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/nauseavomiting-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.

I'm so sorry you didn't get support from them, but your mental health is much more important so I'm sure you did the right think for you in stepping away @abbs1 💖

Sorry to hear you've been hospitalised @pasqual but you're in the best place & hope you come out feeling a bit brighter 💖 It's a great reminder seeing little babies, there's something really quite special at the end of this nightmare!

Oh no @Monstamio - those sweets are soooo good at taking that rotten taste away. Hope you find something that helps soon x

I was able to stop my meds at 28 weeks last pregnancy but this one, not a chance i take 8mg ondansetron 3x a day and I’ve tried knocking each dose down to 4mg but nope, the sickness starts right back up again. So I’ve just accepted it’s how it’s going to be..

Try not to worry @abbs1 - I’ve never heard of any withdrawal type issues with baby & I’ve spoken to many ladies who’ve had their bambino’s! The placenta is likely filtering out a lot of the drug I have however heard that it’s quite common for HG to rear it’s head in later pregnancy unfortunately. I’ve been up & down but def feeling more nauseous at the mo bc (34 weeks) My baby is breech and midwife said her head is completely squashing my stomach, which I imagine is probably part of the reason!

Sending love to all really suffering, they are dark days. You will get there 🧡 I’m now feeling quite cheery with only 6 weeks left.. there is light!

Welcome toDotty356 and Pasqual. I am so sorry that Pasqual has been admitted again, and glad that Dotty has been given meds. I must add frozen Isotonic drinks to my list of recommended liquids, which features a few posts back if either of you cares to view it but as Dotty is a veteran and Pasqual well on the way to becoming one, I don't think either of you is likely to need my 'have you got kesostix as while they are not the best test of dehydration hospitals do take them serously' ' 'Have you been given an anti acid' and 'pre-emptive meds are a good idea' I am glad that Dotty has been given both. I often recommend 'full sugar flat frozen coke ice cubes' but I have somehow dropped that from the list. Pasqual I hope they are able to add something that helps you further and can release you soon. I've added you to the Due Dates list.
kissingthebear I am glad anyway that you are not vomiting and that Xonvea has helped. It is a shame expense deters GP's from recommending that, as it does with Ondanetron.
abbs1 I am sorry that the sickness is back. Unfortunately, some do find that it comes back in the third tri, though only rarely is it ever as bad as it was in the first tri. But many do get bad days without its coming back more than occasionally. Hoping tomorrow is a better day.
Monstamio Much sympathy over the foul taste. I used to suck barley sugar, but kissingthebear's suggestion sounds healthier.
Those sweets sound simolar to the 'Travel Sweets' I used to buy regularly from a funny old fashioned independent pharmacy when I lived in London! But I don't remember if those were sugar free.

justtheonethen amd everyone Wonderful advice [fowers]

Due Dates
MumbleLumble 19 February
Katela18 22 February
Bray23 23 February
Twistsandcurls 3 March
Dinosauraddict 10 March
yellow25 17 March
Bol87 18 March
Sprite25 29 March
Catconfusion 15 April
RaynorEsme2019 19 April
pastnowfuture27 April
Moonstone12 1 May
Pastnowfuture 7 May
MrsH497 18 May
BeautyandtheBump 30 May
Pasqual 4 June
StayClosePooky 20 June
kisisngthegbear 23 June
justtheonethen 18 July
Ummasomebody 20 July TWINS!
areallthenamestaken 24 July
boulevardofbrokendreams 2 August
sickandtiredofsick 29 August

abbs1 I meant to say, about metoclopramide. There have been a lot of sufferers on here who were on it for months, and it seems to vary from doctor to doctor about how long they're happy to have you on it. I think they are mainly worried about the possibility of the mother (not the baby) developing twitchiness.

