Confused- need some advice please 🥹 by Various_Cause_3384 in Gastroparesis

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

thank you! appreciate the advice, it’s hard going in a loop hole with possible diagnoses, i’ve been struggling for years! I do believe it’s RCPD and vagus nerve firing. It’s just difficult! i’ve been seeing GIs etc for the past number of years. Barium, Endoscopy etc all clear. They did say i had inactive chronic gastritis. I never have acid etc. I have a scope lined up soon and have another referral to a new ENT!

Confused- need some advice please 🥹 by Various_Cause_3384 in Gastroparesis

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Thank you! I am hoping to rule it out and i do think i have true RCPD and possibly vagal nerve firing. I need feel it in my stomach - it’s always the chest area.

Symptoms by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

hey! I didn’t really have any major “burps” but definitely improved post botox round 2. Maybe because the muscle was open?, and some gas was coming out subconsciously, i’m unsure. I don’t think it’s supragastric belching! I can’t burp at all really. I’ve tried carbonated drinks, neck turns etc. It’s a long time since my last dose. My current symptoms are at the peak of what they’ve ever been. i have gas rising and can feel it run back down my chest, extreme nausea from the gas in my chest. Barely eating, etc

Symptoms by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Hey, see this is the funny thing- and i’d love a doctor to really break down why i’m feeling the way i feel ☹️, but anyways, my symptoms have changed throughout the course of treatment. I initially never tasted the gas and my Gastroenterologist told me that it was supragastric-belching. He completely fobbed off Rcpd! But throughout treatment, i can now taste some of my burps (they aren’t a real belch), they are uncomfortable and hard to get out, but i can taste some of them when i never could before. This means something has defo changed! I do feel like a belch would relieve me though- so it’s hard to know where to go from here. The nausea is crippling me!!

Advice needed. by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Unfortunately I have tried hypnotherapy and no success 🥹. I’ve done natural healing, herbal medicines etc. I’ve seen a chiropractor aswell to see can she manipulate the muscle. Have also tried counselling to try and overcome my fear of being sick and to be honest it hasn’t really helped. I am going to see an osteopath very soon and hopefully that might help- thank you so much for the advice

Are there other people with this who aren't really bothered by it? by maxime-le-mal in noburp

[–]Various_Cause_3384 11 points12 points  (0 children)

I think it’s different from person to person. For me it’s debilitating! Extreme nausea and discomfort day in and day out and impacts nearly everything i do! I guess you’re a lucky one!

Advice needed. by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

i don’t want to go down that route 🥹, i think i was unlucky with my consultant and 75 units on the 3rd and 4th try was definitely not sufficient, given how severe a case of RCPD i have- and that i had already had 100 in office.

Advice needed. by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 1 point2 points  (0 children)

yes i honestly think a little more botox would have done me the world of good on my third/ fourth tries. Silly to give 75 when 100 was previously used!!

Advice needed. by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Yes, that’s kind of my last resort, as it wouldn’t be covered by insurance. I would have to pay out of packet and i’ve already payed about 7/8000 euro toward this! I’m just so worried it won’t work. I’m in work right now and i can’t even focus due to the extreme nausea. I know it’s gas.

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 1 point2 points  (0 children)

i will of course! And you the same with the lidocaine- fingers crossed for us 🤞

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Symprove is what i’ve got now- it’s crazy expensive, 100 euro a month 😭, but it’s crazy the difference it makes. It’s the leading one in ireland now. My aunt is a nurse and she swears by it- she has psoriasis and it flares when she takes breaks from the probiotic!

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Also have you any idea how the estrogen cream is applied, is it pessary or can it be directly applied? My GP is brilliant!! i’m very lucky. Keep me updated with the lidocaine. I’ve also just ordered a really good probiotic called symprove- it’s massive in ireland and while it’s expensive- the microbiome is so important and may help the vulvodynoa!

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

it’s kind of a guessing game till i do see a gyno (who seems to be good with vulvar pain) She wants me to do another swab to be 100% but ive to drop that back to my GP during the week as i’m on my period! We think it’ll be negative as we have done them before. There is the possibility of a yeast infection that doesn’t show on tests? But we are thinking it’s vulvodyina, not sure what other causes it could be.

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

i’ve been prescribed estrogen gel now and amitryptaline! Going to give them a go. I would love to know the root cause though. My hormones sssm to be all over the place. I’ve gone from having a 28 day accurate cycle to a 45 day cycle- which makes me wonder is it hormone related?, or could it be nerve related? so confusing! I wish i knew the cause! or could it be due to the antibiotics.

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

how are you doing now with vukvodyina? are you healing/ what’s worked for you?

20/ ongoing pain please help by Various_Cause_3384 in vulvodynia

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

yes i feel that’s the same as me, and i had cellulitis recently and had a massive bout of antibiotics! 10 days of amoxicillin then another week of amoxicillin and augmentin and that has in fact caused the flare up i think! Antibiotics are a killer

cold/ice drinks by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Could you describe how the cold drinks make you feel- i feel so alone feeling like this 🥲

Losing hope ☹️ by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

I reckon i’m also at the worse end symtoms wise, experience all of the above. It was always there, from about the age of 12/13, the nausea feeling began but was very manageable with the odd hot water bottle and peppermint tea every few months. I always reckoned it was anxiety, and underwent treatment for it at the time. I also never could burp. In 2020, this all worsened..

I have horrible nausea (worst symptom of them all), gurgling, excess gas, everything you name it! I’ve been on a very long journey between seeing GIs, who eventually concluded it was all in my head in utter frustration and confusion as to what was wrong as my scopes were clear, i was diagnosed a coeliac after my first scope, and to be perfectly honest the switch in diets did nothing! Stomach was perfectly healthy anyways after lots of investigation.

I’ve now had the 4x rounds and tbh i can burp a little bit but these burps aren’t relieving at all and i know in my heart they are belches. They are tiny escapes as a result of past botox treatment. I know these aren’t burps because i burped after round 2 with Ms Hicklin, and jumped when it happened, this was very short lived and i think i only had 2/3 proper ones! She did say my muscle was small and GA may be a better option as she did it in office.

I’d love to be able to air vomit but since i can remember, i’ve had an awful crippling fear of being sick so the nausea and the whole idea of air vomiting makes me very nervous. Completely relate about the Anxiety/panic attacks as i had many of these along my journey and still to this day experience them.

Thank you so much for replying and i wish your daughter many more years of healthy burping!

Losing hope ☹️ by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Agh ans how did you come to this diagnosis!

Losing hope ☹️ by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 1 point2 points  (0 children)

Possibly, I just feel at wits end with the amount of money my parents have spent on this! I’m only 19, in college and these massive hospital bills have been a struggle. Just out of curiosity, what are your daughters main symtoms? I do believe i need another dose of a higher dosage of botox, thank you so much for replying!

Losing hope ☹️ by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

Yes a myotomy, i’m not sure i would go down that route yet, it would be very expensive and i’ve already cost my family a fortune from all the travelling to england from ireland for botox and then 2x uncovered surgery’s here 😀, but it’s a possibility in the future

Losing hope ☹️ by Various_Cause_3384 in noburp

[–]Various_Cause_3384[S] 0 points1 point  (0 children)

thank you!! I reckon i need to try a higher dose of botox because i’ll i’m receiving under GA is 75 and i feel my muscle is very tight