Update-advice Sought!

[mkoven]

So this week I've collected 3 doctors' opinions and tomorrow will get one more about how to interpret my sudden worsening, which includes bp dropping dramatically during exertion.

I posted on this a little while ago.

Here are the opinions-

Local ep wants to do a catheterization.

Another local cardio tells me I'm fine, just drink more.

Ep familiar with ncs and eds-- I saw him yesterday in Indiana. I had overall a good impression. Rather than a cath, he wanted to do a ct scan on my heart to check for blockages and any other abnormalities in my heart vessels. Less invasive, just the radiation. So despite having premedicated with a huge amount of prednisone and benadryl, I had an allergic reaction to the test amount of the contrast agent. They couldn't continue, giving me the full amount needed to see anything, for fear I'd go into anaphylaxis. So no dice. No ct scan. And a cath also uses the same agent, so no cath either. ARRGH. My blasted allergies turn on me again.

I spoke with the ep after, who was also disappointed we couldn't do the test. He thinks I may have two things going on. Definitely dysautonomia, but possible also something cardiac. He wants to admit me to the hospital and do some more tests to rule out the heart and start a trial of norpace for my ncs.

For the heart tests, he says there is a type of ct scan with no dye that can just tell you if you have calcium in your vessels. If there's none there, he thinks that means I have no blockages. He also wanted to make sure there was no abnormality in the structure of the vessels--like a kinking. He would want an extra thorough echocardiogram to see what they are doing. Those tests both seem reasonable to me. And perhaps some exercise testing.

I'm all up for non-invasive tests with no dye.

I'm a little concerned about the norpace. Although I know a couple people here have used it and are on it, it looks like an unusual choice. and given the potential side effect of sudden death, it's hard for me to get excited. HE said if my qrs interval is normal, he would not be concerned, and I'd be in the hospital when we'd try it. So if it's okay there, I'm then in the clear and unlikely to ever have a problem?

I think I like that he thinks outside the box and takes me seriously. I'm just afraid he's thinking too far outside the box. He seemed smart, but a little opinionated. And I think consenting to be admitted to the hospital is consenting not only to the testing, but also a trial of norpace. So I don't think I can pick and choose. He said he didn't think florinef would be useful for my ncs, as I would still inappropriately vasodilate.

I don't know what to think or how to make my decision. Tomorrow I'm seeing my ans doc in Chicago and will run this by her. I don't know if seeing him means no longer seeing her? I think norpace is not a drug she uses--maybe since she's a endo not a cardio. He would want me to be admitted early next week for about 3 days.

It seems like there is NO consensus among the doctors I've seen. This is troubling. I'm collecting diverging opinions with little sense of how to make a choice. (I keep thinking of the rather crude expression--opinions are like (the back end of any mammal), everyone has one. Including doctors!)

And today I'm crashing from the huge amount of prednisone and solumedrol from yesterday-- shaky, lowbp, starving, hard to breathe.

Please, any advice would be helpful!!!

[mvdula]

just had to say - i have actually never heard that 'rather crude' expression - but it is so true - puts everyones' opinions in to perspective!

[flop]

Hi Michele, sorry to hear that the CT angio was a no-go and has left you feeling rotten today.

As cardiology and endocrinology are such different specialities and it is suspected that you may have a cardiac problem I would have thought it reasonable that you could continue to see both doctors. I think it is always courteous to let consultants know that you are seeing a different specialist so they don't think you are doctor-shopping.

Re being admitted. I wouldn't assume that going in for tests = taking norpace. They would normally do testing before adding in a new med so you could always have the investigations done and then make up your mind about taking the Norpace. Norpace (generic = Disopyramide) is an anti-arrhythmia medication and you are correct that like most anit-arrhythmics it can also be pro-arrhythmic (that is it can trigger rhythm problems itself). My cardiologist considered prescribing it for me as a treatment for POTS and it is mentioned on the "what helps" section of the main Dinet website. The important thing is that anyone starting Disopyramide has ECG monitoring, they can very carefully measure the QT interval - if the QT interval becomes prolonged then it is indicative that you are at higher risk of nasty rhythm problems and the trial should be stopped. I know that there are members on the forum who take Disopyramide but I can't remember who at the moment!

Hope you manage to make a decision soon,

Flop

[Randi Free]

My daughter is on norpace. Before starting it she had an ekg that showed prolonged qt intervals. The cardiologist wasn't concerned as he attribites it to POTS. This was 3 months ago. She's been on norpace with mild improvement. Does the literature on this drug call for repeat ekg?

randi

[pat57]

I'm on Norpace and (as you probably know) I can't function without it. I hesitant to recommend it because it does carry serious warnings. The EKG at 24 hours is

an important factor for the Drs.

