green

As we all know, mental fog and concentration difficulties come with the territory of dysautonomia. I have recently tried a supplement that I seem to be tolerating well that helps with that and I have friends swear they like it better than Adderall. It's called Piracetam, it's an aminoacid and it's the worst thing you will ever taste in your life. So if you decide to take a stab at it, either buy it in pill form or get a home pill-making kit and go that route.

Turmeric seems to help many with the physical fatigue, btw. Just thought I'd throw that out there

Where do you get your piracetm from? I tried piracetam years ago before I knew that I had an autonomic problem. It didn't do anything for me, but it didn't have any taste either - I got it in pill form from biogenesis.com

I tried Provigil once. It didn't help the faitgue, but it did give me insomnia!

I have been taking provigil for years. I get a significant benefit from it.

When I first started taking it, I got insomnia. This went away over time (it took months...)

Initially, it made me jumpy in the mornings too. It still does this, a little, but ritalin/adderall are worse. Provigil doesn't cause a crash when it wears off.

I can't afford provigil through a U.S. pharmacy. I buy mine as "modalert" from an overseas pharmacy.

Can anyone give me advice on selecting a holistic doctor? I want to find a doctor in my area who believes in optimizing biomarkers to improve overall health. I have had the same mildly irregular blood test results for a couple of years. My GP doesn't think it has any significance, but he doesn't have any new ideas.

I don't want to get involved with touch therapy, or removing dental fillings, diagnosing hidden food allergies or chemical sensitivities, or anything else outside of mainstream medicine. I want a second opinion on these blood test results from someone who is likely to have a different point of view, but certain points of view are ruled out a priori.

So how do I vet based on my criteria? The best sounding strategy I've come up with is to act on personal recommendations and then ask the doctor about their attitudes during our first meeting. But then I'm already out for the cost of a visit. So this doesn't seem like a good idea.

Can you grow wheatgrass yourself? That would be awesome.

I've been taking wheatgrass pills for the past couple of weeks at a friend's suggestion. Supposedly it is good for detox and energy. Drinking wheatgrass juice is the best, but I am a fussy eater and can't imagine being able to keep down something chunky and green. Anyway, my POTS symptoms feel better since I started. I was having a tough time in the heat. I feel a lot more energetic. The energy kicks in about 1/2 hr after I take the pills. The only downside is that one dose is 7 pills. I take 3 in the am and then 4 with lunch. The pills are on the larger side and sometimes leave a bitter aftertaste. I am not one for supplements and think I may stop after I am finished with this bottle (which is 14 days' worth). But just watned to share that it is helping/working in case anyone else is interested.

I absolutely can NOT sleep inclined at all. Not in a car, plane, chair, recliner or propped on pillows!

I am in the same boat as you, Firewatcher. Even as I take off in an airplane, and feel like my head is filling up with sand (sedation from the air-pressure change), I can't sleep in a chair. I can't sleep in a chair, even though I am a narcoleptic!

Eerily parallel to our current thread: my brother is diagnosed narcoleptic also, and I suspect he has a milder form of my dysautonomia. HE falls asleep anywhere - trains, planes and automobiles. Unbelievable.

I have the equivalent of a cinder block under my 10-foot long bed, and I have been able to adjust to it. I also sleep better - I don't wake up feeling like my head is spinning anymore.

I recommend using books under the foot of the head of the bed. Gradually adding to the stack will allow you to adjust gradually.

Makes sense to me. I also wonder if blood sugar issues are part of the problem. If there isn't enough glucose in the brain, this could cause the brain fog too. Since there are some of us with weird blood sugar problems it makes sense that the combination of the two - would - created BRAIN FOG.

Awesome point. I think that since the purpose of blood is to carry glucose and oxygen... insufficient blood-flow and hypoglycemia go together.

Dr Kinsella at Forest Park Hospital is a neuroligst who also specializes in autonomic dysfunction. I live in St Louis and didn't discover this doctor until my son was already being treated by doctors in Cleveland. After our appt in Cleveland in August, I plan on making an appt for my son to see him. It would be great to have a local doctor rather than the 9 hour drive to Cleveland. I have heard very good things about him too.

