A POTSie Life For Me

Yesterday was a very overwhelming day, but I’m going to try my best to make it somewhat comprehensible.

After six months of waiting (seriously, I scheduled this appointment in January), I finally had my appointment with Dr. Wilson. He’s a neurologist who specializes in POTS and has patients come from all over the country to see him. And now it was finally my turn!

I started to feel anxious as soon as we got off the highway at the exit; I’ve driven it myself hundreds of times to and from work, but my hospital phobia started to kick in. It had been three months since my last appointment, but it didn’t feel long enough to me.

I submitted myself to the wheelchair this time because it was very hot and humid outside, and we parked in the employee garage to get free parking. (Haha, free. The amount we pay per month as employees for parking is ridiculous…) Plus I knew Dr. Wilson would likely be doing testing that would probably make me not feel too well after the fact. I felt so self conscious, afraid of bumping into someone I knew.

I’ve never waited so short a time in a waiting room before. I was expecting to wait a long time, but I was called right back as soon as we’d settled into the waiting room! The lights were off in the exam room (this guy is smart), but there was enough light coming through the blinds to be able to see. The nurse did an initial blood pressure and heart rate and said Dr. Wilson would do the orthostatics himself. We only waited another five or so minutes before Dr. Wilson came in.

I liked him right away. Very personable, but he sat down and got straight to work. He said he’d read my chart and, “Holy cow, all this stuff happened in 2016! But 2017 kind of just…” Yeah. I had to explain that I was diagnosed with POTS in January, but have essentially remained untreated since, with the exception of lifestyle modifications that haven’t helped much. Luckily I had typed up my medical history starting with my celiac disease diagnosis in 2012 to the present, so I basically read that to him while he typed. He was impressed at my organization and level of detail (that’s just me being me, haha) and asked for a copy, so I just gave him the one I had.

He immediately started making connections as soon as I said “celiac disease.” That was a huge red flag for him in terms of issues contributing to the POTS, likely due to the fact that celiac is an autoimmune disease and autoimmune diseases have a tendency to contribute to POTS. And while endometriosis is not autoimmune, he notes that there have been some correlations noted between it and POTS. Regarding the brain tumor, he said issues with the pituitary gland are seen more often in POTS patients than in the general population. He said the bone-crushing fatigue I experienced beginning immediately after my brain surgery that had me sleeping 16-20 hours a day was a glaring sign that the POTS was starting to make itself known; surgery is a known trigger for POTS.

While there is no true causation noted between POTS and any of these diseases, a correlation has been noted in that these issues have been seen more often in patients with POTS. Between all of these, he was most convinced that the celiac disease had essentially been the first insult and the addition of the other conditions (endometriosis, brain tumor, brain surgery) just caused my autonomic nervous system to decline from there.

Following all the chatting, we got down to a physical exam. First was a supine blood pressure and heart rate, which were 137/92 and 93, which are quite a bit higher than normal for me while supine. Then I had to stand absolutely still for about five minutes and he measured my BP and HR about once a minute. The results were quite surprising to me:

  • 127/96, 98
  • 125/93, 110
  • 134/100, 114
  • 130/95, 95
  • 130/86, 99
  • 135/82, 103

Keep in mind this was happening as I was standing still, not moving at all. I couldn’t rock back and forth or even wiggle my toes. (But I didn’t lock my knees, since I know from years in choir that that can make you pass out.) About halfway through, I began to feel a bit woozy and as he was asking me questions, I was having a hard time thinking of how to respond. He asked me at one point if it was a bad day for me and I said, “No, this is normal.” This is normal. When the heck did THIS become normal? He said, “Right now your heart thinks you’re walking on a treadmill at 3 mph.” Seriously, heart? He said I might be having an adrenaline dump causing the numbers to be high and that if we went longer, my blood pressure might bottom out and I’d pass out. (Notice the diastolic beginning to creep down?)

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This is what happens to some people who pass out during tilt table tests, even if they’ve never passed out before. Luckily, we stopped. Whew.

