avais1

Way to GO!!!!

Just thought I'd add my two cents The only thing that works on my nausea is compazine. Zofran does absolutely nothing for me. Good luck!

Honestly, I battle this problem all of the time. What works for me is: I either read a textbook on a really boring subject, or I read the IRS tax code (sorry accountants! ). I make it about two pages, and suddenly off I go to dreamland!

Oh Ernie! Your spy comment totally cracked me up! Thanks, I needed that today ! Ava

Katherine, Great post. I, too, will soon have to choose. Thank you for posting this.

Congrats Jessica!

Hi Ernie, Thank you for doing the testing. I know it was ****, but I pray that we will learn more because of what you did. Thank you for your courage.

Wow! You are my HERO! You went through my worst nightmare, and lived to tell about it. Thank you for posting, you have given me courage!

Sorry I am late, but wanted to say "Kudos" to you for making through. I HATE those things, I get claustrophobic as well. Good Job!

HI BlackWolf! Greetings from your Minnesota neighbor! Sorry to hear you are struggling, but glad to see your name on the board again. Blessings to you, too!

Hi Baby Boy, Hang in there! The next year could be a great one, but you won't find out if you don't hang on to see it. We are with you!

I am so pleased for you, Ernie! Since today is Friday, I am sending every positive thought I can your way! Keep us posted!

Hi Ernie, I am sorry that this has happened to you. However, I am glad that you have shared your secret. That is a tough burden to bear alone, and you are among friends here. You are not alone, Ernie. With every spell, we are all right there with you. While my experience is nothing compared to yours, I know that feeling of isolation; being a "medical anomaly". I, too, have "strange things" that doctors currently cannot explain. I, too, am a benchmark. In fact, I was one of Dr. Low's research patients (this was after I saw him for the medical issues, he asked me if I would do it because I had things happen during testing that he could not explain). I know it is scary. For me, I really tortured myself with the "what if" questions, because the truth is that when I go into autonomic crisis, nobody really knows what to do with me, not even the so called experts. It's just me and my body, fighting to hang on - alone. What helped me was practicing mindfulness, and living in the current moment. I also have tried very hard to come to terms with death itself, and when I did that, the "what if" thoughts stopped. While I don't want to die either, I know that I will someday. We all will. It is a very natural part of every life cycle. The way I approach it is, since death is inevitable, why worry about it? It is guaranteed to happen, so why waste my valuable energy worrying about it? I try instead to focus on myself here and now, while I still live and breathe. I focus on my family, the people I love. Your body has been through **** Ernie, but you are still here. If your body made it through before, it can make it through again. And remember - doctors are human beings, and the only difference between them and us is simply more education. They can NEVER say with certainty when someone will die, so do not take what they say to heart (pun intended ). You can do this, Ernie, and you will come through. You are still here, in spite of the worst health, YOU ARE STILL HERE! Have faith in yourself, Ernie. We will all be here with you!

Happy B-day Sun!

Hello out there For those of you who have constipation and motility problems with your dysautonomia, are any of you on Zelnorm? If so, how has it worked for you? Thanks!

Hi Roselover, Sorry I am late on the reply. Since I got hit with POTS again 3 years ago, I have the temp swings that you are describing. There are times where I am literally freezing, and can't get enough blankets on me. My temp ranges anywhere from 97 to 99.5. On any given day, moment, etc. My docs have seen it, too. We just chalk it up to my autonomic thermostat messing up. When it goes above 100 degrees, then we know we have an infection. Sorry you have to go through it too, but just wanted you to know you are not alone. Hooray Avais

Keep your chins up. We are all with you. Extra prayers for you.

I used to really struggle with this. It does get better. I finally realized this: when I had an attack, what did Mayo really do for me? Salt and fluid, and 5 mgs of Lexapro. That's it. My heart was racing at 150 sitting down, 113 lying down, but they sent me home and said "take it easy and have a good time (I was on vacation at the time)". I don't do well with Beta Blockers, so that was out. Basically, my attacks in an ER are treated no better than the ones I have at home, in fact, sometimes the ER is worse. So the way I figure it, I can be sick ANYWHERE, the treatment will still be the same - salt, fluids, rest. As long as you have access to these three basic things, it shouldn't matter where you are. It is way too easy to get caught up in the "what if" line of thinking. All it does is drain you. I say, GO AND HAVE A GOOD TIME. Even if the worst case scenario happens, you'll make it through, as you have every day up until today. And you will continue to do so. Take care. HAVE A GOOD TIME!

Hi Lois, I am praying for you, keep going, no matter what!

Hi LaLaLisa, I am sorry it has taken me so long to reply. Don't feel too bad. I am in the same boat as MomTo Giuliana - everytime I have tried to go off of Lexapro, I get dramatically ill. I have been on it for 2 1/2 years now. My cardio said not too be too concerned, as the dose is low (5 mg). I really do think it helps me. Hang in there!

MomtoGiuliana, Thank you for posting the article. I never would have known about it had you not posted it. It was very thoughtful of you to think of us, and nice of you to post this for us. You have always been so good about keeping us updated. I appreciate your efforts.

Go Get 'em Ernie!

Hi Em, Sorry, I can't post more, I have had some POTS holes too! But know I am thinking of you. Hang in there!

Hi Rachel, I had a "spell" exactly as you described earlier today. I could have written your e-mail word for word. I have suffered from this off and on for years. I used to use compazine, but I can't tolerate it anymore. I am also unlucky in that Zofran does absolutely nothing for me. The only thing that works for me is to lie still, sip salty broth, and pray to God it passes. Ginger tea has helped, and for some reason, the warmness of broth or tea, seems to help my motility (not too hot, just warm). I feel for you. I had to pull off the freeway and put my car's A/C on me full blast, while I cranked my seat all the way back. I unbuckled my pants, and undid my bra, and prayed nobody would see me ! Take care, I am thinking of you!

Hi Nina, Sorry I haven't responded sooner. I have been "down in the hole" myself. Hang in there, I am thinking of you. We'll crawl out again sooner rather than later. Take care.