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.

@kalidasa honestly I feel I'm going backwards just getting worse each week!🥺 here's hoping it gets better next week!

@theconfused I understand the anxiety around ondansetron- been there myself but it really seems like that's the next step for you. I took it from 7 weeks in first pregnancy and from 6 weeks in this pregnancy. I couldn't survive without it. It was less effective in this pregnancy but in my first it alleviated almost all my symptoms.

@thingymaboob yes I definitely feel maybe trying it out will help me now. I think if after the 12-13 week mark (which is only a week away) if it doesn't improve that'll be the next thing to try for me.

It's just exhausting having to explain despite not having "enough ketones" you're still feeling rubbish for the EPU to just send you back with an injection☹️ just about to go get reassessed and hopefully don't get sent back x

Hi everyone!

I'm feeling a bit fed up today. I've been discharged, even though I didn't feel ready to be. I'm still vomiting, although it eased through the night thanks to the IV antisickness meds so thankfully I got a bit more rest than usual, and my urine still has +1 of ketones.

My advice was to make sure I'm drinking plenty. The doctor today told me I can't keep relying on the fluids to "fix me" because they're meant to be a temporary solution until I can hydrate myself. I explained that I'm not keeping fluids down (showing him my sick bowl from that morning as proof), but that I have been trying to eat and drink.

I'm not sure he's dealt with much hyperemesis, because he asked the midwife why this didn't settle at 12 weeks 🙈

I'm in bed now, and I feel absolutely rubbish—usually after fluids, I get a bit of an energy boost that helps, but it's lacking this time. My mood is low, and I'm not sure how I'm going to get through the rest of this pregnancy if they're not going to give me treatment when I need it 😭

My OH and I had a small argument too which hasn't helped, because during my cries, I mentioned abortion. Now I don't want to go that route, not when I've made it this far and the hyperemesis could stop at any time, but each day I'm getting worse and worse and if I stop getting the little reprieves that the fluids give my dehydration... I'm not sure how I'm going to continue. He's adamant that I can do it, and I just need to keep going—but it's been five weeks of not keeping anything down, and it's not lightening up. He sees me struggling, but he can't feel how bad it is for me on the inside.

I don't know where to go from here. I'm sorry for the long rant, I'm just feeling overwhelmed.

Me again 🙈

So I've just spoken to my CM, and she's going to call my consultant at the antenatal clinic. She says they never should have discharged me with ketones still in my urine.

Fingers crossed that makes a difference 💗 I'm genuinely just at a loss 😭

My midwife has just called, after speaking to the consultant, and you're not going to believe this, but they're sending me back to the MAU!

I feel like crying, but she reassured me that it would be fine.

So, I'll keep you posted! 🙈

@meg232xx ahhhh so pleased to hear that speaking to your midwife helped💕

I hope this does kick them into action and they keep you in until you've recovered and feeling better!

They're always so adamant that you're feeling better even though you're saying you're not feeling right!

@meg232xx I’m so glad your CM has helped - I’m still enraged for you, both in terms of treatment plan and the way you’re being spoken to. Please speak to PALS if you have the energy.

@LucindaE I’m feeling a little better today thanks, definitely a good day so far - I’ve still vomited but I haven’t felt sick non-stop, it’s been more sudden and I even made it out for a little slow walk and a sit in the shade. I think sticking to easy to vomit foods has helped, it’s not been as painful when I vomit in the last few days since I’ve given up trying to eat real meals. Weighed myself and I’ve lost 1kg this week, so it’s not terrible at all. Still worried about going back to work because if I don’t rest it does get worse, but will speak to GP on Monday if there’s no vast improvement over the weekend.

Came in to EPU this morning and they finally accepted that I had "sufficient" ketones to be severely dehydrated.

Been given an antisickness injection and on the drip and I still feel absolutely rubbish but I'm being discharged🥺 I'm thinking of raising it with my midwife when I see her tomorrow.

I've literally been told to come in when I'm feeling really rough (HOW DO I SAY IT BUT I FEEL VERY ROUGH ALL THE TIME!!!!) but they said if you have a dry mouth/ lips it indicates dehydration (which I have) but apparently I'm doing something right which is funny because I genuinely haven't kept a meal or drink down for the last 7 days?

