Kor1212

Misstraci, I got so mad reading that book. It illustrated just how much you need to be your own advocate when it comes to your health. It didn't matter how much data and "proof" was given to the CDC and NIH they still did what they wanted! Hard to believe this disservice is still being done to pts with chronic illness like Lyme. It might cost too much for the insurance companies to pay for a year of IV antibiotics so they get the CDC to state " no such thing as chronic Lyme". I think POTS/ dysautonomia could end up like this once they figure out how much money is spent trying to diagnose pts over many years. I know my last year of searching for answers is well over the 100,000$ the insurance companies say is too much to spend on treating Lyme. Anyway....good book. I read another one similar to this, called The Great Influenza. It's about how our country spread the Flu back in the early 1900's via our troops...and the CDC denied that too for as long as they could.

Jangle do you have a link to that autoimmune study?

I think it is a huge help to find your mechanism. I recently went to Mayo, and learned that I have normal blood volume with the amount of salt and fluids I am doing ( positive reinforcement for continuing), I also learned that I pool blood even though I have no visible signs, so it makes sense to wear compression, I also learned my NE 3x higher than it should be even though I don't have signs of Hyper type POTS ( my HR runs 40's and BP low). So my meds were changed from Flurinef and Midodrine to Clonidine based off of these findings. Knowledge is power:)

Chronic Lyme disease is super hard to test for. Tons of false negatives with the ELISA and western blot. Read Diagnosis Unknown, the Lyme epidemic ( can't think of the author). This book explains how misunderstood, misdiagnosed, and mistreated lymes disease is, and specific tests to do to diagnose it. So infuriating how political healthcare is! Anyone with a chronic disease that is difficult to diagnose (POTS, OI, etc) will get fired up reading this book!

Jangle, how do you find these articles? I wonder if my endurance training background is why I tolerate my NE levels in the 2000, because I am desensitized to the vasoconstricting effects? Even with my NE levels that high I don't have " panic attacks", or palpitations, clammy skin or high HR. My HR runs in the 40's, my BP 90/60. I just started a low dose of Clonidine along with my salt and fluid, and have been walking everyday for the past month despite feeling like death. So what would do the opposite of a NET?

I recently had my catecholamines checked and found my norepinephrine is 400 supine and 2090 when standing. I however do not have anxiety or very tachy issues. I do vasoconstrict like crazy tho! I tend to pool and have low blood volume so I am on 10 gms salt and 3 L fluid per day. And daily exercise. My resting HR is in the 40's, goes to 100 when I stand. Certainly low HR when you look at my NE. Funny how all our bodies are different.

Try taking it with food, in a teaspoon of applesauce, pudding, yogurt, ice cream, etc. then follow with water. That's what I do with my pts that have a hard time swallowing all their pills. It seems to help:)

So, I recently had a trip to Mayo Clinic,AZ. The Neuro doc there says 10 gms salt and 3 liters fluid per day. 1tsp salt is about 2gms, so that is 5 tsps per day! I figure my diet gives me 2-4 gms of salt ( I salt everything). I drink a cup of broth with 2 bullion cubes( each cube= 1 gm salt) every AM, followed by water, then 8oz tomato juice with 1/4 tsp salt ( this is about 1gm salt) as a mid morning snack. Then I eat pickles, pretzels, nuts etc, throughout day. The broth is the easiest way to get salt in in large quantities that I have found.

That's the thing, you don't desat per the pulse ox because it reads the amount of O2 that is bound to the hemoglobin. Every hemoglobin cell is adequately saturated there just arent enough of them perfused due to low BP, vasodilitation or constriction, etc. So our bodies want more O2 even though pule Ox reads 99%.

I progressively got worse over a year, to the point of being couch ridden. At that point I wld get lightheaded, dizzy, SOB, nausea with any change in position. I had continuous chest pain....just like a heart attack for a month. And the fatigue was like I had the flu every day. I was hospitallized in June, diagnosed with dysautonomia( etiology unknown) put onFlurinef, Midodrine, 3 L fluid and now 10 gms salt. Now I have much less of all the above mentioned symptoms. I can at least do a few household chores, walk a little and be upright most of the day, and I'm back to intermittent chest pains! Maybe it's time for meds for you if your that far down?