@LucindaE so far I haven't had any twitcheness which is good. When I googled it it said you can have withdrawals from it so maybe that's what I'm having. I was only on 10mg a day but being on it so long maybe my body is struggling to cope without it. I've been off it 5 days so hoping maybe the nausea is just withdrawal and I will be ok in a couple days. I will see what the doctor recommends on Wednesday and go from there. I'm avoiding ondansatron at all costs as the side effects are just so bad with the constipation.
Thankfully I hopefully only have 8 weeks or so left of this. I'm hoping he comes a bit early and praying hes not overdue!

Hello,

@kissingthebear I tired to ask my doctor today to move me on to Xonvea, but she refused because she hasn’t heard of it before. She only has a list of recommendations and that isn’t on it. 😭.
Cyclzine is making me feel awful and still sick. How did your doctor find the drug?
Xx

Hi @Dotty356 - this really is so frustrating. Can you find the pregnancy sickness support website. It's listed on there as an approved drug. Many GP's haven't heard of it before. It's been around for AGES in US & Canada. I understand it's relatively new here but it is available on the NHS. I had to push, and did go to a private obstetrician who initially prescribed it and then I've been getting the repeat prescription on NHS. Private prescription was punchy, about £80 for a few weeks. If you're struggling you could go down the private route for ease, but equally I don't think NHS can deny it. X

Thanks @kissingthebear they have referred me to hospital as I have suffered quite a nasty side effect so just waiting to be seen.
@LucindaE thank you for advice. I’m not due till October and already having my first trip to hospital. It’s horrible but nice to know I’m not suffering alone and knowing how you have all got so far down your pregnancies give last me hope that I can at least try and get through this xx

@Dotty356 so sorry to hear you're suffering, it's awful and so miserable but you're not alone! 💖 please try and push for Xonvea. It's safe, and I've honestly not suffered with any side effects. The only real side effect is tiredness but the initial dose is 2 before bed so you're asleep anyway! The hospital may be more clued up & hopefully more helpful.

When I went for my 20 week scan I did notice there was a pregnancy sickness support poster up in the waiting room which I thought at least was some progress since the last time I was pregnant 5 years ago!

@kissingthebear I have been seen and given an injection of odansatron- I think that is spelt incorrectly. I asked again and the doctor said they didn’t prescribe it in hospitals. She did go on tell me that the NHS is happy to prescribe ones which may cause some birth risks odansatron being one of them. Yet they won’t prescribe the one that has been checked. Very annoying. I will ask every time I go in. Which I imagine will be a lot. She said something along the lines you just have to get through it! It’s easier said than done lol. X

@Dotty356 oh "you'll just have to get through it" - they sound like the words spoken by someone who has suffered with HG NEVER!

Sorry it's proving a battle for you.

How are you feeling now? Have they sent you away with any sort of medication plan? x

Dotty356 Poor you, having violent side effects from Cyclizine is unlucky. I hope they sort out some effective meds, but if they aren't as effective as they might be, kissingthebear's suggestion they may be ab le to help with getting some Xonvea, the Pregnancy Sickness Support number is 024 7638 2020 and they will ring you back with good advice. The website is linked in the introductory post to this thread. Everyone on here is lovely and supportive. I am Mother Hen these days, as it was a long time ago I suffered, and I just run these theads.
kissingthebear Your advice has really been excellent. I hope you are feeling not too bad? It's good about that Pregnancy Sickness Support poster being up!

abbs1 I am glad you have no twitchiness. It's a rare side effect. I hope you aren't feeling to bad.
justtheonethen How are things?

@kissingthebear I am back this morning to get a prescription for Ondasatron. So fingers crossed that works out for me.
How far along are you now?
@LucindaE I tried to ask for the new drug and was refused sadly. I’ll keep trying. Eventually they might give in. I could always try another hospital but it’s an hours drive from me.

Morning
@Dotty356 hope you managed to get a good rest overnight & that prescription helps you. I'm so sorry they wouldn't give you Xonvea. It's so so frustrating. I'm 21 weeks now, going most day vomit free now on 3 Xonvea a day. Still have nausea and that horrible taste in my mouth but both are more manageable since I started taking these meds. If I overdo it I go backwards.

