SunsetParadise49

I got a response from the dr. I emailed who appears on the local news....see what you think of her reply.... Dear Gwendolyn, Thank you for your e-mail to me. I am familiar with the medical condition dysautonomia, as I actually have a family member who has been diagnosed with it. I will take your suggestion to make the public more aware of it under consideration. I sincerely hope that you continue to stay active in your advocacy efforts in this work. I am certain that there are many people who can benefit from this information and congratulate you on the work that you are already doing. Best wishes! Wanda D M.D. What gets me is, if she has a family member with Dysaut. why wouldn't she have already done something about it? Now, I don't know how bad her family member has it, so maybe Dysaut. doesn't effect his/her life as much as it does others. Hopefully she will consider it though!

Yep, I'm going to have him include DYNA and DINET. He also just emailed me and said that he want to interview my mom from her perspective of things.

I hope this is the right place to post this. Last night I emailed a friend who goes to our church who happens to be a newspaper columnist and he said he would be thrilled to interview me and help raise awareness on Dysautonomia! I also emailed a doctor who appears on our local news at least once a week and told her about Dysautonomia...so maybe I'll have even more success raising awareness. I'm so happy! Gwendolyn

(((hugs)))

I just got my first pair as well. I have a question: The brand is JUZO, and I'm just wondering something. If you are used to wearing stockings already, were the compression stockings a big change for you? I danced since I was 3 years old so lived almost my entire life in dance stockings which I feel are just the way my compression stockings feel. I got mine in the hospital while I was there and the guy who delivered them did measure one area of my leg then showed me and put them on me. To me they aren't that tight. Yes, they are hard to put them on. Yesterday was my first day putting them on by myself and it took me 35 minutes! But I still don't think they are very tight. I'm asking about the tightness because I've heard people say how tight they are and I just don't feel that way. They stay up so I don't think they are too big...but again it's my first pair. I heard the nurse on the phone while ordering them saying that I wear a size 7 shoe. What do you think?

Thank you everyone for your replies. You all explained it a lot better!!

I thought I understood Dysautonomia and all of the types. But now I am extremely confused. Yesterday, I had a follow up with my family doctor, I was dizzy and laying down on the table when he came in the room. My pulse was fast, like 107 I believe but it could have been faster. My bp wasn't all that bad for me. But, when I told him how extremely fatigued I've been and how badly my insomnia has been the past few nights he said I think there's something going on. Had an EKG done and my pulse was even higher then it was 10 minutes previously. He just didn't like the way I looked and said he didn't want me falling on my face so he was going to admit me into the hospital!!! I was so shocked. I went in for a follow up, simply tell him about the fatigue and insomnia and the next thing I know I'm in the admitting office! The internal medicine doctor saw me and asked if I had NCS. I told him that I do but that I also have POTS. He said you can't have both. With POTS your bp doesn't drop when you stand, that's NCS. Only your heart rate rises with POTS. I know the difference between the two but am confused by what he means! When I stand I get dizzy, black out, and can pass out if I don't sit down. My heart rate increases when I stand up and takes forever to calm down. Last night I also had the worst chest tightness that I have ever had. I was crying it hurt so bad. My mom said my eyes looked very glossy and my face was pink. My body felt so hot and it was hard to breathe with all of the tightness. They eventually gave me a spray of nitroglycerin (sp?) and with in a few minutes felt so much relief. The internal medicine doctor told me that I have the equivalent pain of a heart attack patient! Can you have both POTS and NCS? What do you think he was talking about? My mom thinks he meant that I have the full blown syndrome...but I'm not sure what that means. I'm so confused! I was discharged two hours ago, increased my Midodrine to 10mg to 3 times a day and he said we may still even increase that since I can tolerate the tingliness better then other patients. ~Gwen

I prefer Gatorade!

Most defiantly. . . Especially if the lights are really bright, flickering/flashing! When lights bother me, I get really out of it and just kind of stare into space. I also usually do not hear people talking to me.

Wow! Thanks for letting us know!

How neat!!! I love the picture!!!

Feel better soon Nina!

Congratulations Lauren!!! I applied in April, so I should be hearing from them by July!! I'm so happy for you!!!

Is she a member of www.DYNAkids.org? They are a fantastic site for children, teens and young adults who have Dysautonomia. DYNA has helped me so much. I love DINET as well, but in DYNA we're all basically the same age!

I'm so glad that you are home Melissa!!!!!

Thanks Tessa. . . I'll keep that in mind!!

Aren't Yaz and Yasmin two different kinds of birth control though? I looked it up and it appears they are two different things but I could just be reading things wrong.

Currently I take Nortrel 7/7/7 (which is the generic form of Ortho 7/7/7) and I do fine with it. Nortrel is my second bc that I've tried, the first was Ortho TriCyclen (sp?) and I felt great Dysaut. wise but after a few months of being on it my periods started coming at the wrong times and I even got it twice one month so I was put on something else.

Yep! 4 inches!! Something defiantly is going on!

Hi Everyone, I had a family doctor appointment today because I've been having a lot of problems lately. One being that my nails are getting thin and are basically see through, and they are peeling at odd places. Another reason being that I've been getting lumps. . . most are located in my armpits (I've also kept track of when I get them to see if it has anything to do with my period cycle but it does not) and last week I had a lump about one or two inches beneath my chin that was the size of a ping pong ball. The lumps really hurt and last a few days and quickly disappear then. I've also been shrinking. I used to be the same height as my mom which was 5'3" and now I am 4'11"! My doctor said that he really thinks it is my Florinef. For now he wants me to only take it once a day and defiantly see my Dysaut. doctor which I made the appointment a few minutes ago. (My Dysaut. doctor had me on 0.1mg and to take it twice a day.) He also ordered a bone density test and lots of blood work. What I'm wondering is if any of you who have been on Florinef for at least 6 months OR longer have any of these issues as well. Thanks! Gwen Edit: Oh, forgot something about the nails. They also are starting to bend down and also going a little bit flat - not "round" like they should be (guess that's the best way to describe it) It's kind of gross looking LOL.

Happy Birthday, Amy!!!!!!!!

Melanie, thank you for the update. Melissa, I am keeping you in my thoughts and prayers. I hope that your surgery went smoothly and that you have a quick recovery. Thinking of you, Gwendolyn

((hugs)) I have no advice but I hope you and your doctors can figure something out!

I can feel it throughout my whole body at times. It gets especially annoying when I'm trying to fall asleep!

Good Luck!! Please let us know how it goes!