Been switched over to clyclizine again (this is the 4th time I've had it, so fingers crossed it works now).

Argh, why are so many of you being treated like this?!

@theconfused it's absolutely bizarre that you're being discharged. What a nightmare. My usual place of IV treatment is a gynaecology ward in an obstetric hospital and they keep women in for almost too long!

I just deleted a long, long post by mistake...
Meg232xx Like others, I am outraged on your behalf. When you are a little stronger, do complain. No wonder you feel desperate; things will get better. That comment of the doctor about 'relying on fluids' was just about the last straw. What was he thinking? Do keep us informed.
Theconfused I am glad you got fluids. A good idea to raise it with your midwife. On seeing her, I was wondering, if you're reluctant to take Ondansetron till past the first tri, if it might be worth asking for Xonvea. It has helped a few on here, including abbs1. Don't rush back to work before you've had a big improvement.
Pleasedontworry I am wondering myself why sufferers on here are being treated so insensitively. I can only suppose it is due to a lack of beds due to the pandemic.
kalidasa Fingers crossed it's iike your first (which was bad enough, goodness knows). Great advice from you, thingymaboob abbs1 and everyone.
Apologies to anyone rudely ignored.

@thingymaboob honestly the first time I came I was given 3 of the IV drips and I felt it made a difference (even though it lasted 1 day but I could feel better) whereas now they've only given 2 so I go home feeling the same as I come in feeling.

Surprisingly for me, bloods are normal, all other observations come back normal so even though I feel light headed and dizzy they say you won't collapse☹️ I feel it'd definitely reduce the waiting times if we weren't having to come back at silly times because were being made to wait until it's unbearable!

@LucindaE ahhh I haven't heard of that, I'll try and mention that hopefully it helps because 4th time having cyclizine and I really don't expect much!

@meg232xx hope you're feeling better? I got the same lecture, fluids are only temporary and that I need to drink fluids so that I don't come in. Yes I'd love to do that but I can't? They don't understand!

Honestly ‘relying on fluids’ - we all bloody rely on fluids, they’re fairly necessary and if everything comes out the way they usually go in common sense dictates they need a different entry point.

@theconfused see if you can get Xonvea. Its a licenced medication and is considered an antihistamine that is to stop you feeling sick so you arent sick. Its helped me so much this pregnancy after my first was horrendous. Ive not been admitted once this time and only vomitted once. Stl have mad nausea now and again but its been a lifesaver for me. Ondansatron from when i had it in my first pregnancy 2019-2020 I was told the risk was mainly between 6-8 weeks which is when the cleft palate and heart is developing so is when the very small risk is. I would ask for it as its helped so many including me. In my last pregnancy I took it from 7+4 weeks mostly via IV in hospital where i spent nearly every day up until 12 weeks for fluids and iv medication as no tablets stayed down or water so I didnt really have a choice as other medications didnt worm. Steroids was my only option in the end. If Ondansatron and or Xonvea dont work can you ask for them? Baby was born completely healthy and perfect. He was small only due to late diagnosed pre eclampsia.

@meg232xx I cannot believe what I'm reading! That is absolutely disgusting the way you have been treated. For a Dr to say fluids are only a temporary fix, our bodies rely on fluids to stay alive! Surely he knows this and the whole reason youre there is because you physically can't hold them down. I feel so angry and frustrated for you. I'm so glad your CM has managed to get you back into hospital. Can you maybe say you aren't being discharged until the CM clears it? Also as youre still being sick in hospital depending on how far along you are, can you discuss steroids? I had them from 12-20 weeks. 10 days of IV ones at home, then 3 weeks of tablets at home weaning down to none, then repeated again as sickness returned.
Can the CM speak to MAU about a proper care plan for you? Mentally and physically its clearly affecting you and you need support, not to keep being fobbed off by people. I'm so sorry youre struggling so badly.

@abbs1 agreed. There seems to be a lot (more than usual?) fobbing off going on.

