Hyperemesis Support

[LucindaE]

I hope everyone suffering from the Horrors of Hyperemesis will find this thread useful as a source of support and information.
There's no TMI on here - can't be by definition - and nobody should feel ashamed of moaning as much as they feel the need to.
MOH's wonderful website is full of useful information on this illness:
sites.google.com/site/pregnancysicknesssos
Another invaluable website is:
www.pregnancysicknesssupport.org.uk
If you need help in obtaining medication, phone them on:
024 7638 2020
Lastly, the NICE guidelines on treatment are useful:
cks.nice.org.uk/topics/nausea-vomiting-in-pregnancy
I would like to thank everyone who has given such invaluable support and advice on this and on previous threads.
It has been suggested that I add some practical tooth cleaning advice: a lot of sufferers find using a child's small toothbrush and strawberry toothpaste far less nauseating.
On my image of a pink castle: that is an image I use because when I was little, my family had a Snakes and Ladders board with an image on the last square of a pink castle in the clouds. As Hyperemesis is so like a grotesque version of Snakes and Ladders - eat a meal, go up a ladder, first thing in the morning bile run, down a snake - I have used the image of that pink castle on the last square of that Snakes and Ladders board as a metaphor for the happy end of Hyperemesis.
Remember when you are at your worst, 'This Too Shall Pass'. It really will.
So many women on this thread have thought they couldn't get through this, but they did.

ChloeHel That would be awful, when it was brought out specially for pregnancy sickness. What do the GP's surgeries say about the shortage?
I'm glad you've got the Spanish version and things aren't going too badly.

@LucindaE I know! There was speculation that they were being discontinued! But hey it’s only pregnancy related sickness no big deal to big Pharma companies! Ugh! There’s nothing they can say as they are just as much in the dark as their patients. They can just prescribe alternatives. I will just carry on plodding along and hope that they are either back in stock or the sickness has died down before I’m out of the Spanish ones too.

Hi everyone,
Congratulations on the babies that have been born!
My due date (4th Jan) feels like a lifetime away.

@MerryHen I am in awe at what you have been through. I am so sorry for your losses.

I am currently muddling through on prochlorperazine and cyclizine but thinking I need to up the game and start the ondansetron soon. I am bed bound due to nausea and feeling the guilt over not being present for our two boys (2 & 4). My husband and mum are both really again ondansetron at this stage, am I right in thinking though the cleft lip thing is from an outdated study?

This is my 4th HG pregnancy now but it is completely different to the other 3 in terms of what's working and what isn't. Finding the suggestion of haribo helpful! I think I'm suffering from some kind of acid reflux this time too, my chest is incredibly tight 90% of the time and sipping on a milkshake really helps. Is there anything to take for this or do I just ride it out?

Sending love and prayers to you all.

• husband and mum are against ondansetron at this early stage, I should say.

@BalletN
unfortunately we have no family nearby, and friends all have their own young kids/no kids but work so no extra support unless things get very desperate, in which case I'm sure one of our mum's would come to help out.

@LucindaE re: antacids, I was prescribed 150mg Ranitidine (sp?) With DD and it helped me. It can also be bought at a lower dosage over the counter, could be worth talking to a pharmacist or obstetrician if you're seeing one.

@buntywindermere I believe the research about ondansetron increasing the risk of cleft lip and pallette is quite recently, it isn't something I was told in 2019 but it's possible it just hasn't filtered through at that point. The actual risk is a 0.03% increase, absolute numbers I believe are an increase from 11 per 10,000 to 14 per 10,000 (think I read that on the BNF, haven't seen the original research it came from). Everyone has a different level of risk they are happy to accept, hopefully if it's something you want to try your mum and DH will support that.

I got some ondansetron Friday and it has helped the with the vomiting, nausea was still bad until today, the fact it has eased today enough for me to leave the house automatically has me worried I'm miscarrying though 🙁

Hugs to everyone, we're all one more day through this.

