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The last 8 hours I have been a fabulous moment of reprieve which I am sure won't last much longer. It's the first I have had in almost a year. Anyway.... I am wondering about the mechanisms of this syndrome. Causes dehydration or rather the a problem with reabsorpbsion of electrolytes and minerals..... sorta on the line of recent discussion.....


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It is Issie! For the second day in a row, my mind is absolutely clear (I know it won't last) but while it's clear, I hope to research the above more. Until y'all posted the areas you were researching, I had always thought of the issue in terms of damage (malfunction) to the hypothalmus sending (or not sending) out messages to the receptors......

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Feeling better???? What have you done different?

YES! Can you believe it? From in my bed to dancing around last night to Whitney. It's crazy. I haven't felt like this since I got an IV after a syncope episode and that was last April! I have been making a list of what happened the day before.... I'll type it up and post it.

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It started Thursday... I felt really bad that day so I had 2 large glasses of V8 putting an extra tsp of salt in each

All that V8 caused me to have diarrhea

So I drank many bottles of Gatorade

I took an Epson salt bath

Friday afternoon I was in a deep sleep when a loud noise woke me with a start

I had continual palpatations and tachycardia

I finally dug out a bottle of my old 5 mg bystollic

Saturday when I woke up I felt great

Feels like high vs low

I can take DEEP breaths which I had only been able to do before if I was at the ocean in high humidity

That heaviness on my chest was completely gone

Have adrenaline surges that causes peeing and hot flashes but I check my HR and it's normal

The heat covers me in a thin layer of sweat


teary eyes

CLEAR thought

Like a saline high

The only medicines I am on is Levoxyl and Florinef in the AM and a baby dose of Trazadone at night

I am very realistic. I know that any day I will wake up and it will be gone, but oh my goodness how good it feels to feel "normal" if only for a few days!

Crazy story isn't it? It's never happened before like this since 2003...

I have no idea why.

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well, I don't know if I figured it out, but it's the only thing that was different and I can breath deep again. I wonder if it's wheat or glutten or just some additive? I had potato soup out of the can that didn't bother me a bit. So hard to know anything.

I was thinking earlier, when a remission or flare for that matter hits, we go through our minds and think what did I do.... I back track over all the exact steps and yet sometimes, the answers is "I really didn't do anything. It just happen. Again. For the upteenth time.

How are YOU feeling?

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Thanks for the great website, McBlonde! I read all of the articles related to magnesium and they were helpful. I have been experimenting with reducing my magnesium supplementation this week and while it did eliminate my diarrhea, it caused a noticeable increase in my PVC's and tachycardia. I'll be mentioning this to my Cardiologist on Friday.

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  • 2 weeks later...

If I wasn't so undisciplined, I would have updated this thread each day to document! Still moving s l o w l y along. Trying to hold back the Type A personality is hard! Every day I walk a tiny bit farther. The sunshine is GREAT. My husband started out driving me around the neighborhood (One of my big issues is symptoms happening while sitting) I am up to riding for 36 minutes before POW... I feel the blood pooling in my stomach and the nausea starting. If I don't lie back immediately, I get those AWFUL orthostatic headaches with nausea. I can't push through it....and keep riding ( i just throw up and almost pass out if I push it).

My plan is to keep adding a few minutes a day in walking and riding. Question.... I am scared to eat anything other than what I talked about above... Even restricted ... I feel very full fast and sorta bloated, but then oddly enough... hungry again a few hours later... and at that point, I don't know what to eat. Any suggestions?

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  • 3 months later...

So now it's June 17, 4 months later. The "hit by a truck" fatigue that kept me in bed has not come back. I continue to walk every day....from the above 1 lap around the living room to 29 minutes outside every day. BUT, that's it. I still cannot sit up in even a recliner for more than 1 and 1/2 hours... One day I sat for 2 hours and had a relapse the next day. I still can't concentrate so I can't read!!! That's awful considering how isolating POTS is. I am really, really down. This is as good as it gets, I guess. I couldn't even go see my 80 year old dad today for Father's Day. I feel very, very sad and I can't snap out of it, no matter how hard I try. I don't understand the 2 side effects I had from Midodrine (couldn't read at all when on it & then position vertigo started)... The Midodrine worked perfectly other than those 2 side effects that make it impossible. I don't know what is "Like" Midodrine, but without the side effects. I just don't know what to do any more.

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