Herbal And Supplemental Interventions

[green]

About six months ago, I gave up on experimenting with different non-prescription treatments for POTS.

One of the reasons why I stopped was because I had been buying medicines from an online pharmacy in India, and I heard some news about the high percentage of drugs made outside of the U.S. that are counterfeits.

This led me to stop trying U.S. manufactured supplements and herbs, because they are unregulated and I figured that they are probably as low quality as foreign made drugs.

So here are my bullet-point reasons for no longer pursuing herbs and supplements:

1.) Risk - Contamination could worsen the condition or create entirely new problems.

2.) Unknown etiology - without knowing the specifics of what form of POTS you have, its impossible to make informed decisions about which supplements to pursue.

3.) False negatives - its hard to know whether a supplement isn't working because its low-quality, or because the intervention is ineffective.

4.) False positives - The placebo effect is real, and we are a population that is extremely susceptible to it - since something as minor as increased heart rate can make us feel better, it is easy for our expectations to translate into false positives.

4.) Tracking improvement - Let's say a good supplement improves conditions by 5 - 15 %. Many people have more variance than that in their week-to-week lives, making it EXTREMELY hard to tell if you're feeling better. Especially since you have to wait 10- 15 days for the placebo effect to wear off before you can tell. I can't remember what I felt like 15 days ago. I don't even trust myself when I go back to old notes and see I have written "today was a 4/10." was it a 4 because I was physically doing badly, or was it a 4 because I went on a date the weekend before and got rejected and I'm still riding the downer? Was this month better than last month because my POTS is better, or because the days are getting longer and I'm getting more sun?

Reasons for pursuing supplements:

1.) Psychologically - it is almost unbearable to do nothing and have no reason to hope for improvement.

2.) Placebo effect is a real phenomena and it really does make you feel better.

Anything to add to this?

[issie]

I'm into alternative things and if I hadn't been all my life I would be dead right this minute. You have to be very careful with alternative things and I'll be the first one to tell you that you must know the complete health picture before you can even start with alternative things. I've seen things make remarkable improvements and others that have had very bad side effects. Even the health food store in the USA are not supposed to make recommendations to people because it could be counter indicated for a condition that is not known about.

That being said, I've had more adverse reactions to synthetic drugs than to a more natural source of vitamins, minerals, herbs, homeopathy. God made things in their natural states. The best source is food. But, unless you can get or afford organic sources and combine them properly - we just won't get all that we need from the available food sources today. The next best thing is figuring out what the body is deficient in and supplementing that to the body so that it has the necessary materials it needs to help support itself. I'm not saying it will make you well, we all inherited death through sin from our forefathers - we are all in a dying state - but, we might get better quality of life - by supporting what needs to be supported. We aren't deficient in man-made synthetic chemicals.

I've been nearly killed by Western medicine more than one time - literally. If, it hadn't been for my learning about alternative treatments and EDUCATING myself about it - I would not be here.

Issie

[ramakentesh]

Spontaneous fluctuations in disease severity are of course common as are placebo effects. People often attribute a spontaneous improvement to what ever they were doing at the time - ive done that before myself.

In australia there is a herbal supplier that grows all her own herbs and i am sure the quality is quite high. Ive never met a POTS doctor who told me not to take supplements, but both acknowledge the lack of controls and safeguards like there are with prescription meds. Most docs dont know about them or suggest them as a last choice if conventional medications have failed.

My first POTS doc told me to take licorice as an example and for 6 years that was the best therapy Ive ever taken for POTS. Never had any negative side effects and its just good stuff really. On the other hand vasoconstrictors like butchers broom or horse chestnut havent been tested at all in POTS and pose potential risks. Similarly people taking herbal acetylcholineesterase inhibitors may be posing themselves a risk. Huperzine A as an example.

In terms of etiology that applies to both supplements and medications.

Onthe CFS forums people are taking all manner of supplements - some even regularly taking ketamine. I remember there was even a CFS guy from Holland who advocated cocaine!

