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.

Folks, can I ask your recommendation?
I am 16 weeks, I got pre-emptive meds for this pregnancy and despite many a difficult day, everything has been under control with cyclizine, rest and the normal morning sickness remedies (eating little and often, the typical drinks that helps etc.)
The balance has shifted from an all day struggle with managing little to a more severe nausea in the mornings and evenings, with a bit more relief during the day. Last night I was up vomiting for the first time in ages but had about 6 hours yesterday where I was able to be up and about in the house doing some normal things.
I phoned the doctor feeling awful still this morning, and they were just operating on archaic advice. Cyclizine is the only safe medicine, tablets have little impact anyway, really until you’re dehydrated there’s nothing we can do for you, come down with your urine and we’ll see if you need hospital. She was pleasant, but wrong. Obviously it’s hard to be your own advocate but I did express to her that this information was wrong and not up to current guidelines, that there are numerous other safe drugs and that tablets can be very effective before the vomiting has got out of control, the midwives and doctors at the hospital will back this up as well as RCOG and pregnancy sickness support.. but at that point you know it’s a closed door anyway, they’re obviously not going to turn around and say oh great let me prescribe you something. She said all they can do for me is check my urine. I’m so angry because I’m trying to AVOID hospital and she’s adamant they won’t help until it gets to that point. What can I even do in this situation? I can’t request a different doctor because it’s emergency appointments, you get who you’re given. I can’t go and show her the guidelines because it won’t make a difference as she didn’t want to hear it in the first place. I’m so angry that they can literally close he door on you, and I’m not even a vulnerable first time sufferer and I really did articulate myself on the phone and she just bypassed everything i said. What would you do in this situation? Phone midwife? Wait and see if you do need admitted? I know I don’t now. Because I’ve had this before, and I know what I’m doing.

Urgh nighttime I know a gp like that in my surgery, no matter what you say it’ll be wrong and they won’t listen. So I would suggest seeing an obstetrician to prescribe but I’m not sure if the best way to do it would be via gp or mw. I believe they can both do it. They will be more experienced at other prescribing options to go to the next thing up. According to PSS when I rung them a while ago if you ask your gp to refer for this they can’t say no. That might take time though so maybe if you called your local hospital AN number on your notes or if there’s a number for where you’d get to to be rehydrated in the hospital (some have designated areas) and explain the situ and that if you don’t try more medication you will be admitted and explain your last pg they might be able to do something that end (I don’t know, it’s just they might be able to point you in the right direction of help or get you in. When you’re in a bad situation I think you try everything you can). My gp would telephone the hospital registrar for advice on medication when unwilling to give it without checking but your gp sounds like they might not be willing to do this. Would you be able to go the route of a private GP appointment? They might be more willing to help. Call PSS as they might have other ideas that could help too. This might all be useless and other pe0e have much better ideas but that was my first thinking.

FWIW mine got more extreme from 14 weeks, I’d get better periods but when it was bad it was worse. In a way I think I preferred it when it was constant but not as bone clenchingly extreme. Did you have more medication when pg last time? Did you have a lot of admissions last time? You can use all this information to fight for and justify having more this time. I know it shouldn’t be like this, I still can’t work out why we have to suffer so much when there are so many recommended options. I had a gp tell me by having more than cyclizine I was completely unreasonable and jeopardising my unborn babies life. Once I’m feeling better I’m wondering whether to complain. She just gave me gaviscon (which of course didn’t help!).

I can’t believe I was thinking I was ok for work yesterday, this morning have felt rough again, just when I thought it might be coming to an end. Had 4 bms this morning and it got worse every time before that so that connection is still there.

Snow predicted tonight and scan at 8am tomorrow morning! Have rung up hospital to see if they’d rather postpone my apt in case I can’t make it so they can use it for someone else and they said to keep it as they are completely fully booked atm so would be v difficult to rebook me . I mean, how much risk do I put myself in to get there? How much snow and ice should I drive through in my little tiny car? I live on country lanes in a hill that always gets a lit of snow . And of course all this worry is making the nausea worse and I’m also getting ill with a cold bug .

nighttime that is so annoying having to find with a GP every single time. How can it be better to have you end up in a hospital? Unbelievable.

