Autonomic Nervous System Dysfunction / POTS-like Symptoms
Users on Reddit report varied experiences regarding Autonomic Nervous System Dysfunction (ANSD) or POTS-like symptoms while on GLP-1 medications. For some, these medications exacerbated pre-existing conditions or unmasked latent ones, leading to significant discomfort and, in some cases, discontinuation. Others found ways to manage these symptoms or experienced no adverse autonomic effects.
Experiences with Autonomic Nervous System Dysfunction / POTS-like Symptoms:
One user with fibromyalgia stated, "The heart issues legit #1 issue that’s gunna make me quit. Just crazy PVCs that I can’t even function. "[1] They also mentioned, "Heart palpitations are insane... Sweats. Brain fog. "[1]
Another user reported, "Definitely made my pots/dysautonomia symptoms worse. I've tried wegovy, zepbound, and 'microdosing' compounded semaglutide. All resulted in worsening pots symptoms and fatigue... As soon as I was off the meds, symptoms were much easier to manage so I do feel like there was a direct correlation for me. "[4]
A user with general dysautonomia and suspected IST said, "when I started it and lost 10lbs I had the worst tachycardia attack I’ve ever had so idk. "[20]
Some experienced new onset of symptoms: "I didn't realize I had POTS until I was on one. I'd say it's actually led to me being diagnosed. "[5]
Temperature dysregulation was also noted: "The chills… Mixed with fibro temp intolerance, is just insane. Feels like I’m getting dunked in an ice bath while flickered by a flame torch. "[1] Another user experienced "even worse temperature dysregulation" initially. [12]
One user mentioned, "My energy plummeted and I felt like I was going to pass out almost every time I stood up. "[10]
"Keep in mind that these meds can dehydrate you easily, so POTS will likely be worse than usual on it. "[5]
A user with POTS stated, "being dehydrated is like a death sentence. "[6]
Users reported decreased thirst cues: "I have found I have less thirst on these medications so I need to be intentional about drinking water to avoid dehydration. "[23] Another said, "Have to make myself take water/ fluid, ... forget to drink! "[22]
One user with POTS and reactive hypoglycemia found that "Ozempic/wegovy at the lowest dose of 0. 25 cured it. "[8]
A user with hEDS and dysautonomia on compounded semaglutide reported it "has truly helped with so much including and especially inflammation. "[17]
Tirzepatide (Mounjaro/Zepbound) was suggested by some to be better tolerated than semaglutide (Wegovy/Ozempic) for POTS. One user described Wegovy as "BRUTAL" for their dysautonomia, but found the switch to Zepbound/Mounjaro "amazing," noting, "My HR is finally starting to not freak out as much anymore as it did on Wegovy... No longer spiking to 150 when standing up etc. " They attributed this to the GIP component in tirzepatide. [19]
One user reported an unusual increase: "I usually have very low BP, but while on the med it was almost always in Stage 2 Hypertension. "[13]
Remedies and Preventions Recommended:
"My doctor is wanting to try a low dose with me. She said 'microdosing'. "[3]
"I started by VERY small doses so I could monitor for side effects and using that method I have had ZERO issues. "[18]
"I started at half the lowest dose and very very slowly increased it. By doing it that way I never had symptoms. "[19]
A user advised taking "less than prescribed" if full doses are intolerable. [12]
"You do have to be very intentional about eating and drinking enough to combat the orthostatic hypotension. "[10]
"Keep up on electrolytes. "[2]
One user with POTS mentioned needing to "choose water/electrolytes over a snack if my tummy is just saying no. Or have an electrolyte icy pole to give that food feeling. "[9]
"GLP-1s decrease both hunger and thirst cues, so you need to make sure you are keeping hydrated by tracking your water intake. "[24]
For fatigue (often comorbid with dysautonomia), magnesium malate and CoQ10 were suggested. [2]
For palpitations: A user mentioned taking a beta-blocker (prescribed by a doctor). [2]
Experiences with Autonomic Nervous System Dysfunction / POTS-like Symptoms:
- Worsening of Pre-existing or Development of New Symptoms: Many users with diagnosed dysautonomia (like POTS or Inappropriate Sinus Tachycardia) or conditions with autonomic involvement like fibromyalgia reported a worsening of their symptoms.
- Impact of Dehydration: Dehydration, a common issue with GLP-1s due to reduced thirst or GI side effects, was frequently cited as a factor that worsens POTS and dysautonomia symptoms.
- Variable Responses and Medication Specificity: Not all experiences were negative.
One user reported an unusual increase: "I usually have very low BP, but while on the med it was almost always in Stage 2 Hypertension. "[13]
Remedies and Preventions Recommended:
- Slow Titration and Low Doses ("Microdosing"): This was a common recommendation to mitigate side effects, especially for those with autonomic sensitivities.
- Hydration and Electrolytes: Emphasized as critical for managing POTS-like symptoms.
- Adequate Protein Intake: Often mentioned in conjunction with hydration.
- Medication Choice: For individuals with POTS, considering tirzepatide (Mounjaro/Zepbound) over semaglutide (Ozempic/Wegovy) was suggested due to the potential benefits of the GIP component.
- Supplements:
- A user with POTS and fibromyalgia found their "palpitations finally (!!!!
- Managing Specific Symptoms:
- For chills: Using a heated blanket and Tylenol.
- Discontinuation: If symptoms are severe and unmanageable, stopping the medication led to improvement for some users.
- Consulting Specialists: Seeking advice from neurologists or gastroenterologists was mentioned as a course of action.