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.
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.
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.

Ondansetron and constipation; I'm finding that 2 x 15ml doses of lactulose a day is keeping me moving, just about (about once every 3 days). It's difficult and I have to ahem give a helping hand (gentle but firm pressure around the edges seems to ease the passing of each little malteaser shaped poo - possibly more info than you need, but if it might help...). You certainly shouldn't need to dial back on meds to ease toileting. Your GP needs to give you something stronger to help you poo.

I'm taking 30ml of lactulose up to twice a day to keep things flowing. Lactulose is a pregnancy essential for me, even more so on the ondansetron.

Oh how wonderfully glam pregnancy is!

Aagh! My pc hub needed changing, so it was down all day...
TwoDrifters Wonderful news.
After a horrible pregnancy, revel in your bundle of joy!
Welcome to Anya212. I am Mother Hen these days. I suffered years ago . I am astonished that the doctors insist that you don't have Hyeremesis, with such weight loss. You have had great advice on here already.I am sorry you are still suffering. Some sufferers do get relief even after 20 weeks.
Welcome to JamJarJen . Congratulations on pregnancy, so sorry about your previous mmc. They are really distressing. The statistics are massivley on your side, but a pregnancy after a loss is nerve wracking. Three admissions alreaydy is tough. You also have had good advice already. I can only add my usual spiel about favourite drinks, etc below.
Welcome to Alliie06 I remember awful phlegm at one time, too. It is really vile. I am glad you've got something for it. Sorry about unsympathetic boss; ironic, as you're a nurse. Don't let him push you into returning too early. Sufferers on here frequently make that mistake, and have to go off sick again. People who tell you to 'toughen up' frankly don't know what they are talking about. The difference between this and normal pregnancy sickness is the difference between a mild headache and a severe migraine.
Do any of these liquids help? Flat full sugar coke, ice lollies, the juice of tinned fruit, ice cubes, Elderflower water, soda water, fizzy water, Dr Pepper, Iron Bru, Lucoazade, Robinson's fruit drinks, sips of chocolate milkshake (maybe soya), orange squash, fizzy orange, orange juice (if not too acid) and lemonade. Some foods of a sort: tinned fruit (especially peaches), cuppa soup, cheap ice cream, Scotch pancakes, nibbles of crisps and chips, baked potaotes and slices of melon and mango. Also, some can endure biscuits and there is eallison's intriguing new recipe toast with goats cheese and pear.
SeaEagleFeather Sorry you have been ill, but welcome back. I hope all goes well over in the Netherlands.
Waves to MauisLeftNipple Reastie eallison and everyone.

All is well yes thanks Lucinda :) the oldest is so happy in this school and the youngest ... well lets just say that having survived the nightmare pregnancy at all has made him utterly unstoppable.

Also does anybody have a lot of excess saliva? I am finding this really hard to cope with and have to sit with a cup to spit into most of the time.

I had this and it sounds like nothing but is awful! Towel on the pillow and if you have to go out, an empty drink carton you can spit down the straw into.

Actually if you -can- manage not to spit, that helps (although at its worst you have to otherwise just swallowing will make you sick!). Seems that the more you spit, the more it encourages your body to produce saliva. God knows where it all comes from when you can't drink anything ...

The spit thing is depressingly common. I remember someone who use to carry an empty juice carton around with her, she could use the straw to discreetly spit into, and people just thought she was drinking. Anything we can do to keep hold of some semblance of dignity.

I've had a very disturbed night sleep. Went to bed at 9.30 cos my eyes were closing. Slept til 11.30 then slept in about 20 minute bursts. So will be reverting back to staying up til midnight ish, that seems to lead to slightly better sleep and is better for hubbys sleep. This morning I've got a pounding headache - I'm confident it's a dehydration headache, so to be fair it's a miracle this is the first time I've had one this pregnancy! Just frustrating cos in actually probably getting more fluids in than I have at any other point of this pregnancy!

Thanks for the advice everyone, I’m abit annoyed at myself for not pushing it further with the GPs - I had that gut feeling where it just didn’t feel normal and was excessive. I’m still shocked at the weight loss too and I’ve mentioned earlier that was the part I was explaining the most and it really was just brushed off. I don’t understand why they haven’t gave a diagnosis. I don’t know anyone IRL who’s suffered from it and before I fell pregnant only briefly heard about it back when Kate Middleton suffered with it.

I am better than 6-14 week stage that was horrific, I’m sick around once a day now with Ondansetron but constant over bearing naeusa. I’ll be asking for that to be upped too so I’m not actually sick & have managed back at work until this week. I’m 21 weeks tomorrow I’ll admit it does feel longer tho especially when people are telling me it’s flying by!!

