u/Scooby-Snaccs

I’m getting my second round of botox next week (my first round was last year and failed, not even a single burp or slow swallow), and I’m getting a much higher dose.

I also have an ultrasound appointment 2 weeks after my botox - in which case, I’ll need to lay on the exam table for it.

I expect that my acid reflux/GERD will be worse whilst the botox is active, and have a wedge pillow ready for after the treatment.

I know not to bend over or anything to avoid regurgitation, but how long after botox could you lay flat?

Since I already have a weak LES (due to a hiatal hernia) and the botox will paralyse my UES, I’m concerned about the acid reflux and regurgitation when flat.

Will I be ok laying flat for my ultrasound, or should J rearrange it? I’m unsure if I’ll be able to be propped up (it’s a pelvic one), and I will also need to drink a lot of water beforehand.

I understand a lot of people have had RCPD since infancy, basically, I think that’s probably the majority. But, I know that there are people who developed it later on in life for a variety of reasons! I’m interested to hear if there was a specific trigger that caused yours, if it was random, if it developed slowly over time?

For my story, I could burp normally as an infant and young child, until I was around 5 years old. At 5, I started getting really uncomfortable bloating, nausea, vomiting, regurgitation, bile reflux, etc. After a barium swallow, I was diagnosed with intestinal malrotation.

I think the standard practice for children with malrotation these days is to operate and fix it, even if volvulus isn’t present. But, in the late 90s/early 2000s, the doctors here preferred a “watch and wait” approach instead. So that they did.

I had constant nausea, bloating and vomiting for MONTHS. I was super underweight and malnutritioned because I couldn’t keep anything down, and I have vivid memories of being sat on a bench in the playground at school during lunch just feeling SO sick, trying my hardest not to vomit all over the floor, whilst my friends played without me. Truly an awful experience for a 5 year old.

I’ve never had a fear of being sick (I still don’t, it’s unpleasant but I usually feel better after it - and am still occasionally sick every few years. Usually after too much alcohol lol), but I was being sick so often and in such inconvenient places (like the classroom) that I tried to stop myself being sick as much as I could.

My intestinal malrotation didn’t progress to volvulus, and eventually straightened itself out. I’m 31 and still have it without any direct symptoms, since it was never fixed.

I’m certain that my intestinal malrotation caused my RCPD - or rather, my attempts to suppress the nausea and vomiting it caused. Even after my malrotation symptoms went away, I started noticing loud gurgling/croaking in my throat at school, painful abdominal distention after fizzy drinks, random nausea, etc.

That RCPD then lead to a hiatal hernia and GERD diagnosis in my mid-20s, due to the decades of pressure build up.

So, my GI timeline is: intestinal malrotation > RCPD > hiatal hernia.

Anyone else have a similar experience/origin - or a completely different one?

Unintentional rhyme in the title, but essentially, I cannot go bra free during the day, and I bloat very easily due to the RCPD. I’m booked in to get my second round of botox this year, but in the meantime (and it also might fail again), I’m trying to find a bra that doesn’t give me insane chest pain from pressing on the bloating, or aggravate my reflux.

My bloating is often in my upper abdomen (I also have a hiatus hernia which doesn’t help) and I’ve never found a bra to NOT put pressure on it after a while.

Underwire, non-wired, elasticated, in-built into tops, you name it, they all seem to dig in to my distention in the middle of the day whilst I’m sat working. I’m about a 36DD and can’t afford to go braless in the office, but I also don’t want the discomfort!

The bra I currently wear is the best I’ve tried, it’s a minimizer bra in the larger sister size (38D, so a looser underbust) and whilst in the morning I wear it on the tightest setting, by around 3pm I’m on the last hook and struggling.

Any suggestions?

I had 100 units last year that didn’t work - I planned a few days off work the week after but didn’t end up needing to take it off, since I had no slow swallow, burping, etc., after the first round.

In a few weeks time, I’m getting it done again, but 200 units. My consultant advised that every 200 unit botox he’s done has been successful, but that the slow swallow will be much more pronounced.

I’m getting it done on a Friday, and I’m due to be training up a new colleague the following Tuesday. But, I’m wary that talking all day, in the office, 4 days after the procedure with higher botox, might not be a good idea. Trying to figure out if I should rearrange the training for a week or so later, or book a few days off in advance.

For those who’ve had 100+ units of botox under GA, did you ever need to book any time off work or take sick leave for it?

So, I was diagnosed with a hiatal hernia in 2021 and have been taking lansoprazole since 2020. I also have a condition called RCPD (inability to burp), which has a lot of overlap with GERD, and I suspect my RCPD caused my hernia after decades of bloating and trapped gas!

But, my RCPD was caused by a duodenal malrotation when I was 5 years old. This essentially caused 5 year old me to be constantly nauseous, frequent vomiting, bile reflux, regurgitating, crippling bloating, malnutrition due to being unable to keep food down, etc. It was horrific, I think it lasted several months and then eventually went away.

