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.

Hi all. I’m pregnant for the second time, having HG once again. Starting meds immediately helped me not get into an awful state, but I’m 16 weeks now, taking Xonvea and Ondansetron and luckily they help a lot but I still feel nauseous and have 2/3 vomiting sessions every evening. I am however managing to drink and to eat certain foods, but I’m frustrated by how weak I am.

I have to stay in bed 95% of the time which is difficult with a toddler. Never thought I’d be so desperate to take her to the playground, but I can only walk for about 5 mins before I start retching and it takes me out for the rest of the day.

Really need some encouragement - please can anyone tell me they felt like this at 16 weeks but gained strength after 20 weeks? last time I definitely improved after 20 weeks but for some reason (probably toddler related tiredness) I don’t feel like that’s going to happen this time.

@Foxtrotbeta my last pregnancy I stayed on Cyclizine and Ondansetron all the way through, but dropped Ondansetron down to 2 tablets at some point. I also stopped vomiting entirely in my third trimester, so there is hope! But I would just stay on the meds for the duration tbh.

@Littletoaster2021 Yes I'm coming to terms with this lasting the whole way through. 24 weeks yesterday and still terrible nausea, particularly in the evenings. I had a day off Ondansetron last week when my prescription ran out and started vomiting again, 3 times in an hour when I woke up. The midwife suggested I chat again to my GP about options and whether xonvea is worth trying. What have other people's experiences been with xonvea?

@Foxtrotbeta Xonvea is really my lifesaver this time around. I am heading for 22 weeks and still vomiting with food. I am on max dose Xonvea and 2 Odansetron. For me, Xonvea has cut out the 'background vomiting', the excess saliva and the nausea from smells. Mainly because I can hardly smell a thing. I also sleep quite well on it. Without it I was vomiting 30-50 times a day. With it, it's mainly after eating or drinking too much. When they ran out at the hospital and they only had Odansetron the vomiting increased rapidly.

I too, am resigned to another 16 weeks of this. Luckily my hospital has me in at least 1 x a week for fluids and check up. 💪

@alpinia this sounds terrible! I feel for you. I think I will ask the GP about xonvea.

@Foxtrotbeta just echoing what @alpinia said - Xonvea is amazing (but take it alongside Ondansetron, not as a replacement). It really helps control the symptoms and particularly helps me to eat. My GP had never heard of it, but I told them it was recommended by Pregnancy Sickness Support and they were happy to prescribe. It can sometimes be tricky to get, I had to call around pharmacies to find someone who had a supply so you just have to be on it and make sure you get a repeat well in advance of running out to ensure there’s time for the pharmacy to order it in.

I spoke to my PSS about Xonvea but they checked and it can't be prescribed by a GP where I live it needs to be a consultant. I asked a consultant in the hospital and they basically said no, no good reason. Other than they'd not heard of it.

I currently need to take my dog out before I go pick up my DD from preschool but I feel so sick. I just don't think I can do it, which really isn't like me 😭 I would never not take my dog out but this pregnancy is thrashing me. I'm only 12 weeks, such a way to go yet

@RedRobyn2021 speaking as a dog trainer dogs don’t always need to be walked everyday giving them a brain workout can be just as good - hiding treats for them to find around house/garden - cardboard box filled with shredded paper and treats - put a treat in loo roll (just the cardboard bit) and fold ends over, even just a few short training sessions 2-3 mins long a couple of times a day, just depends what you can manage and whether the smell of dog treats will set you off. You could sit on a chair in the garden and pull a toy around on the end of some rope/string if your dog likes to chase things. There are also puzzle games you can buy and things like lickimats and kongs which can be used with food and frozen to make them last longer. You may already know all this but hopefully may give you some helpful ideas.

Thank you for this, a dog trainer has told me this before. She does always have a walk in more with my DP.

I need to be more creative with her entertainment on the days I can't manage. Thank you for your kind message

Hi everyone, does anyone else have a couple of days of feeling a bit better followed by some really awful days? I've felt terrible all of yesterday and today (I'm nearly 26 weeks). I just feel constantly nauseous unless I'm actually eating or sucking sweets. It's really getting me down. GP said no to Xonvea, I'm not sure how well ondansetron is working now but there doesn't seem to be anything else to try.

Hi everyone I have had 2 HG pregnancies and am now planning a third baby. I asked my GP about taking an antiemetic as soon as I get a positive test ( all going well). GP said they are not willing to prescribe an antiemetic without any symptoms and I would need to go to the EPU. Anyone any experience of taking an antiemetic before symptoms started? Did it make a big difference? Thanks.