Anyway, the point I was getting to is that I’ve got an appointment first thing Tuesday - I could have went in today but I feel exhausted today so definately a sofa, Netflix and feel sorry for myself kinda day.

Also I don’t stop taking the Ondansetron while constipated that was just a one off, I take movicol/lactulose or the stool softeners I was prescribed. I’m the same as you it’s probably 2-3 days which isn’t ideal but it’s a lot more manageable.

Hope the headache goes soon eallison88!

I feel you in the time dragging. 20 weeks and people keep saying I’m half way. The fact that I’m only half way fills me with dread.

Anyat can anyone come with you to the doctor's to act as an advocate? Most doctors take it a lot more seriously if someone else can corroborate how sick you are

Hi all was playing catch up on messages!
I am having some extra saliva a bit now but rem it badly in first preg was awful! Had to constantly spit in tissue.
I ended up in day assessment unit at hospital. They have been amazing so that is a relief from the difficult GPs! They said stop taking Metoclopramide as it doesn’t work for all and I found it useless. Was so sick all day yest hence why I am here. Had ketones in urine and severely dehydrated. They have given me shot of cyclizine and Ondansetron but I still feel bit nauseous and dehydrated so staying over night for another drip and tablets.
Has anyone had that much meds in one day??
Also anyone who is suffering and unable to drink water pls take yourself to hospital, I know it is awful dragging yourself there but I cried with relief when they said I had ketones as I knew they would give me a drip and meds!!

Klein hope you feel better soon, pleas don’t worry about taking ondansetron and cyclizine together, I have been daily since about 5/6 weeks.

Kleino quire common ti combine a couple of meds like that, don't worry.

Kleino, sorry to hear you felt so unwell you had to go to the day unit but I know what you mean about the relief of being treated and getting some much needed help while there. I've been in 3 times, once overnight and that time they have me cyclizine, then pro something I can't remember the name of then ondansetron - at that point I would have been given anything to make me feel human.
Thanks for the advice everyone about the spitting, it had really been getting me down I haven't been out of the house in nearly a week partly due to that and feeling so ill. It's good to know I'm not the only one.

Kleino I was admitted for dehydration last week after 3 weeks of vomiting and a 10% weight loss. I was given both ondansetron and cyclizine via IV. Oh man, the cyclizine would hit me really quickly and make me all woozy, did not like it at all! Since then I have been taking both drugs in tablet form at home. Incredibly I haven't vomited since admission. I'm 10 weeks today and have actually dialled back the cyclizine, but a bit scared to wean off the ondansetron. Still amazed to be able to eat and drink almost normally (plain water is still difficult). I hope you feel better soon!

Kleino Sorry you have had to go in. So glad treatment is helping.
beanhunter Well done for fghting through to 20 weeks.I hope things get a lot better soon.
MauisLeftNipple I am so glad that you are feeling an improvement. Long may it continue!
SeaEagleFeather Great that the LO's are flourishing.
eallison Sorry about dehydration headache. I do hope you can get in some fluids to ease it.
Anya I hope you aren't overdoing it at work. Good luck with the appointment. Good advice from others about an advocate.
Jimjarjem The salivating is gross. Many carry a small pot aboutthe house, but out of it, it's awkward. The drinks carton tip sounds handy!

Reastie

Thankyou for all your replies in regards to work .. I have rang and spoke to the doctor and he has given me a month long sick note now. Just need to break the news to work. Still haven’t been able to pass stool and I ended up at the gp out of hours yesterday. They have suggested that I start the 8 sachets of laxido in 6 hours. So currently sat with my jug. Slept terrible last night. Getting pains in my tummy and I’m comcerned something is wrong with the baby. But the doctor didn’t think there was as I’m not bleeding? Ughhh hate worrying x

allie it's so hard when you feel things aren't right with baby. I am sure all is well, it's not unusual to have cramps etc. I had a few crampy pains, and sort 'stretchy' pains when moving, which is of course worrying, but everything seems to have settled now. I am glad you have an extended sick note.

Eallison. Thankyou.. really not well enough for work.. this condition makes you think.. awww i’ll Be okay soon like when you have a tummy bug. But it never comes you just keep feeling crapola. I think the constipation is taking over and the pains make me worry.. I’m at the half point way with this laxido 1L drink and thrown up. However nothing actually came up but couldn’t stop retching.. so tired today. Thanks for all your advice. Just going to have to Power through today x

Oh Allie ooor you, and constipation on top of this really does make things feel worse (if that’s even possible). Does you rkaxitive need you to drink 1 l of water with it? I’d really struggle with that as I’m struggling with fluids in general. There must be something else that doesn’t require having to get so much liquid into you.