My physical exam was pretty normal. He noted the hyperreflexia in my legs, as have at least three other physicians in the past year and a half. (Seriously, my legs jerk out and then swing back and smash the table before I regain control.) But he was the first to tell me it might be due to the damage from the brain tumor. Huh.

Then he had me do a timed walk of 100 feet in 25 seconds while hooked up to a pulse ox and heart rate monitor. He raced up and down the hall with me (it was a short hallway, so we had to turn around several times) holding the monitor while saying, “Interesting, interesting…fascinating…that’s incredible…oh, you poor girl.” I had no idea why he was saying these things. My resting heart rate before starting was 98 and it ranged from 89-122 during the test. I thought that was fine given how fast I was walking.

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But he said, “If you put me or another healthy adult in the hallway and did that, our heart rates would stay in the 50s-70s the whole time.” My jaw was on the floor. Had there been a time in my life when I had been that healthy? Obviously there had been; as a former dancer, I used to be the epitome of physical health. But that seems like a lifetime ago. My heart sank as I realized what I’ve lost.

Based on his assessment and our discussion of my symptoms and medical history, and after spending a full hour talking with me, Dr. Wilson confirmed that I am a “classic” case of POTS, no question. He said, “As soon as I saw your blood volume and hemodynamic test results, it was obvious you have POTS.” I have a slew of follow-up stuff to do:

  • Start Florinef, with a lot of flexibility to adjust the dose as I see fit.
  • Switch to above the knee compression socks (anyone know any good brands?)
  • Possibly an abdominal binder (which I have two of from my endo surgeries in Atlanta and which I HATE because they ride up and squish my boobs…so we’ll see…)
  • 11 different labs to rule out other causes or mimics
  • Cardiac rehab consult (which I will do this time…I honestly wasn’t ready in February, but I am now.)
  • Two ultrasounds: mesenteric artery vasculature and renal venous vasculature to check for thrombosis, given my continued pelvic pain and severe bloating. (So help me if it’s this man who discovers the cause of my remaining pelvic pain, I will kiss him.)
  • Participating in shared medical appointments as I can, where he discusses aspects of POTS in a group setting with other patients.
IMG_2176
First dose of Florinef!

As we were wrapping up, Dr. Wilson said, “I’m really hopeful about you. I think you’re going to do really well.” Note to doctors: it is incredibly empowering to a patient if you express optimism to your patients when it is due. It can make all the difference in the world in how your patient perceives their condition.

I’ll admit I need some more time to adjust to all these new developments and consults and tests before I will share that hopefulness and optimism. But it’s more than I’ve felt in close to a year. So I’ll take it.

💛ribbonrx

28 thoughts on “A POTSie Life For Me”

  1. Q: Did you have excision done for Endo? My DD just had it done yesterday. We drove 2 hours away to Nancy’s Nook approved Dr. Only 100 in US. Without excision the pain will remain. Ask to join the FB group which has info that has ended the nightmare of repeat failed surgeries for so many women. Good Luck🍀

    Liked by 1 person

    1. Hi there! Thank you so much for reaching out; excision is so important!

      Yes, I did have excision! 😃I traveled 700 miles to see Dr. Sinervo at the CEC in Atlanta. That was back in 2014. The man is a miracle! He also operated on me a year ago today, actually, for additional pain that we thought were adhesions, but it turns out I had a broad ligament hernia that was causing ovarian torsion. He fixed it and confirmed that there was still no endo from where he’d taken it out before! 🙌🏻 I do also have adenomyosis, which causes a fair amount of pain, but I can’t do anything about that yet since I still want kids. But there’s still something else going on causing pain near where that hernia was and it actually makes sense what this doc I saw yesterday said about it possibly being thrombosis in the vasculature; I have an endo sister who had pelvic congestion syndrome and had a procedure to open up the vessels and she’s basically pain free today! We’ll see what happens.

