dawn

I had problems with my gallbladder for over 20 years. They would not see stones on ultrasound. There is a test called I think hidascan where it tells if your gallbladder is functioning and to what extent. I had a big gallbladder attack while shopping about 5 years ago. Then they found a large stone in the common bile duct. I had it removed by laproscope. Went home in the morning. I can't say it made much of difference as far as my POTS symptoms. I was hoping it would help the nausea. Dawn

Hold on to your opitimism because I have heard that the viral onset cases of POTS often improve or go away in 2 years. It hits you hard at first but just continue one step at a time. When I was young, lower body strengthening exercises helped me alot. Mayo clinic really stressed the importance of getting strong leg muscles to minimize the pooling in our legs. I was really sick when I was first diagnosed in my mid 30's then had about 10 good years. I am now disabled at age 50. I have never heard of dying in 10 years. Dr. Low at Mayo said I would probably out live him. Take it one day at a time, some days will be worse than others but, don't give up hope. God Bless Dawn

Hang in there. Symptoms can vary so much day to day. I have learned not to make plans because then I worry and worry wondering if I'll be up for it. I know the frustration you feel. Last week I think I got dressed twice. The change of seasons really has an effect on me. Don't punish yourself for being sick and unable to do what you want to do. It only makes things worse. You just have to learn to "ride the wave." I used to have a clean house, shower twice daily, make meals, drive, shop like a crazy woman. Now, I watch TV and read. I don't minimize your frustration, because believe me I have my moments. But, beating ourselves up over it is counter productive. Do what you can, when you can. Dawn

Hi John, I tried Cymbalta when it first came out. It didn't work for me, lots of tummy pain. My neurologist said if you have the hyperadrengeric type of POTS a serotonin reuptake without the norepinephrine reuptake SSRI is a better choice. Celexa is working pretty well for me. Although today is just a bad symptom day period. Did he prescribe it for neuropathy associated with diabetes? Dawn

I get the same thing. Sometimes as Lauren does I get relief if I lay down on the floor with my feet up on the couch (usually in the morning this happens). Usually if it is at night I chug a glass of cold glass of water, which helps. Dawn

Dayna, We adopted a boy who was in 3rd grade after I was diagnosed (I was working as a school nurse at the time). I knew him through school. Anyway, on the adoption physical it asks the doctor to say that you will live long enough to raise the child in his opinion. As POTS is not life threatening, he said it was not a problem. Even if you are disabled, if you don't have a life threatening illness, I wouldn't think it would be a problem. I can't imagine caring for a baby the way I feel but I don't know what your situation is. Dawn

I am impatiently waiting. I applied 2 years ago this month. Got denied twice. I have a lawyer, got one after my first denial. The law office does everything and told me not to contact social security. I am waiting for a hearing, it has been a year. Apparently my lawyer and ss are ready but they are having a hard time scheduling it. My lawyer said the most helpful thing is to get letters from your doctors explaining why you can't work. He said the judge usually just looks at them and grants it. I have asked my internist, neurologist and psychologist to write a letter. Wish you luck and patience- Dawn

Just a thought but high blood sugar can lead to excessive thirst. Have you had a fasting blood sugar checked recently? Dawn

Just curious on who is getting the influenza vaccine this year and when you are getting it.. Last year at the last minute my doctor wouldn't give me one (though I had no problem the year before). He said "with your luck you will get Guillian Barre' Syndrome." I am really feeling paranoid about getting the flu this year. My oldest son has an upper respiratory infection already. Dawn

I have taken it off and on over the years. My doctor isn't a big fan of it because long term use causes Parkinson like symptoms. I have doing well chewing papaya tablets with my meals. They are a natural digestive enzyme. Dawn

Are you sure you are not having episodes of atrial fibrillation? Sometimes they shock your heart to get that to stop. If it continues it makes you feel awful. Your heart still pumps but it goes very fast and can make you feel short of breath and tired. Usually it can be controlled with meds. If it continues you have a greater risk of throwing a blood clot. If you are having sinus tachycardia (which most of have) I can't imagine why they would shock your heartl. Don't be afraid to ask alot of questions. Dawn

Sue, I will pray for Kelly. Remember, to pray over her and ask for God's favour. Paint a picture as you pray of how you want things to be-that helps me. Next clinic appointment as you and Kelly walk in, just speak out that you are expecting a good report. God Bless Dawn

