Jan

An endoscope should be able to tell if your lower esophageal sphincter is working. Nextium and the other acid blockers stop the production of stomach acid, they don't stop acid and food in the stomach from coming back into the espohogus. It should stop the burning when the food does come back up. The test you describe sounds like an espophageal manometry. If food sticking in your espohophagus or you are throwing it back up try a google search for achalasia. If that is what they are testing for, it is good to get an early diagnosis. I took this from http://www.medicinenet.com/achalasia/page4.htm#toch Esophageal manometry, can demonstrate specifically the abnormalities of muscle function that are characteristic of achalasia, that is, the failure of the muscle of the esophageal body to contract with swallowing and the failure of the lower esophageal sphincter to relax. For manometry, a thin tube that measures the pressure generated by the contracting esophageal muscle is passed through the nose, down the back of the throat and into the esophagus. In a patient with achalasia, no peristaltic waves are seen in the lower half of the esophagus after swallows, and the pressure within the contracted lower esophageal sphincter does not fall with the swallow. An advantage of manometry is that it can diagnose achalasia early in its course at a time at which the video-esophagram may be normal.

I read once that the steroid that is in Florinef is released naturally by the body in the AM and some people have trouble sleeping if they take it at night. Personally, if I take it without food eventually I start to get stomach pain. Not necessarily right after I take it, just some time during the day. I take it at 7AM with a glass of milk, and then go back to bed. I take my second dose with lunch. Taking the first dose so early helps me when I finally crawl out of be a few hours later.

Pots is a neurological problem so it would make sense that is who to see. Neurologists staff the clinic at the Mayo that specializes in POTS. Unfortunately, I don't think many neurologists know much about POTS. When I saw a neurologist he said he couldn't figure out what was wrong with me. He said he knew of some really rare disorders that cause BP to drop and HR to rise but he was sure I didn't have one of those and not to come back to him. Sure wish I had asked him them what those rare disorders were, since I had one. The cardiologist, bless his heart, was reading a medical book about POTS during my tilt table test and said the book said to prescribe Florinef. He said POTS wasn't really a cardiology problem but he would treat me if I wanted him to. I told him I had an appiontment at the Mayo and he said he was really glad since he knew nothing. He was visably relieved to be rid of me. I can't blame him. Now I have my Internist treat me. He looks things up and checks out ideas I have. I would go for anyone who seems interested and willing to research and try things that might help. They could be a tree surgeon and I would go to them if they were willing to help.

When I went I started on a Monday in Internal Medicine and that doc set up tests that lasted all week and I was to see him on Friday for the summary. Well, on days I wasn't too booked, I went to the places I had the tests that were scheduled for Thursday and got on their cancellation list and sat, for maybe an hour or less, got in and got the tests done ahead of time. So.....I went for the summary on Thursday and was done. (Friday was Xmas eve so I was motivated). Any test you are scheduled for, you can go to that place and get on a wait list and most likely will get in. That can cut your time down, especially if they have one day when you only have one test. They won't guarentee you will get in by being on their waiting list, but everyone I talked to got in when they went to a place and waited. In case you are unfamiliar with the Mayo, it is a series of building including St. Mary's hospital and the tests you get ordered may be anywhere. I sometimes felt like I was running to catch a plane in a large airport. OR better yet, it was like that nightmare where you are late for your final test and can't find the room it is in. Maybe you could call Dr. Fealey's assistant and ask for an estimate. I am not sure if they do more tests if you go right to the autonomic clinic or less. I did have the autonomic tests, but lots of others, heart, stress, lab work etc. I think everyone who goes to the Mayo for anything gets a chest Xray. Just a funny note. The first day I saw all these people carrying these plastic bags around and I was thinking they must have some nice gift shops for everyone to have bought something. Then I went to the lab and they handed me a jug in one of those nice bags, and it was for a 24 hour urine test. Silly me.

I have flown quite a few times since I have had POTS and find it much easier than a car. Cars make me dizzy. And after a car ride I still feel dizzy for the rest of the day. Not so with a plane. I agree with those who suggest trying to dig up a companion. Also see what your doctors real concern is. Maybe he just doesn't know how hard other means of travel are for you. I would let the airline know you need hydration now that they won't let us take liquids on board.

They have an autonomic clinic there that specializes in POTS. That is where Dr. Lowe works. Hopefully your "primary doctor" the one who coordinates your tests, will refer you to the docs in that part of the Mayo but if not, INSIST that you get seen in that part of the clinic. I had to go back a year later, having had no progress, and beg to be seen by the experts. I mean what is the point of going if you aren't seen by the experts in your illness?

I am just going to believe that when I go through menopause, I will get much better. Now I will click my heels together and say "There's no place like post menopause."

One doctor told me he thought the chest pain/tightness was due to the tachycardia stressing the chest muscles. Mine went away in time, must be my well toned chest muscles.

8 years and counting. I have improved but still have many limitations.

My adrenline rushes used to trigger panic attacks because I felt like I was going to die. The panic was very scary. Even if I tried to talk myself through it, "You're not going to die" etc. Meds have helped.

I even carry salt in my purse and in the car.

Skim Milk has the same amount of salt, and much more potassium than Gatorade. It also isn't so SWEET. People on Florinef are supposed to have a lot of potassium because it depletes it. I want to save my serious sugar intake for chocolate....

Is there any chance you have acid reflux. That can cause difficulty swallowing.

I have a male friend with POTS and he says he never wants to go on the internet boards because he doesn't see the point in talking about it. He says he thinks it is better for him to put his time into exersize and if he has a questions he asks his doctor. I don't know if that is more common for men? I know support groups I have gone to for illnesses are almost always women.

Maybe at 40 some doctors just call it something else. I can just hear a doctor telling me all my symptoms are due to aging or menopause.