Low dose Naltrexone for POTS helping alot

Posted by eyja @eyja, Apr 2, 2023

Hello all. Hope lots of you are getting better.
My son has/had POTS. I put him on LDN and he is so much better. So wonderful to see - finally! And there are no side effects.
I think it´s also worth trying although the symtoms are other than POTS.
LDN is not evidence based yet, as is the case with any other medication. But the way I see it is: What ever works.
B.w. and take care.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

joeyt | @joeyt | Apr 3, 2023

How do you get a Doctor to prescribe this drug? Will insurance cover it?

eyja | @eyja | Apr 3, 2023

Sorry, but I´m in Iceland. Also, I´m so lucky to be a doctor myself.
Hope you find a way!

daviddennis123 | @daviddennis123 | Apr 3, 2023

What is POTS and LDN?
Help the uninformed by using complete words.
Thanks.

margaretamada | @margaretamada | Apr 3, 2023

POTS is Postural Orthostatic Tachycardia Syndrome, a condition in which your heart starts beating rapidly when you go from lying to standing position. LDN is Low Dose Naltrexone. Naltrexone is generally used in higher doses in the treatment of drug and alcohol addiction. I noticed on the internet that you can order LDN from companies who I assume have a prescriber on board; it’s a very safe medication.

jforth | @jforth | Apr 3, 2023

In reply to @daviddennis123 "What is POTS and LDN? Help the uninformed by using complete words. Thanks." + (show)

Postural orthostatic tachycardia syndrome (POTS): symptoms include lightheadedness, difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor…especially upon standing after lying down. A lot of long COVID sufferers have developed POTS or something similar to it.
The functional medicine guy at my naturopathic clinic prescribed me LDN (Low Dose Naltrexone) for my long COVID symptoms (which are for me widespread pain, heart palpitations, chest jolts at night, constipation, and tingling sensations throughout body), but I haven’t taken it yet, as I’m trying a low histamine/anti-inflammatory diet first.

christine8 | @christine8 | Apr 4, 2023

I also developed POTS with Long Covid. My doctor prescribed Low Dose Naltrexone to combat inflammation. It is very helpful in reducing my stronger symptoms like syncope, pre syncope, palpitations, general pain, headaches. Naltrexone has reduced these symptoms, it has not completely eliminated them. But, I greatly appreciate a reduction in these strong symptoms.
I still experience exercise intolerance, vertigo, and fatigue. Since the naltrexone prescription for long Covid is off label it is not covered by insurance. But, it is not terribly expensive. A one month supply has been about $25.

x999x | @x999x | Apr 4, 2023

In reply to @joeyt "How do you get a Doctor to prescribe this drug? Will insurance cover it?" + (show)

Not in Massachusetts,USA.
I e had to pay out of pocket, compounding pharmacy. At least my Doc, agreed Prescribe it for me.

prn2016 | @prn2016 | Apr 9, 2023

I was able to get my doc to order it and I also had to pay out of pocket at the compounding pharmacy.

mkmann | @mkmann | Apr 15, 2023

The Naltrexone dose used for opioid addiction is 50mg. I started a low dose (2mg) two months ago, and it helped immensely with pain, starting the next day. I may try to increase it to see if helps with my Orthostatic Intolerance, a condition similar to POTS, which got worse post-Covid. I pay out-of-pocket $40/month in PA.

prn2016 | @prn2016 | Apr 15, 2023

In reply to @mkmann "The Naltrexone dose used for opioid addiction is 50mg. I started a low dose (2mg) two..." + (show)

In my reading up on LDN I found that it has been used for years for Fibromyalgia. I was diagnosed with FMS in 1998 by a rheumatologist. I told my doctor that even if it isn't effective for Long Covid, it may well help with my FMS. He was persuaded to prescribe LDN 1 mg x one month, 2 mg for the next month and he plans to increase it monthly up to 5 mg/month.