Ernie

Hi Maxine, I totally understand your frustration. I have the same problem up here. I think I was born a century or two too early!!!!

Hi, Well I don't know if I am exercising safe but my BP is going to 200-140 when I exercise and the doctors don't seem to think anything out of it.

Thanks Sara, I always appreciate good links.

Hi, About every 6 months I asked to get a copy of my medical file which I keep home. So I am mostly up to date with my medical information.

Hi, Thanks a lot. This open the doors to much more interesting links. I like medical journals.

Hi, Good music and disk joker and partners to dance with.

Hi, Sorry I am late. I seldom read the Chit chat section. I hope your husband is doing much better now.

Hi, Wow, you really have a lot of things going on. It's nice that you will have an apartment accessible for your needs. I hope that you will be able to enjoy swimming soon.

Hi, Your numbers are normal for POTS.

Hi, Could you teach sitting on a high chair? I heard of some members who do and can manage pretty well. Also you can take your meds at a time that will help you with your teaching time. Is there a union that represent you that you can discuss your medical case?

Hi, I need from 2 Liters to 6 Liters to feel better. It depends on how severe is the episode. The inject at 500 ml per hour.

Hi Maxine, I am sorry you had such a bad experience. I guess you still have faith that you will find a good doctor. I can't wait for you to solve this tooth problem.

Hi, I am very glad you have a wonderful EP doc. They are like diamonds.

Hi, I sleep 12 hours per day.

Hi, It's hard to know without an autopsy. I am not aware of anyone in the family who lost their baby because of POTS. I know of some who can't get pregnant or who loss the baby before birth probably because POTS.

Hi, My father who had POTS and NCS used nitro.

Hi, There is only one positive thing I got from Vanderbilt. I had to see a psychiatrist to get evaluated for mental disorders. I asked her if I had anxiety when I worried about fainting when I had to stand and actually did faint. She said that in my case this is not anxiety because I actually do have the physical disorder. It's not as if I was afraid to have the fainting but never had any faints. So when we have to set our limits because we are sick we don't have anxiety. We are takihg care of ourselves. If we did not respect our limit the doctors would tell us that we make ourselves faint or be sick on purpose to get attention or all the other stupid reason they come up with. I believe your opinion is right on the dot.

Hi, I have anemia but I don't know if there is a link.

Hi Corina, That would be nice if you could come. There are lots of nice places to visit here and we would have a nice time together!

Hi, Mine was normal when I did it but that was before I became disabled.

HI, Congradulation for your hard work. You do well to be proud of yourself.

HI, I would certainly get legal representation, especially since you were honest with them when they hired you.

Hi, Beta blockers

Hi, I don't know how the researcher gets the funding but my guess is that he gets its either from the government or from other sources. It costs 1,000$ to analyse the DNA of each patient. I have my relatives stay over my place for 2-3 days when they have tests and I accompany them at all their doctors appointments and testing. Part of what I do is so thrilling. It's like living science fiction. Other times it is so stressful I would just want to drop out of it. I am glad that the doctor understands my mood swings and does not take it personally. He especially knows that if I am talking standing I will get agressive within a couple of minutes because of the adrenaline rushes so her prefers that I talk sitting. Also it avoid my fainting while talking to him! He wants another patient who is willing to faint while on the TTT connected to the new guysmo that costs 70,000$. I did not volunteer!

Hi, You are all so sweet and reliable. Masumeh. You are right. My sister's children are like my children. I feel better now about my niece's diagnosis. I think I have come to terms with it to a certain degree. Today I went to see the Research Investigator and we discussed some of the technical problems we had during the 4 postural catecholamine tests with 4 of my relatives. He will solved the problems. He was very nice with me. He told me that he really wants to find the genetic mutation and help my family find the proper treatment. I felt that he was sincere. That made me feel much better. He even told me that he bought a new piece of equipment of 70,000$ for a new test for us. He also will buy an intra cranial droppler for the TTT. So he is getting more and more involved in the research. So far there are 6 of us diagnosed in his research protocol. He wants at least 5 sick and 5 normal. But he would enjoy 25 sick and 25 healthy. The difficult part is finding healthy people in my family!!! Thanks girls for your continuous support.