fitnesskelly

This is just a thought - I wonder if you email VSL and explain that you haven't had much success with other brands and that you would like to try their brand (but $100 is expensive for a trial) if they would be willing to send you a few freebies or let you purchase a lesser number of probiotics (say a week's worth). The worst they can do is tell you no.

Was just reading VSL's website and it says the probiotic needs refrigeration. Be careful where you order it from. Who knows how long it's been sitting around in a hot Amazon warehouse. If a discount is important to you, you might seek out a no refrigeration necessary probiotic (Orthobiotic, Prescript-Assist and Bio-Kult are the ones I know that are shelf-stable).

No experience with it, but I have heard only good things about VSL#3.

I take Orthobiotic as recommended by a doctor and I like it a lot. One thing it has that many of these other probiotics do not have in them is Saccharomyces boulardii. It's a yeast and my understanding is that it helps fight against candida (I was on long-term antibiotics, so this was an important thing to me). Looks like it can have some other benefits also, per WebMD: http://www.webmd.com/vitamins-supplements/ingredientmono-332-saccharomyces%20boulardii.aspx?activeingredientid=332&activeingredientname=saccharomyces%20boulardii

I get it from Ortho Molecular Products

Price-wise, it's about the same cost on Amazon.

I'm s glad to see this because my husband has high cholesterol and I've been warning him that he does not want to take a statin. Thanks for sharing and so sorry that both of you have suffered from taking this awful drug.

Just wondering if there's a pattern in dietary habits that make dysautonomia better or worse.

I personally can NOT eat a low carb diet. I do much better on a good amount of carbs. I stick to gluten free, and avoid a few other things that upset my stomach, but everything else is fair game for me (I eat pretty high quality stuff - organic, grass-fed and/or pastured, local/regional as much as possible, not much sugar as I don't have a sweet tooth, nothing with additives like high fructose corn syrup, dyes, artificial sweeteners, etc.)

I get short of breath sometimes when I stand up (I know that my BP is dropping pretty good when that happens), when I go up stairs (despite being really fit) and after certain types of exercise.

I tried it again yesterday. Had terrible pain, no Advil this time, took a Midodrine earlier than normal and the pain subsided after 30-60 minutes. Since I took one earlier, I took another again later when the pain returned. Again the pain subsided for hours.

Now I know that I need to take more of it when traveling.

I have IBS in the other direction. I think that no matter what, probiotics help.

Also, I used to be pretty chronically constipated until I eliminated gluten. If you eat gluten, you should try stopping for a while and see if that helps.

I've been having a really bad pain flare lately (traveled to Florida from Ohio over the holiday and I'm either sore from the travel or change in weather). Today I was suffering pretty bad, so I ate some food and had an Advil. It didn't touch my pain. A little while later, I took my daily Midodrine, which I tend to take in the afternoon when the energy starts to run low, and shortly after my pain went almost completely away. It's only been a one-time experiment thus far, but it got me to wondering if Midodrine can help relieve pain.

I'm female, 5'4" and about 135 (lean and muscular). Actually, right before my health problems started, I was a very lean 14% or less body fat (I'm probably about 18% now).

I use the NUUN electrolyte tabs to add to water, but I think they might be causing nausea (but they otherwise work for me). Does anyone else get nausea from the electrolyte supplements that you use?

I agree with Corina. I'm a terrible advocate for myself, but great for someone I love. I'm going to use her suggestion for myself in the future.

And if you still feel nervous, just remember that the doctors "work for you" (in a sense). They are in business to help people who need their help.

I'm just throwing this out there...not saying this is true for you...dysautonomia can be a symptom of something else. Have you been tested for things like various autoimmune diseases that would cause neurological symptoms?

Any chance foot and hand warts are a manifestation of dysautonomia? I've had plantar warts for about 2.5 years (been going to the dermatologist for freezing every 3 weeks for well over a year and they still persist). Suddenly, something popped up on my hand and I asked the derm about it. He said it might be a wart as well. I've never had a hand wart (had one plantar wart as a kid).

I have some other skin issues as well - frequent flushing, a rash that would go away and come back in the same spot for a very long time (that spot still itches all the time, but looks better), bumps like mosquito bites that pop up and itch but there are no mosquitos now that it's cold out. And the really baffling one - I'm highly allergic to poison ivy and was exposed this summer. I got the bumpy rash, but it never itched. Normally poison ivy itches so badly that I scratch until it bleeds. I've always had the skin that others have said they are jealous of, until I got ill. I'm wondering if this is all part of something larger that also includes orthostatic hypotension as a symptom (tons of other symptoms as well, nearly ever area of my body seems affected in some way).

My understanding is that even though the biopsy is the current gold standard test, it is still very inaccurate. Go by symptoms. Not eating gluten won't hurt you.

Something similar to muscle twitching - restless legs and periodic limb movement - they can be treated with Parkinsons drugs.

My doc said get the 20-30 ones. I bought the CEP brand that runners use (the parent company makes medical grade compression gear). They do help, although I might be better helped with a full lower body compression.

I get that breastbone cracking too. The one I find weird and scary is my neck. Sometimes I get huge cracks and pops from my neck. So loud that other people can hear from across the room.

One thing I've noticed that I think may be a side effect for me is that I feel jittery and nauseous 4 hours after taking it. Since it has a very short half life, I'm assuming that this side effects is the midodrine starting to wear off in my system?

Like kJay said, I don't have the classic celiac symptoms, but I had terrible recurrent attacks of pancreatitis from 19 or 20 until I quit gluten. My tests for pancreatic enzymes would test sometimes as high as 10X the top of the normal range. Since quitting, I stay in the normal range. I don't need to pay for expensive and mostly inaccurate testing to know gluten is a problem.

http://www.livestrong.com/article/135243-causes-muscle-twitches-spasms/

I think it is...maybe related to a neurological dysfunction. I feel pain with bright blue light (the kind of light from computer and smart phone screens). Bright tv screens bother me as well. Natural bright light, like the sun, doesn't bother me in the same way.

Not sure why this post showed at the top of my feed...looks rather old. Anyway...

You are talking 2 different things. Fasciculations are just twitching. Spasms are cramps, like a charley horse.

If I start having twitching, I fix it by upping my potassium. If I have spasms (usually a charley horse for me), I fix it by upping my magnesium. Both are effective, every time.

My morning BP is definitely the lowest of the day. I've found that the hungrier I feel in the morning, the lower the BP...so for me it's probably a combo of hypoglycemia and being dehydrated. I seem to peak in the early afternoon. That's when I seem to feel best.

I have an Omron arm cuff and it's been very accurate compared to blood pressures taken elsewhere, like the doc's office.