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Pots After Passed Tilt Table Test


acp130
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I had a tilt table test conducted today. During which I felt badly when immediately being elevated.

At times I felt like I would pass out and began tapping my fingers vigorously on the table down by my side. I squinted my eyes when feeling lightheaded and woozy. Many times during the test I needed to take a deep breath in. I had a constant feeling like a migraine was about to set in. At one point there was a sharp pain in chest. At times I could only describe a sort of sinking feeling inside as "weird" to my cardiologist.

I was given the nitro spray under my tongue which resulted in making me VERY hot and gave me the sensation that someone was sitting on my chest. When I was describing these feelings to my doctor I couldn't even speak properly... I was talking very low, slow, and barely moving. That same sinking feeling was intensified.... But I never passed out.

My doctor said that he was surprised I didn't pass out because due to my experiences leading up to the test - he was sure I would have. I asked if a person is able to fight off passing out, to which he answered "yes".

Apparently this is what I did. He said that I passed the test.

However, upon the table being laid down, I immediately felt terrible. I started sweating. My palms became sweaty. My eyes even began watering to the point a tear came down my right cheek. I felt hot again. My clothes felt damp. They gave me fluids and that was the end of it.

Then my doctor explained the term POTS to me as "Postural Orthostatic Tachycardia Syndrome" and said that my heart rate was reaching anywhere between 128 and 130 at times during the test. Then he mentioned that my blood pressure did not dip as far as he thought it would. He prescribed Flourinef in order for my body to retain more fluid and I will see him in two weeks.

So I am wondering -

1) Can I definitely have POTS even though I didn't pass out during the test?

2) My aunt has MS and while researching POTS after my test I saw MS is an affiliated disease... should I be tested?

3) I have severe joint and muscle pain but my rheumatologist has recently ruled out rheumatoid and Lupus... should I ask him about fibromyalgia? (I saw that was another related condition)

4) Is there anything else I should be thinking of over the next two weeks until I visit my cardiologist for my follow up?

I SINCERELY APPRECIATE ANY AND ALL FEEDBACK. IT IS EXTREMELY IMPORTANT TO ME.

I am trying my best to obtain knowledge and become aware as possible.

Thank you!

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Hi,

Welcome to the forum!

Yes, you can definitely have POTS without passing out on your test. I'm sorry I don't really know answers to your other questions, but I'm sure other people on here will chime in with good advice. It's good that you've found a doctor who knows about POTS and I hope you do well on the florinef.

Best Wishes,

Lyla

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1. As everyone above mentions, passing out is definitely not a requirement for POTS. I've had so many times when I've thought "how am I possibly still conscious" but have never passed out. My body just won't give up :) If your doctor thinks that passing out is a requirement for a POTS diagnosis, you may want to consider getting a second opinion from someone who's a bit more familiar with it. A drop in blood pressure is also not required, in fact some definitions of POTS explicitly state that there should not be a drop in BP.

2. I think in some rare cases POTS can precede a diagnosis of MS, but I would not worry too much about it unless you're having other MS-specific symptoms. A lot of neurologists are very familiar with POTS, and in fact the top specialists are neurologists, so you may want to get your second opinion from one of them. They can also help you rule out MS. I had an MRI to rule it out when I was first diagnosed - very simple, and probably good to get anyway to make sure there's no other brain-related cause of your symptoms.

3. Yes, do ask about fibromyalgia, and also Ehlers-Danlos, which docradmd mentions above. If you're not familiar with it, it's a connective tissue disorder that's pretty common among POTS patients. A rheumatologist could probably help determine if you're hypermobile (one of the most common signs), but for a complete workup you'd probably need to see a specialist (usually a geneticist). Look it up online and see if the signs and symptoms fit with what you've experienced.

4. You may want to try to find a cause. Was this sudden onset or have you had lifelong symptoms? Was this preceded by pregnancy, an illness, a surgery, etc? Do you have other symptoms that don't clearly fit with POTS? Sorting through possible causes can take quite a while, and if you have a mild, easily manageable case, it may not be worth it to you, but it's at least something to think about.

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Like others have said, it's not necessary, nor is it even "common" (statistically at least) for POTS patients to pass out on TTT. By definition, POTS is diagnosed by a 30 BPM increase and/or if your HR goes over 120 at any time during the first 10 minutes of the test.

You can have, as many of us do, POTS and NCS (aka NMH) where you have the HR changes and then eventually have a BP drop but even then, many of us, don't pass out. I never have on a TTT or in real life, despite having "no pressure" and documented BPs in the 30's/20s on several TTTs.

The other thing to keep in mind, is that most knowledgeable POTS docs say that not only do you need to have the HR changes but you need to have other symptoms for a diagnosis of POTS. The fact that you were having symptoms before your test and during/after your test, along with the HR changes seems to indicate that you met criteria for POTS. Sounds like your doc recognizes this since it sounds like his diagnosis was POTS and he gave you Florinef.

There is a lot of cross-over between dysautonomia (POTS/OI/NMH) and other conditions such as Fibro, ME/CFS, IBS, Interstitial Cystitis, Sjogren's, so it's always good to have things checked out if you suspect that you may have them. The more symptoms you can control on the various fronts, the more it may help to keep your POTS symptoms from flaring as well.

Glad you found an answer for some of your symptoms, but sorry you are having to experience this. It's not a fun time. Hang in there.

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