Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Looking for POTS meds without POTS diagnosis

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Tom_Nightingale, Sep 16, 2016.

  1. Tom_Nightingale

    Tom_Nightingale

    Messages:
    34
    Likes:
    31
    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.
     
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    @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.
     
    J.G, Mel9 and ahmo like this.
  3. CJB

    CJB Senior Member

    Messages:
    833
    Likes:
    473
    Dr. Bateman is now using a test developed by NASA that does not require a tilt table, just a blood pressure cuff and heart rate monitor. It can be done in your doctor's office.

    Here's a link to the video explaining it.

    The information specific to POTS starts @ about 35:00
     
    Lindberg and ahmo like this.
  4. Tom_Nightingale

    Tom_Nightingale

    Messages:
    34
    Likes:
    31
    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?
     
  5. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    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.
     
    Mel9 likes this.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    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.
     
  7. ahmo

    ahmo Senior Member

    Messages:
    4,340
    Likes:
    6,527
    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.:)
     
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    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.
     
  9. Mel9

    Mel9 Senior Member

    Messages:
    415
    Likes:
    982
    NSW Australia
    It seems to be banned in Australia
     
  10. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    Yeah, it can't be sold here in the Netherlands either. But I can bring in my private stash :D
     
    Mel9 likes this.
  11. Hip

    Hip Senior Member

    Messages:
    9,349
    Likes:
    14,634
    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.
     
    Last edited: Sep 18, 2016
    Hanna and Mel9 like this.
  12. Tom_Nightingale

    Tom_Nightingale

    Messages:
    34
    Likes:
    31
    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
     
  13. Hip

    Hip Senior Member

    Messages:
    9,349
    Likes:
    14,634
  14. Tom_Nightingale

    Tom_Nightingale

    Messages:
    34
    Likes:
    31
    Yes, I've actually done it before. I get hypotensive and tachycardic. The actual tilt table is interesting to me because of the chance I could get a drug like midodrine prescribed. I've heard it has some significant drawbacks though
     
  15. Hip

    Hip Senior Member

    Messages:
    9,349
    Likes:
    14,634
    So you may have both NMH and POTS.
     
  16. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    @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.
     

See more popular forum discussions.

Share This Page