Vent/update

[bttrflyamby1981]

Hi,

I want to cry right now, for fear, frustration, confusion.

I called the doctor's office this morning to see if I could take the Toprol Xl in the mornings instead of at bed time. While I had them on the phone I told them that I was having chest pain, but didn't think it was a big deal. Well they had me come in and make sure all was well.

It seems all is well. He gives me Protonix for heartburn. Tells me to come back on the 20th of October(an appointment I had set up already) He wants to do a holiter on this day. But he makes a coment as he rights in my chart. I ask him what that ment and he said that if they can't control the heartrate with meds then he wants to do a sergical procedure(sp) that will shock my heart.

So of course now I'll all upset....what??? Does he know what he's doing? He doesn't even know WHY my heartrate is high? I am at a point where I want to run away from ALL doctors. What should I do? I'm thinking about seeing another doctor, or at least asking for a referal to see the EP specialist.

I'm trying so hard not to cry!! But I don't know how long I can hold back. I always seem to feel as though more could have been done at the office. That it was a waste of my time and theirs. Does anyone else feel this way? I guess I am afraid to go to a different doctor because this one actually believes me something is wrong. This is way harder then it should be!!!

Thanks for listening,

Amber

[Guest dionna]

i would give you a hug amber. i am so sorry that they don't know what is going on with you. i hope that soon a miracle comes your way. i will be thinking about you and praying for you. take care of yourself.

dionna

[deeplyset]

One of the best things I took away for the Mayo Clinic was their Patient's Right points. It has helped me see how much I'm responsible for my care as they are and how to hold them responible. They are as follows:

Patient Rights

The right to have their pain managed

The right to a quiet, restful, and healing environment

The right to personal privacy

The right to the confidentiality of their medical records

The right and responsibility to express their concerns about any aspect of their care

"The interest of the patient is the only interest to be considered." William O. Mayo

The last one is what hit me the hardest. Not only did I have a right to do so but also a RESPONSIBILITY in expressing my care and concerns about treatments.

We all know our bodies and a lot of us know information about POTS the doctors don't. We are an assest in our own treatment. The most critical force.

Good luck. I'm sorry your going through all this.

Rachel

[jenwclark]

Sometimes, you just have to cry. This condition is a mess. I was only diagnosed with POTS at the beginning of this year, so I remember vividly what it was like trying to get treatment without a proper diagnosis.

I hope you find some help soon. There are good doctors out there -- the kind that will think outside the box and really fight for you. Here's hoping you find one of them.

Spike

[dawn]

Are you sure you are not having episodes of atrial fibrillation? Sometimes they shock your heart to get that to stop. If it continues it makes you feel awful. Your heart still pumps but it goes very fast and can make you feel short of breath and tired. Usually it can be controlled with meds. If it continues you have a greater risk of throwing a blood clot. If you are having sinus tachycardia (which most of have) I can't imagine why they would shock your heartl.

Don't be afraid to ask alot of questions.

Dawn

[kmpower]

And don't be afraid to get a second opinion. Even if the second doctor agrees with the first one, he/she may explain it all differently and you will not be so terrified. Knowledge goes a long way to ease some anxieties.

Crying might be a good release. You are among friends.

OLL

[dmaejean]

Hi Amber,

I am an emergency room nurse (a disabled er nurse now). I remember in nursing school they taught us that when the heartrate is over 150, the heart is going so fast that you can't tell what kind of rhythm, so we treat all fast heart rates as SVT's. Supraventricular tachycardia are beats that origionate inthe ventricles, the bottom chambers of the heart. First they try meds to slow the rate and if not they try cardioversion, which is what shocking the heart is. Most of the time that makes the heart stop for a couple of seconds and then it starts again and is in a sinus rhythm, beating like it is supposed to.

Most of us have sinus tachycardia, which origionates in the sinus node, in the atrium, the top chambers of the heart where the beats are supposed to origionate. Shocking doesn't help this kind of tachy. A patient told me that it feels like a mule is kicking you in the chest.

