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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has anyone with PH experienced dysautonomia. A dysfunction of the nerves that regulate nonvoluntary body functions, such as heart rate, bp.

A myPHteam Member asked a question 💭
Roswell, GA
September 17, 2024
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Answer Summary

Members shared their experiences with dysautonomia alongside pulmonary hypertension, with several describing symptoms like vasovagal syncope,... Read more

Members shared their experiences with dysautonomia alongside pulmonary hypertension, with several describing symptoms like vasovagal syncope, rapid heart rate, low blood pressure, and bowel incontinence that significantly impacted daily life. Many members found relief through medications like Metoprolol or Midodrine to manage heart rate and blood pressure, though balancing these with PAH medications often required careful monitoring and dose adjustments. A recurring theme was the connection between dysautonomia and Long COVID, with multiple members noting their symptoms either began or worsened after COVID infections, and the community offered support through shared resources and personal stories of navigating these overlapping conditions.

A myPHteam Member

No wonder you've developed PH!
Me too, on the upside Christine we're still here to complain about it😁
Sadly many aren't!

September 20, 2024
A myPHteam Member

https://www.nature.com/articles/s41582-023-00917-9
Hi Christine, another reference to long Covid induced dysautonomia.

September 18, 2024
A myPHteam Member

That is very concerning ChristineS. I take 50mg and have a 25mg back up. I have SVT pretty bad. Still daily occurrences even on meds. Covid messed me up. High BP (as high as 224/135? ) I take 10 mg of Anelodepien (shoot even spell check can’t get that right). lol. Hey Alex. Love you alway have great literature for us!!!

September 23, 2024
A myPHteam Member

@A myPHteam Member I was on metoprolol for years. I was put on it to help with migraines originally 100mg and then lowered to 50 mg. I developed PAH and my BP dropped, it went down to 68/36. They lowered my dose 25 mg, and I had to wear a cardiac event monitor. Still Bp was low, so they had to take me off the medicine completely (it's one of those meds you have to be weaned off) and I wore the monitor again for over a month. Now with the PAH meds I have to also take a medication called Midodrine that raises my bp. I take it three times a day, but at least the pressure now runs about 110/65. If I take my Bp before I take my morning meds it's in the high 80's low 90's. Be careful and watch your BP. I had to take my bp three times a day and now it's just once a day but still concerning.

September 20, 2024
A myPHteam Member

Kell83...... I've had Covid 3 times

September 20, 2024

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