Rachel

Sue, That is wonderful news! I hope that the job goes well. Have fun with it! Rachel

Thanks for the update, Karen. We miss you, Melissa. I'm sorry you have to go through all of this. Rest well. Rachel

Stacey, My appointments with my EP often included an EKG and/or blood work. They always included orthostatics. The doctor would also feel my neck and tummy, check my heartrate, and get caught up on new symptoms/changes in symptoms. Then we'd come up with a new treatment or continue with the same treatment if it was working (that only happened once!). Ask lots of questions and give lots of info. Good luck. I hope all goes well. Rachel

When I was in the process of applying for SSDI and appealing, I had a nurse come over to my house once a week and take orthostatics. It was part of a visiting nurse program that a nearby medical clinic did. If there isn't a nurse that can come to your house, perhaps you could go to a medical center regularly so that they can "officially" track your health. The nurse that came over to my house would check my pulse and bp after lying down for 15 minutes. Then I would stand up and she'd check my pulse and bp every minute or two for a as long as I could remain standing (sometimes 3 minutes, sometimes 10). She also kept track of how I was doing physically and how POTS affected my daily life. All of this was written down in my medical records and was then copied and sent to the judge. You can also keep a daily or weekly journal of your symptoms, bp, and hr. This probably won't carry as much weight as records that come from a medical center, but it can't hurt to have more evidence. I think people are usually off all meds when they redo a ttt since they can change your hr and bp. You wouldn't want to have a false negative test. Best of luck with everything. Rachel

My doctor prescribed a sleep aid once but I couldn't continue to take it. It had the opposite effect on me and I actually got even less sleep. I can't remember what the med was, though. Rachel

Thanks for sharing. And congratulations! That's great that you're feeling better after quitting and even able to reduce your med load! I was glad to read your info. Someone was joking with me last week and saying that I need to take up smoking. It is good to hear the truth about smoking! Rachel

I have not been to Dr. Grubb's office, but I just wanted to say good luck. I hope that your appointment goes well and exceeds your expectations. Rachel

Thanks for the update, Emily! It's good to hear some news about Sunfish. Melissa, I hope and pray you continue to get better. I'm wishing you out of the hospital and back in your own fishbowl soon. Take care and sleep well! Rachel

Congratulations! I'm so happy for you. I'm sure it feels good to have someone "officially" agree that you are disabled and need help.

Thanks so much for the update, Emily. We appreciate the time you take to keep us informed. And thanks for sharing the hospital address. Melissa, I'm continuing to pray for you and your recovery. Rachel

I too was in excellent condition when my POTS hit me hard. I was a year round swimmer. I swam 3 or more miles each day, 5 days a week. Plus, I did weight training 3 days a week. It was quite a shock to all of a sudden be weak and fatigued! I've always been pale skinned.

Interesting! I've never had a doctor ask me this, but I would be interested to find out how it's connected to dysautonomia. I have noticed that the skin on my fingers wrinkles up much more quickly now than in used to when I was little. The pads of my fingers also get wrinkled up sometimes even if my hands aren't wet. I just figured I was getting "old!" But maybe I have an excuse. Rachel

I'm so glad to hear that the doctors have found a cause for Melissa's symptoms. Hope the meds help quickly. I will continue to pray for Melissa and for wisdom for her doctors.

Thanks for the update, Emily. Melissa, I'll be praying for you. I'm so sorry you have to go through all of this. Rachel

Dear TearsInMySoul, I am so sorry that you have to go through the pain of losing another baby in a miscarriage. My husband and I have been through that a few times too. It hurts so much. I will be praying for you and your family. Lots of love, Rachel

Dear Rita, I'm so sorry that your pots flared up so badly. Hope you find your doctors visit this afternoon very helpful. And I hope you get back to baseline quickly. Take Care, Rachel

Maxine, I'm so sorry to hear that your mother is in the hospital again. I hope she is given knowlegeable doctors and nurses who can help get things figured out quickly. And I hope your CT scan goes well on the 15th. Hang in there and take care, Rachel

Thanks for the update, Lauren. Glad to hear you are creeping back up to baseline. I hope you continue to find improvement in your symptoms. Rachel

Thanks for letting us know, Michelle. Dear Melissa, I'm so sorry you have to go through this again. And so soon after the last infection. You will be in my thoughts and prayers. Get well soon. Rachel

Cardiactec, Yes, I know what you mean about feeling like you're being treated as if you were a circus act. I have had a few nurses get too excited about having me as their patient. They think it is all so "interesting!" And it gets harder when they start giving advice. I know they are just intrigued and that they mean well. But this is something I've been dealing with most of my life. Dysautonomia not the most exciting thing in my life and you can't just "fix it" in ten minutes. I try to put myself in their shoes and understand where they're coming from. But, yes, it is hard and I get tired of the questions. Sorry that you're having to deal with this. Rachel

Dear Susie, I hope that your hearing goes well. And I hope that your attorney is a big help to you as you fight this battle. I was waiting for my hearing in the fall of 2005 (only a few months after I requested a hearing), but then I got a letter in the mail from the judge saying that my case was approved. He said there was enough information in my file to make a decision without holding the hearing. So, who knows - maybe you'll get a good judge like that! Since I didn't quite get to the hearing process, I don't really have any advice. But here's something that you might find helpful: http://groups.yahoo.com/group/Disinissues/ Disinissues is a group that gives advice for Disibality Insurance Issues. It is done through email, not on a forum. You might want to check it out. It is a helpful way to get answers and advice to your questions. And it all comes to your email inbox! Don't give up hope or patience as you wait for the hearing. I wish you a good judge's decision! Rachel

Dear Gayla, I'll be praying for you. I hope that all goes well on Wednesday and that you recover quickly. Love, Rachel

Julie, Yes, my extremities turn purple (because of blood pooling). This is common with POTS. And I've had the pulseox (the finger clip) stop registering too. My nurse wasn't sure what to think! I was her first POTS case and so she was learning a lot! I think the pulseox stops registering because the blood just stops flowing well and so it can no longer detect the pulse. I'm glad that the florinef seems to be helping you. Hope your doctor can continue to find some good treatments for you. Rachel

Cindy, I'm glad you have joined us here on the DINET forum. :-) I hope that you can find some of the answers, information, and support you need. When you go back to the cardiologist, I would definitely ask him to check your pulse and blood pressure after you have been lying down for 10 or 15 minutes. Then stand up (but don't walk around) and have him check your pulse and blood pressure again after 10 or 15 minutes. This will give you a clearer picture than you had at the neurologist's office when he checked it after only 30 seconds. Like Persephone said, many people don't have an immediate change in pulse. But a pulse that goes up 30bpm after 10 minutes is still POTS. Hope your visit goes well and that the cardiologist can help you. Let us know how it goes. Rachel

Dear DINET friends, MERRY CHRISTMAS! I hope that you can all enjoy the holidays. And I pray that 2007 will bring good health your way! Love, Rachel