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.

Just wanted to send 🤗🤗 to everyone esp during this mini heatwave coming this week as I know heat when your so poorly is awful.
Some tips I found in my last pregnancy when the heat was its worst was to put cardboard in any windows where the sun was beating through them and keep all the curtains shut to help reflect the heat out and keep the window shut. Also if you have any empty plastic bottles from lemonade or cola, fill them with water 3/4 full and freeze and set infront of the fan and it helps to blow cool air round the room. Another one which felt amazing was filling a plastic bag full of ice cubes and putting in a pillow case on the back of my neck while lying in bed. Was so refreshing.

I know in the heat you can get dehydrated a lot quicker as it happened to me and made my ketones go up very quickly from sweating so much as well as not holding fluids down so please don't hesitate to seek help from hospital if youre struggling with fluids even if your ketones aren't at the point the hospital says.

I have massive empathy for anyone going through this. It's awful. I had it with 3 pregnancies. And I never found a GP who understood how bad it was. The first time I went to my GP and I was crying and explaining I couldn't even keep down sips of water, couldn't sleep, vomited on the tube platform and at work all day and felt panic. She was visibly pregnant herself and basically eye rolled and told me to take ginger. I bought a ginger capsule at a health food store and more or less instantly vomited it and it felt like it burned my throat! I tried sea bands. I tried a weird cassette tape of random noises that were supposed to distract my brain. I only got through it because I went to visit Canada and got a prescription for Diclectin. I couldn't have had 3 pregnancies without it. No idea why they don't have it here.

Diclectin is a drug authorized in Canada to treat nausea and vomiting in pregnancy (i.e. morning sickness). It is a fixed dose-combination product of doxylamine (an antihistamine) and pyridoxine (a form of vitamin B6). The doxylamine/pyridoxine containing products have been used in Canada since 1957.

@Gmom the drug you are talking about is called Xonvea and was finally legalised in the UK in 2018 but hardly any GPs know about it. Also its very expensive to prescribe so not all NHS trusts have it available. Thankfully my NHS trust do and the GP let me have it due to such severe hyperemesis in my last pregnancy.
I hope it is made more readily available for more women in the UK and for more GPs to be made aware of the medication so less women suffer.

@abbs1 that is so good to hear that the drug that helped me so much is now available here in some trusts. I hope that access expands and that those that need it can get it.

Hi all, sorry for radio silence- @abbs1 @LucindaE and anyone else I missed- thank you for your msgs/replies. So many great tips (I’m trying everything I can). Have had a few really bad weeks so I’ve mostly been hibernating and staying off screens- I can’t even cope with radio, which is shame as I’m a massive cricket fan so normally have 5live on. I don’t know where the weeks are going, it’s all one big pukey blur. Every week that passes is another closer to meeting my baby and therefore not being sick.

Sounds like a fair few others are going through the mill, thoughts and positive vibes headed your way, it’s honestly been so comforting knowing I’m not the only one going through this. I’m so hopeful (naively?!) that as my first trimester ends, so will the debilitating hg

Here’s to a good week for all of us…!

Sorry to everyone struggling. How did the rest of your daughter's birthday go @ohihateithere ?

I'm feeling quite pessimistic about this pregnancy now. I am five weeks tomorrow and the last 24 hours I have hardly felt sick at all. Still dizzy, but not really nauseous at all, and I have constant low-grade cramping too. I'd like to believe it was just luck of the draw but it seems much more likely that it's failing -- especially with the fading symptoms, and given my age. Bit depressing, as I was beginning to believe I might be able to have a slightly better time of it than with DS2! Can't believe that I actually wish I felt (slightly!) sicker.

@MrsNovember I had two very severe HG pregnancies, with weeks and weeks in hospital, and even with DS2 which was the worst it did improve after 14 weeks. I threw up all the way through but a real, gradual improvement did start around then and I think it does for almost everyone -- something to do with the placenta taking over I think?

Hi everyone! I'm new to this thread, having been recommended by another patient in the hospital, but I'm 18+0 weeks with my first child, and I've been suffering from hyperemesis since week four, although I wasn't diagnosed until week eight.

I'm currently struggling really bad, and I've had seven hospital admissions, my last one having me there for 16 nights.

I currently take ondansetron, metoclopramide, cyclizine and prochlorperazine. I was on steroids for about seven weeks, including IV steroids at the hospital, but they made no difference, and due to the risks, we stopped those.

