PANS + Lyme: Recovery and 8 Years of Misdiagnoses

My body is cooking up trouble with POTS and PANS

My body is cooking up trouble with POTS and PANS

“You’re going to hate me when I tell you this,” my cardiologist said this week.

I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…

“Your heart is fine—in fact, we haven’t seen one this perfect in years.”

Relief washed over me for a moment—until I remembered how my pulse had shot up when I stood for a test a few minutes earlier. The look on my doctor’s face told me I wasn’t imagining my symptoms.  What I’d feared most was true:

“You have… Dysautonomia.”

Dysautonomia is a fancy word for when a person’s autonomic nervous system (ANS) malfunctions. It can be caused by infection, autoimmune disease, or environmental triggers. The kind I have is called POTS (Postural Orthostatic Tachycardia Syndrome).

My doctor explained that whatever illness I had in April triggered a malfunction in the part of my ANS that regulates blood pressure and heart rate. So now, whenever I stand up, my heart starts beating very fast because not enough blood is returning to it; blood pools in my legs instead, so I get lightheaded and dizzy. Not surprisingly, this leaves me exhausted all the time.

“You can recover from this,” he explained. “But it’s going to take a lot of courage and time—possibly two or three years.”

I left the appointment that day with my head spinning—not from a lack of blood flow, but from the realization that my world had, once again, been turned upside down. For weeks, I’d hoped to find a simple cause to my fatigue with a simple fix. Instead, I got yet another diagnosis that doctors are only beginning to understand—another condition like PANS that could take a long time to defeat.

Although there are medications such as beta-blockers that can help POTS, for now, my treatment plan is to take in more salt (about 5000 mg of sodium each day), drink more water (2-3 liters), and slowly ease my way back into exercise. I also need to be sure I sleep enough and eat well (easier said than done while fighting an eating disorder).

To be honest, I’m still a bit in shock over this latest diagnosis and what it means for the months to follow. But at the same time, I’m really not surprised that my body once again had a strange reaction to a virus—albeit in a new way.

Frankly, I see POTS and PANS as related, because my POTS came on at the same time that my PANS symptoms started getting bad again. Indeed, my PANS doctor told me many of her patients have both POTS and PANS—a true recipe for misery and disaster.

Because of this, I wanted to make you all aware of POTS.  Symptoms include:

  • Rapid heart rate when standing or sitting up
  • Dizziness (especially when standing)
  • Lightheadedness
  • Fainting or almost fainting
  • Fatigue
  • Shortness of breath
  • Chest pain
  • Feeling heaviness in your legs
  • Headaches

For most people, proper treatment can lead to significant improvement, so it’s important to get a diagnosis. You can read more about POTS and other kinds of dysautonomia here: http://www.dysautonomiainternational.org/page.php?ID=30

I’m still trying to process what happened this week, but I refuse to accept POTS as a permanent part of my life. However, the cardiologist told me if I don’t fight POTS now, it will get worse, so I’m going to keep pushing forward one day at a time—I’m determined to find a recipe to overcome both POTS and PANS.

Comments on: "POTS & PANS: A Recipe for Disaster?" (11)

  1. […] other words, my misery is proof that I need to keep going.  And last summer, Lyme disease attacked my heart and nervous system, and there are still spirochetes in my brain—who knows what they could do to me over […]

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  2. […] Mentally and physically, I never fully recovered. Then, I had heart and nervous system issues (including POTS) that I’d never had before, followed by a descent into a horrific flare of PANS symptoms. It […]

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  3. […] job, and socializing more than ever. Oh, and I just ran eight miles this weekend, while in July, my POTS basically made me pass out from just standing up. Even if it seems like it’s impossible to win […]

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  4. […] without omitting or reversing letters—and then I don’t know how to fix the spelling. As for my POTS, I continue to drink four liters of water every day and take in at least 5000 mg of sodium, so for […]

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  5. […] crippling depression, incapacitating executive function and concentration issues, and my physical weakness from POTS, living independently in less than two months while taking senior-level classes seemed like an […]

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  6. Your time to diagnosis is impressive! Now you can get on with Getting Better, and I know you will. Your writing is great and we’ve learned so much from you. This time it may (re: POTS) apply to me. God bless your recovery.

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    • Yes, I’m very fortunate to have gotten a POTS diagnosis as quickly as I did. It seems to take years for a lot of people. Hopefully you’re right about getting on to getting better! I’m glad you’re learning some useful things from me. 🙂

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  7. Dang! Hang it there….

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  8. Very common in Pandas. My 10 yr old was diagnosed last year- it came on suddenly. She does great with salty snacks, hydration and exercise. Good luck!

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    • Thank you! Glad to hear your daughter does well with salt, hydration, and exercise. Mine also came on suddenly. I hope someday soon they’ll figure all of these things out better.

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