I realised @LucindaE I gave you my wrong due date - it's actually 18th June. Having good days and bad days but just trying to take each as it comes & not think too much about the weeks left x

Ughh so I've been lovely.and stable on 2 xonvea per day for weeks. But I messed up dates with requesting prescription and been without for two days and the vomiting has returned with a vengeance.. Feeling so so sorry for myself but hope I can get back on track once I restart today or tomorrow. 28weeks now. Yuck.

Soooo i've just returned home from another 'lovely' hospital stay - I can normally keep at least 1 meal down a day, but from Friday - Monday I managed to keep 1 meal down throughout the whole weekend and was sick well over 50 times, so as expected the ketones had a party!! I also had protein in my urine - I'm not sure what that means but I didn't have the energy to ask. They gave me blood thinners too...again, couldn't be arsed to ask.

Numerous bags of fluids and vitamin drips later, my sickness has been reduced back to a more 'normal' level 😃

The hospital staff told me I am welcome to return whenever I like, I told them I refuse to be back on that ward again until I'm giving birth in 16 weeks. 😂 We'll see how that plans out 😂

@BeautyAndTheBump1 sorry to hear you’ve had another hospital stay.

I’ve turned a massive corner (14 weeks) and have had a few vomit free days. Mild nausea and I’m very tired all the time, but managing to eat fairly normally which is a relief. Even if it’s short lived, I’m grabbing these days with both hands.

BeautyandtheBump I am sorry that things got so bad you had to be hospitalised. I'm keeping my fingers crossed you don't have to be again.
kissingthebear I've changed your date! Five days earlier sounds good.

Dotty356 I hope the Ondansetron really helps. A lot of sufferers say it is the only drug that does. If not, do keep pressing for Xonvea. Unluckily, Ondansetron is notorious for causing tied up bowels, so do invest in a laxative asap.
Jay2020 I am sorry to hear that mix up happened with the prescription. Hoping you get some more asap.
boulevardofbrokendreams That is really good about those good days. Even if you have a relapse, good days are an excellent sign of the turn around to come.

Due Dates
MumbleLumble 19 February
Katela18 22 February
Bray23 23 February
Twistsandcurls 3 March
Dinosauraddict 10 March
yellow25 17 March
Bol87 18 March
Sprite25 29 March
Catconfusion 15 April
RaynorEsme2019 19 April
pastnowfuture27 April
Moonstone12 1 May
Pastnowfuture 7 May
MrsH497 18 May
BeautyandtheBump 30 May
Pasqual 4 June
StayClosePooky 20 June
kisisngthegbear 18 June
justtheonethen 18 July
Ummasomebody 20 July TWINS!
areallthenamestaken 24 July
boulevardofbrokendreams 2 August
sickandtiredofsick 29 August

Hope everyones doing ok today!

After a 2 night hospital stay, I requested to be discharged. In a ward with 3 other ladies who had just given birth to their lovely babies. Downside was that during visiting they had anything between 4 & 10 visitors at a time, including a family of 4 who brought themselves up a KFC for their dinner and sat and ate it using the girl next to me's bed as a table whilst I lay behind a curtain with a sick bowl. The final straw was a husband eating eating a fish supper complaining loudly about how the noise of people being sick was putting him off his dinner.
I asked the midwife if there was any chance I could be moved and she was horrible saying no and that people were entitled to their dinner. So I asked to be let home. Sent home with more ondansetron & cyclizine to alternate and blood thinning injections that I need to take until the end of my pregnancy.

To top it all off, the only thing work said was "so when will you be back?" Its the lack of understanding that is so frustrating!!

I've frozen some flat full fat coke into ice cubes to eat, so thank you to this thread for that tip, so far so good!

