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chronic-tea

Upcoming Tilt Table Test for POTS

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Hello all! 

New here. I am about to turn 30 years-old. I've been having a lot of symptoms that are familiar to many of you. These include exercise intolerance/post-exertional malaise, fatigue, brain fog and related cognitive dysfunctions, and paresthesias throughout my body (pricking, burning, pins and needles, "wet" sensation), and more. I had to quit my job this year and do not feel able to go back to work of any kind at this time, particularly because of the extreme fatigue and the brain fog. I recently had to fly, and I had to get a wheelchair at the airport to do so. 

I have a tilt table test next week (at Stanford with Dr. Jaradeh), and I am freaking out- not about the test itself, but about the fear that I won't test positive for POTS or other autonomic dysfunction that causes increased heart rate. In September and October- when I first started tracking my heart rate- I could reliably go up to and over 120 heart beats per minute when standing. I had to cook for myself (when I could) in a rolling office chair because I couldn't stand or walk around that much. During this time, I tested positive for POTS with a "poor man's" table test every,. single. time. 

Then (in late October) I discovered that if I drink 100 oz of liquids per day, I do much better, and can mostly maintain a heart rate in the low 100's or even the 90's, unless I do what is now for me "heavy" activity. I've been doing that daily, plus eating 3-5g of salt per day. This has also allowed me to increase my physical activity (also good for the POTS). The increase in physical activity is "small" for a typical person, but HUGE for me! 

And of course now, my POTS response is much less dramatic and reliable.

I'm trying to pull back majorly on the liquids and salt starting now. I have no idea what to do about the physical activity- part of me wants to stop it until my test to increase my response (which is annoying because I enjoy it and it's good for me!), but my husband and I are also moving the day before the test. (It was either move the day before or the day after, and I chose before). I won't be hauling any boxes, but helping put things in boxes and removing them (which for me right now is "very physically active") would be great. 

An accurate POTS or other autonomic diagnosis is very important to me. Until I realized I had it and started treating it, it was hugely interfering with my life. (My symptoms still are interfering with my life, but it feels so significant that I've been able to do more things like take a walk or make a simple dish while standing!) 

If this test is negative because I've been treating POTS on my own, it's going to be so, so, so, so, so much harder to be evaluated for anything else autonomic. My neurologists already want to diagnose me with conversion disorder! They are refusing to test me for small-fiber neuropathy on the basis that "over-testing" has its own set of risks (like making me believe there is something really medically wrong with me 🙄- they also claim that small-fiber neuropathy would not help explain the fatigue or brain fog.) Stanford's autonomic clinic is waiting for these test results to rule on whether they will accept me as a patient (allowing me to be seen by a doctor who actually knows something about small-fiber neuropathy). 

I also believe that I have Sjogren's, which (I believe) is causing my autonomic dysfunction. My blood tests do not point towards a Sjogren's diagnosis (which as some of you may know, is not unusual). My first lip biopsy showed inflammation but not enough to diagnose Sjogren's- but also did not have enough material for a "full evaluation." I have a second lip biopsy scheduled for December with an expert in the procedure, but it seems relatively common that people develop neurological symptoms sometimes years before their lip biopsy shows up positive. In other words, I can't count on it showing up positive. Therefore, my entire "case" that I have Sjogren's is based on my clinically significant dry mouth/dry eyes + neurological symptoms. If I can't get a doctor to agree that I have neurological issues that are physiological rather than psychological, it's that much harder to persuade a rheumatologist to treat for probable Sjogren's based on clinical presentation. 😩

I'm trying to get my husband to go with me to the test. It's a hard day for him to miss work, but not an impossible one. 

There is so much riding on this test, it's just so so so so so scary that it could give a false negative. 

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Welcome to the forum!

I am also new here and this forum has been an amazing place of support and information. I hope you stick around. 

I can understand the stress and pressure on you for this test to be a positive. It definitely sounds like pots and am so happy to see you have figured out remedies to make your symptoms less severe and can do more with your life.

I am hoping for a positive test for you. Try not to stress too much. Your body will do whatever it is going to do that day. 

I was in the same boat as you. Diagnosed with pots after fainting during a tilt table. Two years later I had a new cardiologist and since I was doing better he was adamant I did not have pots. There was no way I had it. Even I was *almost* convinced! He wanted to do a repeat tilt table to prove he was right. I was convinced this test would be negative and my diagnosis of pots would be taken away from me. A diagnosis which was also important for me to get help I needed. But I Started the test with a heart rate of 70bpm and ended the test fainting with a heart rate of 140bpm. 

So I hope you’re like me and your pots kicks in when it needs to. Although it feels weird to want that for you because as you know tachycardia and fainting doesn’t feel very nice at all. Haha. 

Can you request another test if your results are negative?

Let us know how you go and feel free to message me any time.

 

xxx

 

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@chronic-tea - Welcome to our forum!!! I totally get your concerns about the TTT. But I just want to remind you that you do not have to have a super-high HR - it just has to go up 30 beats within 3 minutes and stay there. So - if your HR is 60 and jumps up to 90 AND STAYS THERE then you are positive for POTS. 

