List of conventional and potential treatments for POTS/OI

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

Impressive list Ramakentesh

thanks - glad someone appreciated it.

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

Since I trade biotechs I wanted to alert you that the panel has recommended approval for Northera today - a fast acting, effective new drug and alternative to midodrine. The final FDA decision is in March but if approval happens as recommended it should be on the market very soon. More here:
http://finance.yahoo.com/news/FDA-Advisory-Panel-Recommends-pz-1041433021.html?x=0

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.)

what about Vasopressin/Desmopressin (synthetic anti-diuretic hormone)? I know some patients have taken that for fluid retention and it has helped boost blood volume and lessen/resolve OI issues.

http://www.prohealth.com/library/showarticle.cfm?libid=8361

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??

sensing progress said:

what about Vasopressin/Desmopressin (synthetic anti-diuretic hormone)? I know some patients have taken that for fluid retention and it has helped boost blood volume and lessen/resolve OI issues.

http://www.prohealth.com/library/showarticle.cfm?libid=8361

Click to expand...

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.

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

ramakentesh said:

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

Click to expand...

what does?

vasopression.

ramakentesh said:

vasopression.

Click to expand...

so you have taken it yourself? did it help?

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

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.

mellster said:

Since I trade biotechs I wanted to alert you that the panel has recommended approval for Northera today - a fast acting, effective new drug and alternative to midodrine. The final FDA decision is in March but if approval happens as recommended it should be on the market very soon. More here:
http://finance.yahoo.com/news/FDA-Advisory-Panel-Recommends-pz-1041433021.html?x=0

Click to expand...

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.
"

mellster said:

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.

Click to expand...

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.

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

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...

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