@buntywindermere I think @MerryHen is right about the absolute risk numbers but I seem to remember from when I looked at it, there was a caveat that they'd not taken folate levels into account so it might be that the women taking the ondansetron had lower folate levels due to not having been able to keep the supplements down because of the sickness.

How many weeks are you (sorry, brain not working at the moment to be able to calculate it)? I think palate and lips are formed by the time you get to 9 weeks (I didn't actually manage to get ondansetron until I was more like 14 or 15 so when the GP mentioned the risk I wasn't particularly bothered by it even though she mentioned it and given how lousy I was feeling before that, I think I'd have taken the risk earlier if I'd had the opportunity, but those are obviously personal choices.)

ChloeHel I do hope so!
buntywindermere I've added your date. Great advice from Merryhen about the minimal level of risk with Ondansetron. As you were on it before, , to get a laxative with it. I didn't have a second child, but from what I have seen on these threads, LO's soon forget this period of comparative neglect. Melleebacca always had a great tip for acidity, half a teaspoonful of calcium powder. There is also Omprazole. I believe Ranitidine, which as with Merryhen , has helped many on these threads, was withdrawn over some scare or other. For all I know, it may have been returned.
Merryhen Excellent advice.
Apologies to anyone rudely ignored.

Due Dates
HopefulJ2018 14 June
Starbeach 17 June
BuffyFanForever 19 Jun TWINS!
PopGoesBang 7 August
FarmWife 12 August
rainbowzebra05 15 September
ChloeHel 5 October
Kiwi202 15 October
ohCARP 16 October
tigger2022 18 November
greenerfingers 28 November
ElephantGrey101 29 December
buntywindermere 4 January

Realised everyone has a DD listed... Having spoken to the consultant this afternoon I now have an ELCS date booked in for 12th October! (EDD off ovulation was 23rd, 19th off scan - happy to go with their date for the purposes of booking the section as it saves me 4 days of pregnancy!).

First time that anyone has actually spoken to me about the nausea and sickness and sounded really sympathetic. He also asked if I'd got a plan in place for coming off the ondansetron - when I said not, but have tried a few times but the nausea was retuning he was supportive and suggested I wait another fortnight and try again. Was also realistic that if I'm still feeling nauseous at 26 weeks it could be for the long haul.

@LucindaE ranitidine sadly still not back - they now use omeprazole instead - gutting for me as they work in different ways and ranitidine also works as an antihistamine that helped my urticaria (still not convinced by the reason it was removed and neither was the allergy consultant I spoke to about it 18 months ago!).

Oh no, sorry I hadn't realised about Ranitidine. Does anyone know why it's not recommend anymore?

It helped me so much last time I was going to take some I had left over, glad I didn't now.

@buntywindermere congratulations but sorry to hear your suffering again. I take my hat off to you for putting yourself through another pregnancy, you're obviously a tough lady 😊

I find the due date thing so depressing too, I'm due end of December and it feels a million miles away and I just feel absolutely AWFUL. It's one of the worst things about HG is the time people generally suffer the most is the time when the baby is the furthest away 😥

All the best to everyone suffering, another day down at least.

@MerryHen those numbers sound vaguely familiar actually I think you're right! Thank you.

@Weathergirl1 I am about 9 weeks now. I took it from 14 weeks in pregnancy #2 and had to take it until the very end, there was never any talk of weaning me off!

@LucindaE thanks for the acidity tips.

@LovesFood1987 I just can't believe how far away the end of the year seems!!! My first pregnancy felt like it last forever too - January to September, but my second was July to March which flew. This feels like it's going to be another drag I honestly feel like I have been suffering for weeks! I miscarried in January and still suffered with bad HG up until passing the pregnancy a few weeks later, so perhaps I just feel like I have been bed bound and sick for the majority of the year. I hate wishing the year away but I really am doing!!

