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.

@LucindaE thank you for all of the tips! Two days?? It's been five weeks of not keeping anything down, but it's been eight since I've had any fluids. I just don't know if there's another test they can run to prove I'm dehydrated.

I've not heard of the Pregnancy Sickness Support team before, so I'll give them a call for some advice. Thank you 💗

Yes, my OH is coming with me on Thursday. I'm hoping appealing to my community midwife (she's super lovely), and explaining how bad I'm feeling and she might call them for me. I'm genuinely just terrified that things are going to get even worse, and things start shutting down.

I have Fortisip milkshake drinks (a mix of protein and nutrients) from the dietician at the hospital, and I've been trying to drink three of those each day. It all comes back up, but I'm hopeful something is being absorbed so I keep trying when I'm awake.

I've been trying to eat and drink where I can, but yesterday was a rough day. I need to keep a journal of my "vomiting episodes" (not my words), and yesterday I hit 79 🙈. I slept for 18 hours of that day too, so it was bad for me.

I hate being pregnant, and I just keep trying to remind myself that eventually I'm going to get a baby from all of this, but it's hard. I'm just so exhausted.

Seriously thank you for all the advice, there's some drinks on your list I haven't tried yet, so I'm going to get the OH to go and get them. At this point, it's a matter of finding what comes back up best.

How are you today @meg232xx ?

I had bad cramps and almost no nausea for 24 hours until yesterday evening and thought that was definitely it, but the cramps stopped last night and I woke up this morning feeling much sicker again. Managed being out and about this morning but feel pretty rough this afternoon. So possibly this pregnancy is back on. I am 5w today. With DS1 I started vomiting at 6w4d but had been out of action for a bit by then with nausea, and once I started throwing up I lost control immediately and was in hospital within 48 hours. With DS2, despite every possible pre-emptive drug, I was totally debilitated by the nausea from about the 4w mark and despite all my best efforts (and ondansetron!) the vomiting started about 6w. I haven't taken any medication yet and I am still functional so I am really hopeful that if this pg continues it will be more like DS1 than DS2. Still feeling a bit scared though, trying to stay in the moment and take it a day at a time. Met DH for lunch today which was really nice and saw where he's working (he's just started a new job).

Hope everyone is hanging in there.

@Pleasedontworry I'm sorry that this week has been hard for you! Sometimes it does get bad for a little period, so praying it improves soon 💗

Good on you for trying to eat, even if it did come back up, you still did amazing. (I hope that doesn't sound patronising, I just applaud myself when I try).

Could the UTI be making things worse? The doctors mentioned to me that they could. Hopefully once you've run your course of antibiotics it settles a little.

Seriously, if only we could just have IV's all of the time and didn't need to bother with oral meds. Keeping tablets down is one of the hardest parts of the day, and antibiotics are usually big tablets.

If you feel the cyclizine is stopping working, could you make an app with the GP to try adding something else?

Sending lots of love that your UTI clears up soon and this harder patch settles 💗

@kalidasa I've spent the majority of the day either sleeping or vomiting, but I've currently not been sick in about 45 minutes, so I'm classing this as a small win.

I'm sorry you're feeling sicker, but that's a positive sign. Fingers crossed! Is there anyway you could be referred for a scan? My community midwife referred me to my hospital Early Pregnancy Assessment Clinic at 7 weeks, to get confirmation. Maybe that could help get you piece of mind!

I'm sorry DS2 was so rough, so fingers crossed it's only the severity of DS1 for you. Crazy how that's the goal 😂

Oh that's amazing! Congrats to OH 💗 one day at a time is all you can take it! Seriously wishing you all of the best 💗

@meg232xx goodness, it really sounds like you need to be in hospital again. That's a lot of vomiting, I think all us seasoned vomiters will agree that that is excessive even for us. You poor thing. I just think waiting until Thursday is too long. Have you bought ketostix so you can see how many ketones you have in your urine? You can buy them from Amazon. I knew I met the stupid ketones criteria for fluids by monitoring my own ketones.

@thingymaboob It's not always been this intensive (like thinking back to the earlier days), but for the past few weeks, I've been hitting about fifty times each day. That's not including retching and things either. It's not a lot each time, but it's definitely not good.

I bought the ketone strips and they arrived today—I love prime—but I've not actually used them yet. 💗

I too think I need admitted, even if just for a few days to get some help, but they're insistent that I'm not dehydrated. The doctor said that "I look like I'm doing better" (she saw me once in hospital), and that "I just need to keep doing what I'm doing".

