YolaInBlue

I'm sorry to hear about your horrible ER experience. I had a few of those myself. I've been refused IV fluids in the same hospital I was diagnosed in. Last time, in December, I went after a horrible episode, ER doctor insisted I was just fine, because my heart rate already dropped to 100. He didn't want to hear that I have many symptoms, not only heart rate and it's hard for me to bounce back without the help of IV saline. Finally after I begged him to call my cardiologist, he did and agreed to one liter. I've had even worse experience in my local hospital which I avoid now. Like Amy, I asked my dysautonomia doctor for a prescription for IV saline. I made arrangements with a local urgent care clinic. I can go there whenever I need an IV fix. No more additional stress. I can also show my prescription in ER if needed. Maybe you can do the same. Please talk to your doctor. Some doctors don't listen to patients but they usually listen to other doctors.

I have an appointment scheduled with the same doctor at Vanderbilt for May 22nd. I was so looking forward to it. I don't know the cause of my dysautonomia and was hoping for some tests there. Did the doctor order any tests? I wonder if it's worth to drive there all the way from Florida.

I have tried 2 beta blockers, Bystolic and Pindolol, for tachycardia and blood pressure spikes. I also have brachycardia sometimes and normal resting heart rate in the upper 50's. When I was on beta blockers I started seeing heart rates in the low 40's and they freaked me out more than my high ones. I tried smaller doses than prescribed and I'm glad for that. Today I talked to my cardiologist and he agreed that I shouldn't take them.

I had GI issues and horrible dizziness after meals with onset of my dysautonomia. I know, I have blood pooling in my stomach. I was already off diary except yogurt and kefir made from goat's milk, and some cheese from time to time. I've been using almond milk for about 3 years. I went gluten free, refined sugar free, added probiotics and vegetarian digestive enzymes. I crave sweets so I had a teaspoon of manuka honey a day to stop my cravings. My GI issues resolved within 6 weeks. I'm still gluten free. I have hard time with sweets, though. I eat small meals every 2-3 hours. Occasionally I have minor stomach pain, usually when I cheat on my diet. Going gluten free was a great decision for me.

My hospital doctor started me on Midodrine and Florineff when I was diagnosed back in October. Midodrine helped me ease one of my bad "episodes" within 30 minutes (usually they last for several hours). My family doctor advised me to stop Midodrine, saying that it's a bad drug and she wouldn't take it. Then in December I've seen dr. Thompson (dysautonomia specialist) and he put me back on Midodrine. I'm not fully functional either way but Midodrine helps me with dizziness better than anything else. I take small dose (5mg) when I'm tachy and have to be upright for some time. I have both sympathetic and parasympathetic systems overactive so I go through brachycardia, tachycardia, low blood pressure, as well as high blood pressure spikes. My "episodes" are h**l with both systems "fighting" with each other. Low heart rates scare me the most. I only take Midodrine now when my heart rate is high and blood pressure low. It's a short acting drug (about 4 hours). Helps my mornings a lot. I have no side effects so far with 5mg dose once or twice a day.

My sodium level in 24 hr. collection is 471. So far my doctors only note that it's high, no explanation for it. My plasma level is normal. I also had unusually high volume and needed 2 containers for 24 hr. collection. I do drink a lot and take 2-3 salt tablets a day. I'm on Florinef. I salt foods as usual. I don't ever eat fast food or salty snacks, so I don't know where it comes from. I visited a dysautonomia specialist in Pensacola, FL and he told me to continue what I've been doing and not to worry as long as my plasma level is ok. 471 seems really high, maybe it is a piece to a puzzle. I'm really interested if you can find a possible explanation.

I often wake up startled with my heart pounding. It races for few minutes than slows down. And I don't have nightmares. I had my worst episodes while waking up (and driving) with heart rate at 160-170, caught on Holter's monitor. Those lasted for hours and it was before my diagnosis and Florinef. I'm still tachy in the morning. I try to get out of bed very slowly. My standing heart rate in the morning varies from 100 to 130. Sometimes it gets down to below 100 within an hour. On other days it stays elevated until after I take Florinef, around 11 a.m.