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.

JennaC - that is great, can you provide me with some examples of things you eat? I"m a health nut so I tend to eat as healthy as possible so I don't eat junk food often at all and I eat gluten free which now I'm wondering why since my stomach is at the worst it's ever been.

I've been splitting up all my meals today if I normally eat something at 9am I am eating 1/2 of that and then at 10:am I eat the other half and that is helping a bit but my reflex is still bad and my chest really burns.

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.

Issie,

I did the 2 week program in December and was one those fortunate to see results very fast. My life is very different now. I should note that I started doing yoga and made some diet changes which helped me get out of my electric scooter and standing/walking more several months prior to receiving treatment in Dallas. However, Dr. K and her staff gave me the tools to get through some of my most persistent symptoms. While I don't consider myself cured, I am able to do things I honestly didn't think I would be doing again. My symptoms are way more managable and my bad days are no where near what they used to be. I am confident that with a home biofeedback program that I will continue to improve. Also, I am no longer taking any regular medications, just vitamins.

Cheers,

Jenna

That is a bummer. I can definitely relate to the bloating! I had to stop domperidone after a year becasue I'm pretty sure it gave me annoying low grade fevers.

Sue,

It should be a lot cheaper from Canada. I think I paid $100 for 3 months and I took 4x 10mg a day. My Dr. said it was important to take it 3-4 times a day to work.

Also I believe Zofran was mentioned early... With delayed gastic emptying zofran is an awful choice becasue it affects the vagus nerve, which slows motility down even more.

As a graduate student, I can totally relate to your work situation. I have a hard time slowing down, but that is the only thing that helps my symptoms! Can you work from home? I can log in to my work computer from home and that helps a ton.

In the past, I got domperidone from an online Canadian retailer. It is afordable and easy to get with a prescription. I only had to scan it in...

I see a GI motility specialist that swears by domperidone for cases like ours. I feel like that medication and switiching to a gastroparesis diet helped me start improving from many of my POTS symptoms.

Before I was diagnosed with POTS, I was under the care of a pulmonologist. At the time I thought I had asthma... Anyways, my O2 sats would drop to low 90's walking and mid 80's climbing stairs. That resulted in a prescription for supplemental oxygen! I used supplemental O2 for over a year, but started yoga and weaned off of it.

Good luck and focus on the things that you enjoy! I had some problems in high school and transferred to an independent study school in 10th grade. I didn't graduate with my friends and it seemed like a huge deal for a while, but things turned out fine. I am now in graduate school and have learned that you have rights as a disabled person. Asserting yourself can be hard, but hopefully it will relieve some of the stress around your school situation.

Reglan crosses the blood brain barrier and is not tolerated by some people. My GI doc woudnt even prescribe it, but instead put me on motilium. Also, I don't vomit, but I ruminate... Food gets pushed up in my esophaegus. Very horrible and likely due to untreated gastroparesis for so long...

Have you been tested for gastric motility problems? Before I was treated for gastroparesis, I was hungry all the time. the thought being that delayed gastric emptying results in a starvation effect.

I did not tolerate nortryptilline. It was presribed before I was diagnosed with POTS and I believe there is a paper indicating that tricyclic antidepressants are not good for POTS patients...