@LucindaE Is there anyway if the women currently suffering so badly and being denied proper medical help in hospital would be willing, could they write down which hospital they are being treated at so we can speak to Pregnancy Sickness Support and see if they can speak directly to the EPU and MAU at these hospitals about the treatment women are currently receiving?
I am so angry and upset for them all. It is ridiculous the care that is being shown. I know COVID is still around but these mums and babys lives are being put at risk due to the lack of care here. The fact 2 women are being told fluids is only a temporary fix is so bang out of order. Women are not choosing to come in for fluids, they physically can't hold down anything and their lives and babys life is at risk here due to dehydration.
I never experienced this at my hospital. I was able to go in everyday for fluids, medication etc and received it willingly without 1000s of questions and just by looking at someone to determine how sick they are.

Sorry for the rant, but something needs to be done to sort this out. I know these women are so sick right now they probably don't have the energy to fight this but if theres something we can do, I feel we need to do something.

@abbs1 thank you so much, I'll definitely try to raise it with my midwife, I haven't met her yet so hopefully once she's introduced it'll speed things along!

Stupid question, but is a CM (I'm assuming community midwife) the same as the ones you visit in your GP surgery?

Sorry my brain is completely gone these days!

[quote thingymaboob]@abbs1 agreed. There seems to be a lot (more than usual?) fobbing off going on. [/quote]
Its crazy! I know the NHS is struggling, but this is crazy the amount of women being refused or denied emergency treatment to keep them and their babys alive. Im honestly gobsmacked what I'm reading here. Is this happening all round the UK right now??

@theconfused some of the community midwives (CM) are but some aren't. Mine both times have been at different clinics but my hospital care has been under same hospital.

I really hope you get some help very soon.

Why is it that I feel like I’m having a good day and get overexcited? No longer a good day, or at least not a good evening…

Does anyone find that with cyclizine it’s harder to actually be sick? So you feel sick, need to be sick and are sick but it’s harder to bring thins up? This is gross, but a good few times I’ve been violently sick, so much so that I wet myself, and at the same time I can feel chunks of vomit sticking in my throat and going back down and it scares me that I might choke on it (I don’t…). Anyway, does anyone know what I mean? It’s a bit scary…

@Pleasedontworry I had this a couple of days ago. I had a really good morning and thought I’d turned a corner. Then I was throwing up for the next day and a half. This morning I’ve woke up feeling a bit better again. It’s so frustrating. It puts me in such a bad mood getting a taste of what it could be like.

I didn’t get on at all with Cyclizine for that very reason. I still felt sick but found it hard to be sick. Bringing up chunks is horrible. I get what you mean about feeling like you’re choking. I’ve felt like this. I try to stay sat still and upright after I eat for a couple of hours. Sometimes it gives my body time to digest the food. If I lay down soon after eating quite often I don’t digest the food and bring it up several hours late. Also identify with the wetting. I’ve done this loads with this pregnancy. I didn’t so much with my ds so I do wonder in my case if it’s a pelvic floor thing after having one baby.

I hope you have a better day. Xx

@meg232xx and @theconfused I’m so sorry to hear about your bad experiences in hospital. They should know how to treat hyperemesis considering it can be so dangerous for mother and baby. My local hospital has already offered me open access if I feel I need fluids and meds. Luckily I’ve not reached that stage but I’ve found it reassuring to know it’s there if I need it. The last thing you need is the stress of trying to get treated. They should be seeing you every day if that’s what’s needed. I hope things improve for you. Definitely speak to PALS when you feel up to it. Xx

@Pleasedontworry hey! I've had cyclizine before and I've been given it again but that's exactly how I feel! I raised it with the hospital but I got the usual "this isn't meant to stop you vomiting it's just to reduce the times you have to vomit" speech🙁

I also feel very bloated with it too, and symptoms of indigestion too!

@Catconfusion I get given open access too which is why I thought that you'd be allowed to turn up for fluids as and when you feel you need it, but the whole ketone based thing really doesn't help! Going around in circles at this point!

Hope all you ladies have a better day today💕

@theconfused it’s so odd. Open access should mean treatment when you need it. Also surely prevention is better than waiting until you’re dangerously ill. I really hope they help you get it under control. Xx