AndreaC

The best advise I got about comming off my bb was "do nothing". I sympothise with you comming off is not fun. Also get lots of salt and liquids. Praying the time off your bb goes fast and symptom free.

At the beginning of the month, I was like most of you dreading Christmas and New Years, had just received news from Vandy that I'm not getting better. I was really down. My wonderful husband came home from church on Sunday and told me that he has descided that this year we are going to start a "new normal" from where I am now. I focused on the kids and what I could/can from the wheelchair and recliner. We have made the descision to stop asking God to heal me, but to accept where we are. I read the book "God Needs Me Living With Dysautonomia" by Lynn Fox Adams and was inspired. She is an inpiration to all that have dys. I spent all day in the recliner, but instead of being down, I watched my kids and laughed with them. I found that I enjoyed Christmas. I still don't feel good, and my extended family doesn't support me and my teenager is still causing problems with attitude, but I am going to enjoy the positives, even if that means being in bed, becaue it could be worse. I could still be searching for answers. I hope all of you find some hope and some thing positive for the new year and may we feel better in the new year.

I am having the same problem. It is hard to go from eating a diet of fresh fruit, raw vegetables and grilled and bake foods to foods high in salt. Unfortunately I am having trouble finding foods high in salt that are low in fat. I am getting tired of chicken broth already and it's only been a week. I am supposed to see a dieticean (sp) soon to help me find ways to get the salt without the fat. I'll let you know how it goes.

I just returned from Vandy and they told me to get 8 - 10 grams of salt per day. I put salt in everything. The good part about adding salt to everything is that I am always thirsity, so I don't have any trouble getting the extra liquids in. I can't take the salt tablets either, they make me sick, but adding extra salt to my food hasn't seemed to bother me so far. Spreading the salt out over the day seems to have helped.

I live in the Middle GA (Macon, Byron). I have a wonderful GP. He has a practice in Byron. He has one other patient with POTS besides me. He is listens to me on my good and bad days and does reasearch on his own. I also have a very good EP in Macon. His name is Dr. Oddis and is associated with The Medical Center of Central Georgia. He studied under Dr. Raj at Vanderbilt. PM me and I will send you his phone number. I know that Macon and Byron may be a little far for those that live in the Atlanta area, about a 2 hour drive, but I would recommend both of these doctors to anyone. I will only be avaible of the next two days, then I will be at Vandy for the next two weeks in a research study. I was told that I will not have internet access during this time, if anyone knows anything different let me know. Andrea

I agree with Julie and Erika, can't imagine what going through this would be like without all of you:) (((Hugs))) HAPPY THANKSGIVING and may we all have a GOOD DAY=)

Welcome to the fourm, I'm glad you found us. I agree with Maisie, I'm glad you wrote the book and I'm going to get it this weekend. I love the title:) I told a friend a few day ago that I hate having dysaustonomia, but I LOVE the blessings God has given me through it. Can't waite to get the book and start reading!

I hadn't made the connection of POTS and menstration and my symptoms getting worse, but after reading the post, I realize that is what is happening. Even if I was feeling better, I almost always end up in the bed for 4-5 days. I talked to my doctor about it and he told me to just stay on my pills and not come off. The only problem with this is that my insurance won't pay for the extra packs of pills.

I have a notebook that I keep by the recliner. I use it keep track of my symptoms and how I felt that day. I also use it to keep track of anything that I need to remember ( things to do, dates, ect). This has helped me a lot. When I go to my doctor, I just take it with me and show him how I have been doing.

I have a notebook that I keep by the recliner. I use it keep track of my symptoms and how I felt that day. I also use it to keep track of anything that I need to remember ( things to do, dates, ect). This has helped me a lot. When I go to my doctor, I just take it with me and show him how I have been doing.

I have OI and NCS also. I am pretty much bedridden also. I can only get out of the house with the help of a wheelchair and I only get out to go to the doctors. I have been this way for about three months now. I have been getting progressively worse for the last six months.I get very tachy when this happens and very dizzy. It has gotten a little better, but it used to happen a couple of times a day. When it happens I get something to drink and elevate my feet above my heart. It is worse on days that I don't get enough salt and fluids.

This happens to me all the time. The nurses usually give up on taking it and have either the doctor or another nurse try and find it, or write down the previous number. The nurses at the hospital don't like me either, I am always making their machines go off. I didn't know why this was happening untill I got my dx a few months ago.

I got the full dose and my arm is still hurting at the injection site. Mine stung pretty bad to. I wonder if I should ask my doctor about starting with a lower dose and working back up to 1cc? I am supposed to start giving them to myself next week.

Thanks for all the feedback:) I started the shots Monday, so far I can't tell a if it is helping or not. I am going to ask my GP about the sublingual (sp) next week. I don't know what the level is supposed to be, but mine was 207. The clinic at Vandy told me the best place to get it was in the hip. I am going to try it next week and If I have trouble with it, a friend of mine said that she would come by and give it to me. I just got back form Vandy two weeks ago and they increased the dosage of my medicine after being off of it for three weeks and about the time I get it back in my system, I have to come off of it to partcipate in a drug study. I have been feeling soo bad for almost a year now, and the last few months the worst. I just want to feel better and get out of the house for more than going to the doctor.

This happened to me before I got my pill box. I take propanol. I just took my next dose and an extra at night. I didn't call my doctor, but did ask him the next time I saw him what to do. He told me to take a dose when I remembered and to start back with my regular schedule. It did take a few days to build back up in my system.

A good day for me is being able to walk to the mail box and setting up for more than 15 minutes in the mornings and it is worse in the evening, and standing is out of the question unless I want to blackout. I am learning to do things with my kids that I can do either laying down or in the recliner. I have learned that if I push myself, I will pay for it the next two or three days. Glad that you are having a good day. Praying that you have many more:)

Having POTS is still new to me. This is sooo confusing:( I know that dizzyness seems to be a constat system for most, but what about being tired? I am always tired. I get up in the morning and feel like I am ready to take a nap, even after sleeping 8-10 hours a night. My doctor checked my B12 level and said that it was too low. She wants me to start B12 injections and continue them for the next 8 months. Have any of you dried B12? I am always dizzy and spend my day either laying down or in a wheel chair, I am concerned that I am going to all of a sudden have extra energy and not be able to do anything to burn it off, because I can't get up and move around. If anyone has tried B12, does it help?

Just got back form Vandy and I'm confused as ever! My doctor wantes me to participate in a study for OI, but she also changed my meds and is running extra test with my local doctor. She did give me a wheel chair, because I couldn't walk across the room without passing out and my legs and hand turning blue. Atleast I can get out of the house now. This is so frustrating. I thought goin to Vandy would give me answers, not more questions. They told me I will have to stay off my meds untill the study starts. I am so frustrated right now. I just want to feel better. Has anyone here participated in a drug study before? I am curious as to what to expect?

Hi, I'm new to the forum. I was diagnosed with NCS and POTS 8 months ago. I have been on a various meds, but I have not seen much improvement on my current meds and are sending me to Vandy to see Dr. Cherdak. I am off my meds in preparation for testing at Vandy. I am always dizzy, unless I am laying down. If I try and stand up my leggs turn blue within a few minutes and presyncope conditions kick in. I am wondering how those of you who have had to travel, handle the trip. It is 6 hours from middle GA to Vandy.