chipper

From age 29 to 38 I was well because of exercise, but after exercise in a room that was too warm for me, life was never the same.

Dysautonomia and inner ear dysfunction is the hardest by far. Losing loved ones is painful, but not being able to care for them or really experience the great parts of life takes a toll. Heaven is what gets me though all of it.

Yes! Yes! Before I got better.

Great idea! I just got off of his site and begged a little. It will take all of us for him to pay attention, or someone with influence.

Yes, low on potassium and magnesium from the start. When I got better so did these too.

Is there anyone that has gotten better after swimming three times a week for two to three months? Just going to swim regularly seems like it would be exhausting. Does it make you dizzy? Thanks, Mary

I had symptoms for years but was able to function with dizziness, fatigue, nausea, and some chest pain at rest, flutters,and rapid heart. Then one day in the middle of my exercise class, I felt a shift in my body and went home with extreme fatigue and all symtoms worse and have never been the same since. Love to all!

It made me feel some better, but did not fix what is broken.

So sorry you are feeling bad. Hopefully this will be over soon. Your input is always interesting and you have taught me a lot. Thank you and feel better soon, Mary

Thank You!! Thank You!!

Thank you for this article. I always enjoy reading about anything that informs us about this disease. Thank you, Mary

Like walking on air. It is a weird feeling.

-Naomi, When I first discovered that there were so many that suffered with this illness, it was heart breaking and still is, but the support on this site is amazing. Yes, dizzy is constant. Lying for some time will usually make it much better. The riding on wave type is there, when lying down, caused by being upright too long. My dizziness is better. Constant dizzy, with no relief, was with me for sooo many years. So sorry for your suffering. I will never give up on our experts that are trying to help us. One of my sons is a scientist, that picked his life's work, because of seeing the great need for medicine through my illness. Much good can come from being sick but that does not make it any easier. Sometimes this seems like a bad dream. Hoping there will be a better day soon, With love, Mary

My autonomic condition has been very severe, beginning about 30 years ago, and it has been a battle of variable intensity since. However, basic health is very good. My recent blood work was good. I noticed that only 2 people over 60 has taken the poll. As far as living a very long life goes, I hope that my age (63) will encourage you. Meniere's is another illness that I have that is caused by dysautonomia. EDS III is the cause. My grandmother lived to be 93 and she had EDS. Just like many, I look younger.

Pooling for me is red hot burning feet when warm and standing. When cold they will be purple like. Before getting better, they were cold past my knees and red-purple all the time, but worse when standing. Hands get red and hot. When they are cold the finger temperature is 70 degree { 80 is normal}.. I've been told the stomach also.

Yes, Yes, Yes!!

This happens to me when my hands are real warm. That is usually after being slightly active, like doing laundry, or when the house gets too warm. Last week we needed the heat on and it caused a backslide, vertgio and weakness. Now I drink ice water and keep the house 65 degrees or colder. Heat on only for a short time. This can be rough stuff, but I will never give up on it. Blessing to all, Mary

Yes, thank you for posting. Sad is exactly the way I feel about so many who suffer. Thinking about you all! Love Mary

My daughter was diagnosed at age 14, after watching me lay in bed and the family talking about me dying for years. She does good now and understands this illness inside and out. When I first saw the signs of dys, it was disturbing, but I hope and pray that prevention will keep her from the worst. We have been patients together for 12 years, and are seeing Dr. Grubb in December. Blessings to you and your son, Mary

Paxil was one of the best meds for me. I started on a very low dose{5mg} and took 10mg. for about 15 years. It was the only one that I could take. I took it and got much better. Paxil was given to me after other meds{klonopin.catapres}. Tne others caused fog or severe nausea. Hope you get better soon.

They made me truly dizzy twice. That was enough for me.

It makes my heart beat hard a fast all night. Sorry you are having this passing out. HUGS

derekliz, I am excited to hear about your appointment. Birmingham is the home of my doctor that made my life so much better. Hope and pray you have a very good experience. Love to hear about new doctors. I will be looking for your post. Blessings, Mary

Better for me, was a gift from God named Dr.Cecil Coghlan, a doctor who was born to treat us. He has retired now and I am sure he still helps us in some way. I saw him for 20 years and really miss him. He knew the medication to give and when to give it. The doses were started at the smallest possible dose and eventually my body would respond. After many medications, the meds that I take are clonidine, paxil, wellbutrin, klonopin and fish oil. Looking back it seems impossible. I know we can get relief from these awful symptoms. He knew how to treat us in the 70's. Wish I could heip everyone! Thank you for asking lgail.

My all over body jerks got better as I improved. The ones on my ribs hurt. I think it was because the muscles are so tight there. Now they pop up small little jerks just when extremely tired.