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ramakentesh

The Complete Guide To Pots Therapies

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

This list is in no way designed to be a tick off list or a suggestion that anyone should go out and treat themselves, more just something that my friend and I have compiled for reference and for doctor discussion.

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

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Thanks Rama for all the research. There are a few I could add. Much time and research went into this - I know.

Issie

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A bit of work went into this. talking to a pharmacologist, researching myself, writing down every report of benefit, etc.

VERY IMPRESSIVE! Good going! I definetly appreciate it.

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Thanks Rama, boy, this took a lot of time. I think I will copy and research some more. I find it interesting that I have always loved licorice and used to eat it for my stomach, and it was actually helping my high blood pressure, too!! I like your herbal ideas...Used to use Kava Kava, Valerian and L-cartinine, too....interesting!! :)

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I have not personally tried it, but apparently Inositol has been very helpful to a friend of mine. Its a natural suppliment that sort of works like an SSRI.

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My specialist in dysautonomia was going to try DDAVP but I have allergy to it, so they added SSRI. Not knowing how it works both my cardiologist and cardiac specialist suggested the using (if these don't work) agents used for (if I am permitted to say this--meaning nothing offensive to anyone) erectile dysfunction.

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Read from dr Grubbs report that erectile meds were not good. They are vasodiolators but usually selective to pulmonary vascular and sex organs because of the receptors in those regions... I wanted to try it when I thought I had pah but now I think I may have the opposite and it could have made it worse :/

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Rama, don't worry about what that dr said. Desperate people are already self medicating. The dr should more concerned why there are so many desperate people in the first place. Education is need across the board for all of our physicians. Imagine taking a poll of how many people educate their own physician and how many suggest their own medications to doctors and it turns out helping them the most... This syndrome if frustrating to say the least! Thanks for your hard work!

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I have a request to Rama, this info is perfect but could you also work of a similiar thing for testing. Listing the test, the usual dr. and what the test will indicate. I think all to often people may be given meds without know what's truly going on, what type of subsets they may have, etc... Maybe one day these test will become standard and not just limited to autonomic labs...

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Actually, viagra is being given to some CFS people to help with their tirdness. There is theory that it improves energy levels. I wonder if it is the vasodilator effects or if it maybe ups NO levels. Some need vasodilators - not all need vasoconstrictors.

Rama, really appreciate all the work you put into this - I look back on it and have it marked in my favorites file.

Issie

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This is why I frequent this site. I seem to get more help and information from you guys than all the doctors I have been to.... and at no cost! Thanks for this great list and hard work on it!

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Rama, don't worry about what that dr said. Desperate people are already self medicating. The dr should more concerned why there are so many desperate people in the first place. Education is need across the board for all of our physicians. Imagine taking a poll of how many people educate their own physician and how many suggest their own medications to doctors and it turns out helping them the most... This syndrome if frustrating to say the least! Thanks for your hard work!

Rich, so true - I'm one of those desperate ones and Western medicines haven't been that effective for me (I know you and I have talked about this before). We have to help ourselves because sometimes, we're all we got. LOL :)

Issie

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Issie - NO is a vasodilator- for plum hypertension doctors actually pump it directly into the pulm artery so they can lessen vascular resistance by dilating the artery, they also made it into an inhaler. So even if it affects NO its vasodilating. The problem with using NO is that it only last a few minutes so they have pump it in every few minutes. I believe it can cause liver problems so not many people stay on it or at least if they do they have to be monitored closely.

Viagra in particular is a PDE-5 inhibitor, and that enzyme if only found in very particular organs like the ones I mentioned. If it is working for CFS patients maybe they have blockages in those regions or the sexual excitement may activate endorphins... If they are using it off label Viagra makes a low dose form that pah patients use..

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They are using it off label for CFS - I know someone (a female) that tried it. I don't think they gave it long enough to see if it made a difference - but, they said they didn't think it made any difference. I think she was given the original version of it. She goes to a specilized clinic in SLC, UT for CFS and that is one of the things they are RXing to patients (one of many things given off label).

Like I said, NO is a vasodilator and some of us need that. I don't know if viagra increases NO or not - just wondering if it does. Viagra is a vasodilator.

Issie

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Read from dr Grubbs report that erectile meds were not good. They are vasodiolators but usually selective to pulmonary vascular and sex organs because of the receptors in those regions... I wanted to try it when I thought I had pah but now I think I may have the opposite and it could have made it worse :/

That seems strange to me since his PA gave me an article he'd co-authored on one of these type meds that they would consider trying with my OH. I hadn't read it but when I had a follow-up w/ my cardiologist who was looking for something to try (as we didn't know when I was going back to Toledo at that time, he'd also considered another agent used for the same thing, which I didn't know either). He looked at the articles I'd brought from Dr. G and told me it was similar to what he was thinking, copied an article on another med used for same thing and asked if I'd ask Dr. G about that when I see him in my next visit.

(Problem is our ins. co. does not cover Rx's for ED).

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Articles are:

Compaative Efficacy of Yohimbine Against Pyriodostigmine for the Treatment Of OH in Autonomic Failure (authors Cyndya Shinbao, Luis E. Okamoto, Alfredo Gamboa, Chang Yu, Andre Diedrich, Satish R. Faj, David Robertson, Italo Biaggioni

(that's the one my cardiologist was looking at).

The one Dr. G's PA gave me were:

Use of Methylphenidate in the Treatment of Patients Suffering from Refractory Postural Tachycardia Syndome (authors Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Karnjwal and Blair Grubb):

Preliminary Observations Suggesting that Treatment with Modafinil Improves Fatigue in Patients with Orthostatic Intolerance (authors Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Kanjwal and Blair Grubb);

There is a third (not for ED):

Erythropoietin in the Treatment of Postural Orthostatic Tachycardia Syndrome (authors Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Kanjwal, and Blair Grubb)--all are MDs save Beverly Karabin who is PhD. I didn't insert just for brevity.

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thanks - procrit was the EPO effecting drug mentioned above.

Yohimbine is speculative at best - some say it works ok but it is also a drug - a psychedelic stimulant which could have obvious risks. In some it lowers blood pressure. I did forget to mention it though - Phenobarbitol has also been used in the past and a muscaranic receptor stimulant i have forgotten for Decosta Syndrome.

As for Viagra, is effects cGMP which makes normal levels of NO have more potent vasodilating effects. It was being trialled in a fairly scetchy trial for CFS patients to increase cerebral blood flow. At the time there was nearly no evidence that NO was involved in the reduced crerebral blood flow in CFS so its just a guess. In simple terms you can see why it might help a low flow state where there might be low NO bioavailability, but cGMP is normal in these patients potentially and it may not effect neuronal levels where the problem might lie.

More recent work has actually identified increased vasomotor tone and cerebral vasoconstriction which demonstrates abnormal cerebreal autoregulation and the paper suggests this might suggest a loss of cerebral nitrergic or parasympathetic vasodilation in some CFS and POTs patients.

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