I’m in the UK, and the NHS suggested a “watch and wait” period, predicting I’d grow and “straighten it out” or something to that nature. Never had any surgery for it. And, the symptoms did indeed reduce, except for the bloating and nausea which was then, I believe, caused by the RCPD the malrotation lead to.

So, after researching as an adult, I’ve found that intestinal malrotation actually doesn’t ever just sort itself out. The symptoms subsided and I thankfully haven’t had any volvulus/intestinal strangulation, but apparently living with untreated malrotation increases that risk.

At the age of 30, I could randomly end up with volvulus tomorrow, just because the health service deemed it cheaper and easier to let a 5 year old suffer and wait it out instead of performing the surgery which is standard these days - and as a by-product, left me with an inability to burp and a lifelong hiatal hernia/GERD.

Just had to come on here to rant, because so many doctors diagnose you, but then just stick you on medication. They don’t try to figure out the root cause, or the underlying issue. Just “yep, you have this condition, take these PPIs that can cause osteoporosis and vitamin deficiency and get out of my office”. Baffling.

So I’m getting my IV iron infusion next week and I’m super excited! Feels like I’ve been waiting for ages, and I can’t wait to get my iron above 15 for the first time in over 3 years.

My appointment is at 12pm, which is a bit of an awkward time since I take other medication too that I need to space out from iron.

I’ll be skipping my ADHD meds that morning (my provider’s recommendation), but I still need to fit in my PPI (lansoprazole) for my acid reflux.

I’ve been taking my PPI 30-60 before dinner, so at around 4-5pm. Should I still be good to take my lansoprazole about 4 hours after the iron infusion?

I know you need to avoid dairy, etc., within a few hours of iron - I usually eat oats or porridge with milk for my breakfast, would it still be ok to eat my usual breakfast around 8-8:30pm?

Is there anything else I should be mindful of before or after my iron IV? I assume at my appointment they’ll tell me about after it, but by then, if I need to be mindful of stuff before it, it’d be too late!

I’m on my last few days of Affenid XL 36mg - I’ve done around 3.5 weeks on this and haven’t felt a single ADHD helping side effect yet. I get a jittery feeling the first few days of the dose but that eventually subsides, I don’t notice anything else other than it takes me longer to get to sleep! No increased focus, quietened thoughts, etc.

In my titration appointment a week ago, they mentioned that by 36mg I should be feeling SOME positive effects from the medication, but I’m just not yet.

I’ll be trying the 54mg for 2 weeks before my next titration appointment, but I think that if I don’t feel any real difference with those, I’ll ask to try Elvanse instead.

For those going through or have gone through titration, at what point did you realise that the meds you were trying just weren’t having the effect they should and you needed to switch?

My GERD isn’t too bad at the moment, but I’m getting botox for my RCPD (for those who aren’t familiar, a condition where I can’t burp) in a month.

After the botox, it’s apparently common for an increase in reflux (plus a slow swallow) so sleeping more elevated is recommended.

I tried a wedge pillow a few years ago and could NOT get comfy at all. Felt like there was a weird kink on my lower back, my head and neck felt wrong both with and without an extra pillow, etc.

Does anyone have any recommendations for a comfy wedge pillow, or alternative, that’ll help to reduce GERD without interrupting my sleep or waking up with aches and pains?

I have a thick and large mattress but have been looking at wedges for underneath it, I think I might need two or more so the whole top of the mattress is on an incline though. Trying not to break the budget!

30F, I’ve suspected I’ve had IIH for years now, but no doctor seems to actually want to do proper tests for it, so I still remain undiagnosed.

They referred me to ENT who did a sinus and temporal CT which was fine, a doctor checked my artery in my neck (the side which is worse for PT) and said there doesn’t appear to be any blockages or anything, and that was that. Ophthalmologist said everything looks good from eye perspective too.

I’ve dealt with pulsatile tinnitus (worse in my right ear), waking up with a throbbing/pulsating headache on my left temple and top of head every morning (it goes away within literally 5 minutes of being up) and immense head pressure when bending over (to the point I literally can’t do a lot of yoga poses because it feels like my face is going to explode lol) - all since my early 20s.

I have chronically low iron (my ferritin hasn’t been above 15 in over 2.5 years, I don’t have any recorded vitamin blood tests from before then so probably longer too) and one thing I’ve noticed is that the lower it gets - it’s currently at 8 - the worse my PT and morning headaches are.

I’m getting my first iron infusion soon, so I guess that’ll really be the test (even if just anecdotally), but has anyone else experienced this or is there a link between them? Is fixing my iron likely to reduce my symptoms?

So I’m 30, came off Nexplanon about 4 years ago (after being on it with no periods for 7 years) and every year since then, my periods have gotten heavier and heavier.

They’re still regular, and don’t tend to last longer than 5 days. But the first 3 days (days 2 & 3 being the worst) are abysmal. Constant large clots, changing my pad every 1-2 hours, cramps slowly getting worse.

