caroline

Dr Goodman at mayo in scottsdale is superb You couldn't do better. It isn't that hard to get an appointment there. Best of luck--Caroline

Dr goodman at mayo arizona is wonderful and they have a fully equipped autonomic lab facility. You do not need a referral. Good luck--caroline

My experience is the same as Angela's with the ttt

Caroline

Dr. Goodman, my doctor at Mayo Arizona, prescribed 10 grams of salt daily. This is SALT, not SODIUM. I finally figured out that to calculate the amount of salt in processed food; one multiplies the "sodium" amount by 2.5. So an 11.5 oz. can of V-8, which has 600 mg. of sodium, has 1500 ml of salt. I eat heavily-salted food, and also use salt tablets in the 1 gram size. Even so, I can't seem to ingest 10 g. of salt without its increasing the nausea and diarrhea which are already problems for me. I'm going to call Goodman and ask if I really need that much, but I am curious about whether salt affects other people as it does me. Thanks for your input. Best to all--Caroline

I use ordinary table salt but not the iodized kind. I add in the salt in processed foods i consume and of course there is no telling what kind of salt the manufacturers used.

I am so very sorry for your loss. I pray you will feel better soon. Caroline

Thanks very much. Incidentally i am making good progress with the 10 grams of salt daily now that i realize one must multiply the SODIUM amount listrd on bottles and cans by 2.5 in order to obtain the amount of salt. But it sure is a lot of salt! Thanx again for your advice and encouragement. Best--Caroline

WyomingGal, can you just put in a call to Goodman for info and advice? I don't think he mentioned that to me.

I just got back from Mayo Arizona, where I saw Dr. Brent Goodman and had a complete assessment. Great experience! Goodman, who is both kind and knowledgeable, talked with me at the beginning and carefully read all the documents I'd brought, including my self-written medical history and my chart of BP and pulse readings. After this initial 2-hour session, he sent me out for all kinds of tests, interviews, and procedures. I'm convinced he didn't miss anything important. At the end of four days we conferred for three hours, and his summary, I thought, was a masterpiece. He changed my diagnosis (but not my meds--he is waiting for the results of a test I'm having done here in the San Francisco Bay Area) and made numerous useful suggestions. It is going to be hard to get down 10 g. of salt daily, but I will do it. Goodman answered all my questions as well as they could be answered at this time--and best of all, he gave me hope that my health and my life generally can be improved. All the doctors and technicians I encountered at Mayo seemed first-rate: professional in every sense of the word. I think the visit will change my life, and I am so glad I went! Interesting side-note: I always thought that POTS was the one disorder I could be sure of not having, but my new diagnosis is orthostatic intolerance of the POTS type (not quite full-blown POTS). Best to all--Caroline

Bellamia i am so sorry you have to go through so much. I am thinking of you and will pray for you. Hugs. Caroline

Sarah4, i have an abdominal binder that is comfortable. Made by universal surgical appliance. It is stretchey and boned with a cotton panel in the front. Fastens with velcro. Don't get one that is too wide or sitting and bathroom use will be a problem.

Lots of us have gastric problems, including problems with motility, so I thought folks might like to know about the Center for Neurogastroenterology and Motility at California Pacific Medical Center in San Francisco. It's directed by William J. Snape, Jr. It seems to have a good reputation. They offer all kinds of testing and support services, one of which is gastric electrical stimulation (Enterra), which I understand is a kind of gastric PaceMaker. It's a surgical option, and I don't have the impression that the device has been implanted in many people so far. I have an appointment there, and will let you all know how it works out. I don't know about the rest of you, but I am sure my life would be very much easier if I didn't have to deal with constant low-grade nausea and weight loss. Best--Caroline

Web MD says that cabbage is used to treat this syndrome. Probably easier to tolerate than beta blockers.

Thanks so very much for your encouragement and practical suggestions. They mean a lot to me. --caroline

Some of you may remember that I had a previous appointment with Dr. Goodman at Mayo Arizona. I got there but had a horrendous heart blockage as soon as I entered the building and ended up spending the entire week in the hospital, getting a pacemaker and dealing with a punctured lung (surgeon's error). Didn't see Goodman or anybody else at Mayo. Well, I finally got up my courage and my $$$ to try it again, and I'm scheduled for early September. As an old lady and as a survivor of that previous experience, I'm nervous about the whole thing--but I'm going, no matter what. I hope you will give me your loving support. I'll write afterwards and let you know all about Dr. Goodman. I appreciate all the info and backup I get from Dinet. Love to you all--Caroline

Lizababy can you tell me how to check to see whether a topic has already been discussed on the forum? I appreciated your referral to lengthy discussion of

marijuana and dysautonomia. Thanks. Caroline

Thank you lizababy. Very helpful to read earlier comments. Caroline

Recently I tried a small dose of medical marijuana to see if it would help my appetite, which is really non-existent. I took only a half-dose, but I didn't enjoy the effects; I felt more light-headed and spacey than ever, and could hardly stand up. I read up on marijuana and found that it's a vasodilator, so maybe not the best thing for somebody with dysautonomia. The MJ didn't make me hungry, but did permit me to eat more easily and with more enjoyment, and I think I took in more calories than usual. Still, I hesitate to consume any more. What have been other people's experiences with MJ? Are there certain types or formulations that might work better for a person with dysautononomia? Smoking anything is OUT--I just couldn't do it without vomiting. I'll appreciate hearing about your experiences and your ideas. Thanks--Caroline

Oops! That should be NDRF HANDBOOK. Sorry. Caroline

Hi Heather. Welcome. I have the same symptoms as you and the same diagnosis. Also take midodrine. I am a lot older than you but also struggling to live with this illness. Hope this lively group gives you lots of info and support. I would like to recommend the NDFR HANDBOOK FOR PATIENTS WITH DYSAUTONOMIAS on another site as well as the DINET bibliographies. Be well! Caroline

As some of you may recall i went to the Mayo Clinic in Scottsdale at the beginning of the year. Never saw any of the experts because i had a serious heart blockage while walking into the place and spent a week in a local hospital recovering from a botched pacemaker. Should i try it again? Those of you who have gone there, what have you gotten out of it? Accurate diagnosis? Cause of condition. Better suggestions for medication? Practical suggestions for living? How helpful has it been? I have lots of dizziness and nausea, so the airplane trip scares me--and just the time spent away from home. Will i be able to find stuff i can eat? Will the tests throw me for a loop and utterly demolish me? I know i sound like a chicken but my last visit to scottsdale was really agonizing. If i do it again i want to be fairly sure that it will be worth it. Your advice will be very welcome. Many thanks--caroline. Maybe i should add that i am not a Potsie--i have been diagnosed with pure autonomic failure.

This describes my situation exactly. I am absolutely never hungry and have lost a great deal of weight. I eat frequent small meals but i dont really want any of them.

Dreams actually take place during "rapid eye movement" sleep and not during deep sleep. Try keeping a dream journal to help you get the messages of your nightmares.. I recommend alan siegel' s book Dreams That Can Change Your Life, which has a good section on crisis dreams. Siegel appeared on national tv to discuss people' dreams after 9-11. --Caroline

I am a psychotherapist--or was before i got sick--so i dont believe all nightmares have physiological causes. Possibly your psyche is expressing deep concerns about your illness. Try talking with a good wise friend about what your nightmares might be trying to tell you. Often nightmares have surprisingly positive advice to give us. Cheaper than a sleep lab.

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