

Also forgot to add, my friend let me know that after they started the fluids in the er, my hr went up and has stayed up... So... Maybe meds were wearing off?

I'm so sorry, but this is all new, foreign, weird, and confusing to me. All I know right now is I'm wheelchair bound, a fall hazard, and really tired.

[Hope]

Well I'm really glad you were able to be observed and they are sending you to Toledo. You can't go on like this. I hope they can help you soon! Your onset was a virus right?

[looneymom]

Hi Becia

Hang in there. I feel your frustration. I remember going through all this with my son in the very beginning. My son has low blood pressure and takes midodrine. However, he has spells of a high heart rate. That's the tachycardia part. He has this when he is sitting up in a recliner. What helped me the most to understand POTS was to just keep reading articles and to keep track of my son symptoms. POTS is a roller coaster. Sounds like you are going to get some medical help. Keep your chin up, it will get better. You will learn your body and be able to manage this eventually.

Rachel

[Katybug]

Becia,

I don't have much in the way of medical information for you but to say that you should keep going to doctors until they figure it out....at least to the degree that they can reduce your syncope. Florinef increases blood volume and therefore blood pressure. I haven't taken midodrine so I am unfamiliar with the particulars there. Your BP and HR are supposed to have an inverse relationship to each other....if BP goes up, HR should go down as part of the biofeedback loop to control the cardiac system. And, vice versa, increased hr should cause a lowering of BP to compensate. I can't say what is going on with you but I keep you in my positive thoughts and I'm glad you have given yourself over to a wheelchair until it's safe to be on your feet.

[Akgirl]

Becca, ((BIG HUGS)). I am sorry what a nightmare!! I hope you get It all sorted out...and SOON!!!! My thoughts and prayers are with you.

[Chaos]

Wow. Sorry to hear about all that you're having to go thru. Sure hope that they can get you sorted out quickly and find a treatment plan that helps bring some stability to your poor nervous system. Sounds like it's going thru the wringer and dragging you right along with it.

Like Katybug said, your HR and BP have an inverse relationship. Personally being on midodrine helps bring my HR down as well as bringing my BP up. But it only works if I have enough fluid on board for it to help. I'm guessing your HR is going up so much because you've been off the meds now? But that's purely a guess.

Hope they can get you in to Toledo quickly. Please take care of yourself.

Sending hugs!!

[davecom]

Becia I know how freaked out you must be. You have a right to be, there's no two ways around it - the whole experience is freaky. Yet, at the same time, reading several of your posts, I have this strange sense/feeling, I don't know where it comes from, that things are going to turn around for you and gradually, very slowly start to get better. I'm very glad they have referred you to Toledo. I can tell from the tone in this thread and some others you have written that you are determined to fight this, learn as much as you can, and get better. Don't let any setback deter you. Many good wishes your way.

[Becia]

Thank you all. I have a medical background, and literally it was overload yesterday, and when I finally got home, I just crashed and burned, cried on the couch while trying to eat some watermelon and explain everything to my household, and it was just bad bad bad.

You're right, I am determined to fight this. I've never been the weak one of the family, I'm the girl who had knee surgery and drug herself t work two days after because she needed the money for the family to survive. Looking back, probably that attitude of I have to go rather than heal, might have been a bit detrimental, lol. Maybe this is time for my body to heal. Maybe this is what The Lord had to do to make me stop, reevaluate my situation, and put me on a different path, I don't know, but wow... It's been a wild roller coaster.

Hope, from what I got from the doctors I met yesterday, they are believing that my two heart ablations are what set this off, not a virus. I asked my cardiologist if he thought I could have had is for a while at a lesser degree a couple weeks ago, and he said I probably had it for a little over a year at a different variant, but something has set it off, and boom here we are. OSU is pointing all signs at the heart ablations starting back in May, and I tend to feel that way myself, because yeah, I had some spells, it wasn't until about three weeks after the first one, I kept asking is this how my heartbeat is supposed to feel. And it's been downhill since then.

We are looking into getting a personal heart monitor to help track some of this stuff at home, and I'm thinking the med situation had it up, and the fact I had so many triggers around me as we'll, because I'm sensitive to touch, light, sound, things like that right now, especially while rehabbing an injury (sprained shoulder, which got way overused in the hospital trying to prop me up in bed so I could breathe). And they want me to better track my bp as well, so I had the info of when I have a syncope episode, which is so frequent, and how it normally runs, so I can take that to Toledo when I get the chance to get in.

All I know is right now, I have to adjust to yet a new "normal". It's not easy for me to change my mindset, but out of fear for those around me, and the fact I still feel the old Becia going "I have to be strong and do this", I have to do what I have to do. It's gonna be a long road. I'm just wishing I understood better what all was going on, because even with my medical background, I'm way in over my head.

I'm gonna do my best, it's all I can do. Like I have been reminded, I'm not broke right now, I'm just bend, but I have supports to hold me.

[Katybug]

Sometimes being strong includes knowing and admitting your own limits and finding a way to live happily within them. If you want a spreadsheet I made to track HR and BP by date and time along with associated symptoms, you can send me a P.M. with your email address and I'll email it to you.

[Hope]

A monitor sounds like a great idea! Have you considered a helmet? Not kidding. A gal I know locally here has low blood pressure and last week she past out, hit her head on the wall and wound up with a concussion. Just an idea since you are passing out so often. I think I remember somebody else on here a while back mentioning that they started wearing one.