Crashing... Just When I Thought Things Were Looking Up

[Angelika_23]

Hi everyone,

Two weeks ago I was climbing stairs for the first time in eight months. I was on top of the world!

Then I got a sinus infection and my "monthly visitor". It went downhill from there. Tachycardia started running rampant, sometimes even when lying down. I wake up in the morning with tremors. Now I've developed this "bumping" in my heart. Kind of like the feeling you get when you are startled. It keeps happening at intervals all day long. No matter what I'm doing, sitting, standing, laying down, it just keeps happening. So I called my EP cardio nurse yesterday. They had me come in for an EKG. They didn't catch any of my little "bumps", but were unhappy with my HR being 136 lying down. So they made me schedule an appointment to see my regular EP cardio doc for today. I saw him, and he was concerned. He said his attempts to help are not seeming to help so much, and I REALLY need to get in to see Dr. Grubb. I explained to him I'm on the list, but not until July. He also said I need to find a neurologist that specializes in POTS and Chiari. He still feels that the Chiari may be causing my POTS. I saw two different, qualified specialists for the Chiari, and one said definitely surgery and the other said no surgery. So now I have to find a new doc and start over.

I am having some pretty bad chest pains tonight when I am up and about. So I am laying down feeling sorry for myself.

Oh, and I have a 24 hour holter monitor on. I look like I have a unibreast. That should be a hit at work tomorrow... But on the upside, I know it has caught at least 10 of the bumps and 2 of my chest pains, not to mention the nonstop tachycardia.

Thanks for listening

Angela

[morgan617]

Well, I am really sorry you are going through this, but I am certainly glad they are doing something! I hope they can get it under control. Just taking me seriously would be enough for me. My cardio would say, well it's not 180, so what are you so upset about?

I'm glad it sounds like you have doctors on top of things. As far as the chiari, it seems there is a lot of controversy about it, and that's the end of my expertise. You can always find someone who will operate, the question is, do you need to be operated on? You can always check and see how many surgeries these clinics do and don't do, so you can see if they lean towards conservative treatment or drastic measures. If you've got a clinic that operates on anyone and everyone, I'd be a bit leery. But it's also vice versa. You want to find someplace where they have a record of conservative and non conservative treatments that are more evenly matched. That's my only suggestion. Good luck sweetie! morgan

[Sophia3]

I am sorry you are in a funk but VERY HAPPY you are being monitored and taken seriously.

I have said before and will echo what Morgan said, BE VERY CAREFUL bout chiari surgery.

Too many have it and are not improved much in quality of life issues and OR go on to multiple surgeries/complications/repairs.

I think you have other stuff going on that needs to be addressed...then again, if down the road TWO OTHER DOCS would agree with the Chiari connection, I "might" consider it but would only do it with the new one inch incision version..but let's not talk surgery.

It seems you have a cornucopia of things that could be happening (Like many of us) but CATCHING your symptoms, could help a lot.

I am hoping your monitor picks up some things. And my two cents, do not do anything dangerous but PUSH yourself on the monitor to KICK THINGS UP to get a print out that will garner attention!

I am in your corner no matter what you decide and excuse my editorial on 'the surgery' deal.

[flop]

Hi Angela,

sorry to hear you're having such a rough time at the moment. I can sympathise about the sinus infection - I get those frequently and they always stir up my POTS symptoms and make them much worse than usual. The combination of period and acute infection is enough to make any one of us feel dreadful - I hope the flare settles down quickly.

I'm glad that your EP is taking this seriously. Having a holter monitor on is wonderful, and the fact that you are having the "bumps" and other episodes whilst it is recording should get some useful information. It may show rhythm changes or ectopics, but even if it is normal is would be reassuring to know that the horrible bumps aren't anything going wrong with your heart. So many of us have holter monitors that show nothing because we didn't get symptoms whilst wearing the monitor. (My hospital notes are full of "normal" holter reports, sinis tachy and nothing else, well until the last one that caught my atrial tachycardia).

(Tip - wearing loose fitting clothes helps to hide the ECG monitor, I did manage to go to a Christmas party a few years ago with an ECG monitor on underneath a holter neck top and no-one noticed it!)

Hope you're feeling better soon x

Flop

[Guest tearose]

Did you do okay at work today Angela? You are at least able to laugh at yourself...unibreast!

You must have looked unique today.

I echo what others experience, all it takes is one bad sinus infection or one busy day and you can backslide. It is good that they are looking into the heart issues.

Soon you will have more information. Hang in there and don't overdo anything right now.

I'm wishing that this is only a little setback and soon you will be zipping up those stairs again.

best regards,

tearose

[Maxine]

Sorry to hear your having a set back Angela. However, it looks like the Docs are taking you seriously, and it looks like they are trying to help. Try calling Dr. Grubb's office for cancellations, maybe you can get in sooner.

I hope things stabilize for you soon.

Take care,

Maxine :0)

[Angelika_23]

Maxine: Yes, I do call Sherry everyday, begging her to find a cancellation for me. She is a nice lady, and says she is doing everything she can to get me in sooner.

Tearose: Sometimes I do okay at work, sometimes I don't. Lately they've been having trouble with the heating and air system, so on the cold days it is cold, but on the warm days the heat is on. I can tolerate being cold better than I can tolerate being too hot. Yes, I always try to maintain a sense of humor about myself. Most people don't "get it", but you guys always understand. I have horrible red spots where the leads were fastened on my skin. But that monitor should have caught every troublesome symptom I've ever had, since they all "popped up" at the same time the last few days!

Thanks Flop: I am actually feeling a teeny bit better today, the symptoms are starting to subside. I hope they abate for a long time! My doc made me go back on the Florinef, the half dose, starting yesterday. He is upset with me that I stopped taking it. I tried to explain why, but he was having none of it, and said to take the small dose that I can tolerate reasonably well.

Sophia: You are a dear, and yes, I am being VERY cautious about that. I want to make sure I am doing the absolute right thing. I have two more names of doctors that I may be consulting with. I was advised to find a doctor who specialized in chiari AND POTS, but I don't have much hope that such an animal exists.

Thanks Morgan: I know you are going through such a tough time too, and I really appreciate your support. Sometimes I just feel so worn down by all of this.

You are all wonderful!

Angela