Category Archives: Dysautonomia

Dysautonomia

My diagnosis of neurally mediated hypotension

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If you’ve been following me for a bit, you know my cardiologist referred me to a wonderful physician who specializes in dysautonomia. He ordered some tests and I just completed one- the tilt table test.

POTS suspicion

My doctors had originally diagnosed me with POTS. POTS is a relatively easy diagnosis to determine- your heart rate increases by 30 beats per minute/reaches 120bpm within 10 minutes of standing.

Three different doctors recorded my pulse increasing at this level in their offices. But the tilt table test showed that my pulse only increased by 20bpm within 10 minutes of standing.

According to my doctor, he suspects I still have POTS but I’m skeptical- I like concrete evidence (which with these disorders isn’t something I should expect to get- more to come in another post about what causes dysautonomia).

Tilt table test

After standing for 45 minutes and starting the second phase of testing, I vomited and passed out.

My blood pressure had dropped significantly throughout the standing portions of the test (more than a 25 point systolic decrease) which gave me the neurally mediated hypotension (NMH) diagnosis.

The NMH diagnosis makes sense

This diagnosis makes sense- I initially noticed my symptoms when I would stand for a long period of time, talking to a coworker for example, and would feel as if my blood sugar was plummeting (it wasn’t).

It wasn’t until I began having GI symptoms that I spoke with my PCP who started this process.

Next steps

In the past 24 hours I’ve learned a lot- one of the most important things is that I need to take this seriously.

Treatment involves increasing fluid and salt intake, moving slower and smarter, regular exercise with a dedicated extended recovery time. It involves compression wear. It also involves finding out what foods might be triggering my GI issues.

If I can’t get my symptoms under control with these measures, including a medication I’m already taking, I have to consider twice weekly fluid infusions.

I’m so used to heavy prescriptions (Rituxan) or new devices (insulin pump) that I honestly haven’t taken the recommendations my doctor originally gave me, months ago, seriously enough.

Now that I have a concrete diagnosis that makes sense, I feel ready to make significant changes.

Dysautonomia Rheumatoid Arthritis Type 1 Diabetes

Surviving a tilt table test with diabetes and rheumatoid arthritis

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Today I had the pleasure of experiencing a tilt table test. I did a lot of research beforehand on what the actual test entailed, asked others about their experience, etc. Going in, I felt pretty prepared but I walked away with some info to share:

Type 1 Diabetes

You have to fast beforehand which isn’t always the easiest thing to do with diabetes.

  • Make sure you check how early you have to fast- for me it was only 4hrs before the test which is a bit more manageable.
  • If you go low (like I did), apple juice should be your go to. It’s clear and does the trick quickly.
  • It should be ok to wear your pump/CGM. You may have to ask the nurse to check with the physician or someone else in charge as often their initial response is to have you remove it.
  • Be prepared for your blood sugar to respond to the stress this test will put on your body- the anticipation caused me to go low but the actual test made me go high.

Rheumatoid Arthritis

You will be standing in a locked position.

  • Be prepared for some pain during and after the test- the entire test can take 90mins and a lot of that time is standing with very little movement.
  • Bring pain meds to take as soon as you’re done as pain isn’t something they’re necessarily going to address in the cardiac recovery room. I didn’t have anything until I got home and at that point I was feeling awful.

Self care tips

  • Make sure your driver is present during the results portion of the test. It’s a lot of information to process after you’ve just passed out.
  • Wear comfortable shoes and pants as you’ll keep them on the entire time.
  • Take the remainder of the day off. As someone who was back at work right after surgery, you might not believe me, but you will feel horrible after this test. Use your afternoon to give your body the hydration and rest it needs after such a stressful event.
Dysautonomia

What to expect from your first dysautonomia evaluation

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A few months ago, I booked an appointment with a physician who works in the dysautonomia center at Johns Hopkins. My cardiologist had given me the diagnosis of POTS but wanted me to see an expert. I tried googling what to expect and couldn’t really find much so I’ll share my experience here!

History

He wanted to know everything going back to when I was 9 years old and diagnosed with type 1 diabetes. He asked about my dad’s neuropathy, my eye exams, everything he could think of regarding diabetes- not just my A1c (which seems to be all other doctors focus on).

He asked for details around my RA- leading up to diagnosis, how each biologic treated me. I could tell he was concerned about me being on Rituxan. He admitted that my rheumatologist knew much more then him in regards to treating my disease, but he thought Rituxan wasn’t the safest long term medication to be on and he’s right, it’s not, but I’ll save those worries for another day.

Fatigue

This was a big part of our conversation and possibly the most difficult part. If you have extreme fatigue, like me, you’re often spending your time “pushing through”. I drink a ton of caffeine, sleep whenever I can. My doctor wanted me to rate, using a battery scale, how my fatigue had changed over the years. I recalled falling asleep getting my haircut when I was diagnosed with RA and shared that my kids even plan their activities around when they know I’ll need to nap or be in bed.

Current Symptoms

This was a simple discussion- why? Because he had read my notes and actually spoken with my referring physician. What I liked the most was that he had me rank the top 5 issues (he referred to them as barriers) I was having in order of how much they are disrupting my life. I tend to gloss things over with a good old “I’m fine” but he wouldn’t allow it.

Physical Exam

The usual- heart rate, breathing, “follow my finger with your eyes”. He then assessed my reflexes- knees, feet, elbows, hands, chin, and forehead and asked “have you always had hyperactive reflexes?”. I told him I startle easy but it seemed like a silly thing to notice.

I warned him about my crappy knee- he asked if I had trouble moving it and I told him my knee would make some nasty sounds but could even hyperextend so I was fine with movement. Another look and a question- “have you always been hyper-mobile?”. He then had me bend my thumb back to touch my inner arm (I thought every one could do that?!).

Education

My doctor did a great job of explaining POTS- exactly what it is, how many people have it, how much is still unknown. He also explained why he didn’t think I have diabetic neuropathy but that he is concerned that Rituxan may be damaging my nerves itself or by causing an autoimmune response.

Next Steps

A few more tests– importantly an EMG followed by a skin biopsy. Also a tilt table test– my doctors had initially tried not to have me go through this testing because my vomiting was so violent but it is important for insurance and getting authorization for additional testing and treatment.

I am to drink a minimum of a gallon of water a day (can use Powerade Zero towards the total but caffeine doesn’t count). I smartly told him I already drink almost 100oz a day and then my math caught up with me. It’s more than that…

Two pickles a day! He said forget the thermotabs- pickles are inexpensive (in comparison) and a good lifelong treatment. #PickleLife

IV Fluids– He would really like me to start twice weekly IV fluids. In theory, this is great- I know after my bag of fluids with Rituxan, my dizziness and heart rate issues are nonexistent for a day or two. The problem is figuring out how I can possibly get infusions twice a week while I work full time and care for my family (and myself).

The Plan

I’ll get my tests scheduled, buy more pickles, log my water, and keep taking my meds. Once my results come back, my doctor will do a few things- order more tests if needed (but he said he’d rather not) and speak with my rheumatologist in regards to treatment options.

He’s concerned that my high level of fatigue is more POTS related than RA. He may be right as no biologic has ever lowered my level of fatigue. I’d hate to think that I’ve been unnecessarily pumping harsh drugs into my body when I could have maybe had them less frequently or at a lower dose.

He made sure to stress that POTS is a real syndrome. He said people struggle to get a doctor to take them seriously and often end up seeing “professionals” who aren’t doctors and don’t actually help patients in the long run.

If you’ve seen a dysautonomia specialist, was your experience similar to mine? Anything I missed?