Chest Pain

[shayden]

I have been dealing with POTS for approx. 4 years now. I have always passed out and had slight chest pains but something happened last week that I just can not let go.

I was at work, last Wednesday, sitting at my desk typing a letter to one of my customers. All of the sudden, I had a severe chest pain and I hit the floor. The next thing I remember is waking up in the ambulance almost to the hospital with the Paramedic rubbing my head telling me to "Hang in There."

When I arrived at the hospital, they did an EKG and blood work. All the test came back negative and they sent me home to follow-up with my general care doctor.

The following day, I went to my Doctor and he decided to double my current meds and insisted that I needed bed-rest.

I continued to faint approx. 7 times per day so I went back to the Doctor this morning. He checked my heart and he is stating that what ever happened last Wednesday, caused a significant amount of damage to my heart and I now have a Heart Murmur and need to see a Cardiologist immediatly.

I checked with my office staff that were present when all this happened and this is what they are stating:

I grabbed my chest, fainted, turned blue, shaking, sweating in the face but very cold everywhere else, Pulse 178, and hyperventilated.

Has anyone ever had anything like this happen? If so, did they explain what happened?

I am very worried and scared right now and no one seems to understand. Are my fears justified?

Please help!

Thanks,

Susan

[MightyMouse]

You really need to be seen by a cardiologist or an ep cardiologist who can follow your care. It's hard to say, just from your description, exactly what happened. Rather than worry, DO something about it and get to the doctor. I think that will give you better peace of mind than anything anyone here might have to say...other than our moral support.

Do hang in there and let us know what the cardio has to say.

Nina

[briarrose]

I second Mighty Mouse. You need to see a cardiologist right away. Let us know if there is anything we can do for you and hang in there.

steph

[justme]

I agree. You need to get to a cardiologist very soon. Have you ever been diagnosed with NCS? My wife has NCS and it actually causes her heart to stop beating. Almost lost her a couple of times. She now has a pacemaker and her heart rate can't fall below 50 without it kicking in. This still doesn't stop heart attacks either though. I'm not sure how your first EKG came back negative, but definitely get in to see a cardiologist. And hang in there!!!!

[Louby]

Hello,

please go and see a cardiologist as soon as possible, and let us know how things go, of course you are scared and frightened and it is rightly justified - however go and see someone who can puts these fears into perspective and give you the very best care you need.

Wishing you hugs and all the best

louby

[hilfgirl33]

Just wanted to send prayers and (hugs) your way. That is a scary experience and I think you probably won't feel significantly better until you get an answer. Good luck to you and please keep us posted!

[Guest tearose]

Suusaaannn where arrrreee youuuu? Hello newbie, how are you now? Please let us know what you did to follow up. I'm not a medical person but when I have had an SVT episode, my heart would beat so fast that before I could sit down, I would pass out. Your story reminded me of those days. Since those days, I wear a sports heart monitor that beeps at 140 beats per min. so I can sit down way before I am near "flipping" into a superventricular event. {I also wear serious compression pantyhose and a torso compression garment.) What did your cardiologist say? Best regards, tearose

[shayden]

Thank you all so much for your advice and good wishes.

I went to a new cardiologist the other day (this would be my 4th). After waiting for him for an hour past my appointment time, he was decent enough to spend 3 minutes of his time with me. He has scheduled me for an Echocardiagram and stress test for this Thursday which I probably won't see him then either. He then proceeded to tell me that I need to go to Toledo for another visit with Dr. Grubb. (Don't get me wrong...I absolutly adore Dr. Grubb...but have you ever tried to get an appointment with the guy??? I called the other day and he is not scheduling until the end of NEXT JANUARY! Here's a tip...I called the cardiologist office back and they were able to make the call and got me in for the end of April. Keep that in mind if you ever want to see him.)

After explaining to the cardiologist for the 2nd time, my general care practioner feels that I need constant care and follow-up, which meant I had to have a Doctor in the Columbus area, he is still insisting that I go to Toledo.

This is what I would like to happen...I would see Dr. Grubb once per year (since he is the best and all), and then I would have a cardiologist here in town that I could see as needed. Makes sense right?

