Since I got sick two years ago with my mystery illness, I've had a scary high heart rate and have fainted or come close to fainting dozens of times. I'm not too steady on my feet.
I finally got sent to a cardiologist for testing for POTS, and he did the tilt table test with me a little over a week ago. I mostly passed, although my heart rate did go up from the horizontal to the vertical. But I didn't pass out and my BP stayed level.
They told me it was important no one talk with me during the test because it was stimulating but no one mentioned that I needed to stay perfectly still. They kept me on the table for 40 minutes, and while I had some symptoms -- like getting hot and sweaty, feeling dizzy and faint, etc -- I moved my feet quite a bit because that helps when I'm feeling like that.
Then I read an article about the tilt table test afterwards that says it's crucial that the patient not move at all.
I had three people observing me closely. Wouldn't one of them have commented if I was doing something wrong? Did I?
Sadly, the people administering the tilt table test may not have been knowledgeable about the mechanism of what causes neurocardiogenic syncope and/or the PD form of POTS. Without having a firm grasp of the physiology involved in these disorders, a person may not realize that the patient moving her legs around could be a confounding variable that invalidates the results of the test.
The reason for this is basically that when you move your legs your muscles squeeze your veins, helping to return more blood to the heart. This "skeletal muscle pump" is compensatory against the venous pooling that occurs in NCS and PD POTS, and in milder cases may be compensatory enough to maintain adequate blood flow to the heart for a period of time. For a thorough discussion of the mechanisms of these disorders and a description of skeletal muscle pump, you may want to read some of the writings of Dr. Blair Grubb. Links can be found in our Health Pages under Further Research, and of course the most thorough discussion would be found in his book though that costs money while most articles--while more cursory--are free.
When you say you've had a high heart rate since you became ill, how many beats per minute is the heart rate? Does it lower when you lie down, or does it remain high (the latter is often indicative of Inappropriate Sinus Tachycardia or anxiety rather than POTS)? How much did your heart rate increase from horizontal to vertical during the tilt test? Did you tell them about the symptoms you were having? You do not need to faint to "fail" a TTT, and no change in blood pressure might also be part of the picture of a failed TTT in certain instances, some cases of POTS for example.
If your insurance will not pay for the TTT to be repeated but you feel that it was not accurate, you can possibly ask for your cardiologist to do a "poor man's tilt" in his office. The article which contains a description of this procedure is also in the Health Pages under Further Reading on Dysautonomia.
It's ironic -- I know full well that moving my feet can stop me from fainting. I learned that lesson more than 20 years ago when I locked my knees at my sister's wedding and fainted, knocking down the chuppah. :) (I was trying to stand perfectly still so she wouldn't complain when she saw the videotape after the honeymoon that I'd been fidgeting.) Anyway, I just wasn't thinking clearly during the test, I guess, or I wouldn't have done that.
These days, my heart rate is in the 90s when I'm lying down. It generally goes up to 110-115 or so when I stand. And when moving, it jumps to at least 140.
Before I got sick in June 2007, my pulse was generally 70-80 bpm, which was high but caused partly by my taking a decongestant.
When I was hospitalized in July 2007, my pulse was 120 or so when lying down, and would hit 200 or more if I moved around.
My blood pressure stays pretty normal, and on the low side, no matter my position.
But I get dizzy whenever I'm on my feet, and I have a bad habit of passing out if I don't recognize the symptoms and lie down in time.
I did tell the observers my symptoms, which included intense dizziness and getting hot and sweaty when everyone else thought the room was cool. I also got tingly in my hands and feet.
My symptoms of my mystery illness are numerous and varied. You sure you want to hear them all? :) I'm not even sure I can remember them all off the top of my head.
The tachycardia, of course, as described above.
Some of the worst symptoms are the chest pain and shortness of breath. I'm told that my heart is healthy and that the chest pain is most likely joint pain rather than heart. But they keep doing EKGs to be sure that hasn't changed.
I have killer fatigue -- and I'd love a word that's even stronger but I haven't been able to come up with one. I have little to no energy. I was a SAHM before I got sick, and we've had to put our daughter into full-time daycare because I can't keep up with her. I sleep a lot, but never feel rested. Exertion can leave me bed-ridden for days.
I have joint pain that varies, but is mostly in my hands, wrists and elbows. But I have little to no visible swelling despite an elevated ESR. (My hands did swell after a major over-exertion in February that caused a massive flare that I'm still not out of, but only for a few days.)
After my flare, I started having prickling in both hands and my left foot/leg. Sometimes it's mild enough that it's just itchy, sometimes it's painful enough to make me cry.
I have a low positive ANA, and a high positive anti-Cardiolipin IgM.
There's a heaviness or weightiness to my body that feels like I'm moving through Jell-O (i.e. thicker than water) or wearing full body armor made out of lead. I have apparent muscle weakness after over exertion -- most noticeable after my Feb flare -- and seem to be increasingly clumsy since I got sick. I've had numerous falls and stumbles, only some of which could be attributable to dizziness.