I've had a very up and down pregnancy in the beginning where things would get bad, I'd get a new antisickness, I'd have a good couple of days where although I was always nauseous, I could keep food and water down.

But it's been a constant battle of being in and out of the MAU, and being admitted. For the past fourteen weeks, food and fluids have been my nemesis and I've tried everything I can think of, that google can think of, and that's been recommend to try and ease the symptoms.

However for the past five weeks, I've not managed to keep food or water down—the longest consecutive period—and it's starting to wear on me. I've had one lengthy stay at the hospital in this time (16 nights) and they don't have any other courses of treatments for us to try.

I'm coming for some advice, some tricks, anything to give me hope. I spend all of my time in bed, I've not worked in fourteen weeks due to constantly being dehydrated and weak, and I'm struggling mentally. I cry constantly, because I feel like a terrible mum already.

I went to the hospital today, due to being severely dehydrated and I left in tears. I'm terrified, because every other time I've went in they've given me fluids as a rapid rehydration but today my urine showed no ketones so they sent me home. Despite the fact that my urine was extremely dark, that my lips are cracked and scabbed, despite the fact that I'm so dizzy and my blood pressure was low and my heart rate was 160.

Apparently ketones show dehydration and the lack of them shows I'm fine—even though I know I'm not. In fact the doctor told me to "keep doing what I'm doing, because it's working" and to not "change anything up". She saw me when I was admitted, and said I actually looked better today too. No matter how much I told them I'm not keeping fluids down, how I've not had any liquids whatsoever stay down since I was discharged nearly two weeks ago, or how I'm feeling, the lack of ketones means I don't get the IV treatment.

I'm absolutely terrified. I know my body, this isn't the first time I've required treatment and I'm scared that things are going to get much worse (because I did wait a week before going in) and I'm going to be hospitalised again.

Does anyone have any experience with this, and can advise? I'm 22 years old, and the first person in my family to suffer with hyperemesis (in fact, none of them even had morning sickness).

I'm sorry this was such a lengthy post, I'm just trying to cover everything. I've read through the discussions on this post and I'm sorry to hear how badly everyone else is struggling. I'm glad I've found this thread! 💗

@meg232xx goodness gracious! You sound like you've really been through it, and are still going through it. So much sympathy for you. The whole ketones thing really pisses me off too. It's not an indicator or dehydration. With any other condition they look at things like urine output, skin tugor and BP / HR etc. I'm sorry steroids haven't worked for you. Is the Dr you're seeing an obstetrician? All you can do is keep going back if you can't keep fluid down.

@LucindaE I am on cyclizine but I kind of feel like that has stopped working?

@kalidasa DD had a lovely birthday I forced myself to be honest and I don't even know how I managed it as I felt dreadful but glad that I did now as it would have been a shame to miss it.

@thingymaboob it's been tough, I'm not going to lie, but I've read through this thread and it's reassuring to know I'm not the only one suffering.

So the doctor I spoke to today was from the antenatal endocrine clinic at the hospital who wanted to check how I was doing due to stopping the steroids, and she sent me around to our maternity assessment unit when I told her there's been no improvement since I was discharged. Once there, they dipped my urine and told me there were no ketones so I was free to go home.

I asked to see the doctor again, and she came back around and said that I must be doing enough to keep myself hydrated, even if it doesn't feel like it. I tried to explain how I was feeling, but she said that could be due to any number of things and that since there were no ketones, I'm not dehydrated.

My OH wasn't there but they quite often listen to him—it's almost like they dont believe me when I tell them how bad it is—so that only made me more upset.

The midwife on the MAU did check my blood pressure, heart rate and temp and only my temp came back normal!

It's just completely shocked me that after fourteen weeks of going back and forth and getting the fluids when needed, that they've decided I can't have them today.

I already feel anxious every time I need to call up, because I'm constantly there (seriously, it's been three times in the last fortnight), but I wouldn't go unless needed.

I’m so stressed, been poorly today and eventually got to see a gp who told me that there’s no way I should be taking ondansetron prochloperazine and cyclizine, so she’s going to ring the hospital as she thinks they’ve made a mistake prescribing me all three and she’s going to take me off prochloperazine and cyclizine, I’m so stressed that I’m going to end up really ill.. 😭😭

@Secondtimemamma I'm so sorry that you've got extra stress on top of this. Do you have enough meds to keep you going for now?

Hopefully the hospital explains to the GP that they are needed, and it'll be resolved.