I'm praying my CM will be more help 💗

@meg232xx next time you have a wee, dip it and see what's going on. If you need any help interpreting, I'm an expert! Ha!

@meg232xx you definitely should not be at home with that frequency of vomiting. Even vomiting every hour or two consistently is too much, because you can't stay hydrated. Start doing the ketone sticks regularly, and then use that when you call the ward / MAU -- you can say "I have 3+ ketones" or whatever. If they get sniffy about you checking your ketones yourself (though ridiculous if they do as this is standard for e.g. diabetics) fib and say the GP told you to in order to make sure your condition was being managed safely.

@thingymaboob @kalidasa so I just did the ketone strip and I'm confused. I read the instructions, and I've got a bunch of urine sample pots so I know it wasn't contaminated or anything, and when I matched the colour it was to the 8. I did three (I'm obsessive and wanted to make sure I didn't do it wrong).

But yesterday they told me I had none—not even a 1+ or traces, simply none.

The instructions did say if it was strongly coloured urine it could give a false positive—do you think that's what happened?

Sorry for all this talk about my urine 😂🙈

But I'm genuinely only peeing twice a day, morning and around evening, and my urine is dark because, dehydration.

I'm debating ordering another pack in case these are faulty.

@meg232xx I'm not surprised to be honest. With the amount of vomiting you describe and how little you've been able to keep down over the past week, I'd be surprised if you weren't in ketosis. Ketones can change quite rapidly in both directions, within a few hours. But I also think it's possible someone screwed up at the hospital yesterday and either messed up the test or got it muddled up with someone else.

@kalidasa so do you think the strips were accurate?

I'm just so confused about how it's showing at an 8 (I don't know what that means by the way), when yesterday there was nothing.

I know that I'm dehydrated, but they sent me home yesterday and told me I was fine, so it's got me anxious.

I had a small breakdown about half an hour ago, I've thrown up a lot in the last hour and my OH suggested calling the MAU, but I'm scared I'll just be sent home and they'll think I'm wasting their time.

I want to try and tough it out until Thursday, which I told him, when I can talk to my CM, but things have been really bad today and I don't think I can.

For the past few days my OH has had to help me up and down the stairs because I got too dizzy and fell down them, and it's like how can you say I'm not dehydrated when these are the lengths I'm having to go to? (My toilet is downstairs and bedroom where I spend all of my time is upstairs)

Honestly @meg232xx I would go straight to A&E if I were you, or the MAU if you think they'll take you seriously. Yes I think the strips are definitely accurate and you should be admitted as an emergency.

@meg232xx Im so sorry Ive only just started reading through your messages.
I would start by putting in a complaint about your care through PALS for your hospital care which you can do online. The way they are treating you with not giving fluids is not right and not fair seeing how much you are struggling and the severity of your sickness and your test results. They cannot base the severity of your sickness on a dipped urine test.
I suffered awfully in my last pregnancy and was on IV and tablet steroids from week 12-20 in hospital and then on home visits for 10 dayd before switching to pill form and weaning down. As soon as I stopped the sickness was back within hours so repeated it again and after 20 weeks it worked and ondansatron and metoclopromide tablets was enough. The fact your only passing urine twice a day, your lips are cracked etc, you need to be in hospital on fluids and IV medication to help you. Also your BP and heart rate all over the place sounds like a thiamine deficiency which happens when you're being so sick and you probably need some supplements. I needed them and my bp and heartrate improved.
Definitely speak with Pregnancy Sickness Support as they can give you a peer support person to help guide and advocate for you.
I'm so sorry youre having to fight so hard for treatment that you need and being turned away.

If your partner can come with you I'd go in and tell them you want to see a gynaecologist consultant who hasnt seen you yet to do a full assessment on you. Sometimes having a fresh pair of eyes helps. Thats what got me steroids as I was in hospital everyday and a and e on weekends from 7-12 weeks as i needed fluids and IV ondansatron just to keep me and baby alive as i couldn't even hold water down and it was having someone else be like hey, this is crazy we need to re assess medication and find a better treatment plan that got me the help I needed.

Stay strong hun, we are here supporting you.

@meg232xx just seen your most recent post. Please hun go to a and e. In all honesty I'd dial 999 and go in via ambulance. Normally I wouldn't say do it, but the fact your dp is having to carry you up and down the stairs as your too weak you need to be helped to hospital so that they can see how sick you are and you don't sit in a and e for hours without a bed. Also in this heat being dehydrated is very dangerous. You definitely deserve an ambulance and proper care in hospital.
Either write down or get DP to go with you and write everything of wants going on that you can give the Drs or the paramedics can pass over to them so you dont have to repeat yourself 1000 times.
I hope you get the help you need really quickly. Im so sorry its been so horrendous for you.