Having said that - I had my first TTT showing NCS due to syncope and my second one ( done by a dysautonomia-illiterate EP ) was interpreted as normal but when the autonomic specialist that diagnosed me later saw the TTT he said it was clearly positive for POTS. He explained to me that some less informed cardiologists do not necessarily take the symptoms in consideration but only want to go by numbers. I also had been to a famous autonomic clinic at the beginning of my illness who did extensive testing but told I was fine and prescribed me salt tablets. My specialist later ordered neurotransmitter testing and diagnosed me with hyperadrenergic POTS. He knew I had it after talking to me and looking over my records but had to proove that I had it. He said to me : " Your levels are elevated - here are the numbers they want". 

When I had my TTT's I was already on betablockers and they told me to hold them 3 days before the test ( which was very scary ). So I guess going back to normal salt intake might be OK but I would not hold the fluids or stop exercising. It might be difficult for you to move the day before if you change your home treatment for the test. Since you are clearly struggling with OI I think your test will be positive and it appears that the interpreting physician is experienced in POTS so he will be able to see what is going on. Remember - standing completely still during a TTT is much harder for POTS patients than regular standing. 

I also suffer from dry mouth and eyes ( which oddly is the opposite every morning when getting up b/c the sympathetic ANS kicks in and causes tears ) I was seen by a rheumatologist this summer and he checked every possible lab test for AI causes including Sjogren's and all is completely negative. He also did a tear test to see how many tears I produce and it was OK. So if your rheumatologist does not find anything I would be thankful and assured that you do not have Sjogrens. My M-I-L has it and it is a terrible disease. 

Best of luck with your testing and please let us know how your TTT went!!!!

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16 hours ago, MissMermaid said:

So I hope you’re like me and your pots kicks in when it needs to. Although it feels weird to want that for you because as you know tachycardia and fainting doesn’t feel very nice at all. Haha. 

Can you request another test if your results are negative?

Let us know how you go and feel free to message me any time.

Thanks so much for the welcome and information @MissMermaid ! I appreciate hearing your story of your second test. I probably can request another test if I come up negative, but it will be an uphill battle. Especially given that my current neurologists are pushing the "conversion disorder" diagnosis, which they say means that testing is "risky" (because it will further my belief that I have a medical rather than psychological illness 😒). I know I need new ones, but it will be easier to get a neurologist that is on board if it's positive. It'll just make life so much easier.  

7 hours ago, Pistol said:

@chronic-tea - Welcome to our forum!!! I totally get your concerns about the TTT. But I just want to remind you that you do not have to have a super-high HR - it just has to go up 30 beats within 3 minutes and stay there. So - if your HR is 60 and jumps up to 90 AND STAYS THERE then you are positive for POTS. 

Thanks, @Pistol ! 

You're exactly right that I'm putting too much emphasis on having a dramatic response. Because it's what I've been living with for so many months, part of me wants to "prove" it "when it counts." This is exacerbated by my experience of so many medical providers contradicting established medical fact (for example, my current neurologists' claim that small-fiber neuropathy is not associated with fatigue or brain fog) because they prefer to think I'm "hysterical." So I am also worried that medical providers might arbitrarily decide a mere 30 bpm increase isn't "really" POTS even if it's textbook POTS. I'm telling myself at least that this worry is a rational response to a system that has behaved so irrationally toward me.

You're right too that moving is going to be essentially impossible for me to participate in if I change my care routine. I'm probably going to do it anyway. We planned our moving day around me being too impaired to help (since that's where I was at when we planned it), so we have what we need to manage that: a hired mover, friends who've agreed to help, etc. Even at my best, it's not like I was ever going to be able to carry boxes. It sucks to participate less than I wanted to, but having a better guarantee of test response that no one can "argue" with is worth it. (And the husband agrees with that too, which matters.) 

Respectfully, I know too much about Sjogren's to be reassured by a rheumatologist not finding it. To me, it's the same as a neurologist not thinking I have autonomic dysfunction- most of them are horribly undereducated about the condition, and it's also very difficult to diagnose because the biomarkers for it are so poor. About 30% of Sjogren's patients have negative autoimmune blood work. My ophthalmologist found I have almost no tear production and am not producing sufficient oils to prevent tear evaporation either. I cannot eat food without water, and it's difficult for me (to the point of being painful) to go a full hour without sipping water. Only drinking 68 oz per day (my "cut back") is difficult for me. Sometimes I can't sleep due to dry mouth. I have incredibly significant fatigue, even with POTS management. In addition to the "classic" dry eye/dry mouth presentation, Sjogren's is the second leading cause of autonomic dysfunction after diabetes and a leading cause of POTS. 50+% of all Sjogren's patients have dysautonomia.

Furthermore, autoimmune conditions run in my family. When my father was diagnosed with rheumatoid arthritis 30+ years ago (around my current age), his blood work was negative also, but his clinical presentation was so strong his rheumatologist wanted to start him on treatment to see if he responded (with the understanding that, if he did, it would support the diagnosis). Not only did he respond, but his disease followed the expected course of RA, and you can now see his RA on x-rays, etc. 