I have also seen Dr. Kinsella and I really respect him. He spent more time with me and asked more probing critical questions than any one else I've seen about this problem. Also, his advice was generally good.

So what are we supposed to do? We try to help ourselves, but we may be harming ourselves MORE. It's all very confusing. I guess the best thing to do is see IF we feel better with a supplement/product. Then leave it off for awhile and add it back later and see if it makes a difference. My goodness we are all just guinea pigs. We have to be experimented on by our doctors and ourselves.

That's something I thought about too.... this is a situation where incomplete information is worse than no information at all. If you read the study I linked to in my first post in this thread, you might conclude you should avoid sunlight and vitamin D. But if you went to your GP and had a blood test and found out you were vitamin D deficient you would be prescribed a vitamin D supplement. Given all the information at hand, I guess the best choice is to do what your doctor recommends since he makes recommendations based on accepted practice, while the research stuff is 'on the edge'

But then, I guess this is a case for not bringing up issues like this to begin with.... maybe I shouldn't have made that post.

I have been pursuing a personal philosophy of intentionally trying NOT to research my health condition in the past few months, because I feel like I get myself worked up emotionally thinking about all the things that could be responsible for my not feeling well. I have a bad habit of being unable to distinguish between a remote possibility (i.e. some new research hypothesis) and established practice.

So, my Vit D 25hydroxy level came back severely low at 13 (norm 40-80). My cardiologist does not like this at all and prescribed the high dose Vit D 50,000 iu weekly for 8wks, then more vit d for 4 more weeks. I have read in several places that Vit D supplements helps POTS patients, but never on how... Does anyone know more about this? I am now going to see endrocrinologist to rule of hyperparathyroidism (crazy, but I am hoping that this may be the cause of my POTS!).

Thanks in advance...

Has anyone seen the research suggesting that vitamin D supplementation is not helpful for some autoimmune diseases? The logic is that some autoimmune diseases are caused/exacerbated by persistent low-grade infections, and vitamin D supplementation temporarily eases the inflammation but causes the infection to worsen.

http://www.eurekalert.org/pub_releases/200...f-vdm040809.php

Better Crocker now makes GF cake and brownie mix. It is not as expensive as some specialty GF baking items. I haven't tried the cake mix, but the brownies are indistinguishable from normal brownies.

Rice and corn varieties of Chex cereal are both gluten free and less expensive than specialty gluten free cereals.

Corn tortillas can be an adequate bread replacement if you steam them in the microwave to soften them up first. (maybe steaming corn tortillas is obvious to everyone, but it took me months to discover that it improves the texture of corn tortillas).

I think GF dieting is easy except for two things: 1) gluten sneaking into foods where it doesn't belong (like processed chicken), and, 2) eating out.

I took Acetyl-l-Carnitine, at a dosage that I cannot recall, except that it was equal to the dosage used to treat neuropathy in a study I read. I took it for months, quit for a couple of months, and then took it again for several months.

I think it improved my hearing - if you can believe that. But it didn't help my brain fog. I discontinued it over six months ago.

From what I've read, Acetyl-l-Carnitine would most likely be helpful in FM/CFS, and also in mitochondria disorders.

Are you going to try it?

Someone had posted something about carnitine a couple weeks ago.

Since I am so afraid to take pills I looked up natural food sources and found beef ( steak ) and hamburger to have the highest content.

I have a feeling it probably doesn't have the same effect though?

I have been on Calan (verapamil) all this week. 80 X 3 daily. This is a beta-blocker. I am noticing no side effects, but no benefits either.

Sorry. I meant to say "calcium-channel blocker" Verapamil is not a beta-blocker.

I am reluctant to try BBs because I read 1) they tend to stop working over time, and, 2) they increase one's risk for diabetes.

I have been on Calan (verapamil) all this week. 80 X 3 daily. This is a beta-blocker. I am noticing no side effects, but no benefits either.

Have you thought about maybe trying Toprol? That is what works best for me. I don't have any side effects from it.

Recumbent bike w/ adjustable resistance levels helped me.