Can I join? Feeling so miserable - second HG pregnancy. This one isn't as bad as the last - possibly because I started on medication much earlier. I'm 7 weeks now. However, this time around I have a 12-month old to mind which makes it harder in many ways.

I'm on cariban (same as Xonvea) and stemetil. Thankfully the vomiting has stopped as long as I rest all the time and steer clear of bright lights / sounds / smells. I can also keep down fluids and food (last time I couldn't even keep down my own saliva). Even so, I have been signed off work and have to have family mind my baby.

Sorry to hear that everyone else is struggling, I know I'm getting off easily this time around!! And I guess that this too shall pass for all of us...hopefully sooner rather than later!

Hi everyone I’m still lurking I haven’t been able to type some days as I’m so ill
On x2 ondansetron 3 times a day
Had my booking in appt yesterday
I’m just feeling so awful and I’ll be honest I can feel that I’m actually really depressed and I’m struggling and it’s just because of the sickness

Pasqual Welcome back. I am shocked about that midwife's attitude! I think you are entitled to complain to the HEA. The visitors sounded inconsiderate too. I have never known visitors use a ward as a canteen in a hospital. Why couldn't they eat their takeaways at home? If people had been given chemotherapy would they be expected to put up with that? If you don't feel up to complaining now, do complain after the birth. Insensitive of your workplace to say that, too. I am glad you are on Ondansetron and Cyclizine - a lot of sufferers find that a very effective combination.
PippaStar Welcome. Sorry you are suffering. I am glad your family are able to help a lot with your one year old and you got meds early this time. As you are a veteran you don't need my 'have you got kesostix, as while not the best test of dehydration hospitals do take measurements of ketones seriously' and 'a good anti acid can make all the difference' and 'do you find full sugar flat coke, the juice of tinned fruit and ice lollies any good' spiel.
sickandtiredofsick Much sympathy. It is very hard to get through and isolating. Might your GP's be able to offer a counselling service if you feel depressed. Goodness knows, this is a very depressing sort of illness to have, but if it feels unbearable it might be a good idea to ask. I believe Pregnancy Sickness Support also offers counselling and by definiton, they know you need a counsellor quickly so there would probably be less of a wait with them.
Apologies to anyone rudely overlooked.

I feel so guilty each time I’ve had a scan as I suddenly think ‘oh ....yes. I’m pregnant’ it’s like I’m feeling so ill I’m forgetting does that make sense ? I mean I know I’m pregnant but I feel so bad it’s like I forget that sounds silly I know

I have found it really hard to connect with this pregnancy. With DD1 we were so excited for every little change but this time I've not had the energy to be excited. Now that I can feel proper movement it's getting real now but it definitely took me longer to get there! It helps to read that others feel the same way.
@LucindaE I'm not wanting to complain as I still have to go there to give birth, but yes it wasn't nice at all. The woman in the bed next to mine apologised on behalf of her family and commented on the way the midwife had spoken to me.

Hi everyone

Gosh I've had a horrible stinking day, just felt so sick all day long haven't been able to shake it and have just had another vom fest this evening. Arrrrrr why why why?! Feel HORRIBLE
21 weeks today 😰

@sickandtiredofsick sending you hugs and posi vibes. It's so tough. It's like this huge weight you carry with you always. It's mentally draining. You can go speak to a mental health midwife?

@PippinStar hey 🤗 it's my second pregnancy too, first was unmedicated but I think this is worst as I'm still pretty green even on great meds!

@boulevardofbrokendreams those vom free days are defo ones to celebrate - they're pure gold dust!!

@BeautyAndTheBump1 sounds blooming horrendous, 50x my goodness!!!! At my worst I was throwing up 20x a day and I don't think I could have coped with anything more. You hero!!

@Pasqual that's awful awful awful - how insensitive. I'm so so sorry!!

@Jay2020 I had a medication panic too, I'm also on Xonvea but x3 a day, had to get a rushed prescription through. Defo going to send reminder way in advance on phone or something!!