I am not trying to scare you Amber. But you need to check into why they want to shock your heart, even if it means seeing another doctor. I don't take any medication or let the doc's do anything to me unless I agree that I need it or it might help. So many patients do not know that they have rights. And like someone else said, sorry I can't remember who it was, we know a whole lot more about our bodies and our conditions than most doctors.

Don't let them shock your heart unless you know that that is what you need done.

Hope this helps. Good luck,

Donna

[yogini]

Hi Amber,

Sorry you're feeling frustrated. Most of us (if not all of us!) can relate to feeling frustrated and not making progress with the drs appointments. I would definitely get a second opinion, especially if your doctor doesn't specialize in dysautonomia. Maybe he is thinking about an ablation, which generally doesn't help POTS. You can read about it on the DINET page - or print it out and bring it to your doctor. And remember: you don't have to agree to any surgical procedure that you're not comfortable with.

-Rita

[labas_2u@shaw.ca]

Hi Amber

If the 'shocking' your doctor is referring to is actually is being cardioverted, I was was cardioverted twice(at one time). My heart was racing upwards of 240 bpm. The medications given would not bring it down so I was cardioverted once (which didn't work) and then again (which did). I don't remember much about it.....just remember waking up in the Cardiac Unit

My understanding at the time was that the heart cannot continue to beat effectively at those rates.....and if medications don't work then they use cardioversion. Mind you, this was quite a few years ago....

I would ask for a better explanation for why and how the procedure will be done..

Good luck and keep us posted

Maggs

[calypso]

Amber,

What is your heart rate? If it's below 150, you probably shouldn't be shocked. Unless, of course, you are not in sinus rhythm. Cardioversion is most commonly done for patients who have atrial fibrillation, and the heart rate with this is usually 200-plus. You need to ask the doctor what rhythm you are in, what the heart rate is and why he wants to cardiovert. And if he's talking ablation, that does not help POTS patients (unless they have another heart condition in conjunction with POTS).

Sorry you left feeling confused and upset. Please ask these questions before you get any more care from this doctor.

Amy

[AJVDK]

Hello Amber,

I wanted to drop a line and say I am sorry you are having a hard time. I think it would be a great idea to see a EP to see what there thoughts are. EP's should know when it comes everthing with the electrical part of the heart. I also think it a good idea that you have a holter monter as that will allow them to see whats going on more.

Remeber the doctor work for you, if you don't feel you are getting the right treatment, or the answers you need find a new one!

I wish you the best!

[bttrflyamby1981]

I'm feeling better emotionally. Thanks for letting me know you care. I can't tell you how much I need to know I'm not alone.

My heartrate isn't too high, I don't think it has even gotten over 150. It's just that I'm very symptomatic, even at 110 bpm. I'm not sure what type of rhythm I have.....that's what upsets me. He doesn't seem to know what's going on either. I did see a EP doctor who unfortunetly I didn't like. I think I would be better off with a doctor I don't like verses a doctor who's not sure how to treat me. (((SIGH)))

I go back on Oct 20th to get blood work and to do the holiter. I've done the holiter before and other then the skin reaction from the glue I'm not worried about that. At this time I will mention seeing the EP again. I don't think I will benifit at all from them "shocking" my heart, and unless he can prove to me that it will do more good then harm then it will not be done.

I do need to be more active in my own care. I just get so nervous and I feel like I'm on the spot. Something I'm tring very hard to get over. I need to bring in the questions I write down, but I feel stupid for shutting down the way I do I just can't bring myself to do it. But that's another issue.

Thanks for ALL your support,

Amber

[jenwclark]

Amber,

I've had to work really hard to learn to be assertive with my doctors. I would take in my list of questions, then decide that half of them were "stupid" and not worth bothering the doc with. I am much better at it now, but it's been a slow process. Be patient with yourself, and always notice what you're doing right, too.

Glad you're feeling less overwhelmed.

Spike