You are in my prayers. I too lost my first son, I was 6 months along. It's a hard situation but it is good that you know you are not alone, God is with us. Dawn

I saw a POTS specialist at Marshfield Clinic over a year ago and had a TTT. He was very nice. At the time he said he was moving to Milwaukee. I am pretty sure his name was Dr. Heimer. Good Luck Dawn PS He is a neurologist

I was also told no flying. Last summer I took the Amtrak from Wisconsin to Washington state. I got the disabled sleeper car (which doesn't cost that much more than coach seating) and the trip was great. It even has it's own bathroom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Your meals are included and they will even bring them to you if you want. The food is excellent. I spent alot of time laying down and got out when the train stopped and would take a little walk. They make your bed for you. I really enjoyed it. Call the Amtrak agents they are really helpful and the rates are different on somedays. Round trip for my husband and I was about 850.00 and that was a 2 night trip. Dawn

I have always had constant nausea and took Zofran. For some reason since I started on Celexa 5mg at bedtime in July my nausea is gone. It bothered my stomach for the first 2 weeks or so and since then it has stopped the nausea. I too have gastroparesis (mild) and the other thing I do is chew papaya tablets when I eat (they help with constipation too). They are a natural digestive enzyme-my sister-in-law has slow GI system and she convinced me to try them. They sell them everywhere, even Walmart. I know how miserable nausea is. I saw that someone mentioned Coke, they do sell coke syrup, I buy it at Walgreen's and have it on hand if anyone gets the stomach-flu it really is sometimes the only thing that you can keep down. Good Luck Dawn

Sonotech, I hope you are feeling better. You have alot to deal with right now. Paint a picture as you pray of how you want things to be. Stay strong for your children and know that you are loved. God Bless Dawn

Well written!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'll give mine away free for the first 30 days, if not fully satisfied you are stuck with it. Sorry no returns accepted. Dawn

Gillian, I think I would find a different doctor. I have good luck with my internist and my neurologist always asks "do you need any prescriptions?" I had 1 TTT, a second one 10 years later when my symptoms got worse. I did have another that same year at another clinic but it was my choice.to get another opinion. I wanted alot of documentation for social security disability. I refused to have the injection on that one. They are a difficult experience but always remember you are in charge and can stop the test at anytime. The last one I had at Mayo he only made me do it 10 minutes. He was very understanding. Good luck Dawn

Shingles is the chickenpox virus. The rash occurs on one side of the body and usually is very painful as it follows the nerve pathways. My sister recently had it and she had pain for 6 months. She finally took steriods and that helped. Our immunity wears off as we get older though I have seen 9 year olds with shingles. It commonly occurs when we are run down, stressed or after a tramatic event. Dawn

I had a terrible reaction to the CT contrast. They called it a vaso-vagal reaction. My heartrate went into the 200's. They brought in a crash cart. and it was awful. I was so scared, the doctor was paged and stayed beside me. It was an abdominal CT and I had to hold a fleets enema the time. I was cramping so bad. What a nightmare. I have had an MRI with contrast and had no problem at all. Dawn

It is an awful feeling. I get it so many times a day it's become "normal." It is often embarrassing. I have woke up on the grocery checkout belt. On the floor of a department store. In the car. I have become quite the homebody and hate it!!!!!!!!!!!!!! Try to tighten your legs and butt when you are shopping, it does help. Dawn

Thanks for your replies. Tanzanite, you made me start my day with a laugh. Thank you. Dawn

Hi, I am so tired of hearing "you don't look so good" from my family ALL THE TIME. Every morning, when I get up from a nap, when I'm just sitting watching TV. I mean DUH!!!!!!!!! I look like I feel. I have told them that I am aware how I look, we do have mirrors. I know I am pale and my eyes get that sunken look. I know they are just concerned but you would think they would be used to it by now. Yesterday I put on ALOT of makeup and then I heard, "you look better without makeup." I give. Anyone have similar experience and what is your response? Dawn

Hi, I also had a hysterectomy in my mid 30's, they left one ovary which worked til I was about 45. Then I used the Climara patch (estrogen) for 3 years. Did you have your estrogen level checked to see where you are at? The patch works like a charm. I don't use anything now. I started on a low dose of celexa in May and that has helped my hot flashes. I don't think menopause made much of a difference in my POTS symptoms. For me the hot flashes and night sweats are the worst. Good luck Dawn