If all else fails, could you see a different GP at your surgery? 💗

@Secondtimemamma I'm on exactly what you are - ondansetron, cyclizine and prochlorperazine. I was prescribed by GP initially the ondansetron and cyclizine and the hospital added the prochlorperazine when I was admitted. I have had repeat prescription from GP and the medications were reviewed by my consultant obstetrician at my 15 week appointment and nothings been mentioned. Think your GP is having a panic over nothing!

I feel like crying my eyes out at the worry of not being able to have these tablets even tho they’re not 100% working, how much worse will I be without them? She’s going to ring me once she’s spoken to the hospital but if she takes me off them I’m going to get another appointment with a different dr tomorrow! As if people that have this awful illness aren’t going through it enough without the added stress of gps removing needed medication 😭 x

I have enough tablets to last me about 10 days max x

@Secondtimemamma don't panic -- that's a really standard combination for severe HG, I was on those three together too like several others on this thread. I guess your GP just hasn't encountered it before because severe HG is not very common. Don' stop taking anything for now and hopefully the hospital will put her right.

@meg232xx I'm really sorry to hear about your experience. I was also on steroids for months with DS2 (back in 2015), but they did help me a bit, definitely more than anything else. They did explain to me at the time that if they don't work, as they don't for everyone, then basically there is no other option than to stay in hospital for hydration until the HG naturally settles down. It is really really bad luck for you that they haven't helped, and it is really stupid of the MAU not to take your history into account and take seriously what you said today about how you feel.

Ketones do not measure dehydration they measure starvation. I am a good example of this I still had 4+ ketones after a week continuously on a drip in both my pregnancies, because I couldn't keep any food down at all and hadn't been able to for weeks. Obviously after a week and dozens of drip bags I was not deydrated but I was starving. In most cases of bad vomiting, lack of food and dehydration go together so they function as a rough proxy but some women go into ketosis more slowly than others and there are other variables too. They shouldn't be relying on ketones only to assess whether or not you are dehydrated. If you can bear it I would go back tomorrow, stress how unwell you are feeling, and hope to see a different midwife / doctor. Could your husband go with you tomorrow? It's depressing but true that they often pay more attention to a DH making a fuss, I've noticed that as well.

@Secondtimemamma do you have enough of the tablets to get you through the night?

It might not be a bad idea to make the appointment for tomorrow anyway (unless this doctor was going to call you back). The extra stress won't be good for you, and this might alleviate it slightly, just knowing there's a plan in place.

At the end of the day, you know your own body and even if the meds don't 100% fix it, at least they're making a bit of a difference.

Ten days is enough for now @Secondtimemamma! Hopefully you can make that appointment and get a second opinion 💗

@kalidasa so when I was in for sixteen days, I just wasn't improving. As is the norm with the NHS, they were always super busy and it took hours (genuinely, at one point I waited seven with repeated buzzing to get their attention), to get my meds and once I was well enough (my potassium levels had been extremely low), that I could go home, I got discharged.

I've been into the MAU three times since being discharged, which was part of the deal (that I'd go back when I needed it) for the rapid rehydration, so that even though I'm not able to keep fluids down, I don't get too dehydrated but today they just flat out refused it.

I have an appointment on Thursday with my community midwife, and I'm not sure if I'm just better off waiting until that to see if she could refer me up there, and thankfully my OH will be coming with me.

It sucks, but they really do seem to listen to him more than me.

@meg232xx what an awful time you've had. My longest single admission was nearly four weeks with DS2 my total time in hospital with him was nearly two months. But they did eventually manage to stabilise me on IV steroids and a cyclizine pump, then spent a week or so switching to oral delivery so I could go home on oral steroids and oral cyclizine. I had a similar arrangement (supposedly) with the MAU but I think how well these things work in practice is always a bit variable the consultant or whoever says one thing but whether or not the nurses / midwives on the ground actually follow it is another! It's unfair, but it probably doesn't help that you are quite young as well. I saw this a lot in hospital -- young women really being given short shrift, and it's so hard anyway to be assertive when you are feeling horribly ill.

I know it's so hard to fight your own corner, but I would consider lodging a formal complaint, or at least making it clear that you are considering doing so, if you get nowhere on Thursday. But I'm worried that Thursday is quite a long time to wait if you are keeping nothing or nearly nothing down. Could you call your community midwife tomorrow?

@kalidasa that sounds awful! I'm sorry it was so hard for you.

I can normally go about five days before the effects are so destabilising that I can't function, and it's been seven. I'm hoping I can make it until
Thursday, because my community midwife only works Monday, Thursday and Friday.