Many, many patients like me have been difficult to diagnose but responded to Sjogren's treatment. Some patients have lived 3, 5, 7, or 10 years with the symptoms before the blood work or biopsies finally turn "positive" enough for a diagnosis- years that they've lost to disability, and during which they've acquired other organ involvement (lungs, kidney, lymphoma) that could have been delayed, avoided, or caught earlier (/believed in my medical providers) with treatment.

I know that you didn't mean to imply that it wasn't, but it's worth noting: whatever is going on with me is terrible. I am about to turn 30 and I can't work. I'm not even well enough to pursue my hobbies full-time in the absence of work- or even to pursue my hobbies almost at all. I'm focused entirely on eating, bathing, food prep, going to doctors' appointments, and maintaining a relationship with my husband; that takes up my entire life, although with enough rest, sometimes I can go to a social event. I can't exercise; I used to love walking. I'm at risk for eye damage if I don't follow a strict, multi-step/multi-medication eye-care routine. I can no longer walk through an airport. I'm constantly seeing doctors, but aside from the eye stuff, I'm currently receiving no medical care or treatment. 

I know we can't choose our diseases, but I would be very grateful to have something terrible for which there are medical management strategies, rather than something terrible for which no one can offer me anything. 

That being said, I truly do appreciate your welcome and your input, and I will absolutely let you know how it goes! 

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@chronic-tea - I’m right there with you. I only had a 30bpm increase for my TTT. In the cool like a hospital, I do better. If I heat up at all, I land in blackout city. The pulmonologist didn’t want to diagnose me with POTS, but did because the data was there. Because I’m a male in my 40s, he thought I couldn’t have POTS.  Dysautonomia is infuriatingly consistent about being erratic in the most frustrating ways. 

You are absolutely right; getting a diagnosis is a big thing. For me it is not just for dealing with the system, but also for “peace of mind” after being told “it’s all in your head.” We all hope it all comes together for you.

And I agree that small-fiber neuropathy can be linked with dysautonomia. I have small-fiber neuropathy and dysautonomia  (pots, dry mouth, dry eyes, sweat gland dysfunction, eye dilation issues, gut issues, and the list goes on) and fatigue. Tons of people on this forum, including me, suffer from nerve pain, fatigue and dysautonomia.

good luck.

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17 hours ago, chronic-tea said:

I am about to turn 30 and I can't work. I'm not even well enough to pursue my hobbies full-time in the absence of work- or even to pursue my hobbies almost at all. I'm focused entirely on eating, bathing, food prep, going to doctors' appointments, and maintaining a relationship with my husband; that takes up my entire life, although with enough rest, sometimes I can go to a social event. I can't exercise; I used to love walking. I'm at risk for eye damage if I don't follow a strict, multi-step/multi-medication eye-care routine. I can no longer walk through an airport. I'm constantly seeing doctors, but aside from the eye stuff, I'm currently receiving no medical care or treatment. 

@chronic-tea this is unfortunately exactly what POTS does to us and I am so disappointed that your docs need to be persuaded to test for POTS. I went through the same thing until I saw someone specialized in POTS - 5 cardiologists and a neurologist told me that it was anxiety or hysteria, despite the debilitating symptoms, proven severe tachycardia and hypertension when upright and frequent syncope. When I finally saw the specialist and he WAS NOT PERPLEXED by my symptoms but rather expected these and said they are all common for POTS - it was like the gates of heaven opened! It was such a relief to be understood and to finally know what is wrong. And to have a name to put to it is really important! Because this is an invisible illness and we do not look sick many people think we make it up but now we have a word that tells people that it is something real. Sad but true. 

I was not aware that Sjogren's causes dysautonomia. Would you mind sharing the article or source of this information? I would be very interested in that since my M-I-L has it. 

I hope all goes well with the move and the TTT. Best wishes!!!!

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Hi @chronic-tea-tea. Looks like you’ve had some good input on a few facets of your experience and concerns. I’ll add my experience with TTT. 

I had only done the stand test, at home no less. I did the test several times and met the POTS criteria each time. I was recently seen at a specialty center and I too was nervous that I had done enough to compensate via diet/meds/lifestyle that I wouldn’t meet the criteria. I elected to stop all the things that helped me a week before the appointment (they sent info that said to stop all but a few certain meds something like 24 hr before).  I had an out of state trip and arrived early. It rained the day before my test, so I hung around in the hotel room and read. 

During the test, I got a few symptoms but nothing like what I was getting with the stand test. So that added to my concern that I’d finally made it to this appointment and it would be for naught. My HR increased nearly 50bpm and went above 120, even though I didn’t feel super terrible. I clearly can’t know what’s going to happen for you, but based on what I experienced, if you’re symptomatic, you’ll likely be for the ‘big day’ too.  

I understand your desire to have a name for what you are experiencing. I don’t faint and I fall well within the ‘you look fine’ category, though I have a variety of symptoms which make life difficult and my social life very small. 

I wish you all the best with your move and your upcoming appointment. Please be sure to update us how you are doing and what happened once life settles down afterward. 

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