Was Feeling Better, But Now I'm Devastated

[Angelika_23]

Hi All,

Back in June, I saw Dr. Jaeger at Cleveland Clinic. I discussed with him the difficulties I was having in cardiac rehab, and how I was spending more time on the floor there than actually exercising. He recommended I take an additional half of a half of a Toprol XL in the evening. (I usually take a half in the morning and that is it.) So he put me on a monitor and I added the extra Toprol. I was very nervous about it, I was worried my heart rate would get too low while I was sleeping.

So, I started doing better at rehab, actually working up a sweat without fainting, and I seemed to have a little more stamina. I got very excited, thinking I was on my way to feeling better, maybe even a cure!

Those hopes were dashed when Dr. Jaeger's nurse called and told me that my holter was showing that while I was asleep, my heart was going into a bad rhythm and I was to stop the extra dose of Toprol immediately. I was floored. I tried to find a way to work around it, but I have to wait until September when I go back to talk to Dr. Jaeger about what else we can do.

I cried about two hours today. I thought "normalcy" was in sight. I thought I might get my old life back soon. I had plans.

Thanks for listening.

Angela

[Chaos]

Sorry to hear your disappointing news. On the plus side, I guess it's good that they found the abnormal rhythm since that's probably even more dangerous than the fainting.

Maybe since you were finally progressing with your cardiac rehab program, you'll be able to continue to progress since it sounds like you're farther along than you've been able to get before? Maybe the Toprol was enough to get you over the hump and you'll be able to keep progressing even without it now. I'll certainly be hoping that's the case for you anyway.

Hugs to you! I know how disappointing it is when you feel like you're finally making progress in this situation and then feel like the rug gets pulled out from you again.

[toddm1960]

How do you feel when you don't workout? Or how is the rest of your day? Do you pass out when you walk to your kitchen or bathroom?

[Guest tearose]

oh dear, reading your update was hard, then when you said; "I had plans", I lost my composure and cried too.

I am so sorry for this feeling of loss. We here "understand" and are by your side. Please hold onto hope that you will again make plans, they will be different but still give you joy.

I hope you feel confidence in this physician who was wise enough to remember your spoken sense that your heartrate drops during sleep and ordered the test! I hope the time you spent in rehab has lasting benefits and if you can use compression garments, perhaps you will manage more again.

by your side,

tearose

[tinkerbella]

Angela,

I was wondering about you the other day. I too am sad to hear your new. Don't give up, think as positive as you can and know we are all here for you. I feel there is more of a ray of hope for the younger people here. Still, all of us must think positive and support each other always. When anything is really different my Pots specialist would say are there any pain issues out of control, have you been in the sun, IBS out of control dehydrating you, Are you keeping up water, salt and sports drinks, water and drinks need to be equal, count your salt intake, ( I can't add so I can't do that one, I'm so confused by all the different measurements and conversions), any infection in the body must be taken care of, if your blood iron stores that most docs don't check are low you will be a mess, My neuro checks them and no one else I was 4 one year ago and I should be 50 to make your heart work probably. Now I'm 22, and still feel like carp. so, sweet one do a full body intake of what is new and what is going on. If I go out one day it take me several to recover, meaning I'm dead tired. I hope this too shall pass with you, but remember the door here is always open and never closes. The L O V E is unconditional A L W A Y S ~ I will say a prayer for you right now ~

HUGS,

BellaMia ~

[Yolaclover]

I posted something similar on POTs recovery group. I had an amazing week, nothing, no symptoms, I started talking about it, being happy about it, thinking whatever I was doing worked and I was all better!!!! And then my symptoms came back, like they had never left. I get so upset, like, feeling as if I don't want to live any longer because it's all so uncertain.

Hugs, this too shall pass and we will feel better again. I know you will!!!!

xo

C