Dealing with POTS is easy compared to dealing with Doctor's about POTS. I don't know about all of you out there, but I keep feeling as if Doctor's look at POTS as if it is something that I just made up before I walk in there office. Their lack of knowledge is unbelieveable but the fact that they won't take the time to learn about it for you, is just heart-breaking.

Please take care!

Susan

[MightyMouse]

Hi Susan.

I'm glad that you went for follow up care, and at the same time, I'm bummed that you're no place closer to an answer or help.I sure feel frustrated for you!!! I think each of us here has that hope of finding a local doctor to manage our care--and to coordinate that care with the autonomic specialists.

My first suggestion is to see about finding another cardiologist who's at least willing to learn. My second suggestion would be to ask Dr. Grubb and his staff if they know of anyone closer to you--given that you're still in Ohio, he may have someone he knows in your area that would be easier for you to work with.

Not sure if these things will actually result in you finding someone in Columbus---I'm still trying to find my "diamond in the rough" where I live.

Nina

[Sue]

Dear Shayden

Hi!! I too am a patient of Dr. Grubbs and know exactly what you mean about trying to get in for an appointment. I saw Dr. grubb about 8 weeks ago now, and have been in the process of changing medications because they are not working on me right now. Even with that in mind. I hardly ever get a return call when I call him, I am usually taking the advice of one of his nurses and don't even know if that is something I should be doing... that is why I too am looking for a doctor I can see imbetween visits. I would rather see Dr. Grubb once a year and have him consult with a physician here. That is a lot easier for me. My primary care physician has been doing this but she suggested a cardiologist because things are getting a little too complicated with her. I have an appointment this Thursday with a cardiologist at the University of Michigan. Am keeping my fingers crossed. I hate going to a new doctor/if they don't understand NCS or POTS they don't give us the time of day. Wishing you lots of luck..

Take care,

Sue

[Merrill]

Shayden--I am sooooo glad you're finally going to get that stress-echo done!

(Have you had one before? My experience: they hook you to a heart monitor to keep track of your heart rate, then they do a baseline ultrasound, or echocardiogram, of your heart at rest. After that, you walk on a treadmill--I was scared about that part, that I wouldn't be able to do it since my tachycardia is so bad with mild exertion, but it was OK. After they get your heart beating rapidly but still safely, they have you turn around fast and lie back down to repeat the ultrasound/echo of your heart. It's mostly painless--except my ribs are close together and I'm thin, so I did have a little soreness and bruising.)

I'm sure that episode on 3/22-3/23 scared you--and your doctor's comments afterwards were alarming (and absurd, given that no one had yet taken a look at your heart muscle)! But this test will reveal a LOT--so take heart, so to speak, in that.

Don't you have a follow up appointment scheduled with the cardiologist who ordered the test? That seems like a MUST--call and see if you can even get one the same day you go in for the test! The optimist in me is thinking that cardiologist couldn't offer you much in that first appointment; s/he needed to see the results of the stress-echo first.

You've got a lot going on write now--dealing with POTS and what sounds like NCS if you're fainting. But you're also trying to figure out what that trip to the ER was all about on the 23rd and whether or not "damage was done" to heart. Try to take it one thing at a time, one day at a time.

I have a former colleague (not a pots person) who lived in Columbus, and he had a pacemaker and undoubtedly fine cardiac care. If you want, I can contact him and find out the name of his doctor. (I wonder if you've already seen him/her?)

Wishing you the best of luck and health,

m

[Guest Julia]

Shayden,

Your lucky to be seeing Dr. Grubb so soon! I'm happy that your taken seriously and something is getting done to make sure everything is OK.

My thoughts and prayers will be with you---hoping for nothing serious to be wrong with your heart. My husband who DOES NOT have POTS is experiencing chest pain in the last couple of weeks. He's not even able to exert in any way without getting out of breath. Just sitting---he's out of breath. When he lies down the pain get's worse.

He had an Cardiac/Echo done Monday. Were hoping for the results tomorrow. He's never had anything like this before. He's relitively thin---with no family history of coronary artery disease. His lipid levels were done to make sure his cholesterol levels are good. He and I can't believe he is so wiped out.

I have an appointment with Dr. Grubb in April also. I live in Toledo---and still haven't heard from his office regarding some complications i'm having. My neurosurgeon has contacted him also---with no response. Very busy man. I'm not going to bother him now---i'll just wait until my appointment on the 22nd.

julie :0)