chipper

Setting always normal 100/60. Standing 85/56 is the average. This is a hugh improvement!

Car sick, chest pain, sighing respirations for no reason, fatigue that made me aware that I was different and burning feet when hot.. I could not go into labor on my own and each baby was 2 to 3 weeks late. I do believe this was related. Also a vagel responce during an aminio.

Oh my!! You have won the lottery!! Even better!! Way better!! Soooo happy for you!! This is truly a dream come true for an autonomic. That is my pet name for us.Please keep us updated. Hugs & Hugs

I feel awful on those days!!

I am very happy that you are starting this group and wish I could be there. It's a long way from Kentucky!! Hope you are having one of your better days!!

So glad you saw a doctor, Hope you feel better soon.

Good luck to you!

You might need some help from a doctor. The weekness sounds extreme. Hope you feel better soon. Blessings to you!

BellaMia, So sorry you are having to sleep so much. You are so special and funny! How are you going to get your book written if you are asleep? I am praying for your recovery. Love and Prayers, Mary

Thank you for all of this information. So glad that you have answers and have such a good doctor. Your determination to get better is truly inspiring and I am looking forward to your next post.

I am dizzy in any position. Better after lying for one or more hours. Sometimes worse than others. My heart goes out to you. Hope things change for you soon. Dizzy is my life.

Very happy for you!! All of your hard work has really paid off. Thank you for sharing the good news. Enjoy!!

I have had red burning feet for many years. Standing and a warm enviroment will make the burning very bad. Neuropathy is the cause. This started when I was 21.

Clondine is the med. that I have taken for many years. It was hard for me to get started on, but was worth the effort.

Yes, this was horrible! At that time,I would keep a piece of peppermint candy, with the oil, in my mouth and it would take the edge off. Also in the shower or anytme. Now I rarely have to use it. Hope this will help. So sorry, Love Mary

It is so hard to go through all the testing without that kind of trouble. Hope all goes good !! Looking forward to your post afterward. Love, Mary

When my symptoms were the worst I thought it was inner ear and was easier to deal with. The inner ear does not hurt you, just makes you miserable. By the time I knew the real cause, my graditude was so overwhelming that getting better was all I could think about. If you can just go with it and maybe it will be less scary. Laying usually gets the relief you need. We have lots to be grateful for and someday hopefully soon a cure. This makes life harder, but all of the dinet boys and girls are here for you. Jangle's encouraging words are a blessing for today!

BellaMia, that is wonderful! Love,Mary

Rest and Paxil helped fatigue. Klonopin helped dizziness and nausea. Clonodine helped with flushing and sleep, but was extremely hard to get my body to be ok with it. Then many years later Welbutrin helped with fatigue. We are experiments, but with a good doctor it is sooo possible to get better and even symptom free. Wishing you great days ahead!! You can learn lots and lots from all of these great people!! Love, love them!! So glad you are back!!

V8, pickles, extra salt on most food, I like the afternoon soup and salt shots idea. I am trying those. I would love the intravenous saline, but that would be a bit expensive. Many years ago, if I had known what was wrong, that would have gotten me out of bed.

Cleveland clinic is an amazing place. I am glad that I went, because Dr.Fouad is a colleague of Dr. Grubb and we need all the help we can get. But saying that, Dr. Grubb has a special connection with all of us and will give you his all. These are two very special doctors. Since I had Dr. Coghlan for so many years, the TTT was all that was needed for me. All three of these doctors are precious to me. Please ask anything, anytime, Blessings, Mary

Too old, that is sad. We have a lot to give to the world. Bless Dr. Pappas, he was the doctor that actually got the appointment for me with Dr. Coghlan so many years ago. I have never met him, but feel so grateful. How do you like the center in Birmingham? I miss going to UAB.

Nauseous, face feels numb, vision changes and all over awful. This is presyncope for me.

Dr. Fouad was the doctor that I saw and she is very good with the TTT and discussing the problem. By the time I saw her, Dr.Coghlan had been treating me for about 20 years and I was on many medication when given the TTT. But her diagnosis was still autonomic nerve disease. My results were much better than before but still not good. Then I decided to see Dr. Grubb and he is now trying to help. She is a lovely person and really does listen. For diagnosis she is a wonderful doctor. Hope this will help. Fell free to ask anything.

Ballet at age 3 and exercise instructor for many years. I too was in good shape when dys. disabled me. Wish the doctors would read the life changing stories on this wonderful site. All of your stories are very touching.