I dont advocate herbal or supplements to anyone. What I do say is that over the years there has been a frequent pattern of a large subset of pots patients being unable to tolerate many of the conventional medications. And I can understand in that context why they jump to alternative avenues. Many arent really defending much of a quality of life.

I remember getting lectured about the dangers of PICC lines but if you are bed ridden for two years Im surprised anyone would want to continue in that limbo. thankfully the longest ive been bed ridden from POTS is days so far. Hoping it stays that way!

[puppylove]

In my experience herbs have been very beneficial. If I take a phenergan I get very little relief from nausea but a Ginger capsule has been helping more. Melatonin has been helping me to sleep with out scary side effects of sleeping pills.

[ramakentesh]

I think herbs are probably a safer option in Australia than supplements. Some of the supplements are indeed manufactured in third world countries and may have questionable and understudied contents.

[firewatcher]

"Manufactured" supplements in pill and capsule form can be of truly questionable origin and efficacy. All the herbs that I take are quality tested for pesticides, heavy metals, etc. and most are organic. My Herbalist makes all his own "supplements" so they are tailor made specifically for me and my conditions as they present from week to week. It is the closest thing you will ever get to custom pharmecueticals. I have made huge improvements in the last year of taking them, so much so, that I can now hold down a full-time job outside my home and I take 2/3 less of my POTS drugs.

[ramakentesh]

I know someone that has improved dramatically through TCM practices - but its important to seek a qualified and highly regarded practitioner.

[issie]

It is important with any alternative treatments. If you don't know what you're doing - don't do it. You can however, learn. If someone else can learn - you can too. But, there are plenty of people who know what they are doing when it comes to alternative treatments. And for me . . .that's my FIRST choice.

Issie

[AllAboutPeace]

Hmmm, I am really curious about this, but I fall into the category that you mentioned, Issie. (I don't know what I'm doing ) I'm overwhelmed by all of it. I've chosen not to take meds for POTS, at this point, because I'm really just nervous to add something else to the mix.

I started taking Stevia (natural sweetener) about a month before I developed POTS and that was the only change I could pinpoint in trying to figure out where POTS came from. I noticed, when looking back that my hr probably was starting to elevate around that same time. I didn't notice my hr, but I did notice being extra tired, having taken more baths than I had in years, started having a drink as soon as I got home for work on week-ends, and adding morning walks. It seemed like I was subconsciously trying to slow things down. I'll never know, but it may unfortunately end up being guilty by association...

[issie]

Herbs are very potent. They are a medicine - just in it's more raw state. You can possibly have very bad reactions and long term consequences - but, you can also find the solutions you're looking for in maybe a more tolerable state. Like firewatcher said, it may be that, with herbals you have to rotate what you take from week to week. Or, only take them a few times a week. But, you really have to be tuned into your body and paying attention to know what and when you should do certain things. We don't always get it right - even when we know what we're doing. (I can vouch for that.) But, we might get moments of more normallacy, and less long term possible consequences - with these herbals, homepathies and vitamins and minerals than traditional meds.

As for reputable sources, there are ways to find out where, how and what they are made of. You can find reputable companies - but, you have to do your homework to figure it out. It's true not all are created equal in their quality or standards.

Issie

[ramakentesh]

Similarly people taking herbal acetylcholineesterase inhibitors may be posing themselves a risk. Huperzine A as an example.

There are so many of these that its quite daunting if your taking mestonin. many herbs may interact. Gingko, licorice, rehmannia, gotu kola, lactuca virosa, etc.

[julieph85]

Green, I'll be the devils advocate here. I basically agree with everything you said. I'm not a fan of eastern medicines because of the reasons you stated. I do however feel that they probably do work for some people, and I don't think there is anything wrong with trying them and who knows, they probably do give some people a lot of benefit. I just feel like you do in that a huge percentage of the relief people feel is most likely placebo effect and it is also nearly impossible to treat yourself appropriately with them because most of us have no real idea of what type of pots we have.

[E246]

Green - Pots is so random it's hard to know what works. One day something makes you feel better and a week latter it causes a crash.

But I sill try things that might make a difference.

