Struggling with nausea....

[DISC]

As a result of EDS, I have gastroparesis. I am 45 and weigh 5 stone. I survive on liquid foods apart from jelly sweets and one plain gluten free muffin which is soft and dissolves in the mouth (hence my treat of the day and the only solid-like thing I eat). I struggle to drink even water each day and have always had issues with nausea which can last the whole day, often weeks at a time, but lately it had been worse, despite all of the regular nausea meds that I take... erythromycin, ondansetron, domperidone in tablet and liquid form. I try cola flavour sweets, gripe water and ginger but nothing seesm to help... I'd appreciate any ideas and news on any new meds which you may have found which could help?

[Aishahb5364]

Poor you...I hate feeling sick. I sip flat Jamaican ginger beer or Pret's ginger shots when I feel nauseous. They do seem to take the edge of it for me. Its worth a try, anything is when you feel sick. Have they checked you for ear problems as they can cause nausea. I hope you get some relief soon.

[DISC in reply to Aishahb5364]

Thanks but I struggle with taking on even small amounts of liquid. I have no ear probs, its the gastroparesis, as it has falre ups with the nausea which is what I'm having now. Thanks for the suggestion though.

[Barnclown in reply to Aishahb5364]

Good point Aishah...

E.g. when my persistent vertigo was investigated by nhs ENT in the 1980s, i was put on daily stemetil (prochlorperazine maleate) for months, but it turned out my nausea was more related to my chronic hEDS GI issues, than to my autoimmune-related inner ear nerve damage....although the ENT consultant did say the spondylosis (osteoarthritis due to childhood fall on head from height injuring my long hEDS neck) in my neck was involved too

[Barnclown]

Hello DISC

Am v much feeling for you...this sort of thing can be v hard to manage...the nhs gastro clinic caring for me at my big univ hospital tells me that they are inky now developing care protocols for hEDS gastro patients, so our medics are “feeling their way” to giving us the right combined therapy treatment plans. Yes, there are many generally accepted self-help techniques we do best to practice, but these can only help “so much”.

Your meds make me guess you are in the care of a good gastro clinic, but i wonder if this clinic has a good nutrition & dietetics dept, and, if yes, how are you finding their advice: do they help you much with this nausea? And are you on the antibiotic erythromycin because you have been diagnosed with small bowel bacteria overflow due to hEDS slow transit dysmotility? I ask because i’m finding that taking the antibiotic coamoxiclav 625mg 2x daily damps down my persistent nausea more effectively than any treatment tried on me so far (whereas i had 6 years on domperidone + PPIs which barely helped at all)...maybe ask your medics if you could try a different antibiotic? Eg when urology gave me IV gentamicin during a procedure i went on to have No Nausea at all for several months, but then immunology put me on daily coamoxiclav indefinitely...

Otherwise the only things that help me keep the nausea to a minimum are stuff like: avoiding caffeine, alcohol, smoking...sipping instead of drinking liquids (sorry: i know you can’t eat solid food, but for others i’ll add: + trying to only take solid food little & often...avoiding ‘resistant starch’ food stuffs, keeping fats to a min, avoiding all fruit & veg fibre, avoiding raw meat of any kind, etc). Sipping these liquids helps damp down my nausea most: freshly brewed ginger tea, weak chai tea, bottled water. I can get a bit of Onken plain yogurt down...also full fat natural cottage cheese (i like tesco’s) and tiny blobs of buffalo mozzarella...

some background: am 64 now, and have been managing slow transit dysmotility from lips to a**s all my life. Persistent nausea became a daily prob in my 40s. My GI diagnoses are: sjogrens oral inflammation/ulcers made worse by the hEDS dysmotility + chonic persistent loss of apetite + dyspagia & oesophagitis & gastritis & gastroparesis & small bowel bacteria overflow (due to hEDS slow transit dysmotility) & duodenitis & intestinal pseudo obstruction + early onset prolapsing strangulated piles (full on emergency haemorrhoidectomy in my late 20s), all of that is hEDS-related, and complicated by my infant onset systemic lupus + the primary immunodeficiency hypogammaglobulinaemua G,A,M. I’m 64 now

I’m lucky, in that i can still take a vvvvvv limited selection of solid food by mouth. But i do have to lifestyle manage all my mouth to a**s GI probs & take my meds vvvvv conscientiously. My gastro clinic says i‘ll go on liquid nutrition when weight loss + blood test results are bad enough + when the amount of solid food i can take becomes even more limited. They say patients can turn things around...we must stay positive. I’m assured there are lots of types of liquid nutrition so we can find one that suits us best. And if worse comes to worse, techniques of parenteral/enteral feeding are better than ever before. Have you found a type of liquid nutrition you more or less “like”?

I hope something in all that is useful to you...sorry for going on at length, but this subject is close to my ❤️ for obvious reasons. I hope you get more replies: i know persistent nausea affects many of us

Take care...hope you’ll let us know how you get on

🍀🍀🍀🍀 coco

[DISC in reply to Barnclown]

Thanks so much for your info, it was really helpful. Yes I do take antibiotics too which help with motility, and I take stemetil which I've ben taking for years as well. Your post was really helpful.. thanks so much and good luck for the future. x

[Barnclown in reply to DISC]

You’re v welcome. Your post & this discussion help me too. Good luck XO

[Hidden]

Gaviscon advance helps me along with the anti-sickness meds. I don’t have gastroparesis but I suffer with severe reflux. Could you have some readybrek? That can be made very watery but oats & warm milk settle the stomach.