@QueenBee22 I’m sorry your GP wasn’t supportive. This is my second HG pregnancy and I went on cyclizine as soon as I had a positive test and it’s made a massive difference, I’ve not got anywhere near as unwell as last time. Pregnancy Sickness Support advocates starting meds pre-emptively as it can stop you getting into the dehydration sickness cycle. I just told my GP I had HG before and they agreed to prescribe. Please speak to PSS for advice on going back to your GP!

@Foxtrotbeta why did your GP say ‘no’ to Xonvea? They should all be able to prescribe that now

@SunSparkle she said she hadn't come across it and I'd probably have to get it prescribed in the hospital. She offered to go away and look it up, so hopefully if I have another appointment she would know now.

@Littletoaster2021 thank you for all that information. Great to know it made a huge difference to you.

Does anyone have a link to NHS recommendations to prescribe xonvea In pregnancy? The 2019 NICE xonvea page redirects to a generic pregnancy nausea guidelines NG201 with no direct mention of xonvea. Thanks!

I'm glad to see this thread is still here.

How can this be so awful? I am accidentally and unexpectedly pregnant at 45. Last HG pregnancy was 8 years ago.

I remembered it being grim but Jesus wept. I'm 5 weeks and 1 day and haven't even thrown up yet but the extreme nausea and dizziness has just kicked in. I was hoping it would hold off until 6 weeks.

Not even sure if I will keep the pregnancy but am starting to imagine feeling too ill to organise an appointment.

@Foxtrotbeta yes I just came on here to say I’m fed up of this cycle of feeling better for a few days and thinking it’s finally over to then be hit with another wave of hideous nausea and vomiting that goes on for days at a time.

I’m 14 weeks now, it’s not as bad as it was in my first pregnancy, but still pretty grim.

My GP will also only prescribe Cyclizine which does nothing for me. I think a lot of GPs are nervous about prescribing drugs in pregnancy as they don’t know enough about what is safe and what isn’t so err on the side of caution.

@Foxtrotbeta if you do the online chat with pregnancy sickness support they sent me a pdf to give to my GP. It was amazing.

@MaybeBaby2024 if your Gp is useless ask to be seen at EPAU or go under consultant care and have them prescribe for you instead.

@Foxtrotbeta I am heading swiftly for 24 weeks and had a fee days recently where I didn't feel so completely awful. I'm back in bed the last two days though as it is back with vengeance. I am pretty sure Xonvea features on many of the NHS hyperemesis guidelines. You can maybe find your local ones by searching for PUQE + .pdf + NHS or something.

I have not had GP care this time around, apart from an initial referral. Thankfully the GP I saw was aware of HG and sent me directly to the hospital. It's terrible how there is such a variation in treatment depending on awareness levels.

Hi,

Hope everyone is ok.

First pregnancy here, currently 8 weeks and I've been diagnosed with HG after 2 hospital trips. I've been prescribed Xoneva and started taking it last night and stumbled across this group. How long did it take for you all to start feeling better on it? I'm so worried that not eating and drinking is damaging our little bean.

Hi @Daydreaming91 it took a few days to build up to the max dose of Xonvea and then it really helped me. If you’ve already been hospitalised it’s likely you’ll need another medication too - I went on Ondanstron at 10 weeks and that with Xonvea was a winning combo. I know it’s a horrible feeling, but the babies are little parasites and they take what they need. You’re the one suffering, not them!

@Littletoaster2021 thanks for the reply I'm glad to hear it helped you. I've actually managed to eat a sandwich today and not been sick so hopefully I'm on the right path. It's either that or the anti sickness injection they gave me but that didn't touch the sides last time.

I worry about taking medications while pregnant but I guess they wouldn't prescribe it if it was unsafe.

I am 23 weeks. I have had nausea from about 7 weeks pregnant and i am GD. I am so fed up of having a couple of good days followed by a few bad days. No idea how i am going to keep up the mentla strength. I am on cyclizine as first line and ondansetron as second line. I dont know whether the nausea or GD is worse.

Hi everyone,

First pregnancy here, currently 11 weeks and I've been diagnosed with HG after I ended up in A&E at 6 weeks. I've been on cyclizine and prochlorperazine for a while which did not work too well. Finally, I've been prescribed Xonvea and started taking it over a week ago. It has been a lifesaver! I can now drink water again and eat some food (although mostly bland carbs). I am signed off from work and it really helps to read through this support thread. Thank you all for sharing your experiences xx