Help- To Tilt Or Not To Tilt

[MelissaCrystal]

Okay so my Cardiologist is kind of weird in my opinion, but if you guys have been told this same thing let me know so that I can stop suspecting her of ignorance.

My first appointment with her, she said she didn't care about diagnosing me with POTS because there is no cure and a tilt table test is expensive and scary. She said she's going to treat my symptoms ONLY---orthostatic hypotension and tachycardia (based on simple bp and hr monitoring during sitting and standing). Then she said I should go to other specialists to treat the rest of my symptoms (GI, vision, etc).

Well, she gave me beta blockers, and told me to increase sodium in my diet. My health is declining because of deconditioning and not being able to walk much (which is my exercise). The beta blockers have made me very weak and have almost no immediate stamina, though I have more energy overall throughout the day. (I used to function in spurts, while now it's pretty much low yet even). Anyway, my point is, this isn't going to cut it. I need some more help from her.

I've gone to other specialists (for GI for example) but they keep recommending I go to a cardiologist since they don't know -why- my bowels are acting up and they don't know how to treat dysautonomia. I'm going to a Neurologist right now and she's getting me a brain scan, but it's going pretty slow (she's really busy).

I was wondering if I am going to benefit from asking my cardiologist to approve a tilt table test. She said it's my choice if I want to do it, but that she doesn't think anything helpful is going to come out of it. She just thinks I should keep working at getting in shape (I'm losing weight, I'm a thin person, right now I'm very weak and can barely stand for 10 minutes let alone walk for 30).

Does she know what she's talking about? Isn't there stuff to gain from doing a tilt table test, like the specifics and uniqueness of my particular case of POTS? What should I do and what should I say to her in order to help her help me?

[mkoven]

I've had two docs, including one ans specialist saying I don't need a ttt. I fit the criteria in the office, just standing. Apparently there is some controversy surrounding this., but the test itself is not standardized. I'm in no hurry to have one. I know my bp drops when I stand.

[Ernie]

Hi,

It's good to have one if you are asking for a pension. Otherwise, the diagnosis and treatment are the same.

[bjt22]

Its useful to have if other doctors question your diagnosis or have a difficult time understanding your problem. I had one tilt, years and years ago when my symptoms were actually a bit different. No one has ever seen the need to have me have a repeat, however. A couple of years ago, I had an exercise stress test. I lost my blood pressure upon standing up even before I got on the treadmill. I managed to stay on the treadmill for less than four minutes, and I was unable to sustain a readable blood pressure during that entire time. This was very useful information, because health care providers are much more familiar with the stress test than they are with the tilt table test. Therefore, it was very easy to understand why I might say I felt awful....they could see that when I'm upright, I don't have a measurable blood pressure. They could somehow relate more easily to this.

As to treatment, beta blockers, etc. I would love to tell you that there was a drug, treatment or combination of the two that would make you like you used to be. Some people are lucky and get really great results. For many, though, its a question of whether we feel kinda bad, bad, or worse. Its a give and take. Often, though, after a while, the side effects of beta blockers diminish quite a bit. For the first month or so I was on the one I'm on now, I felt quite drugged. Better, but drugged. This did improve. I'm not sure I have any particular side effects from the beta blocker now, but it does what it does, you know? It keeps my heart rate from going crazy, it helps keep my blood pressure more stable and improves the level of chest pain that I have.

[MelissaCrystal]

Yeah I'll ask her if a stress test may help her understand what I'm feeling during activity. That's a good idea, thanks. I think that's the issue here, me not being able to exercise. I think things would get better if I were able to exercise, so a stress test may help her more than a tilt.

I definitely wouldn't go off the beta blockers for any reason, I love them. I've been on them for about 8 months now and I'm happy with the ratio of pros and cons. I guess it just doesn't fix everything, and I'd like to figure out how to get to the point where I can get back to work, exercise, and normal day activity.

I made an appointment with her for Aug 5th to see what she's comfortable with doing, whether it's a stress test or something else. Thanks!

[mkoven]

One caution about an exercise stress test, and losing bp while exercising. I was sent to cardiac rehab, and they were monitoring me on an exercise machine, while my bp plummeted. The assumption of many cardiac professionals is that losing bp during activity indicates a severe heart problem, rather than an autonomic problem. It probably would have happened anyway, but I ended up getting very invasive testing to rule out heart disease--i.e. a catheterization, for what has turned out to still be autonomic. I guess I don't regret having that test, but it's certainly nothing that you sign up for casually. I"m still having problems with the leg that was punctured for the catheter, three weeks later.

If the docs really want to do a stress test on you to rule out a HEART problem, have them do a chemical stress test. For this, you are lying down, and they can really see what your heart is doing. Here, I think you should respond appropriately, because gravity is out of the picture.

If they want to do an exercise stress test, they might not be able to distinguish heart and autonomic, if you are upright.

I would just bring up that issue with your doctor. Having bp problems and symptoms with exertion can really freak out heart doctors.

[MightyMouse]

You may want to consider finding a cardiologist who understands your disorder better. Some people don't do well on beta blockers, as it can slow the heart rate down too much, causing the person to feel more symptomatic upon standing or sitting upright. If you bp is dropping, the rise in hr is functional in that it helps to keep your brain and organs getting adequate blood supply. If you're base hr is too low, when you stand, the heart can no longer counter balance for the drop in blood pressure and this can provoke presyncope (dizziness, trembling, greying out vision, nausea) and/or a full syncopal episode with a loss of consciousness as the body makes sure it protects your brain and organs by making sure you lay down.