I'm a little concerned tho because you need decongestants or no? Seems to me you have a lot of allergies? If you do take decongestants- run that by the Dr. - re the norpace. It carries a warning on use with Norpace. ANYWAY

You might ask about a SPECT scan, or a PET scan. And lastly, like I said I can't function without the Norpace, so "I don't leave home without it".

Randi, my EP Dr. does EKG at each visit.

[MightyMouse]

Michele, what an ordeal!

Can they get images of your heart from a PET scan? The contrast agent for that is typically a radio isotope rather than the stuff they use for the CAT scan, so it would be less likely you'd have a reaction to that.

Hope you get some answers and they get you feeling better soon.

[mkoven]

thanks, everybody for your input.

To add to the cacaphony, I saw my endo ans doc yesterday, who was disturbed by all the invasive tests, meds, and procedures others have proposed. Not sure she wanted to talk to previous docs, as she says no one will agree.She is also against norpace, saying there's little research to support its use.

She sent me down the hall to talk to a cardio colleague of hers whom she respects. He thought we did need to find a way to evaluate the structure and function of the coronary vessels-- without sending me into anaphylaxis. HE thinks, along with everyone else, that it's very unlikely I have standard heart diseases, but that there may be some other problem causing the vessels not to respond properly-- either spasm, dilate, or constrict inappropriately. But we need more testing, and testing with contrast for the most part.

He thought an adenosine, thallium, or pet scan might show more of the function. But that we needed something to show the structure. And many of these are tests that can't be done where he is-- so I'd be sent out.

I then returned down the hall to talk to endo doc. Who seemed troubled by her colleague's response. She wants to contact various senior ans/cardio docs she knows around the country, and ask for their input on how to test to tease out cardiac and ans-- given my eds, symptoms, and allergies. And she's told me to try and hold off on collecting more medical opinions, as no one will agree.

But then everyone says if I get another bout of symptoms-- chest pain with exertion, which I do all the time now-- that don't let up, I have to go back to my local er where they have no idea what to do, to rule out damage.

I was so frustrated and overwhelmed yesterday from the different, non-overlapping things I've been told, and not knowing how to put it together, or who's running the show, I finally burst into tears in the endo's office. this is not typical-- and I think she's seen me enough to know I'm not a crier. And I get chest pain walking from the parking lot to the car.

Currently, the ep in Indiana thinks he's admitting me on Wednesday. I need to contact him to tell him to hold off??? One thing I liked about him was that he is responsive and wants to get moving. On the other hand, her approach is to be cautious-- which I like, as long as progress is still being made and I'm kept out of danger. She has been slow to respond and difficult to reach in acute situations. So now the ball is in her court?

I don't want to do anything rash, but I do want to do something. I'm someone who deals a lot better when I understand the problem and mechanism. I can put up with a lot if I understand. And I'm also someone who likes to take as few meds/do as little intervention as possible, because in my case, it often ends up making things worse. But I don't want to avoid these things just because. I want any choice to be informed and to have my care integrated by a doc who is really going to run the show, and really is looking out for what is medically necessary, but knows that I'm complicated and don't always erspond the way "normals" do to standard tests, treatments, and procedures.

I also have another appointment scheduled next week with a different local ep. The endo told me to cancel that for now.

I just don't know! But the uncertainty, and flurry of divergen opinions is not helping.

[Miriam Poorman-Knox]

Will write more when brain is

'on

' I had an elongated QTR on my EKG. This can be serious. Especially w/sleep apnea. This is often genetic. Miriam

[ajw4790]

Hi,

Wow! Quite the ordeal! I agree that you always have the choice to pick and choose your treatments a dr can not say you can't have a test, if you don't take a particular med. But, of course there is always those things that are related that can not be picked apart that you would have to do to get something done (i.e. the isotope for a PET scan etc.) otherwise it would't work. But those two things are not linked.

Also, for the drs. it is always important to not have too many cooks in the kitchen, each with their own philosophy and agenda, but at the same time if you have multiple body systems affected, there is no reason to not have an endo and a cardio at the same time. The grey area is that theoreticaly all things cardio. should be prescribed etc through the cardiologist. This is where you get those fun turf wars between drs.

If you go and say that you all out won't do what the cardio says, he may see you as noncompliant. If the endo is concerned, she should contact the cardio. I agree that other specialists may just muddy the water. But, your current drs. that are treating you need to communicate their concerns to each other and not make others be the middle man. They specialize for a reason, and should consult with other drs. when it is not in their field of expertise.

If the endo. won't talk to the cardio. then maybe try to call the cardio. and explain all your concerns, and possibly in someway bring up that another dr. was concerned about how his treatment may affect her treatment of you, and that the two ways of treating may not go well together. (or something?)

