Any Advice?

[patient915]

Hello, for those of you who don't know, I have POTS and gastroparesis.  For the past week and a half, but more for the past 4 days, I have been doing a lot worse.  I am very dizzy, very short of breath, more nauseous than usual, I have tunnel vision, I'm having a lot more PVC's (when I try and stand I am sometimes going in bigeminy), and I have a mild headache.  I have no idea what set this off.  Usually when I have a POTS flare up I get a couple liters of IV fluids, and that helps a ton.  On Friday, I had 4 liters of IV fluids and on Sunday I had another 2 liters of IV fluids along with 4 mg zofran.  This didn't help at all which was really surprising.  I am unable to walk during this flare up, but I've been doing some stuff sitting to keep my body moving.  I've seen my pediatrician and spoken online with my POTS doctor through all of this and either of them have any idea of what more to try.  I'm seeing a new neurologist (my POTS doctor is a cardiologist) tomorrow to see if he has any ideas.  Does anyone have any ideas of something else to try?  I can't think of anything that could have set this off (stress, medication changes, virus) so it is very troubling.  Thanks in advance!!!

[patient915]

Update: I went to a new neurologist who said that he thinks it might be a strange migraine.  He started me on round the clock Advil (not forever, just for a couple days), Compazine (also not forever), and nasal spray Imitrex.  None of these have worked so far so if anyone has any more ideas I would love to hear them.

[tkimber]

I have the same for the motility disorder. Go easy on the Date, maybe only a 1/4 for starters if you can't handle too much.  The laxative tea calls for 15 minutes of steeping which makes it stronger...I can only do about 1 minute or so.  I do the very weakened version.  I love almond milk and it has all of your calcium so you don't have to do the regular milk. I hope you feel better soon. Hang in there!!!  That's a lot to handle. Don't forget to write to Heiferly if no one else answers your question.    

[patient915]

Thanks for your advice.  I tried Reglan but only stayed on it for 3 months because that is all that is recommended by the FDA.  I am currently on Domperidone for the gastroparesis.  I have a small/large intestine motility disorder and I don't tolerate any type of laxative tea.  I'll try the drink you mentioned when one of my parents has time to go to the store to get the ingredients.  I don't tolerate any type of milk too.  Thanks!

[tkimber]

I'm so sorry to hear of this. I do not have POTS, I used to, but mine was caused by valley fever and thyroid issues that have been resolved, now I just have it when I go into a strange seizure type situation, but do have autonomic neuropathy and a type of dysautonomia crisis.  But I do have a very bad case of gastric paresis and the medication brought on the crisis. Regalan.  Although, most people take it with no problem.  I will tell you what has worked for me.  And I'm not telling you to do what I do, because since you have POTS it might not work for you. Please check with your doctor first!! But if I get really sick and bloated, I do a small cup of smooth move tea.  I only steep it for 2 minutes at the most and only drink half.  You have to see how it works for you.  It's a very mild laxative tea and I ended up in the hospital from a simple gentle laxative, and this is the only thing I can take. So use slowly to see what you can handle.  I also bought a good blender, this has helped immensely.  My stomach bloats if I have too much at a meal or the wrong food and makes the dysatuonomia worse.  I had to cut out all wheat (started having reactions to it) but I found a good glutten free bread, and I eat a lot of soft foods and soups. I have a good fruit smoothy that gets things moving. Here's my blender recipe. IT's delicious. I can only drink it in the mid morning or after, since I have blood sugar problems, but do what you can handle.

1/2 date-not the seed
1/3 banana
3/4 cup of almond milk or regular milk if your stomach can take it.
1/3 green papaya (tons of enzymes to break down food)
1/3 of whatever fruit you want, appricot, pear, kiwi
**1 tablespoon of yogurt-all optional
**1/2 teaspoon of vanilla-optional
**dash of cinnamon-optional
I can't do milk anymore and I have to have a bit of protein with fruit because of blood sugar so I use Goatein powder.  It was made by a guy who has Chron's and couldn't break down regular milk.  But make sure you're not allergic.  And if you don't need the protein and can do milk, that's just fine too.  You can add a tablespoon of yogurt

I have been doing this for a few weeks and before I was so sick and couldn't digest ANYTHING.  It has really helped.  I also blend spinach or kale and carrots with an 1/2 apple and dash of ginger for my vegetables. It's also a great smoothie to help you get vitamins. Now, I can eat more solid things without feeling like I'm going to throw up. I had a burger yesterday and did fine with it.  When I was getting really bad, I had to do the soft food diet for two days until my stomach went down....like jello, ginger ale, broth.  Doc gave me a gastric paresis diet list.  You can also find them on the internet.  If you have any questions about this just send an email.  Good luck and I hope you feel better soon. Also, send Heiferly a message on what to do about the meds for POTS, she's got a wealth of information.