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List of conventional and potential treatments for POTS/OI

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by ramakentesh, Feb 8, 2012.

  1. ramakentesh

    ramakentesh Senior Member

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    Here is a list of potential and even conjectural therapies for POTS/OI.

    Pharms
    Florinef - promotes sodium retention, increases blood volume
    Midodrine - alpha 1 agonist (short lived)
    Dihydroergotamine - alpha 1 agonist
    Inderal - beta 1/2 receptor blocker
    Mestonin - peripheral acetylcholinesterase inhibitor
    Octreotide - stomach vasoconstrictor
    Epogen - Procrit - increases red blood cell generation and vasoconstriction
    SSRI (various) - increases serotonin, downregulate serotonin receptors, decrease sympathetic outflow, increase vasoconstriction
    SNRI - decrease sympathetic outflow
    Clonidine - alpha 2 agonist, antihypertensive
    Methyldopa - antihypertensive, reduces sympathetic outflow
    Labatalol - Combined alpha/beta blocker
    Xanax - gaba
    Klonopin - long acting gaba
    Losaratan - Angiotensin II receptor inhibitor (ARB)
    Benicar - Angiotensin II receptor inhibitor (ARB)
    Ivabradine - sinus node modulator, decreases tachycardia, no effect on BP
    Methylphenidate - stimulant, dopamine agonist?
    Modaphilin - central stimulant, unknown action

    Herbal
    Licorice root - blood volume increaser, hypertensive, reduces eNOS expression, ANG ii receptor agonist
    Butcher broom - vasoconstrictor (alpha 1 and alpha 2 and stimulates NE release) WARNING diuretic
    Valarian - Gaba and inverse adenosine antagonist
    Motherwort - cardiac tonic, reduces sympathetic outflow?

    Supplements
    Acetyl - L - cartinine - improves neuropathy, brain fog?
    Alpha Lipoic acid - improves neuropathy, brain fog?
    Vitamin B12 - energy, mitochondrial function, methylation cycle, antioxidant, nitric oxide scavenger
    Co Enzyme Q10 - energy, mitochondrial function.

    Other
    IV saline - 1 to 3 litres
    Exercise (graded)

    Experimental - Conjectural
    Low dose naltrexone - immuno modulator
    Huperzine A - acetylcholinesterase inhibitor
    Rehmannia glutinosa - acetylcholinesterase inhibitor, vasoconstrictor, NO
    Salvia elegens - Ace inhibitor and ANG II receptor antagonist
    Salvia miltiorrhiza - ANG II receptor antagonist
    Eucommia bark - beta blocker, vasodilator
    Scotch Broom - hypertensive, stimulates muscaranic acetylcholine receptors
    Lactuca virosa - acetylcholinesterase inhibitor
    Caulis sinomenii - Norepinephrine transporter activator, SSRI
    Tumeric - anti inflammatory, TNF alpha inhibitor, potential NO scavenger (iNOS)?
    Sceletium - SSRI
    Rhodiloa rosea - adaptogen, MAO inhibitor, acetylcholinesterase inhibitor
    Shizandra chinensis - adaptogen, acetylcholinesterase inhibitor
    Sallflower - Norepinephrine transporter activator
    Cat's Claw - adaptogen, immuno-modulator
    Cynomopium songaricum - potent Norepinephrine transporter activator
    Beetroot - potent source of NO
    hawthorn berry - increased NO-meditaed vasodilation, natural beta blocker
    Magnesium - among others, increases NO release
    Pilocarpus jaboradi - muscarnic acetylcholineste receptor agonist
    Puerararia lobata - increases blood flow to brain, NO mediated
    Horse Chestnut - venotonic, vasoconstrictor (aescin).
    Alchemilla vulgaris - venotinic
    Angelica siness - blood volume 'builder' - increases EPO production
    Galanthus nivalis - potent acetylcholinesterase inhbiitor
    California poppy - GABA binding agonist
    Astragalus - immuno modulator, blood volume 'builder'- increases EPO production.
    Gotu Kola - venotonic
    Camphor tree - 'circulatory stimulant'
    Kudzu vine - increases blood flow to brain, increased NO mediated vasodilation
    Calaba bean - potent acetylcholinesterase inhibitor
    Melilotus deuciemalis - decreased capillory permability, venotonic, vasoconstrictor
    Stinging nettle - increased NO-mediated dilation and flow.
    Kava kava - gaba agonist and SNRI activity
    maritime pine bark - NO precursor, antioxidant
    Choline - precursor of choline
  2. Emootje

    Emootje Senior Member

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    Impressive list Ramakentesh
  3. ramakentesh

    ramakentesh Senior Member

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    thanks - glad someone appreciated it. :D
  4. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Good list. A couple of things you could add to that list under "Other" are:

    -pressure suit
    -support/pressure stockings (they need to be at a certain pressure, I've forgotten what).
    -tilting the head of the bed (put bricks under those bed legs) can help some forms of POTS
    - sports drinks
    - staying well hydrated
    ahimsa likes this.
  5. mellster

    mellster Marco

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    ahimsa likes this.
  6. Sing