Congratulations! That is so great to hear that you are feeling better!

They are repeating the trial because in theory it should work in any postural hypotension where sympathetic underactivity is the underlying problem.

That is very interesting to hear. Do you remember where you came across that information? I read the company's report on why they were doing a retrial, and all they said was that the measurement of dizzyness was too narrow and they felt like a new study with a broader measure and additional test subjects would have more power and hence less of a chance of a type II statistical error.

>It has been trialled unofficially in POTS and the results were not encouraging - despite some doctors touting it as the next >

medication on the horizon...

Do you remember where and by whom it was trialed?

Chelsea Theraputics is once again recruiting for a study on the use of Droxidopa to treat Neurogenic Orthostatic Hypotension. They will continue to recruit for the next few months. Anyone who thought about signing up but missed the enrollment window has another chance.

The previous study failed to demonstrate that Droxidopa improved dizziness in people suffering from Neurogenic Orthostatic Hypotension. This imperiled Chelsea's application for FDA approval, so they appealed for permission to do a new study. In their appeal, Chelsea argued that the symptoms of orthostatic hypotension encompass more than just dizzyness. The FDA agreed and now they're going to measure whether Droxidopa improves a wider range of symptoms.

Do other people out there agree with me that this seems fair? Hypotension can make a person feel lousy without necessarily making them dizzy, and, the degree of dizzyness a hypotensive experiences does not always correlate with their fatigue or brain fog? Or am I thinking wishfully because I want Droxidopa to be an effective treatment for autonomic disorders?

I got all this information from Chelsea's website.

Do you also have unusual gastrointestinal experiences on these oils? If the oil were irritating to the intestines that could cause the heart palpitations. Or if you have some kind of allergy to fish, or something else in the pill that could cause heart palpitations.

Otherwise, it doesn't make sense to me that anyone would get heart palpitations on the same day they took a fish oil supplement. The mechanism of action of fish oil is supposed to be delayed.

Have you had the same experience after eating fish? Ever cooked salmon on a grill and had a couple servings of salmon fileted in its own oil? You should have gotten a decent wallop of fish oil in that meal. what did it do to you?

I know!! Everyone says it's supposed to be really good for circulation, which is why I gave it a go, but it's just not worth the reaction..

I've also had good luck feeling better with magnesium supplements, however OTC pills usually have 'magnesium stearate' as a filler, which gives me constipation. Country Time "liquid magnesium" is much better, but it's a little pricey. Epsom salts are the cheapest and fastest acting form of magnesium (based solely on personal experience), but they are contraindicated for regular use and the taste is unbearable.

What brand of magnesium supplement do you use?

I have seen an improvement in my symptoms while taking citrulline. Specifically, my post-exercise malaise has improved dramatically, and my brain fog is noticeably better.

Citrulline is an amino-acid that has been found to have vasodialating properties - consuming it raises the amount of nitric oxide in the blood.

I have been taking 3 g/day of citrulline malate as a powder manufactured by "NOW Nutracuticals" for five days. Previously, I had been taking 1.5 g/day of L-citrulline in capsules made by Puritan's Pride that use magnesium stearate and rice flour as a filler. The Puritan's Pride formulation hadn't been doing much for me, but I wanted to try a different formula because supplements with mangesium stearate constipate me and my intuition is that I don't absorb food properly when constipated. Unfortunately, I don't have enough information to determine whether the difference in effects I'm experiencing is due to the presence of citrulline malate v. L-citrulline, the increase in dosage, absence of magnesium stearate, or some combination of the three.

My interest in Citrulline dates back to an article I posted about on this forum some months ago, comparing the effects of Citrulline to Viagra. Since then I found some more articles about Citrulline, including:

http://bjsm.bmj.com/content/36/4/282.long

>>But I don't have a subscription to this journal so I haven't read the article.

AND

http://www.ncbi.nlm.nih.gov/pubme/10812668...mp;ordinalpos=5

>>But, this is one of those weird Eastern European journal articles that you can find on just about any supplement, herb or vitamin. Not to sound too closed-minded but I tend to assume that research isn't legitimate unless it's conducted in the U.S., Western Europe, Japan or Israel. ... I was surprised to see Citrulline being used specifically for dysautonimia.

