Question About Nausea Meds

[set2586]

Hi Everyone. I'm relatively new here, but have been reading posts for a while. I was diagnosed with POTS about 2 years ago and then just when I felt like we were getting the POTS symptoms and my life back under control, I was diagnosed with gastroparesis. I took Reglan for a short time but it didn't really help and for the last year have been using Phenergan for nausea. The problem is it knocks me out and causes restless legs, so I only take it at night or if I'm desperate. Are there any other good allternatives to Phenergan? I see my dr.next week,so I would like to have some ideas when I go.

Also, my EP said last time that my nausea from the gastroparesis will be worse when my POTS symptoms are worse, so our best bet is to control the POTS symptoms. In the past I haven't found this to be true for me, but it does make sense. Has anyone who has gastroparesis found that it gets better when their POTS does, or does it seem to be independent?

Also, my blood pressure has always gone up when going from sitting to standing. For the last month, I've had pretty significant dizziness when going from sitting to standing and I think my blood pressure might be dropping. Has anyone else gone from experiencing hypertension upon standing to hypotension?

Thanks for any help or advice!

[juliegee]

Hi There-

You have a good EP. Treating the underlying autonomic dysfunction should help the gastroparesis. That's what we learned at Johns Hopkins and has proven true for my son (and me!) I'm glad you are no longer on reglan- it's really a bad med for many reasons. (It crosses the blood brain barrier and can cause permanent neuroological symptoms.) As a GI prokinetic alternative, consider domperidone (only available overseas- but safely taken by many US gastroparesis patients) or a tiny dose of liquid erythromycin (sweet pink stuff)15-20 mins. before meals. My son and I had miraculous results with "E." For nausea, we use 8mg of zofran. It definately helps with the nausea and has NO side effects. I only use phenergan at nigh because it is so sedating.

Moving as much as possible is a good idea. Try to work up to a good walking regimen- as you are able. It really helps to get the GI tract moving. Be sure to stick to a low fiber, low fat diet. White bread and rice, lean meats, overly cooked mushy vegs- good stuff for you. Chew, chew, chew so your tummy has little work to do. Avoiding dairy may be very helpful. We got into Rice Dream smoothies- blend Rice Dream, fruit of your choice, and ice cubes- sip with a straw.

BP variations are a part of this dysautonomia stuff. Low BP certainly makes the nausea the worst. We had the most luck when we combined florinef, salt tabs, lots of extra fluids with erythromycin (as a GI prokinetic.)

Best of luck to you-

Julie

[nantynannie]

ZOFRAN is a lifesaver for me. And I found a great remedy for RLS. I used to take 500mg of Depakote, now I use Edurolytes by Hammer Nutrition. Look at their website and read the testimonials. I was very doubtful about it, but it definately works for me. And it's better than that nasty Depakote. Good luck!

Ann

[set2586]

Thank you for the information Julie and Ann. I would like to try Zofran. I'm still trying to figure out if my insurance actually covers it. I think they probably at least cover the generic version.

Do either of you see a gastroenterologist?

Also, Ann, do you have RLS all the time or was it just with the Phenegran? I will definitely check out the Edurolytes.

Susan

[Rachel]

First off, welcome to DINET! I'm glad you are joining in.

I have had some success treating my nausea with peppermint tea and/or ginger root tablets. When the nausea is severe it doesn't completely take it away, but it does help. For the mild every day nausea I have, the peppermint tea and ginger is very helpful.

My gastroparesis doesn't necessarily get worse when my POTS gets worse. A POTS flare doesn't cause my gastroparesis to get worse. But when my gastroparesis gets worse that does cause my POTS to get worse because I'm not able to get the nutrition/calories that I need. I get extra weak and tired.

I hope that you are able to get your symptoms under control.

Rachel

[janiedelite]

I often have nausea even when my POTS isn't really flared, but when my POTS flares up I definitely have worsening nausea and vomitting. I don't have gastroparesis, but my small intestines don't move food through properly. So, like Rachel suggested, even when I'm nauseated I try to drink mint or ginger tea because getting dehydrated just makes everything worse!

My Mayo doc had the same advice regarding controlling the POTS/hypovolemia in order to control the nausea and vomitting.

I hope you can get some relief.

[juliegee]

Thank you for the information Julie and Ann. I would like to try Zofran. I'm still trying to figure out if my insurance actually covers it. I think they probably at least cover the generic version.

Do either of you see a gastroenterologist?

Also, Ann, do you have RLS all the time or was it just with the Phenegran? I will definitely check out the Edurolytes.

Susan

Hey Susan,

Yes, both my son and I see gastroenterologists. My son had a pediatric GI and a pediatric GI motility specialist at Johns Hopkins. They figured out his lightheadedness abd vomiting were linked (DUH!) the hard way. He had an antroduodenal manometry (tube through his nose & into his bowel during his tilt table test. Pure torture. He vomited, with the tube stuck in his nose, down his throat, etc. just as his BP crashed. Awful. But, they provided the best treatment plan, and terrific follow-up help. I regularly learn tricks for me from his pediatric specialists.

I hope you're feeling better soon. There's nothing worse than that awful nausea.

Hugs-

Julie

[set2586]

Thanks for all the suggestions! It will be very helpful to have some ideas when I see my dr. this week.

Susan

[nantynannie]

Hi Susan,

I have had RLS for a long time, not related to any medication. I just got it at 3:30pm, which is very early for me, but I took an Endurolytes and it worked! I still can't believe they work and I hope they work for you too.

I haven't seen my GI doctor since he took my gallbladder out. I used to see many different doctors, but now just one who can manage the Dysautonomia. Please let me know if the Endurolytes work for you.

hammernutrition.com

Ann

[jjb]

My gastroparesis flares up when the rest of my autonomic issues flare up. I don't think one causes the other for me.

Most commonl my triggers are food and meds.

If you are sensitive to phenergan, then you might want to be careful of all dopamine antagonist.

Some of the common antiemetics (meds for nausea & vomiting) are Reglan, benedryl, dramamine, phenergan, compazine etc. These ones are all dopa antogonists and can cause RLS symptoms or exacerbates already existing RLS.

The drug domperidone is similar to Reglan, but interestinlgy does not cause the same side effects such as RLS and the other craziness reglan is known to cause.

IMO, domperidone works much better than reglan (AKA drug form ****).

I was able to get it compounded here in the states. As long as it is for gastorparesis, some compounding pharms will do it for you.

I can have a very labile BP ... hypertension one minute then to hypotension.

My 4 y/o daughter had hypertension during tilt up on the tilt table exam.

Good luck