    Sing Senior Member

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    Yaay! Thank you, mellster, for the tip off. THIS is what I am waiting for, hoping it will improve the quality of my life with OI. I don't know if this will make a fortune for this company
    but it may make a great difference in the lives of many who are struggling every day to stand and walk. (But I hope you make some money on it.)
  7. sensing progress

    sensing progress Senior Member

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  8. ramakentesh

    ramakentesh Senior Member

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    Oops I missed that - yes L-dops/Droxidopa has been approved. Im not sure its going to be used in POTS, more so in NMH and NCS??
  9. Sing

    Sing Senior Member

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    I remember that it made me feel too sick to go on with. My memory isn't good but the symptom was nausea, I think.
  10. ramakentesh

    ramakentesh Senior Member

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    does work well for some folks though. I always wake up SOOOOOOOO thirsty.
  11. sensing progress

    sensing progress Senior Member

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    what does?
  12. ramakentesh

    ramakentesh Senior Member

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    vasopression.
  13. sensing progress

    sensing progress Senior Member

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    so you have taken it yourself? did it help?
  14. ramakentesh

    ramakentesh Senior Member

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    no i forgot to mention it. Currently on licorice root and mestonin with some benefit.
  15. mellster

    mellster Marco

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    Update: FDA sent a CRL to Chelsea, blocking approval for Northera for now and going against the panels recommendation to approve it right away - you are likely looking at a 4-6 months delay for a best case scenario.

  16. mellster

    mellster Marco

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    Here's what the goofballs at the FDA did today - nicely summarized by someone on the message boards (droxidopa = Northera in Japan):

    "
    FDA reform needed 28-Mar-12 11:46 pm
    Here is what the FDA did today.

    1. They ignored the Whitehouse directive to accelerate the approval of drugs addressing unmet needs.
    2. Ignored the bipartisan legislation emerging in Congress requesting the FDA to accelerate approval of such drugs.
    3. Ignored that droxidopa met the conditions of the SPA in pivotal trial 301.
    4. Ignored the Adcom recommendation.
    5. Ignored the fact that midodrine is on the market with FDA approval despite never having demonstrated clinical efficacy.
    6. Ignored that droxidopa has 20 years of use in Japan, including sizeable post-marketing study.
    7. Ignored that droxidopa is a prodrug of norepinephrine that has been extensively studied, occurs naturally in the body and has well a well defined mechanism for its effect on blood pressure and is deficient in Parkinson's patients.
    8. Threw common sense out the window and the patients under the bus.
    9. Failed to do the right thing, which would have been approval with post-marketing studies.
    "
    taniaaust1 likes this.
  17. Valentijn

    Valentijn Activity Level: 3

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    I'm sorry to hear it. This is the drug that seems most likely to help with my OI, since I have high dopamine but low epinephrine and norepinephrine. It also looks like the side effects are quite mild.
  18. richvank

    richvank Senior Member

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    Hi, all.

    For what it's worth, I believe that permanent correction of OI in ME/CFS will require lifting the partial block of methionine synthase, so that glutathione can recover, using a methylation protocol.

    The reason I say this is that I believe that there are three causes of OI in ME/CFS, and that all three stem from the vicious circle that includes the methylation cycle block and low glutathione.

    I believe that these three causes are low total blood volume caused by diabetes insipidus (not to be confused with diabetes mellitus), diastolic dysfunction of the heart, and dysfunction of the HPA axis. The first and third result from glutathione depletion in the hypothalamus and pituitary, in my hypothesis. The second results from glutathione depletion and the methylation deficit in the heart muscle cell mitochondria.

    The various other treatments that are used to treat OI deal downstream in the pathophysiology with one or another of these three aspects, but they do not get to the root of the problem.

    I hope this is helpful.

    Best regards,

    Rich
  19. Sing

    Sing Senior Member

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    I was really looking forward to this drug, the chance to try it. NMHypotension is one of the most disabling symptoms I have. What is a CRL? Does this mean the FDA wants more review?

    This bugs me for the afore-cited reasons. Also the additional facts about how the drugs already on the market are made all over the place and sometimes sub-par. The FDA isn't able to regulate most of what the pharmacies get as is. Also the generics especially can be poor quality. A doctor told me that generics are only held to a standard of 70 or 80% efficacy--not that they are actually tested. There was just a legal case in the news where it was ruled that an injured patient couldn't sue because he had had a generic drug and therefore no company could be held responsible. So there is plenty of irresponsibility going around. To counter balance this, I guess the FDA is super-controlling about these suspicious European or Japanese drugs. What do THOSE people know? Gripe, gripe...
  20. xrayspex

    xrayspex Senior Member

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    mellster what do you think fda motivation to delay it is? must be $$ somewhere in the story

    and sing I heard on news last year that its a new thing not being able to sue generic drugs...they force everyone to take them but then arent going to hold them accountable....its very probusiness in negative way and anti-consumer safety grrrr

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