Hi Sarah,I'm sorry to hear that you can't take PPI's. Unless you find one you can tolerate, You may be a candidate for surgery. Although I could take PPI's they didn't do enough and I continued to get enough reflux to create very bad lung issues. I had the surgery in Feb. 2009, and once my lungs had a chance to heal, I've done great.
Your doctor will likely want to do additional tests on you. The general ones you take in order to see if you're a candidate for a Nissen are: endoscopy (you've gotten that one out of the way ) barium swallow, 24hr PH monitor, manometry, and sometimes a stomach emptying test.
Until your doctor appointment be sure to:
1. Eat very carefully. Avoid any GERD triggers...http://www.webmd.com/heartburn-gerd/features/heartburn-spot-your-personal-triggers.
2. Do not go to bed/lie down until you've waited 3-4 hours...no late dinners. Keep your meals small. It's better to eat several smaller meals. When you stuff your stomach it puts more pressure on the HH and things can reflux easier.
3. Elevate the head of your bed. You do this by putting blocks or bed risers (I have bed risers and add 2X6 pieces of board under them--my docs want me to continue with an elevated bed in case I get a little reflux--protecting my lungs)
Pillows just bend you in the middle, actually forcing acid up.
4. Keep antacids like Maalox or Gavascon on hand. They do a pretty good job of coating and neutralizing the acid. A stopgap until you see the doc.
5. You could call the doc and ask about Carafate Suspension. It's an old drug that was developed to help heal ulcers. I have a very reactive stomach and use it to help when it's acting up. The advantage is that it coats the stomach and esophagus and protects it...and lasts up to 6 hours. Just a thought.
I hope that things get better for you soon! You're definitely in the right place.
Good luck!
Denise