JennaC

I am pretty sure she is on medical leave...

Dr. Kline is amazing and I saw her until she went on leave. I unfortunately don't have much to add to this conversation other than my support from someone living in chapel hill... there is an amazing GI motility specialist at unc-ch that really helped me with my delayed gastric emptying and severe nausea. Getting those issues addressed has probably been more helpful to me than any other MDs.

When I was there, I stood while using the heart math software. That was immensely helpful for regulating my heart rate while standing. She also does guided relaxation at the end of every session. Try checking my post history for more info on my trip to Dallas in December 2011.

Liz, Dr. K has too given me my life back. I believe I have posted more in depth on my treatment when I finished over a year ago. I was already seeing some benefits from yoga and acupuncture, but biofeedback and Dr. K's knowledge of dysautonomia and POTS were invaluable to my recovery. I still have some symptoms but my life is quite unrestricted. I can jog, ride my bike, play a little soccer. Also, I am about to finish PhD! It was difficult to make the decision to go to Texas, and one I made with the help of my primary care physician. Fell free to ask me any specific questions.

I used to eat oatmeal for breakfast. My GI motility Dr. said that is the worst thing for someone with gastroparesis. Also, I am vegan so I took the gastroparesis diet and modified to suit my habits. My typical diet now includes: Breakfast smoothie: banana, protein powder, greens, soy milk and maybe some blueberries (but not when I still has chest pain) Lunch: stew or soup (when I was very sick, I made sure to do blended, but now I usually eat more stews that are heavier in lentils, quinoa, beans, etc...) Snack: Apple (apple sauce when I was starting out or soy yogurt,). Dinner: I eat salads now, but before it was soup/stew again and maybe a tortilla or piece of toast. Other snacks: juice (Trader Joe's has an awesome green juice), cream of wheat, rice pudding, peaches, pears, nuts in limited quantity

Motillium and a gastroparesis diet changed my life. My nausea was one of my worst symptoms until I found a great GI motility specialist. Now, I have a smoothie for breakfast and stay away from heavy carbs. I was able to stop taking motillium after a year or so...

There is a great pediatric geneticist at UNC who is framiliar with POTS and can look for underlying mito disorders. UnC also has a gastric motility specialist that helped me out. I am sorry you are having a rough time. I would be happy to look up the contact info for those doctors.

Did they measure urinary arsenic? How many times a day were you eating arsenic?

Biofeedback helped me get off all POTS meds and start moving again. I practiced yoga for about a year and was able to start walking a little (was using an electric scooter for more than a block). I went to see Dr. Kyprianou for two weeks in December. I no longer take beta blokers, pain meds, or gastic motility meds. I can walk/jog for >20 minutes, ride my bike, hike and swim. I beleive biofeedback helped me get over a huge POTS hurdle. I still have symptoms, but I can manage them now and they are not nearly as debilitating as they were before...

Emma, I would definately try and get an overnight study coordinated through your doctor! My O2 saturation used to plummet when I walked and they had me wear a pulse oximeter with data recording capabilities overnight once to make sure everthing was ok. Low 90's seems a little off for sleeping. Cheers, Jenna

Oh no! Sending healing thoughts and prayers!

I agree with Lenna! I was so sick with nausea, bloating and constipaiton until I started taking domperidone 4 times a day and eating a modified gastroparesis diet. After a year of regular use I tapered off, and I now only need it on occasion. There were no side effects I could tell.

I get a domperidone Rx from my GI motility specialist and purchase it from canadadrugs.com for $0.20/pill, which turned out to be like $33/month for me. Good luck.

Have you have a gastic motility test? I see you take domperidone. My GI symptoms improved after my GI docs found I had delayed gastic emptying and an esophageal infection. I started taking domperidone 4 times a day and following a gastroparesis diet. The thought being that the there is dysfuntion in the nerves controlling GI motility. Zofran made things worse for me I think becasue it slows motility down by acting on the vagus nerve.

Right now, I take CoQ10 (I have low plasma levels without supplementation), a multivitamin, and Vit. C. When I have muscle cramp issues, I take magnesium.