Lemons2lemonade

Curiosity strikes again

I would try to explain to her the positive effects of illness--which isn't easy. Maybe let her know that its a reason not to take life for granted and that is why illness exists, so that we can appreciate what we do have. And its a reason to do good in school because if she ever does get sick, then she will have something to fall back on. I think its even more important that she doesn't feel sorry for you, but instead admires you for your strength. I would talk to her about what is causing her to hate school etc. and find a way to help her work through those things. I think this is one of those times that you are going to have to be strong for her.

Mine is the same as puppylove, it happened when i was on midodrine and stopped when i got off of it. My guess would be that low hr is compensating for your high bp or vice versa. When it happened to me, i called 911 and the emts said the ekg was upside down, like one of the lines was backwards. They didn't give the slip to the e.r. so i guess we'll never know what was happening. But the good news is that your bp was high--if it weren't you wouldn't have remained conscious. But at the same time, having a high bp isn't good either. Have you tried florinef? I hated the midodrine and found that florinef works much better for me

Gosh, this post really hits home with me. Before i got sick, i was going to school for my bachelor's in business and working 35 hours a week at a restaurant. I saw a lot of people come and go. And man let me tell you, people really don't have manners. I mean some people do, but it is painfully remarkable how many don't. Some people are just so ignorant! What i've realized though, is that the people who behave this way are usually uncomfortable with themselves--like they are the type of people who are miserable/stressed in their own lives and have no outlet so they take it out on others via rudeness( julie, that woman was probably jealous that she couldn't park there and had to wait). The other type are the people who are so self conscious that they judge others in the same manner they think everyone else is judging them . What was even more surprising to me was that the days i really got all dolled up and looked nice, my tips went down, and i was treated differently because people thought i was a floozie--when i wore just plain make up and a pony tail i made much more. Opposite of what you would think huh? Another great story is that i got a $300 dollar tip one time. There were people i worked with who thought that they deserved it more than i did and were more than willing to communicate this. (are you kidding me?!?!) Either way, i am really proud of you julie and nina for standing up for yourselves. It's not easy. And maybe next time, those people will think before they shoot off their mouths.

Thank you maggie, not sure if i'm ready to show them off yet

p.s i am going to mayo in february, thanks for the warning about dr. g

I am so happy for you, that is such good news! So when you were talking about ivig, did he say he would only use it on the 5 autoimmune patients or the 500 to 600 other patients?

Sue, I also became much more creative, it was weird, all of a sudden i was able to draw really well.

I was thinking about this the other day, how much different i am than i used to be. Wondering if there is any correlation as far as sympathetic, parasympathetic functions in personality types prior to disease onset.

I found a website for a jung/meyers briggs test: http://www.humanmetrics.com/cgi-win/jtypes2.asp

I was ENFP

• moderately expressed extravert
  
• distinctively expressed intuitive personality
  
• moderately expressed feeling personality
  
• moderately expressed perceiving personality
  

I want a life alert that is connected to a pulse watch. So if my pulse is over 200 or under 45 it will call 911. How awesome would that be? Maybe we can sell this idea and make millions to fund pots research

Yes mine has been like that too, jenglynn. I wonder why it does that? i.e. increase in severity during each flare and then gets better until it gets to the point where we all are now. Its like we are repairing ourselves each time, and then the damage gets to the point where we either can't repair it or, it takes years to repair... My first episode lasted 2 days and i thought i just had the flu--felt weird, kinda tired. The second one lasted 6 months and was more confusion oriented. The last one brought in the heart rate, near fainting, etc, and has been around for almost a year and a half now.

no, i haven't!

Hey puppylove, it could be the midodrine. I couldn't tolerate it but dani is right they arent going to help you much in the e.r. is it coming down now? Also taking sedatives might not be a good idea because you already had the tylenol pm unless its by Drs orders

When you can pinpoint your heart rate without even checking your pulse.. eh I'm running about 130

Puppylove, I get that too and its different than that. It feels like I am out hovering just above my body, or that things aren't real or that I am dreaming. Like literally out of body.

You could be reacting to the tylenol. But mine hits me like a wall and I feel it come over my whole body instantly, like someone just poured cold water over me. Then the hr flies up, the faint fighting begins, sometimes there's sweats or palpitations, and after about five minutes I shake like a leaf. During these my bp skyrockets and I feel like I'm going to die right there. That is essentially the nature of my pots attacks. Though, after the first one my pulse and bp were up for about 3hrs. It took a sedative to bring me down.

I agree with rama, I think that this happens because our "excitement" hormones are already high and the stress of these stimuli push us over the threshold.

This is very interesting!

Do people from Asian origins get this? Maybe they are treating people differently?

The fainting response as I have read is due to loss of oxygen or glucose to the brain. Whatever is causing that is trivial, probably loss of blood pressure, who knows, but either way, the laying flat or fainting restores the supply of glucose or oxygen or whatever is missing, and the vagus nerve is what causes the body to turn off its consciousness during such circumstances. Maybe this is wrong though, the human body has infinite feedback pathways in the nervous system. I once heard it explained that in modern medicine we are better plumbers (heart an vessels) than electricians (brain and nervous system).

This is how.my pots started, wondering if it happens to anyone else?

which one is she going to?

Good for you! Who cares what other people think? Maybe you could write something funny on your helmet or like pots awareness or something?

That is a good question sue!

I had problems in the past but always seemed to get over it. Then, it happened while I was at work. I didn't get much sleep the night before and hadn't been feeling good all day. I kept getting these rushes which I now know were adrenaline, I walked around the corner made eye contact with my boss and lost it. Haven't been the same since.