@kalidasa @abbs1 can I go through A&E when I usually go through the MAU? My first admission was through them and they transferred me up to the MAU (once I got seen of course, but they did start the fluids down there), where I was admitted onto the ward.

Every time since then, I've called the MAU and they've taken care of me.

Because if I can, I'll get ready and go up now!💗

I'm so sorry I'm asking all these questions, and I really love that you're all so willing to advise 💗

@abbs1 yeah we've got three fans on in the bedroom to help with the warmth, especially since the warm weather makes the sickness worse!

I hope you're all coping in the heat 💗

Yes you can go through a and e or MAU. Please if you can don't drive yourself hun as you sound too poorly (not to patronise you, just stay safe) , get someone to take you to MAU if they will see you. The amount you are vomitting/retching is excessive and there is no way your staying hydrated. Doesn't matter what your ketones say. If MAU wont take you go to a and e. You need fluids etc asap and get your vomitting under control. Keep us posted. x

@meg232xx
There's absolutely no question that you need hospital. I doubt the strips are wrong. You have to go. I wouldn't call 999, not because you don't "deserve" it but because paramedics (I am a Paramedic myself) don't really understand this condition and the way the phone triage works I doubt you'll be prioritised (they might even get a clinical advisor to ring you back and so on... this will cause delays) so I think the quickest way is for your DP to take you, if that's possible. You must have a short cut to the MAU now? That's got to be the most efficient route to treatment. Just because they turned you away yesterday doesn't mean they will today. Take the strips, take your urine in.

@thingymaboob thanks for the advice on that. I had no idea that could be what happened and could end up delaying everything. Just want @meg232xx to get care asap and to be taken seriously. MAU sounds like the best option then and if they say no go to a and e.

So I called the MAU to see if they wanted me to come in, I mentioned the tests and how I've still not kept fluids down since I was in on Monday, and they told me that I can come in tomorrow morning at 8.

Apparently if I come in tonight for fluids, they'll need to admit me and they don't have the bed space on the ward.

The midwife I spoke to was one I've met on the wards before and she was a little critical of me needing to come back, citing the fact that it's not been long since I was last discharged.

I just reminded her that when I went home I wasn't keeping fluids or food down, and part of my discharge care deal was that I could come in for fluids when I needed them.

She wasn't happy, but she didn't refuse treatment so I see that as a win.

I'm a little upset I can't go in tonight, but at least tomorrow I get the chance to get fluids! I'll do another one of these tests tomorrow morning, so I can take that in with me.

Thank you all for the advice! I'm going to try and get some sleep since it'll be an early morning.

Wishing everyone the best 💗

Yes @meg232xx I think you should go straight to the hospital. Try the MAU but if there is any hint at all that they are not taking you seriously, go direct to A&E. Let us know how it goes.

Hmmmm, 8am tomorrow? Not sure that's a satisfactory solution when everything you've said suggests you need fluid sooner. I'd be tempted with A & E, and this is always an option over the next 12 hours so don't hesitate to go.

@meg232xx I'm so sorry they wont see you tonight. Could you go to a and e tonight and at least get home fluids started and medication and then get referred to MAU in the morning? It shouldn't matter how many times you need to go in, they should have a back up plan if their beds are full or advise a and e.
I went into my unit every single day for weeks and they had to find space for me even if bays and beds were full and a and e on weekends.

I feel so upset for you that its such a battle to get urgent care.

@thingymaboob would @meg232xx get somewhere to lie down in a and e for the night if she went from a paramedics view on it? Would be awful to sit for hours and hours with no bed but feel she needs help tonight not another 12 hour wait.

meg252xx I do hope you get admitted: I so agree with kalidasa abbs1 thingymaboob and everyone, you must be seriously dehydrated and obviously are very ill if you have to be helped up and downstairs, etc and haven't been retaining fluids in a long time. It's so bad that the hospital were so dismissive. They shouldn't risk your health like that. That is excessive vomiting. As others say, do keep us informed. Much sympathy.
thingymaboob Sorry things are bad. I had a foul taste, but it was more like you can imagine a drain would taste! I used to suck barley sugar (and the travel sweets someone mentioned recently) to get rid of it, but that does seem to encourage more saliva...
Pleasedon'tworry Much sympathy about the UTI. Seven up is a good choice.
kalidasa I am glad that the pregnancy is 'on' again - but it must be unnerving for you waiting to see how bad the Hyperemesis is.
Apologies to anyone rudely overlooked...