@MerryHen it's to do with a small amount of impurity called NDMA which had been linked to cancer in an animal study. From the amount of reading around the issue I did (it was the only antihistamine that really did anything for my urticaria - it's an H2 antihistamine), it seemed to be an over-reaction in the USA and then the European medicines people followed suit - as I said upthread, the allergy doctor I spoke with about 18 months ago also thought it was an overreaction. No idea whether they'll so any further research on this but it caused a massive issue as there were so many people taking it that the knock on effect was supply issues with alternatives 🤦🤦🤦

@Weathergirl1 you could always try Cimetidine, it’s the same drug class as Ranitidine. I don’t think Ranitidine will be back for a very long time, they will probably have to make a new patent for it which could take up to 10 years.

@ChloeHel unfortunately cimetidine tablets all contain food dyes that set off my urticaria. The only other H2 antihistamine I could have is famotidine but they wouldn't prescribe it while I was still breastfeeding (and it was put of stock because of the run on ranitidine substitutions) 🤦

@Weathergirl1 oh no! Yeah famotidine went out of stock for a while too! We aren’t allowed to give any ranitidine in the pharmacy now, it’s like it never existed. Did you manage to find a substitute for the urticaria?

@ChloeHel at the moment, no but it's not flaring so I've been hanging on with everything crossed for when I can try famotidine. When I do get the odd hive, I've been managing with a cream I make up using sodium cromoglicate eye drops (a mast cell inhibitor) that the international urticaria society recommend - tends to alleviate the itch well enough 🤞

Congratulations @FateHasRedesignedMost! Sorry to hear it was a dramatic delivery but so pleased you're both doing well now 🥳

I had another scan today so now have a due date of 25th November.. They moved my date by 5 days so I'm very excited about the possibility of 5 less days of pregnancy!!

So after a couple of weeks of feeling lucky and managing quite well on metoclopramide and ondansetron, the nausea/sickness is back! I'm around 9w 4 d right now which I've heard can often be when sickness really ramps up? Is it worth going back to my GP and seeing about adjusting the dosage of my medication or do I ride it out for a couple of weeks and see?

@JessV12 Sorry you're feeling rubbish. Mine got worse around then too. If your gp is supportive then no harm in asking if they'll prescribe something extra. I'm 15 weeks now and still sick but definitely not as bad as I was at 9/10 weeks. Sending hugs.

JessV12 Might it be a hormonal, as you're coming up to the dreaded ten weeks? A good idea to enquire about dosages.
Merryhen and Weathergirl1 What a pest about Ranidine being still off the market like that. Weathergirl1 It's awful that is the first bit of sympathy you have had from medics.
buntywindermere I am sorry for your loss in January.
BalletN and Weathergirl1 I've added your dates.
Waves to LoveFood1987 and ChloeHel and everyone.

Due Dates
HopefulJ2018 14 June
Starbeach 17 June
BuffyFanForever 19 Jun TWINS!
PopGoesBang 7 August
FarmWife 12 August
rainbowzebra05 15 September
ChloeHel 5 October
Weathergirl1 12 October
Kiwi202 15 October
ohCARP 16 October
tigger2022 18 November
BalletN 25 November
greenerfingers 28 November
ElephantGrey101 29 December
buntywindermere 4 January

I hope everyone is managing today.

I don't think it will either which seems mind blowing as it was the licensed one!!

Ondansetron controls my vomiting but does absolutely nothing for the nausea so the xonvea was good at tackling that! :(

I'm 21 weeks now and still on 8mg ondanestron morning and then again at night. I can't see me coming off that anytime soon!

I’ve managed to get three prescriptions of Xonvea.
One on boots online pharmacy
Second on Lloyds online pharmacy
Third from Cohens chemist which I’m going to collect today but I’ve received the two from both online pharmacies

Edit. Just wanted to say I had multiple prescriptions out in attempt to get stock and the Cohens and Lloyds one were both in for over a month!