[Chaos]

In reality, nothing we take or do is going to heal us. In my opinion, we just need to figure out what we need to do to support the body so it can heal itself. I use supplements for that purpose but it's under the advice of a reputable herbalist who DOES know what he's doing. In my experience the supplements I need do change pretty regularly.

Also in my opinion...if the placebo effect makes me better...I'll take it!!! Whatever helps me get some of my life back is fine with me. LOL

[green]

I know someone that has improved dramatically through TCM practices - but its important to seek a qualified and highly regarded practitioner.

Rama, you and a number of other people make a really good point in response to my #1 - quality control can be addressed, in part, by working with a local manufacturer.

As for doctor's never warning against herbal medicines - I guess I've always gotten the impresson they don't say anything, because 1) they know you're not going to listen, 2) they don't want to create the impression that the situation is either allopathic, or complementary - they'd lose patients. Especially when you consider that there isn't much allopathic medicine can do for POTS.

But just because allopathic medicine can't offer much doesn't mean that you're better off with stuff that is untested and unregulated.

when there are two choices A and B, and we know there are some risks for choice A, but we don't know the risks for choice B, then our minds naturally regard B as if it was risk-free.

[ramakentesh]

There is always something in your environment that is going to change. You can always 'invent' a causal explaination for why you're feeling better or worse.

People need an answer for something like POTS which they cant explain, and sometimes they will attribute random fluctuations in disease activity to what ever they were doing at the time, and then use this to re-assert a belief in a theory that really has very little supporting evidence.

Some people have had the disease for a long time and in the past have been rejected by many doctors so when they finally find an answer or a theory that sits with what they think is the reality they often cling to it adn even stick to it despite overwhelming evidence to the contrary. A leading researcher made the comment that if he actually does find the definitive cause of CFS related diseases as an example, half the patients wont even listen because they will be too busy telling him about the Pall theory or methylation, etc.

Green I guess in response to your original post: You dont like herbal therapies or supplements because they lack controls. fair enough and it is true. I cant think of any actual research that has conducted a double-blind evaluation of the efficacy of any herbal remedy on POTS specifically.

However, there arent any double-blind studies on any medical therapies for POTS other than for low dose inderal and exercise. No long term studies on the efficacy and safety of Florinef in POTS, none on midodrine other than acute dosages, none on octreotide and limited work on mestonin and procrit. Two major articles on POTS actually state that pharm treatments for POTS are more guesswork than science.

The difference is that these medications have been FDA approved and had proper evaluation of their toxicity and interactions which is true.

But since no one has definately settled the cause of POTS in just about any case, the etiology is still poorly understood, it is hard to say whether any treatments are addressing the primary problems and some may even be fanning the flames for all we know.

Herbs like licorice are frequently mentioned by doctors for POTS because it works in a similar way to florinef and because it has been used in herbal medicine and in cooking for centuries and has no know negative effects other than low potassium and hypertension from volume expansion. No biggie for me. I also know from my experience that the few times I have used a herb with doctors supervision and sometimes even suggestion, I have experienced less side effects from that herb than from its medical counterpart (be it licorice v florinef) as the example.

if someone turned around tomorrow and told me that L-cartinene worked for POTS i would be interested. this is because I know that there is a LOT that the doctors dont yet know about POTS and there is the potential for someone to randomly - although unlikely - stumble on something that does treat the primary etiology. There are obvious risks in pursuing a supplement - obvious risks. I would do my homework and I would talk to my doctor about it but ultimately if I was bed ridden like some of the folks here I would probably consider take the risk.

There are some potent supplements out there though - nitric oxide substrates and all sorts of stuff. these could have major consequences.

[ramakentesh]

But i can see Green that you are doing quite well on a healthy dose of placebo. Works well for me to at times

[julieph85]

But i can see Green that you are doing quite well on a healthy dose of placebo. Works well for me to at times

Lol, me too !!

[RichGotsPots]

if you go to a good local chinese herbalist they will actually give you ingredients that you have to boil up, no capsules. That's one way to make sure the quality is better. I've always looked for gov't run studies on herbs, like German's Commission E, but in the end I haven't found any I would consider quality.