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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Looking for POTS meds without POTS diagnosis

Messages
34
I've been trying to get a tilt table test to establish a POTS diagnosis but it's taking a long time. I've got preexisting mental health issues, and I've had some success with antidepressants notably nortriptyline (Pamelor) and to a lesser extent other NET inhibitors (Straterra, Cymbalta). They all have side effects that are too much, I can't think with the anticholinergic effects of nortriptyline and I get too nervous and sleepless on Straterra and Cymbalta. I'm beginning to think that the alpha adrenergic agonizing effects of these meds is why I've done well on them, and that's what I understand can help with POTS.

Without actually having a POTS diagnosis, what's med or two that I can try for help? What has helped you guys now or in the past? I've tried beta blockers, I almost passed out with just having them in my mouth. Cipro really threw me for a loop when I took it last year, still dealing with fatigue/ mitochondrial dysfunction? since then, so beta blockers are risky.
 
Messages
15,786
@Tom_Nightingale - Yohimbe is a supplement containing the active ingredient yohimbine. It's a very strong and specific Adrenergic Alpha 2 antagonist. It works great for me with no side effects, and is very cheap and available without a prescription in most countries.

It might be over-stimulating if taken too late in the day. I take my first dose when I get up in the morning, and my 2nd dose around 1:30pm, so it's worn off by 9-10pm. But if I'm having persistent tachycardia when trying to sleep at night (heart rate over 90 laying down), it helps with that as well, and actually makes it easier to fall asleep.
 
Messages
34
Wow, that really cool! What else might I want to know in terms of size effects or interactions? Anything in particular my doctor/psychiatrist might want to know about me taking yohime?
 

PennyIA

Senior Member
Messages
728
Location
Iowa
The treatment I've gotten around to (no diagnosis yet, never tested for it, just dx'ed with low-blood pressure) is tied to raising up my electrolytes which are low (go figure, I've only struggled with chronic diarrhea for years - was able to stay hydrated, but my electrolytes dropped too low).

I've thought about doing the poor man's tilt table test, but honestly? I am pretty sure I've got it based off of my understanding of the symptoms. It's better than it used to be, but then again, I think I'm in remission now. POTS comes back if I get PEM or if I start regressing.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
a big part of POTS treatment doesnt just involve meds but also things like drinking 3L water per day, having enough salt (between 4 to 7 gram), wearing compression stockings.

It can be a good idea to do a poor mans POTS test to have a better idea if you have POTS and you can do this while waiting for the other. (Ive actually read that this can be more accurate then tilt table test as with tilt table test apparently some POTS cases are currently being missed).

I dont know if some of your mental health issues involve anxiety but be aware the POTS can cause anxiety at times so treating POTS can help some.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I've gotten some benefit from adding mast cell stabilizers royal jelly and mangosteen. I don't have a diagnosis, but symptoms of POTS-lite. This paper refers to possibilities of mast cell and autoimmune contributions to POTS.

@Valentijn I'm putting yohimbe on my next buying list. thx.:)
 
Messages
15,786
Wow, that really cool! What else might I want to know in terms of size effects or interactions? Anything in particular my doctor/psychiatrist might want to know about me taking yohime?
Basically whatever's in the studies and the side of the bottle. I don't have any side-effects, probably because it has so little effect on other receptors.

The normal dose is too high for me. I split it into 4 doses and take two per day about 100mg yohimbe per dose, or an estimated 2mg yohimbine). When I started with a normal dose, it gave me a headache. I have low pulse pressure and fairly normal diastolic and systolic values. Yohimbe might be a bad idea for people with higher blood pressure.

It's commonly marked as a "male" supplement, but hasn't been proven to have any effect in that area, so probably wouldn't cause related side-effects. But it's usually in the penis section of health/supplement stores. Some of those will have extra ingredients which aren't what we're looking for, so it's important to read the label.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
@Tom_Nightingale - Yohimbe is a supplement containing the active ingredient yohimbine. It's a very strong and specific Adrenergic Alpha 2 antagonist. It works great for me with no side effects, and is very cheap and available without a prescription in most countries.

It might be over-stimulating if taken too late in the day. I take my first dose when I get up in the morning, and my 2nd dose around 1:30pm, so it's worn off by 9-10pm. But if I'm having persistent tachycardia when trying to sleep at night (heart rate over 90 laying down), it helps with that as well, and actually makes it easier to fall asleep.

It seems to be banned in Australia
 

Hip

Senior Member
Messages
17,824
I've been trying to get a tilt table test to establish a POTS diagnosis but it's taking a long time.

It's very easy to diagnose POTS yourself at home, using what some call the "poor man's tilt table test". Details on how to do it here (see the POTS section).

Basically, lie horizontally and relaxed on a sofa or bed for 10 minutes, then measure your heart rate. Then stand up, wait two minutes standing still, and measure you heart rate again. Then measure your heart rate a few more times over the next 8 minutes will still standing. From these measurements, take your maximum heart rate while standing, and if this is 27 points or more higher than your lying down heart rate, then you have POTS.


A comprehensive list of POTS medications and supplements is given here.
 
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Messages
34
Yeah, it can't be sold here in the Netherlands either. But I can bring in my private stash :D
I'm having some anxiety about taking yohimbine. I'd be grateful to hear about your experience beginning supplementation with it, and if you had a "learning curve" in figuring it your dose or managing initial side effects. I take Straterra and I'm guessing the blood pressure and anxiety side effects will synergistic with yohimbine? That's my concern, I've had some increases blood pressure with Straterra. Thing is I do NOT tolerate normal doses of SSRI, SNRI or NSRI like Straterra, but I seem to do best with the drugs that have lower affinity for serotonin. So I'm eager to try something to just hit the adrenergic receptors like yohimbine.

My thought is I would want to taper off of Straterra before trying yohimbine to be safe. But any others who have been able to tolerate Straterra and yohimbe? I've decided to go with yohimbine over yohimbe after reading up about pros and cons, and that the recommendation is 0.2 mg/kg. I weigh about 84kg right now, but would still start with just half of a 2.5mg capsule
 
Messages
15,786
@Tom_Nightingale - What's your dose of Strattera? I never tolerated (or needed) more that 10mg three times per day.

Normal doses of Yohimbe are also too much for me. I tried that for my first dose, and got a headache. About 100mg of yohimbe (standardized to 2mg of yohimbine) is my dose now, twice per day. So I split the GNC 450 or 451 capsules into 4 capsules each.

I don't normally take it with Strattera, since they both impact on norepinephrine. I have taken both together when having very bad hypotension to the point that my oxygen saturation was too low even when laying down. I also didn't need to taper at any point.