Rubbish start to the day here as was up literally every hour at least with insomnia, feel like I’ve been awake more than asleep, then dd bounds excitidely in this morning as it’s 1st December so she gets to do advent calendar. Luckily dh taken her out this morning so I’m resting on the sofa. New food of the day I can manage is rice noodles with soy sauce. So random! Have asked dh to buy more as nearly run out but not sure if he’ll find rice nooodles.

Eal hows the headache?

Mauis that’s fabulous the drugs have helped you so much.

I had an issue with gp surgery not dispensing a repeat prescription so had to speak to gp. They were concerned as I’d been taking out more ondansetron than they said I should be taking but I can’t work out why as I’m taking the dose on the pack only. I wonder if it’s because I have one 16 pack left and put in a repeat for another (2x 16 pack) ready for when I run out as each prescription only lasts me a few has (and there’s sometimes mix ups with medication left at the wrong surgery branch so I needed to allow a few days grace to make sure I wouldn’t turn out). Gp said although each repeat only lasted me 5 days they couldn’t increase the amount per repeat as she said it costs them for each 16 pack just over £100. I feel bad to be costing the nhs so much but it’s literally the only thing helping me cope as well as I am . I would have definitely given up and had a termination (of a planned and wanted baby) if I hadn’t had it as it was just so much more awful before that I wasn’t coping at all.

I've run out of drugs!! Stupid stupid stupid! Hunting around the house for any I may have forgotten in my bag, bedroom, make up bad - it is so desperate 😂 hardly moved all week and the fear or missing a dose and I'm rushing around the house like a lunatic.

I had a repeat prescription in with the chemist so hubby has headed over now it's open to see if it's ready.

Gotta laugh at myself. How can I run out let myself run out 😂

Allie I bet your tummy pains are from the constipation. I can't take movicol due to the volume of water required (plus is tastes rank, plus it doesn't work for me). I use lactulose and find I can manage 30ml mixed with a little juice and water up to no more than 100ml total volume. If really blocked up I've been taking that dose twice a day. It gives me a tummy ache and diarrhoea by the end, but it removes the blockage!

Kleino how are you doing today?

After feeling like I was in the up, I'm having a bit of a dip today. Dizzy, super dry mouth and nauseous. We have a child's birthday party to go to this afternoon, which I am desperate to go to as haven't seen any friends for a month. Hopefully I'll be ok.

Hope you ladies all manage to have a relaxing weekend!

Ks that’s my fear! Hope the repeat is ready. I think sass had the same issue and got a prescription from out of ours gp. You don’t want to be stuck without all week end. There was something about a code on prescriptions giving an emergency dose in these cases but I can’t remember the details, sorry.

I literally just neck it in 100ml sittings. Lactulose goes down and then I throw up 5 minutes after. That will not stay down at all. Sounds disgusting but I’m now passing wind so hopefully a movement today 🤒👍🏻 Yeah it’s so much as I have t been in 12 days and the doctor wanted me to flush my system. Awwww Christmas is on its way.. I’ve literally slept about half hour last night. I’ve been out of bed since 5 watching Harry Potter on the couch. Holidays are coming lol x

allie I haven't had to resort to it personally, but kniw many women on here who've used suppositories to get things moving. Pharmacies will not sell them to You (despite it being given my midwifes/nurses in hospital) so you'll need someone to get them for you.

kleino sorry about drug running out! Knowing I have enough drugs is a really big thing for me, when I'm getting towards the end of what I've got I get very anxious and stressed, and my puking/nausea flairs as a result.

reastie I'm angry that your doctor referred to cos of ondansetron. On 2 levels. 1. No doctor would refer to cost when discussing treatment for cancer, a broken leg or a heart op. It's disgusting and inappropriate. 2. They're also chatting shit. Can't remember exactly it (Google knows), but a 30 pack of 4mg ondansetron costs the NHS £2.37 (definitely starts with a 2). I'm really angry with that GP, and frankly I would complain yo the practice manager about it (if you feel up to it, now or later).

Headache has eased thanks. Just flipping exhausted after stressful day yesterday (nothing major, Just a further complete lack of compassion and care in the treatment and management of a hyperemesis woman's pregnancy pregnancy). We have our annual family Christmas Launch party tomorrow, so hubbys taken Little out, and I'm having a very quiet resting day to give me the best chance of being able to enjoy tomorrow.

Thanks eal. Gp is so lovely though and was just telling me the cost I think to justify why she couldn’t put more pills per prescription (it would cost more than she’s allowed to without a red flag coming up for it or something) as she feels bad I have to keep doing repeats as she knows I get anxious about running out and not being able to source it. But I know what you mean, you’re so right it wouldn’t be mentioned if it were something like cancer. I also wondered about the cost as I’d found similar pricing to you but all I could think was maybe different health trusts have different prices for things (although I’m not sure why but in something like the nhs it wouldn’t surprise me).