Have you read the article itself?

Do you consider The Journal of Alternative and Complementary Medicine to be a reputable journal?

Here's a cool overview article on Orthostatic Hypertension (maybe a repeat post, but what the heck). It mentions a number of familiar concepts:

Orthostatic Hypertension: When Pressor Reflexes Overcompensate

There is this on Butcher's Broom for OH (hypo), and if it helps underlying probs no reason it couldn't help for OH (hyper) though elsewhere there are warnings about combination with other drugs, as one might expect of any drug/herb:

Ruscus aculeatus (butcher's broom) as a potential treatment for orthostatic hypotension, with a case report

From their description it does induce norepi but in a localized end-stage spot... as opposed to something which enhances it up-stream or tells adrenals to flood the blood with it, etc. So norepinephrine is "technically" induced, but not in the manner one would tend to be "concerned" with. That's how I interpret it, at least

I struggle to read and I've always loved to read. It's hard to hold a book because my hands go numb and because of the dizziness I have trouble concentrating for very long. I do much better at the computer because I don't need to hold the book and can make the print bigger. I really miss reading..do any of you have suggestions that could help or do you struggle too?

Have you tried reading while laying down? That could help you get blood to your brain. It worked for me.

I also went through a transient period where my reading comprehension was exceptionally poor.

I tried Butcher's broom for three days. I don't think it had any positive effects for me and I feel pretty disappointed.

I went to a specialty herbal shop in my hometown that seems very professional - they distill liquid extracts right there in the store and I talked to the owner about their standards and procedures. But, I still wonder "how much of the stuff am I getting?" since the bottle of liquid extract informs me obliquely that I should be taking "5 - 15 drops" each day but does not have any other information about dosing or contents.

Previously, I purchased some Horsechestnut Seed Extract and have been using it for a week. In contrast to the Butcher's Broom, the Horse Chestnut seems to help, but the benefits haven't been dramatic.

some of us have the opposite - postural hypertension and increased pressor responses

I am skeptical of this television show "the incurables" the episode I watched was melodramatic as if targeted to an audience of people who have serious health problems. The way they played sad music when the girl and her family discussed her symptoms, and then switched over to triumphant music when talking about YHF was corny. And the way they hyped up how traditional medicine failed to help by emphasizing the doctor's warning that missing a dose of florinef could kill the patient seemed designed to play into the frustrations of sick people.

I am inclined to suspect that YHF had three episodes made about their lab, for reasons other than merit. blood-test based nutritional recommendations have been around for decades, and there are plenty of companies that market them. Why does YHF stand out from other companies?

More importantly, what evidence does the show provide us that the girl recovered because of YHF and not for some other reason? The show can't provide us any evidence to the contrary because it just gives us success stories - we would have to know the failure rate to decide whether YHF really helps anyone. It isn't the fault of YHF that this show doesn't validate their methods, and their methods might be sound. but, I need more evidence before I place any hope in YHF or nutrient therapy.

Many people say that oral B12 is not as good as a B12 shot.

But what about sublingual B12 vs. B12 shots?

I wanted some B12, I was worried that my intestines wouldn't absorb it, so I bought a month's supply of sublingual B12 from Walmart for 9 $. Apparently, you can also get subdermal B12 patches for 25 $ a month.

What is in the shots, exactly? Is it the same form of B12 in the pills? If so, then absorption would have to be the only issue, and I would think sublingual or subdermal administration would be as good as injections. Unless there is an upper limit on how much B12 can be absorbed through a given patch of skin in a given amount of time.

kayjay

For the price of one doctor visit for shot, you could get several scrips of the stuff!

Practice giving shots and using syringe on orange. For some of us and our weird ways, be impossible to tell if ONE shot is helping or not.

I seem to either have a weird body or weird suppressed "Placebo" effect after the fact. I swear a med/vitamin is helping, then after a few times it no longer does. MANY of us have experienced that..thus I don't like to "give a full report" on a new med/vitamin supplement until I've been on it for weeks.

CynicalSophia