I happen to be one of those people who cannot tolerate beta blocker or drugs that are supposed to level out blood pressure (I was on Cozaar, but my bp was routinely dropping too low to measure so my cardio told me to stop taking it).

The bottom line here is that you need a doctor willing to help you find what works for you, not what it says to do in some text book or journal article. Each one of us has different things that seem to help and different things that make things worse. For example, I do well with caffeine, especially in the morning when bp is naturally low. Others here cannot tolerate any stimulants including caffeine. I also did well for a long time on florinef, but my body has changed over the years maybe from age and changing hormones, and I can no longer use florinef because it make my bp way too high all the time.

If you can get your current cardiologist to work with you on tailoring your treatment, that would be awesome. If she cannot, then you might do well to find another --you can try looking at DINET's list of doctors, or hunt on your own. Many here will tell you that one of their biggest struggles with this group of disorders is finding a knoweldgable, responsive physician. I wish you the best with this.

Nina

[Guest tearose]

Even though we try limit testing to only what is necessary, a TTT does not seem like a luxury.

They are not fun but they are a controlled study that may get you information you otherwise would not have seen.

Finally, they captured my PSVT's on the TTT because it simulated my body at maximum stress.

I hated how I felt but was finally relieved they saw what I was trying to explain.

I hope you can go to a more pro-active physician, if that is what you want for yourself.

best regards,

tearose

[bjt22]

One caution about an exercise stress test, and losing bp while exercising. I was sent to cardiac rehab, and they were monitoring me on an exercise machine, while my bp plummeted. The assumption of many cardiac professionals is that losing bp during activity indicates a severe heart problem, rather than an autonomic problem. It probably would have happened anyway, but I ended up getting very invasive testing to rule out heart disease--i.e. a catheterization, for what has turned out to still be autonomic. I guess I don't regret having that test, but it's certainly nothing that you sign up for casually. I"m still having problems with the leg that was punctured for the catheter, three weeks later.

If the docs really want to do a stress test on you to rule out a HEART problem, have them do a chemical stress test. For this, you are lying down, and they can really see what your heart is doing. Here, I think you should respond appropriately, because gravity is out of the picture.

If they want to do an exercise stress test, they might not be able to distinguish heart and autonomic, if you are upright.

I would just bring up that issue with your doctor. Having bp problems and symptoms with exertion can really freak out heart doctors.

Yes...thank you for bringing this up. This happened with me, but fortunately, I had a cardiologist who did understand that losing my blood pressure was part of my autonomic dysfunction and not an indication of coronary artery disease. I had the thallium stress test which helped us decide that most likely, I had no major blockages and could probably skip a catheterization for the time being.

When I had the test done, I explained to the technicians that this was likely to happen, but they were still totally freaked out by it. They didn't even want me to continue after losing my blood pressure from just standing up. But by God, I'd come that far, and I wasn't leaving until I tried! I only managed to stay on for about four minutes, and they would only allow it with two people holding onto me. They were very happy when I got off. I wasn't on long enough for the exercise part of the test to make any real determinations, and I did have a few questionable ECG changes, but having that thallium scan did put me at ease...well, enough at ease to forgo more immediate testing. Somewhere down the line, however, I'm sure I will as I'm not getting any younger and I do have high cholesterol.

As a test result that allows for quick understanding, though, it is helpful...but yes, by all means, be prepared to deal with the question of further testing.

[mkoven]

just to add to the whole testing mess, I also had a positive adenosine thallium test, so there was no escaping a cath. Tests often seem to lead to more tests. In the end, they decided that the adenosine thallium test was a false positive, because my breasts messed up the signal. But they couldn't be assured of this, unless I had a cath. When you don't fit the standard protocol, or have questionable results that generally indicate a heart problem in the "normal" population, alarms go off.

I think if I had to have another chemical test, I'd ask for dobutamine echo. I don't know if one positive adenosine thallium means I'd probably have another, because of my anatomy (i.e. boobs). Dobutamine speeds up the heart while looking at it through echocardiogram. There breast tissue might be less likely to interfere. But i'm no doc, so this is just a hunch. Just someone who's been tested to death, and wants to avoid myself and others going down what was a very stressful road--to receive the same diagnosis I started off with.

(Even after all that testing, the folks at cardiac rehab still don't want to work with me, because they said they would still have to send me to the ER every time I got symptomatic. They said they have to do this for liability, even if I've already had nearly every heart test that exists. So for now, I've given up on them. I don't want to end up in the ER twice a week after rehab, to have the same %$# tests I"ve had before. Instead i'm going for slow walks, and stopping when i feel bad, keeping my cellphone and walker-with-seat or seatcane. Like many other health care folks, cardiac rehab people--at least the ones where I live-- don't seem trained to work with ans patients. Oy. So even if it would be safer to rehab in a monitored environment, no one is willing to take me on. So the only way to get rehab is by myself. )

[bjt22]

All I can say is thank God my boobs decided to cooperate! I've heard that about breasts and cardiac testing, though...not sure what I should take away from it since mine apparently didn't get in the way.