      How is your DD doing? Recovery from excision takes awhile, but it’s so worth it if you have a good specialist. Who did the surgery? Best of luck! 😊

      If you want to read my whole endo story, here’s a link; it was the first series I wrote on my blog when I started it a year ago! 💛🎗https://ribbonrx.com/2016/07/01/you-have-what-in-your-where/

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    2. Oh, and by the way…you are AWESOME for reaching out and raising awareness for endo! That’s what we need to do, and I’m so happy to see others spreading the word about excision! I’d like to give you a hug! 🤗💛🎗

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    1. He’s so great! I’m so lucky to have found him!

      I never had hyperreflexia before the tumor. The first time it was noticed was when neurology saw me in the emergency room when I was there for a horrible migraine about two weeks before the tumor was found. Both the intern and attending commented on it! 😬

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  2. Have you heard of ehlers danlos syndrome? It’s one of the main causes of POTs and reading your health history lots of read flags we’re going off for it!

    It’s a genetic connective tissue disorder so can affect any part of your body but commonly causes hypermobility, pain, fatigue, easy bruising, skin issues, gut issues like celiacs, bladder issues, uterine issues like endo, POTs and many more.

    I never thought I was hypermobile as I could never touch my toes, but I didn’t realise the range of movement I had in other joints wasn’t normal. After I was diagnosed so was my dad (who had been misdiagnosed with MS for 15 years) my brother and my daughter.

    Wishing you all the best xx

    Liked by 1 person

    1. It’s funny you mention that! I saw a geneticist a few months ago because I suspected EDS, but he said I don’t fully meet the criteria (my Beighton score was only 4/9), so he said I have an “unspecified connective tissue disorder” that could be hypermobile EDS developing. I’ve always been flexible because I grew up as a dancer, so none of it seemed unusual to me before (I can not only touch my toes, I can fold myself completely in half!) Wishing the best to you and your family! I hope your lives aren’t too terribly affected by it.

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  3. Hi, sounds like you have an excellent specialist. I have POTS and was only diagnosed 1 year ago, I am in the UK and my specialist doesn’t sound as good as yours he sounds very thorough. I am on Midrodrine and Propranolol but am bedbound pretty much and so they treat you as that is why you are bad. I also have EDS so constantly in pain. All the best xx

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    1. I’m so sorry you still feel so awful! Are you hydrating properly and taking in lots of salt? (I’m sure you are, but just wanted to ask.) And you have EDS too? I have an “unspecified connective tissue disorder” that isn’t full EDS. I have found compression socks to be very helpful.

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  4. It is amazing how much we have in common. Pituitary tumor. Hyperreflexia. Endometriosis (never confirmed, but they think so). Probs with my guts. Similar vitals. I also pay a stupid amt of $ for hospital employee parking. This is kinda funny. I wish we could meet and sit down and share stories. Im so glad you found such a great doctor. It makes all the difference in the world. Hopefully this will be a turning point for you. I’m lucky to see Dr Grubb. Please continue to share!! It blows my mind.

    Liked by 1 person

    1. Wow, we could be the same person! I’m in northeast Ohio, so you can’t be too far away, haha. I’m so glad you see Dr. Grubb; I’ve heard great things about him! What kind of tumor do you have? Mine was a prolactinoma.

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  5. Great post! My diagnosis came from my cardiologist after a dramatic tilt table, he started me on fludrocortisone and then midodrine – then referred me to endocrinologist. When I saw him my BP was pretty high for me – similar to your readings. Interested in the bit about surgery bringing on POTS – I am sure that since having a spinal cord stimulator implanted (for chronic pain) my dysautonomia has become so much worse! And my EDS symptoms……such is life! C x

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      1. Been taking it since Feb – they doubled the dose, but it really didn’t make much difference. Was worried about water retention but not been too bad – I do wear compression tights or when too hot spanx
        and compression socks. Great look!! Been better since midodrine added, but still very giddy, some palpitations and fainting – just a bit less often. Let me know how you get on! xxx

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