The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Phenylephrine For POTS symptoms

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Peyt, Jul 20, 2018.

  1. Peyt

    Peyt Senior Member

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    Hi,
    Has anyone tried using Phenylephrine for POTS symptoms particularly blood pooling to the legs or low blood pressure?
    From what I understand, Phenylephrine is a vasoconstrictor and can help increase blood pressure and
    can also help reduce sinus infections (which I suffer from)

    I am curious to see if anyone has tried it and what was their experience with it?
    The only reason I shy away from this is because I know I have low histamine to begin with (based on blood tests) so I wouldn't want to take a product that has anti-histamine in it. I wonder if there are any over the counter drugs with Phenylephrine that do not have anti-histamines?
    thanks so much,
     
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  2. AngelM

    AngelM Senior Member

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    I have not tried phenyephrine as it was not recommended at the time of my POTS diagnosis. My physician suggested compression stockings (the thought of which mortified me), but I tried them anyway, and almost immediately felt a difference in my fatigue level while standing or sitting. I am, however, interested to hear what others have to say about POTS medications.
     
  3. Ema

    Ema Senior Member

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    I tried it, but briefly. It didn't really have an effect one way or another for me, but it seems pretty cheap and easy to try. Anti-histamines don't decrease the amount of histamine made by your body, they just keep it from excessively attaching to receptors. If it's not there, there's nothing to block.
     
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  4. AngelM

    AngelM Senior Member

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    Thank you. I realize I have a lot to learn. I have a new understanding of how antihistamines work.
     
  5. Judee

    Judee Senior Member

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    You can buy Sudafed PE without added anti-histamine. I also have orthostatic intolerance but the support hose give me chest pains so I can't use them.

    I tried the children's version of this medication but the next day I felt more burned out, I think because it may act like a stimulant like the old Sudafed (though less so). It helped a little but I don't like feeling more tired the next day like that.

    o_O:confused:
    On a weird side note, Phenylephrine is also one of the active ingredients in hemorrhoid cream and lately I was thinking about getting some of that to try on my legs to see if that might help with the heaviness as well as the varicose veins. I tried to research the internet to see if anyone else uses it that way but didn't find anything.

    I'm very sensitive to medications (even through the skin) so would just try a tiny bit to start.

    Also my mom gets a lot of nasal congestion and that can lead to a sinus infection for her. For those you could try a steamer.

    We also have used a combination of zinc/b6 which we kind of stumbled on to for whenever her nose is congested. That combo usually starts to clear her nose in about 5-10 minutes. We found out later that they work by helping our bodies make Daosin enzyme which breaks down histamine in the gut.

    Infantis probiotic from Custom Probiotics is the latest thing we've found that also clears of her nose. This also suppresses histamine.

    The last thing we use is nettle/brigham tea. You can't buy brigham tea from supplement companies that much anymore but some sellers on ebay sell the tinctures or the "leaves." Brigham tea is has the same chemical as the original Sudafed in a natural form. We use this combo only rarely because it does seem to be more stimulating plus our bottle of the brigham is almost empty so we were rationing it.

    For all of these we just take tiny amounts with the exception of the Infantis. For that she uses the full adult scoop.

    Anyway, hope some of this helps.
     
    Last edited: Jul 21, 2018
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  6. Peyt

    Peyt Senior Member

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    This is a great idea. I might try it. Thanks so much.
     
  7. Moof

    Moof Senior Member

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    35 years ago, I had continuous chest and sinus infections for ages, and I was prescribed both ephedrine and phenylephrine (at different times) to treat them. They did also help with POTs, ephedrine especially, but as they're stimulants they made my ME worse after a while. Even with all the experience I've garnered since, I think I might still find it hard to know for sure when I was using 'borrowed' energy.

    Compression stockings, on the other hand, have helped just as much but with no side effects. The black ones look like normal stockings, and the below-knee ones like pop socks. Probably harder to want to wear them if you're a guy, though!
     
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  8. valentinelynx

    valentinelynx Senior Member

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    Things to know about oral phenylephrine:

    a. it is poorly absorbed orally–the published number I find is 38%. But that is not nothing; you just need to take enough. The study I looked at said:
    "Overall, the cardiovascular assessments showed no, or minimal, effects following single doses of phenylephrine HCl 10, 20, and 30 mg. A review of heart rate and blood pressure from a series of placebo-controlled, nasal decongestant studies showed statistically significant differences from baseline following doses of phenylephrine HCl 10 and 25 mg [22]. However, these changes were relatively small and inconsistent with regard to increases or decreases over the measurement interval, and did not account for diurnal variation with time-matched baselines. In a study on a pharmacokinetic drug interaction between phenylephrine and acetaminophen, researchers were unable to show any change in mean arterial blood pressure in the healthy volunteers for phenylephrine concentrations in the range expected for a 20 mg dose [7]. Finally, the cardiovascular assessments in this and other studies of therapeutic doses are in accordance with published reports that found higher single oral doses from 40 to 120 mg are necessary for consistent, clinically meaningful cardiovascular effects [3, 4]."

    In other words, to get a cardiovascular effect from Sudafed PE (10 mg phenylephrine per tab), you might need to take a 4-12 of them!
    b. It is very short acting. The study said the following,
    "Following single-dose oral administration, phenylephrine was rapidly absorbed from the 10, 20, and 30 mg doses, with Cmax occurring between 13 and 60 min. This was followed by a rapid decline in plasma concentrations due to phenylephrine’s short t½β, resulting in minimal concentrations beyond 4 h, when phenylephrine HCl would typically be re-dosed."
    In other words, after taking an oral dose, you would get a maximum blood level between 13 and 60 minutes, and by 4 hours, blood levels would be negligible.

    I remember when Sudafed PE came out. It was after pseudoephedrine was made hard to get (you have to ask for it from the pharmacist) because it was being used to manufacture methamphetamine. As I recall, most pharmacists thought it was a con, because phenylephrine is so poorly absorbed by the oral route. Here's a Washington Post article from 2015 about this: Why you should stop wasting your money on cold medicine
     
  9. Peyt

    Peyt Senior Member

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    Thanks for the post.
    As I was doing more research today I noticed Isometheptene which is something they put in migraine medication
    is also a vasoconstrictor... https://en.wikipedia.org/wiki/Isometheptene

    I am now starting to wonder if this is why sometimes in the past I would feel relief(from blood pooling in the legs) for a day or so when I took some of these over the counter meds and just didn't know it.
    Even plain old Tylonal would make me feel better (not immediately but the next day) .. The only reason I stayed away from it was the possible liver damage side effect and I already have a mild fatty liver so I would only take it once every couple of months.
     
    Last edited: Jul 21, 2018

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