It's been a delicate balance of not going in too early (because they seriously will just send me home if my ketones are only +1—I wish I knew what that meant 😩), but not leaving it too late.

I only didn't go in on Saturday because I knew I had this appointment today, but it didn't go as planned.

Meg232xx Welcome. I am sorry you are suffering so badly. You obviously have a severe case of this. It is disappointing that they wouldn't give you fluids when the ketones aren't the best test of dehydration. I do know that it is considered an emrgency if a pregnant woman is unable to retian fluids for more than two days. If this goes on, might it be worth another visit? it is so annoying the way they seem to take what OH's says more than the actual sufferer.Could he go with you next time; that sounds almost 1970's - but if it works...
It might also be worth phoning Pregnancy Sickness Support on 024 7638 2020 for advice on the topic. They will phone back with good advice. You probably don't need my normal spiel but I will add it just in case. Ignore the bits that tell you what you already know.
I include my normal spiel that might help. Most sufferers find that they improve a lot at some point between weeks 14 and 20. Even those who are unlucky enough to suffer throughout generally are not as ill later on as they are in the first part. A good anti acid can make a surprising difference to the sickness. Kesostix are worth buying online or from a chemists, as while they aren't they best test of dehydration, hospitals take them seriously. When reporting on the vomiting to doctors, remember to emphasize the number of heaves in each vomiting session, as doctors tend to count these as 'vomits' and this can lead to their underestimating the severity of your symptoms. Besides drinking through a straw, here are some drinks that have helped others: full sugar flat coke (if you don't find it too acid), ice lollies, the juice of tinned fruit, Lucozade, apple juice, Ribina, Dr Pepper, soda water, Elderflower water, tonic water, ice cubes, Iron Bru, lemonade, lemon squash, orange squash, orange juice (if not too acid), fizzy orange, 7Up, isotonic drinks, sips of chocolate milkshake (maybe soya), fizzy water, apple juice, Robinson's fruit drinks, Rubicon sparkling mango drink , raspberry Lucozade sport and frozen ice cubes of flat Lucozade sport . Foods of a sort include tinned fruit, cuppa soup, nibbles of crisps and chips, cheap ice cream, Scotch pancakes, bagels and biscuits, potato smileys, slices of melon and mango. Protein drinks have also been mentioned.
GmomThank you for coming on to encourage others. At last that drug is available here!
Secondtimemum I do hope that your GP soon gets confirmation that is the combination you need from the consultant.
ohihateithere I am glad DD had a lovely birthday, and you were able to participate. Can you get something as well as or instead of Cyclizine, as it clearly isn't helping you enough?
MrsNovember It is very difficult with screens. I hope you get some rellief soon.
abbs1 and thingymaboob Good advice as ever. How are things?
kalidasa Great advice as ever. I am sorry you have concerns that the pregnancy might be failing. That is nerve wracking.
Apologies to anyone rudely ignored, or whose name I have got wrong!

@meg232xx glad you've got a supportive partner. You definitely need it!

@Secondtimemamma so many of us HG sufferers are on that combination. Think this GP is just lacking experience. If I were you I wouldn't come off them. Hopefully you'll speak to another GP with some sense.

@LucindaE hiya. I'm definitely having a worse patch now at 17 weeks. Nausea is really strong at the moment. Vomiting once or twice a day but like an exorcist amount. Evenings are crippling. Thank god I'm working from home. I'd probably have to call in sick if I had to go in. Maybe I should anyway.

Does anyone else get this horrible chemically tasting froth build up in their mouth? I think it must be from cyclizine. It's absolutely rank.

@thingymaboob I have that horrible taste, but I had it before cyclizine to be honest. It’s absolutely vile.

I feel like I’m getting worse this week. I made the mistake of thinking I felt ok and having a proper meal on Saturday… which came back up, painfully. Yesterday was constant nausea with some vomiting and today, aside from sleeping for most of it and waking up to be sick, has been similar constant nausea. I’ve currently got a UTI so have forced down some cereal post vomiting so I can take my antibiotics, and trying to hold on to it for an hour. I’m torn between thinking this would be much worse without the cyclizine and that the cyclizine is stopping working. OH has brought me some 7UP home as sometimes I can manage that.

And still, I feel like I’m moaning reading some of your stories. @meg232xx - I’m angry for you, you poor poor thing. If you have the energy please complain, or have OH do it for you. Much love x