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I am not sure if this will help but you might find a doctor in a near by state using Dinets phyicans finder at: http:www.dinet.org/physicians.htm Hope that helps! I know what it like I live in Iowa I had to fly to Cleveland to find a good doctor! I hope you are able to find a doctor soon!

I just wanted to drop a line, and say I understand what you are going though. I wake up in the middle of the night sometimes with the room spinning, or like a falling feeling, at the same time my heart will be racing. My doctor was increase the beta as much as they can, but they need to wacth me for my b/p going to low. Have they tried a different Beta, some a time relased while others are not. I would talk to your doctor and let him/her know whats going on, and that you are worried about it. See if there are any other options. Hopfully this will pass for you. Hang in there!

I am so happy for you! So the 28th is the big day? You just need to Teri not to leave, as you may have a replacement!

I have had problems all long with sleeping. I talked to my doctor about it and he said it can be a problem caused by POTS, I am not sure if that is ture, but he tried sleep meds, and I have had a hard time finding one that works for me. Have you talked to you doctor? I wish you the best, hope you start sleeping again soon!

Sorry to here about everything. I hope you are able to find whats going to work for you. I am still learning to deal with the fact I have a home health care worker once a week. This week twice, but I just want to do everything myself, and I feel like I am losing control, I can't even begain to know what it would feel like for you. Just hang in there!!!! I am thinking about you! Amy

Happy B-day! Amy

I just wanted to say hang in there! Also you can write dpwn all your readings and then take them to your doctor and tlak to them about it. It might help them know whats going on. Just a thought! Hope things start getting better for you!

Ok, today I had a really bad migraine/ headache. So I called the doctors office to see if I could get in for a pain shot. They said they would check with the doctor and get back to me. After 3 hours of waiting, and the pain worse, I try calling back. This time I got someone else, the last person never gave the chart to the doctor. Finally about 20 mins. Later they call back and said to come right up, and they could give me the shot. So I headed off for the shot, I ended up waiting 30 mins. In the waiting room as there where so busy. Well I finally got the shot. When I got home I started feeling out of it, but I think it was due to my B/P being so low all day. We around 4:00 pm my home health care working came out to check the PICC, I am adding anoher day IV saline, to help with the b/p, so that?s why she was out. Anyways, I hooked up the I IV; I feel asleep and woke up later when it was done. Well I unhooked from the IV, and got up to go to the bathroom. On the way back to bed I felt like the side of me was all wet. Well??. The cap on the on line of the PICC had come off, and due to how tired I was I forgot to clamp it off too, so now I had a blood path all over my house, and blood on me. So as you can image I got suck cleaning. Well I am back off to bed, hopfully this time with better luck! Good night!

I use it, I get , shot weekly, and is is helping slowly. I been getting the injections since April.

OK do you ever get down, when you find out what others your age are doing. A friend of mine hooked me up with myspace two weeks ago, I started looking up some of my old friends, you know where you can go to you high school and see all your old friends....... Ok my class is doing really good, there 3-4 laywers, 6-7 doctors, ect. I am feeling like a looser here. As I am typing this up, I am hooked to o2, and IV pole, as I am having a bad day. I guess I should feel good I can still get to the computer on bad days! Anyways do you ever feel like this???

Congrats!!! Let us know how it goes once he is home!

Hello All! Don?t forget The T-shirts are now on Sale! With the holidays coming soon, they will not last long! When shopping this holiday season, don't forget that a dinet t-shirt would make a great gift. For those of you that have already purchased a T-shirt thank you for support to dinet. Wishing you and your family a Happy Holidays!

Hello, I just wanted to say welcome. Here is a few place to find more information regarding Dysautonia. http://dinet.org/what_helps.htm http://dinet.org/physicians.htm http://dinet.org/what_to_avoid.htm How this help alittle!

Sorry to hear. Are they starting the kids on meds? It makes me worry about my son. Please keep up posted on how things are going!

Dizzy, I am glad to hear about yout appointment! I am glad you found a great doctor, plus he will to work with the LLMD thats great! Amy

I just wanted to drop a line and say welcome! Amy

I am so happy for you! That's great news!

Thanks Melissa for all the pointers. I am going to use them. It's nice to know that it will get easier. Right now its to be alot. Today I did ok. I got the pump started, and got the IVs ok. So at least I was able to do it all on my own. Yeah! Thanks again! Amy

Sorry to hear about the infection, but glad you are doing better. I hope you start feeling better soon!

Melissa, I have a Pump, they sent me home with. Question for you I have a red and pruple end. ( I have a power PICC) They said to trade off using them, IF I forget which one I used last is it the end of the world. I have brain fog so bad I forgot which I flushed with heparin while I when to get more achocol pads to clean the tips so I had to do both again as I couldn't remeber. ( one of those days) I am hoping it will get easier as time goes on!

Dizzy, I am glad you had a good apointment with Dr. Fouad. I really got alot out of my apointment last year when I was there. The blood vo lume test in Cleveland help alot for me with my doctor treating my illness. I hope when you get the results they can find a treatment that will help you! Talk to you later!

I am hoping this will really help! I can't beleive it, I am doing all the IV's at home. So I am learning all about hope to run the machine, to making sure the lines are clean. ( I hope I don't mess it up) I had a home health care worker come out today, she was really nice! So thats good. They are coming out once a week, to clean and redress the PICC. If nothing else I am learnign alot!

Hello All! T-shirts are now on sale! If you would like to buy one here is the web address http://www.dinet.org/tshirts.htm Happy Buying!

Hello! I wanted to drop a line and say "Welcome" I am glad you found the site! I hope you will be able to find many answers and support here! Hang in there!

Erin, Sorry to hear about you last few vists. Have you talked to your family doctor? It's really sad how badly things have gotten in ER's. I hope you start feeling better soon!