I was diagnosed with optic neuritis in early March and am seeing a neurologist on April 20 to be evaluated for MS and whatever else she thinks is pertinent.
My cardiologist doesn't believe whatever is causing my tachycardia is my primary problem. He believes my mystery illness (my name, not his) is somehow contributing to it.
Oh, I also have been diagnosed with monoclonal gammopathy of undetermined significance (MGUS), and have continued low levels of ferritin and Vitamin D despite massive supplements. My hematologist just prescribed IV iron infusions, which I start next week; he says it probably won't fix my fatigue problem since it's unlikely to be the main cause of my fatigue, but it should help a little. I'm getting referred to an endocrinologist who specializes in Vitamin D.
Whew -- that's a lot of symptoms. :)
I don't really think I have POTS, and I think the cardiologist just wanted to rule it out because everyone is concerned about my fainting. He wrote in my chart that I had "mild dysautonomia" and inappropriate sinus tachycardia as though they were two different things, but I've learned since reading here that dysautonomia is the umbrella term and IST is one of the Dx's that falls under the umbrella. I don't know if he was really giving a true diagnosis (since he didn't tell me directly) or if that was his reasoning for insurance purposes for the tests.
I'm glad you're lined up with all those specialists; it sounds as though they're exploring multiple explanations for your symptoms which is probably the best course of action.
If you do meet the diagnostic criterion for POTS, I would agree with you that it's unlikely to be your primary diagnosis/issue. Rather, you may have what is referred to as "secondary POTS," which means that you indeed have the diagnosis of POTS and all the symptoms, etc., but it is caused by (thus, "secondary") another disorder/disease process. POTS is commonly secondary to diabetes mellitus, amyloidosis, sarcoidosis, alcoholism, lupus, Sjögren syndrome, chemotherapy, and heavy metal poisoning (Grubb. Clinician Update: Postural Tachycardia Syndrome. Circulation. 2008;117:2814-2817). However, I imagine there are cases of other causes of secondary POTS; if indeed you do have POTS, the key to successful treatment for you may be finding the primary cause and treating that.
Your symptoms definitely sound like at least part of the problem is dysautonomia. Are they doing nerve testing on your arms/legs because of the prickling/pain you described? Peripheral neuropathy can be related to certain forms of dysautonomia and also some of the diseases that cause secondary forms of dysautonomia, so getting further testing on that may be enlightening.
My 13 year old son had a tilt-table test on Friday and he could NOT move his legs. He started trembling so badly that the doctor held his legs to the table when he was standing. My son was first diagnosed NCS but has an increased heart rate and has started a beta blocker. The doctor ordered blood work after watching him start to tremble with fatigue after standing for only 10 minutes. There is always something with dysautonomia!!
I'm hoping that the neurologist I see April 20 will order some nerve testing. I plan to ask if she thinks it would tell us anything if she doesn't suggest it herself.
Wow -- that's a long list of causes of secondary POTS! I guess the two I can rule out are alcoholism (I haven't had any alcohol since developing peptic ulcers in 2000) and chemotherapy. My blood sugar has been fine when tested (except when on massive doses of steroids), so I don't think diabetes is the problem either.
We'll see what the rest of the docs come up with, if anything.
Thanks *so* much for taking the time to respond and sharing so much info with me! I really appreciate it!
SM- My son, Nathaniel, started trembling 6 minutes into the tilt. He did not pass out as this test was to determine if his 5 meds are working and so we can feel good that they are helping his body do the right thing. He did feel sick the entire rest of the day after the early morning test. The doctor ordered some blood work after watching his legs fatigue so quickly. I am waiting for the results on the acetylcholine receptor antibodies. I have been questioning his muscle fatigue for nearly 2 years. I do not want him to have myasthenia gravis at all! The kid does not need an additional condition on top of everything already going on. It hasn't been a pleasant spring break waiting. He is currently on his 13th hour of sleep and was up vomiting during the night. Of course, school started back today! - KD
I'm sorry. The post you've responded to is outdated; it originated in April of 2009. If you have a question about autonomic nervous system disorders, tilt table tests, or the relationship between viruses and dysautonomia we encourage you to start your own new thread by clicking on the green "Post a Question" button at the top of the page in our forum. This will greatly increase the likelihood of your getting a response, as outdated threads such as this one are kept on the site mainly as a reference. As a rule, people are generally no longer awaiting answers to questions they posted over 3 months ago, let alone over a year ago.
Thanks for your cooperation, and welcome to our community!
Funny you should find this post now, because I'm scheduled for my second tilt table test next month with a different doctor at a different hospital. :-)
I was tested for EBV, but although I have old antibodies, I didn't have the current variety. (IGM? IGG?) It's been so long since they ran that test that I've forgotten the specific results, except that my PCP said it wasn't on the table as a possible diagnosis.
I appreciate your question since I remain a medical mystery!
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