The worst would likely be to get there Wed. and then express concern of the treatment, or to upset either one by "taking sides". I guess communication would be key, and ask for all the reasons to do/or not to do something and make an informed decision.

Also, in times like this whoever is the overall coordinator of your care may be useful (PCP etc.) to contact these drs. Because theoretically they should have more of the "big picture" of your treatment.

I hope it goes as well as it can, they certainly put you in a pickle!

Remember the most important is YOUR health and we have to be our own advocates to that right. Don't let a dr. bully you into something you do not want to do!

[mkoven]

I sent a message to the EP in Indiana, making sure I understood the plan, asking if he's talk to other doctors, asking more about norpace.

He just answered. Apparently they were able to tell from the precontrast images of my heart, without contrast, that there is no calcium.

No response to my questions about norpace. No response about whether he's willing to talk to other doctors. It sounds like if I proceed with him, there is little to negotiate. He has a plan that involves a treadmill test (though I said I can't, because of my joints), an echo of the origin of my vessels, and a trial of norpace.

It could be reasonable, but it doesn't look like there's much wiggle room.

Hmm

[Miriam Poorman-Knox]

I couldn't do the treadmill tesr. There is another where they give you meds to see how you respond. Its no fun but it works. Miriam

[ajw4790]

Yeah,

There is a chemically induced stress test, but I wonder if that would be contraindicated for yourself?

Is the treadmill something you could try, and even if for a short period and then it will likely be stopped before completion due to joint pain etc. and not cardio. reasons, but in that time they could maybe get the info. they need.

Or possibly if they are trained and willing to budge, there are stress tests that can be done with an arm bike etc. I don't know if any of the other tests will show them what they are looking for, but maybe ask what they would give someone with severe arthritis or an amputee?

The echo should be fine right?

Would the endo call the cardio?

Man, what a pickle!

Good luck!

[mkoven]

I think that among the doctors I've talked to, no one wants to talk to anyone who isn't a colleague at the same institution.

the echo would be fine, and possibly the treadmill, if I could have them stop it when my hip slips out (which is sadly FREQUENT). It's just that I sublux every couple minutes. When I'm on solid ground, I can briefly stop to resposition. but not if I'm on a machine that wants to throw me off the back if I pause.

So I"m not opposed to the testing.

But I'm not ready for norpace.

And that sounds nonnegotiable, with this doc at least. So for now, I think I have to hold off with him-- even if I do eventually go back. It sounds like an unusual enough drug choice, that I doubt others would suggest it at this point.

I'll see what the endo comes up with through her contacts.

But I'm feeling a little strongarmed, and that's not an approach that works with me. I can't just be a good girl to please the doctor, if I'm not on board yet.

[mkoven]

The next twist in the plot of this lengthy saga-- the cardiologist colleague of the endo has set me up for an adenosine thallium stress test this Friday. And the two of them actually jointly agreed on this. Anyone know what this does/doesn't show? I searched dinet, and read that several people had terrible experiences with it, but not sure I understand what it shows about the structure and function of the heart.

[Miriam Poorman-Knox]

Its basically the same stress on your heart w/o exercise. I had this. Got the resullts almost immediately, and could have the right meds.

[mkoven]

Can I ask what it felt like?

[tiger]

Hello, I too am from IL, suburb of Chicago. Can you email me the name of your ANS doctor, is it a neurologist?

[Megan]

Good luck with the test!

Meg

[mkoven]

I called the place where the test will be done. They said that if I am able to exercise, I can just do the thallium, and skip the adenosine-- if I can get my hr up enough.

I explained about eds and how the treadmill is problematic, but I could do a bike. And this is the first place that said they have a bike too!!! I'd be thrilled to skip the adenosine, and then actually do the activity that makes me feel bad-- exercise!

I checked whether I could take midodrine before the test, and both the ordering doctor and the test place said yes. I guess that will allow us to better tease out what's hypotension and what's cardiac. That's also a relief, because my bp drops are awful right now, and I"m sure that alone would prevent my doing much of anything. And, if I understand correctly, adenosine is a vasodilater-- yuck! I'm already pretty dilated! Sounds like chest pain, syncope, and a migraine waiting to happen!

But if I need the adenosine, to get the results, oh well. But glad they're flexible and willing to let me try to do it "naturally."

[Maxine]

Good luck on the test---- . I totally understand your trepidation about the adenosine. Who wants that kind of grief--

You know your body, and what you can tolerate.

Some people can do just fine with the adenosine stress testing, but some of us with ANS dysfunction just know it's going to make us feel terrible.

HUGS,

Maxine :0)