Confused! What I should do?

[halmad85]

Here I go on another vent in need of some kind and supportive words.

I'm getting so tired of being the only one willing to help me. All the doctors covered by my insurance do not know what POTS is, so they can't help me. My primary's office is trying to get me approved for a visit with a not participating provider...It's been a week already and they haven't even spoken to the insurance yet to try to get me approved (they just left one message). I called my own insurance to see what I can do to help, but they said it has to be my primary. So, I have the TTT scheduled still with the doctor who doesn't know what POTS is. I want to cancel this test with him (as you guys advised), but I've been waiting to make sure I get approved for this specialist. Paying for the visit and test he will do out of pocket is not an option for me. The TTT is for March 1st. So, what if I don't know by then if I can see the specialist? Am I supposed to go anyway...or cancel, but end up not being able to see anyone else? I don't know what to do!?!

On top of it all, I asked my primary doc if I can have some kind of prn med to help me along with work hours (which, by the way, I asked for last week also and they never called me back to tell me what he said). I always have tachycardia and crazy symptoms while at work, probably because I have to be on my feet for hours at a time. I mentioned Ativan or Xanax just to try to calm the pulse...and he said I will have to see a pysch doctor before he can order that! WHY??

I just don't understand what everyone expects from me. I feel like I've been dealing with this alone for too long. Why can't I get someone to push to get my needs met?

What do you think I should do about this test? If I go to the Cardio who does the test, but isn't familiar with POTS, I could end up with the wrong dx or who knows what else. On the other hand, if I cancel and find out I'm not approved for a visit with the POTS specialist...what else would I be able to do at that point?

Thanks for listening again!

Jen

[Jacquie802]

Hi, I know how aggravating things can get. For months I was told by my old PCP that I had an anxiety disorder. I finally got help when my heart was going tachy for days and I went to see the doctor covering for my PCP (PCP was on vacation). I got hooked up to a heart monitor, then I saw cardio who referred me to EP....

Have you looked at the physician list on the main page? There are a few doctors familiar with POTS. Maybe you could get a referral to one of them...???

Hope you find a doc familiar with POTS soon, so you can get some treatment that actually works!

Jacquie

[morgan617]

I am so sorry. I don't know what to tell you. I will say the doctors argued over whether my tilt was positive or not. My pcp said you don't have to faint for it to be positive and the cardio disagreed. (greed being the operative word here)

I have no idea what my official diagnoses is and anymore I don't really care. However, I have the luxury of having a pcp who is willing to learn all he can and help all he can. He'll give me anything I need or want to feel better.

I guess I would be calling my pcp everyday until it's done. Just make yourself a massive pest. he isn't helping you anyway, so what do you care if they get a little irritated by you? At some point they will do it just to get you to leave them alone. If you want this, this badly, you'll just have to be your own aggressive advocate.

Easy for me to say, I know, but I've had a lot of problems with doctors too, as I'm sure many of us have.

Sometimes we are the only ones that can help us. And I have no idea why he won't give you a small dose of xanax. It sounds like he's got some preconceived notions about you (although that's just my opinion) and they aren't great ones. Maybe a new pcp. You may not find one who knows anything, but you may find one more willing to learn and help. good luck...morgan

[Laura]

Hi Jen, that is a tough position to be in. I'm afraid that I have no good ideas on what to do. There is no good choice. I think I would keep the appointment with the first guy, if you do that you can still see the specialist for another tilt if you get coverage, right?

Also, as far as the xanax or ativan, some PCP choose not to prescribe anti-anxiety meds or antidepressants for any of thier patients, they send their patient for a pysch consult and the psych doctor will do the appropriate prescribing. Then you can go to the PCP for refill prescriptions. I haven't a clue why they do it in this process, but I know for sure that this is how it works in some places. Laura

[Poohbear]

Given what you've stated above, my advice would be to have the tilt table test done and make sure you have gone off meds (if you can safely do so) prior to the test. If you aren't able to get off the meds ask them to document in the test report what meds you are on, how much you have taken and how long you have been on each particular medication.

It is possible that the test would be "misinterpreted" however, even if you can't get to a specialist right away the test data can usually assist another Dr. For example I was told by one Dr. I had a negative TTT. Well, it was negative for Neurcardiogenic Syncope however my heart rate went from around 100 to about 180 upon upright posture and stayed extremely high the whole time I was upright. So, while it was negative for NCS, it actually was Positive for POTS (it's just the Dr didn't know enough about the disorders to know what he was looking at). As soon as a autonomic specialist saw the test results he had a good idea of what to do for me. So....even if your test gets misinterpreted by one Dr doesn't mean the data won't help you at some point.

The other piece of advice I have for you would be to start documenting everything. If you have to lay down at work or leave early or be absent due to tachycardia then take your pulse and BP, write it down along with any other symptoms you are having and document why you had to rest, what job functions you could not do etc.

You can use this to both help your Dr to see how this affects your ability to function on a daily basis (which may push him to try harder to find some thing or some way to help you) and you may also be able to use this to show your insurance company what you are going through and what steps you've taken.

You may want to write a letter to your Dr. listing your symptoms and how it has effected your ability to live and work, reiterate for your Dr in the letter all the steps you have already taken and the things you've already tried and then state that while you need a local Dr to support and treat you, you are also asking he work with your insurance company to get you a referral/approval to a specialist in the field of Dysautonomia so that you can best effictively deal with your condition. You may also want to point out (for the purpose of the insurance carrier) that the insurance company has already been paying out money and that it would save them money in the long run for you to be seen by someone who can diagnose you and come up with a plan of action.

These are just some of the things I've found helpful in my case. I know it's difficult to write letters when you don't feel well but my experience is having it in writing does several things

It clearly states what you are saying, asking and documents the events so they can't be disputed later

It tends to hold people more accountable and sometimes pushes them to help you. It's much easier to ignore a phone call, a letter however, gets placed in your record and thus more of a "liability" (for lack of a better word) that they need to address.

Also, make sure you keep copies of everything you send to other people.

[halmad85]

Thanks alot for the replies and advice. I set up an appt with my primary to see what he can do to help me see someone who actually knows about POTS. I hope he'll know what to do to get me seen.

I also called my regular cardio who I love, and asked him if I can have a prn for the symptoms (I told my primary that I would do this). I wish so much that my regular cardiologist knew how to dx POTS because he is so caring and never makes me feel like I'm not telling the truth about how I feel. His nurse is wonderful. She's the kind of nurse that makes you feel like you're so important. She makes you feel like she's your own personal nurse. I can only hope that I do the same for my patients at work. But, he doesn't know how to treat me. I don't know if he will give me an order or not for Ativan or Xanax. I have read that many people have taken these meds here. Do they help when you can't get your pulse and symptoms to calm down? That's what I'm hoping for because I can't handle the way I feel when I'm at work anymore.

For now, I'm going to take your advice and keep my TTT scheduled if I don't get any reply from the insurance soon. The doctor I want to see is one that is listed on the DINET web site. I will bring the list of symptoms I wrote down for the other doctor and show it to my primary (hopefully he won't call me compulsive too). Usually he's always very caring and supportive of my needs...so, hopefully he will not be having any negative thoughts about me. Maybe he doesn't like that I am calling to see doctors I want to see instead of discusing it with him first, who knows?

The only med I'm taking right now is Florinef 0.1mg daily. I think it's got my BP up a little more than before most of the time, but I haven't noticed any change in symptoms yet. Only on it for 2 weeks. So, I think I should be able to hold it until after the test.

Thanks again for the help. I'm so glad I found this site.