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Anyone tried Octreotide for POTS

tiredowl

Senior Member
Messages
170
Location
Norway
One of my worst symptoms is the POTS, I don't even remember a day where my pulse was normal the entire day without going up to 120-30. l. I feel like my heart never rests.

I was looking through med journals and discovered that Octreotide has been useful for refractory POTS. Anyone know how to go about getting it prescribed? It seems to be used for acromegaly and gastroparesis mostly.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Is your fast heart rate related to orthostasis (standing)?

If it is hammering away at that rate regardless of position/exertion I would think another diagnosis would be more appropriate, perhaps Inappropriate Sinus Tachycardia or a cardiac issue.

Sorry if you have had a thorough work-up already and it is 'just POTS', but always good to check. Have you tried Ivabradine? That is good for IST and POTS.

Ryan
 

tiredowl

Senior Member
Messages
170
Location
Norway
Is your fast heart rate related to orthostasis (standing)?

If it is hammering away at that rate regardless of position/exertion I would think another diagnosis would be more appropriate, perhaps Inappropriate Sinus Tachycardia or a cardiac issue.

Sorry if you have had a thorough work-up already and it is 'just POTS', but always good to check. Have you tried Ivabradine? That is good for IST and POTS.

Ryan
Usually it is worse when standing up yes, but it's also terrible when I am just lying down or sleeping, so I will wake up with a racing heart rate. And also when walking.
I was diagnosed by a cardiologist, wouldn't they have picked up on Inappropiate Sinues Tachycardia? They only said my autonomic system wasn't functioning properly and I had mild leaky heart valve, but that it wasn't anything to worry about.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
My experience of 'overdoing it' with POTS is that I can get raised heart rate and sensations of anxiety when resting, waking surges being quite common too. However, if you're consistently having a racing heart whilst horizontal and well rested it doesn't really fit POTS well. An ambulatory heart rate recording (holter monitor) would be enough to raise suspicion of IST. Some Cardiologists see IST and POTS as on the same spectrum.

Ultimately these aren't very well understood/acknowledged conditions. You're best off seeing an electrophysiologist (heart rhythm specialist cardiologist). Either way if your doc didn't suggest any treatment options for what they did diagnose, you could definitely do better. Many suggest beta blockers but generally Ivabradine works better with less side effects.

Going back to the original question, I do know of Octreotide being used in POTS patients, usually for severe gastric dysmotility issues that can often occur, as you mention.