chipper

What a doctor nightmare!!! Your friends are giving you good advice. You can get better!!! Get a great doctor who cares and will treat you with respect. I read your profile and my heart goes out to you. I guess you can call me a veteran of sorts. This has been with me in the worst way for too many years. Always here to help, Mary

Bless you Dale. You can get better. You have the same type that I have and many others on this site. Are you sensitive to medication? Do you have hypermobility?

It is time for a very good documentary about this disease!!!! There are so many channels and I'm sure that somebody would love to have something different to talk about. Dr.Grubb with Dr. Oz!!!!

It is Dysautonomia. I don't get along with gravity. The problem comes from the medulla in the brain. Doctors understand this! Family members are different, I just tell them there is a problem with my blood pressure, of course some of them say it is her nerves, and they mean I am not sick.

Not life threatening! This is a silly thing to say if you are truly informed about this disease. We know of the drug sensitivity. this can cause a lethal outcome. Suicide is something that many of us have thought about and need each other for support. I have been told about many and this has come from a doctor who deals with vertigo. Prayer's to all, Mary

Hi there from the the US!!!!! Welcome!!!! I have known two people from Austria and they were so much like you seem. Good with life!!! Going with the flow and happy. You can teach many of us to deal with this disease in a slow patient way of living and thinking. Life is too fast paced and that has brought out many of us dysautonomia suffers. It forces us to take time to smell the roses. In my case, in the beginning, was watch the spring leaves start to bud and grow very slowly over about six weeks. This was my first time with paralyzing nausea and laying and watching the leaves was my entertainment and looking back was a blessing. I hope dinet is a place that you will enjoy being a part of. I am new and love these autonomic sisters and brothers. Take care and bessings to you, Mary

This is very interesting. She has always seemed to be somewhat hypervigilant. At times, fidgeting constantly, with variable concentration, she had late 90s psychiatrists screaming ADD! ADD! She has difficulty with SNRIs, maybe pointing to excess norepinephrine? Since reaching adulthood, caffeine actually seems to have either no effect or a reaction opposite of what is expected. She has taken caffeine pills in an attempt to have more energy, but shortly after, she must sleep for a few hours. Whether this shows the little effect of caffeine relative to how very tired she always is or if it is a paradoxical reaction, we do not know. At times, in very noisy crowds, she feels like you do. But when she leaves, it is as if she can still hear the noise of the crowd. She will cover her ears, even though she knows the sound comes from the inside. She says it just feels like she should. Another reason that her situation is rather confusing, she actually does not have a hyperadrenergic form of POTS. She has what is believed to be unipolar depression. However, in a very new publication, I recently read a definition of mania: fast brain activity resulting in fast speech and actions. But, of course, like everywhere else, nothing was mentioned about the relationship between the speed of brain activity vs. perception of the speed of the atmosphere.

Oh my!! This is a hard one. My heart goes out to you and you son. Is home schooling a possibility until he gets better? My daughter had a very difficult time at school. Her symptoms did not seem bad enough for home school, but knowing what I now know, I would have managed many things different. Blessings, Mary

Good for you!!!!! It's so great that you have a diagnoses and now a treatment plan!!!! Please keep us up to date on your progress. Bless you, Mary

Brain feels fast and everything is slow around her. She feels like she must slow her speech so she won't be talking so fast that she cannot be understood. "She" is my daughter and she also has dys. My daughter feels like she could watch a movie on fast forward and be more comfortable. When driving she felt like she was going 5 miles per hour and in reality was going 50. This is an experience that stayed with her an hour this time. Klonipin does not help and there is no anxiety. There doesn't seem to be any kind of trigger. Has anyone experienced , or heard of, anything like this?

Vertigo was my first symptom and nausea the second and many more followed. The doctors thought it was an inner ear problem, but it was a very costly missed diagnosis. I am so sorry you are missing out on you sport. My love outside of my family was teaching exercise to a dance beat!! It was so much fun!! I still dream of getting back to exercise. I hope and pray that you get back very soon. I wish that nobody would ever have to go through this dys. I hope the dramamine gets rid of the vertigo. Take care, Mary

My daughter has this illness and was diagnosed when she was 14. Dr. Coglan saw her and the ttt made her start to pass out at 4 minutes. I thought that knowing for sure would help explain the symptoms she was having. I don't want her to ever get housebound and then bedridden for sooo many years like her Mom . I wish I had known about resting and avoiding heat etc. We both will be seeing Dr. Grubb next week. It is of course not your fault, but we can't help thinking about it. Finding a diagnoses early is a blessing. Hope you are having one of your better days. Mary

You are at the right place!!! Dinet is sooo supportive. The people are caring and even sometimes funny. I am pretty new since my back slide and have been uplifted and informed. I love all of these dys. suffers. They flock together when someone has a problem of any kind. Bless you, Mary

She is a very nice lady and you could not have a better doctor for the TTT test. My experience was good. Feel free to ask me any questions. Mary

Sometimes a new prescription can be bad. This so miserable, I hope you can get rid of this soon!!

Just missing a dose of paxil, will bring these zaps that start in the head and go down the spine, and walking makes this happen to me. Hope your's ends real soon!!!!!!!!!

Ramakentesh, The names have changed over the years. The type that I have has been called Autonomic Nerve Disease, Hyperadrenergic Dysautonomia and Hyperadrenergic OI and POTS. There has been so many symptoms. Dizziness, nausea, fast pulse, flushing, cold hands, lots of pooling, cold feet and past knees very cold, when too warm feet very red and hot, the dizziness has been so bad that I wake in the night, with the room spining and I can not walk, it feels like something is pushing me back if I try to walk. The pooling, and coldness has improved, but I still wake in the night and can't walk if I have been too active or standing more than my body will put up with. Still floating,rocking,riding the waves everyday. Soon I hope to hear what the newest name or names might be . Mary

Hi Rene, I have had a lot of experience with Clondine. Starting as low as possible was the only way I could get on it. I need an increase now, but am waiting to see Dr.Grubb since Dr. Coglan has retired. I was much better a few years ago. It really does help if you have the hyperadrenergic type, and it helps with sleep. My heart goes out to you. A prayer for you tonight. Mary

What a good question!! Exercise has been the end to dizziness for me but also my end of any kind of normal life. This is because I pushed too much in a warm room. I thought that I was cured because I was in the best shape. My resting heart rate was 45, and at that time the inner ear was the dx. Twelve years later in 1990 my dx was dys. Hope someone can answer your question. For me, damage had to have been done. I still struggle with it, exercising twice a week for 5 miniutes makes me sick. Mary

I am so excited for you! This kind of life we live is so frustrating. Please let us know all about your experience. My appointment with him is July 22 at 10:00 and my daughter will see him at 11:30. I wonder if anybody on this sight will be there. Have a good trip, Mary