caroline

Naomi, I don't have POTS so i can't answer your question about feeling tachy. All i can say is that binder helped me and stockings never did. Caroline

My neurologist recommended an abdominal binder to prevent pooling of blood after eating. I bought one and found it lessened the achey and queasy feeling that i get after even a small meal. Fairly comfortable to wear. Cost $35 at medical supply store. Probably cheaper at amazon.com.

Rockiesgirl how lovely! Thank you for the beautiful thoughts which touched me very much! Caroline

I am considering trying homeopathy and wonder if others have tried it. I will be grateful for any feedback. Thanks-Caroline

East bay not far from berkeley

I don't have POTS but pure autonomic failure. Cannot seem to find a neurologist in the San Francisco Bay Area who can help. I am dizzy and nauseated almost all the time but their suggestions are limited to compression stockings and abdominal binders. Can anybody recommend a good neurologist in the area who understands and has treated dysautonomia?

Kcmom. What did the doctor do to take care of the balance problem? Thanks--Caroline

Melatonin is on the DINET list of substances to avoid, as i recall.

Mgirl, there have been lots of stories about people doing stuff on ambien that they dont remember. I think these incidents are very rare but of course they hit the news media. Hope you find something that works for you; insomnia can be unbearable. --Caroline

I take 5 mg of Ambien every night and it works well for me. It hasnt made me get up in my sleep and eat everything in the refrigerator. I wish it would, since i have such a hard time eating anything. --Caroline

This is a great site and gives me some good info. However I dont have POTS. I was diagnosed with pure autonomic failure. Are there other members who arent Potsies nut still have some kind of dysautunomia? If so, what are your symptoms, issues, concerns? I am dizzy and nauseated most of the time though tests showed i do not have gastroporosis. Eating is a big problem and the dizziness means i rarely leave the house.I live alone since my kids are all grown up. Needless to say i am grateful for your insight and support whatever your diagnosis. Best regards--Caroline aka adamandbensmom

Chronic illness and all its limitations is bound to create some strong feelings. I found a really helpful book: HOW TO BE SICK: A. Buddhist Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernard. I am not a Buddhist but i think the book is terrific. Amazon.com has it in paperback or e-text. So does Barnes and Noble.

Lizababy, I order salt tablets online, from amazon.com, in the one gm size. Other outlets, like drugstore.com, will also have them.

Naomi, the Genie uses an electric motor to go up and down, very easily.

I drink a large bottle of coconut water daily. Great for hydrating, and a fine source of potassium. Besides, it tastes good. It tends to be a little pricey, so I watch for sales and buy it by the case.

Hi, I'm Caroline (AdamandBensMom), a new member who is delighted with Dinet Forum. What a great source of info and support! Just wanted to share info about a very useful piece of equipment that I'm now using. Doctors kept recommending that I raise the head of my bed, so I bought a Genie mattress: actually a kind of electric-powered plastic wedge that fits between the mattress and box-spring of my bed. I can make the head of the bed go up and down like a hospital bed by using a remote control. I think sleeping with my head raised is helping with my PAF symptoms--and it's very comfortable. Best wishes to all!

718 mom, my kiddies are all grownup they look out for me instead of vice versa. Don't know how i would cope with little ones in the midst of this illness. I wish you all the strength and resolution you need. Adamandbensmom

hi adamandbensmom! i edited your post because it just had the quote. i understand of course that you're new to the forum so you're still learning how to use all the buttons! we prefer no quoting in posts as it makes reading quite difficult and takes a lot of space. you can answer other peoples writings by just mentioning their name. when you like to add a reply, just scroll down. on the right side there are two buttons. you can click on the left button "add reply". good luck in trying, i'm sure you will learn very fast!

Hi, I'm pleased to be a new member of this group. I've been diagnosed with pure autonomic failure Went to the Mayo Clinic (AZ) to consult the experts, but never saw any because I had a heart blockage and ended up getting a pacemaker. With my heart condition, doctors decline to use a medication like Midodrine that will raise sitting and lying blood pressure. I'm taking Lexapro (partly for depression) and Ativan, and using non-med interventions like compression stockings and an abdominal binder. I bought one of the new Genie mattresses that raises the head of the bed substantially like a hospital bed, but I haven't tried it yet. I'll welcome your comments on these predominantly non-medication interventions for my disease (lots of dizziness and nausea). Are they working for any of you? Thanks--AdamandBen'smom