HopeSprings

Thanks for the responses. I cannot believe there aren't more Dr's in the city. Stace and Waterbaby-- Are Dr's Boatman and Dr. Pecker Dr's who will go beyond just saying "yep it's POTS -load up on salt, water and take Florinef"? It's hard for me to get into the city because of my condition and because I have two small children, so it's only worth going to see someone with a very good understanding of this condition. I would really like to find someone who will go beyond the tilt test and look deeper. I just don't want to be dissapointed once again. Thanks, Naomi

I have seen TONS of Dr's and none have helped me yet. Does anyone know of a really GOOD Dysautonomia Dr. in NYC or NJ? Naomi

Hi and congratulations! Ok, hopefully this doesn't happen to you, but I had an absolutely 100% miserable time with my last pregnancy. It was bad from the 1st trimester all the way up until and after the delivery. I was extrememly dizzy the whole time. I could barely see straight. My heart was racing all the time, but more so the first trimester, then was somewhat better. I was intensely nauseous the entire first trimester and absolutely STARVED - no matter how much I ate (and I ate A LOT) I could not get rid of that deeply hungry feeling. I also had to care for my 4 year old son and go through the summer like this. I could not take it anymore towards the end-- so I asked to be induced early. I was due around Sept. 6th -- I was induced the night of August 26th, had the baby the 27th. I saw a high risk OBGYN the first trimester, then switched to a regular OB and was monitored by the high risk OB's on the side. I have to say though, as much as I tried to educate the Dr's about POTS, they didn't really get it. I had a consult with the anesthesiologist prior the delivery date to make them aware of what the epidural and different medications might do to me because of the POTS. In the end, the actual delivery was fine -- I did ok with all the pushing, the Pitocin and with the epidural. I have to say in retrospect, I regret the early induction-- I feel guilty for not letting my daughter come out when SHE was ready. If I could go back and do it again I would ask for help with my son, so that I could just rest at the end and wait for my daughter's arrival. It was just too hard to be THAT sick and care for the four year old. Anyway my daughter came out just fine -- she is now 14 months old and doing well. I will never have another baby though -- I can never go through that again. My most important advice to you is GET HELP from friends or family if you can. Pregnancy is demanding enough, let alone having a serious illness on top of it. You'll need to rest. Good luck.

LThoms- What about taking a salt tablet before bed? Would that help us hold on to water through the night? I am coming to the conclusion you just wrote about-- I am up peeing during the night, my blood pressure is very low in the morning and I feel drunk upon wakening... as soon as I get up the racing heart and sternum pressure begin. What you said makes perfect sense.

Be careful with the Klonopin/Ativan -- any of the benzodiazepines. I was on a very low dose of Klonopin a several times a week for only 6 months and became very physically addicted to it. The withdrawal was an absolute nightmare and took me years to really get over --in fact I still have lingering damage from this experience. I understand there are times when people have to take it-- just be sooo sooo careful and never quit cold turkey.

I would hope this test will be available to Dr's AND covered by insurance once the findings are more concrete? Wouldn't it be amazing if there was finally a blood test to diagnose this? I am desperate to know WHAT has been causing this!

I asked my Doctor for this test and he agreed. I have had the prescription for like 6 months and haven't had it done yet. I read somewhere that the results of this test can indicate whether or not you have Vagus Nerve damage. Is that true? I don't know if I should get it done because I don't think I have symptoms of gastroparesis. My GI symptoms are extreme pressure in the sternum area especially after eating or drinking and dizziness after eating. I don't have the nausea or anything like that. It's hard for me to go get medical tests because I have two small children and getting a babysitter is difficult, so it has to be really worth it. Thoughts? Naomi