Peregrine, I get those surgy feelings too. My BP and pulse remain constant during episodes...I've checked. Feels like when I'm about to crash on my bike, but I don't! I had that feeling every time they flushed my IV in hospital 2 months ago. It would cause my HR to go 40 to 140 and BP drop, and Id get really SOB, and would last 2 mins. None of the docs could explain it. Now I know it will go away so I just wait it out, it's a horrible feeling. It also happens when I get emotional...really bad. So I don't cry cuz I feel like that and have chest pain! Don't know if it's NE, cate, adrenalin or what. Seems like it happens less now with my meds,salt and fluids:))

Nice post NMPotsie! I was just diagnosed with dysautonomia in June at a big teaching University, they don't know why I have it ( I have no med history or risk factors) yet they told me to never expect to be better. They put me on Flurinef, Midodrine, salt and fluids and said come back in3 months! In the mean time I am seeking a 2nd opinion. It seems reasonable to me to do further testing ( I had TTT, QSART, tons of cardiac, Pulmunary, labs, etc) to find the mechanism of my dysautonomia. Do I have dopamine, NE, catecolemine, hormone, autoimmune antibody issues, etc? So I emailed doc at Mayo directly and had my local Neuro call him.....I got an apt within 6 weeks. The doc actually emailed me back from Mayo, and i'm not even his pt yet! This is coming up at the end of August and I can let you know how it goes. As far as the expense, I am flying from OR and staying a week for 1100 $. I have already met my deductible for BCBS, so whats a few more thousand? And who can put a cost on your health? I believe everything happens for a reason, so I need to here from a professional, who is well versed in this disorder, why they think this is happening to my body and what I can do to minimize my symptoms and give myself the best chance to recover. I do not accept the Docs opinion of wait and see, and you won't get better when she doesn't treat this type of disorder on a daily basis. The challenge is finding the right doc for your disorder, POTS happens for so many different reasons. You have to be your own, biggest advocate:))

Mine was this June when I was hospitalized and finally diagnosed with dysautonomia. After starting my IV the nurse flushed it with 3cc NS. This sent me into full blown "fight or flight" response: HR went from 60 to 140, BP dropped to 80/40, SOB, Chest pain, impending sence of doom....I thought I was coding! Of course being a nurse myself and being in my ward ( ICU) I as well as my colleagues didn't believe it, so when it was due the nurse flushed the IV again, this time .2 cc caused the same response! Long story short, I was transferred to a teaching facility and during the week there I did the same thing 10 more times with NS flushes! Now how can that be? Your blood is made of NS. Why such a huge response? Is this a NE surge caused by a change in pressures? Anyway it was scary and a weird response. Don't know if I still do it, haven't had an IV since. Blood draws we're just fine.

NMPotsie that's great advice. Thanks for all the great ideas! I already had the salt everything down! I've been doing sunflower seeds, pretzels, pickles, pistachios, V8(with added salt), hummus, salsa, G2, sea salt, etc.

Friedbrain, I had chest pains like you described for 2 months before I was diagnosed with dysautonomia. Mine was always worse when I layed down, bad on my left side, then bad on my right side, and then continuous. During my work up we did an exercise stress test with pressure lines in my heart and arteries (Swan and Art Line). This showed that I had a 50% reduction in stoke volume from 3 months before. All of my pressures were low in my heart and did not respond correctly to exercise. I have been an endurance athlete for 20 yrs, I have no heart disease. So my theory for the chest pain, low blood volume getting to my heart. My chest pain was relieved after 8 days in the hospital and starting Florinef, Midodrine, salt tabs, and tons of fluids. That was almost 2 months ago, I am maintaining the meds, 3 L of fluid per day, and attempting 10 gms Na per day. I only occasionally have the chest pain. Hope this is helpfull. Don't think you will be able to find data to support my theory but maybe my data will help!