Starting last year too, I started noticing bleeding and clots during ovulation. I’d occasionally get ovulation cramps and occasionally spotting in the past, but these days it’s full on clots, like a light period for a few days. Sometimes blood and cramping during/after sex too - even without penetration, just being aroused can occasionally cause it too.

I had an transvaginal and external ultrasound late last year which came back clear (bar my usual small follicular cysts) but the sonographer mentioned that because I was mid-ovulation during the ultrasound, my womb lining was thick and it’s possible I have some smaller fibroids that are hidden by the lining.

I’ve had multiple other tests to rule out other things - CA125 to rule out ovarian cancer, hormone levels (LH and FSH tests) to rule out them being out of whack or peri-menopause, normal pap smear, etc.

Basically, it’s been about 9 months since then, I’m still getting these awful heavy periods and clotting during ovulation, so I’m going to ask for a re-scan.

When in my cycle would be best to try and get an appointment for? I’m convinced that I have fibroids, there’s no other explanation for what could be causing it.

I’m titrating on prolonged release methylphenidate atm and not really feeling any effects from it yet, not feeling more focused or anything like that.

But, I do have very low ferritin (it’s sat at 8 currently). I’ve been supplementing since June but I have heavy periods (likely the cause) and struggle to absorb vitamins orally. I’ve had low iron for about 3 years, and just feel tired and unmotivated all the time.

I’ve booked a private iron infusion (because the NHS reaaally don’t want to refer people for one) and the consultant mentioned that studies show a significant overlap with people who have ADHD and also low iron. Both ADHD and low iron can cause similar symptoms too, like brain fog, lack of motivation, etc.

Theoretically speaking, getting my iron up to a healthy level should help my symptoms overall and assumedly help my ADHD meds work better?

Has anyone had an iron infusion and if so, did you notice any difference with your ADHD symptoms or how well your meds worked?

I don’t have a follow up about my medication for another week, but I’ve been dealing with chronic low iron due to heavy periods over the last few years - getting worse each year.

I also don’t want to be on birth control so my GP has suggested taking tranexamic acid during my period.

After looking online, it says there are no officially listed interactions between tranexamic acid and methylphenidate (currently on the prolonged release version), but that there are some risks, such as blood clotting (tranexamic acid helps blood clot, whereas methylphenidate increases blood pressure and can increase the risk of cardiovascular issues, so the combo of both is more risky than one or the other. I also have a family history of heart disease, heart attacks and strokes, although my ECG and BP are normal atm), as well as overlapping side effects like headaches and dizziness.

Has anyone used both at the same time, if so, what was your experience?

I’m hoping to get an endometrial ablation, but I think my GP wants me to try this medication first before referring me, but I’m really anxious about it!

My ferritin has ranged between 7-15 for the last 3 years (most recently tested at 8 in early June). My GP simply said “probably just heavy periods, here is the same 3 month course of 200mg supplements you’ve tried 2 times before, which only brought your ferritin up by 7”.

I know a lot of others will have the same frustrating experience and it’s really pissing me off!

I take lansoprazole daily (and have since 2021 when I was diagnosed with a hiatus hernia - which is also too small for them to bother operating on, so I guess I just have to live with it for now), and PPIs alone already hugely reduce vitamin absorption. Then I came off birth control in 2022 after it was causing debilitating ovarian cysts, and every year following my periods got heavier and heavier.

I have really heavy periods now (as in changing my pad every 1-2 hours for 3 days, huge blood clots throughout the day), blood clots during ovulation, sometimes after sex, etc.

My GP referred me for an ultrasound (transvaginal and external), the US tech suggested I might have fibroids but she couldn’t see them as my womb lining was very thick (think I went during ovulation). Had a few blood tests to rule out hormonal issues and ovarian cancer, all fine, and then my GP just decided that was good enough. Heavy periods and bleeding in between them is just normal for you now, good luck! See you again in 6 months for more futile iron supplements!

I’ve booked a private iron infusion (£1000, but hopefully 1500mg so that should help) and I’m trying to get another ultrasound at a different time in my cycle and a referral to a gynae. I want an endometrial ablation, but I just KNOW they’ll encourage me to go back on birth control again.

I know the NHS isn’t really “preventative” or proactive, and more reactive for when your health’s tanking, but it shouldn’t be this difficult. Especially when you’re hours away from the nearest private clinics and hospitals, and health insurance at work is awful (the only option I have at my workplace rules out paying for treatment for conditions I’ve suffered from within the last 2 years, so I’d get no help paying for rectifying my low iron, heavy periods, hiatus hernia, etc).

Anyway, women’s healthcare sucks and doctors are so frustratingly dismissive.

I had 100 units last year which didn’t work, the consultant instead suggested doing 200 units which he says has worked in every case he’s used it.

It’s very promising that the likelihood of it working is higher this time around, but I am wary of the side effects and slow swallow being super extreme if it’s successful. I didn’t have any slow swallow during my first round (kinda how I knew it failed lol).

Has anyone had 150 or 200 units following a failed 100 unit botox, and if so, what was your experience with it?