I've been doing similarly ok with plenty of rest and taking cyclizine twice a day. They only give me 30 tablets (so really 2 weeks worth) and don't want to let me be on repeat prescription so every 2 weeks I have to come back and beg for more, and get stressed that I won't manage to get it in time and will run out. I understand they don't want me taking it indefinitely, but I tried dropping to once a day and immediately became more sick the next day so I am terrified of doing that again anytime soon. Then they tell me I should only take it when I need it, and just try ginger??? I don't know whether to scream or cry. I think someone on this thread said previously that the key with cyclizine is to have a steady level in the body - which proved to be right in my case, so I don't think just seeing how I feel each day and taking it only when I'm back to being sick is the right approach... How long have you been on your meds and how does your doctor feel about it? I started taking it mid December and obviously it's not ideal but I really don't want to stop taking it yet (I'm 15 weeks now)

Reastie good luck with your scan. It sounds like rescheduling would be ideal and you really don't need the extra risk and stress of driving in snow. Can someone else drive you maybe, would that help?

I had a similar problem with being advised no more meds and the only option is to keep going until dehydrated and then be admitted on a cyclical basis, onlý that was by the gynae reg at the hospital as I was being discharged after being admitted for fluids!! It's a losing battle all round.
reastie the thought of the snow is freaking me out too. I don't think everywhere is going to get it as bad as the dire predictions though, where are you?

nighttime does your local hospital have an early pregnancy unit? If so, it might worth a phone call to them. I'd also suggest ringing PSS, as the lovely Karen is likely to have information about what services are available near you, and where you might find a consultant with the appropriate experience and expertise. It is so frustrating when healthcare professionals don't seem to understand that they can prevent serious problems and admissions and resultant cost to the NHS with some fairly simple proactive actions.

Thanks for your replies guys. I ate lunch and took a nap just now in the hope I can keep it down. @Evuscha, I don’t realise how close I am to breaking down until I talk to an ill informed healthcare person!! I’ve been let down one too many times with one too many issues in pregnancy and birth, I have a general dread of accessing maternal care all round and every time I feel resistance it really gets to me now. I’ve been taking cyclizine 3x a day for 12 weeks now 🤭 I didn’t realise they didn’t want it to be taken longterm? A good nurse friend of mine had it 3x a day for the duration of both her pregnancies, supported by other drugs at different points. I wonder why they do t want it for a long time?
@silversplodge I wonder that the gynae registrar was so reluctant!! Is there still split opinion on this or do you folks think these people just don’t see many cases and so operate on old info?
@Reastie, thanks for suggestions. I have an appt with an obstetric consultant on 22nd Feb so I don’t think GP or midwife would be able to get me one sooner, but I will be raising this there whether I’m better or not. Interestingly my gps don’t see admission as something to be avoided, they see it as an essential if you have hyperemesis. I actually think they’d say I don’t have it since I haven’t needed admission, but I know myself that I only haven’t needed it due to the preemptive meds and how careful I’ve been. Last preg I just had one admission but had tried odansetron and stemetil as well as cyclizine- I was in a different practice. Despite these being on my notes, the doctors I have now still won’t look into it and prescribe again. Midwife has previously been clear that prescriptions have to come from the gp and the gp has to be happy to prescribe themselves. We don’t have the money for private but I had heard that private gp’s won’t prescribe anyway, that they still need your nhs gp for that? I don’t know much about the private system but it is still too expensive for us anyway. If I was in danger we would ask my in laws to pay and they’d do so willingly but we wouldn’t do that unless it was really needed. I hope things clear and you can get to your scan tomorrow. They’re like the teeny glimpses of the goal punctuating the horrors of hyperemesis. 🥰

evushcha I took meds from week 6 til the day I gave birth (wk 41) in my first pregnancy (and it was max dose ondansetron, 8mg x3 daily, from an 7 to the end). This time I started meds the day I peed on the stick (and I peed on said stick as early as was possible to do so to get a result). I've been thru a variety of meds to get to this point (I'm just over halfway now), and am almost certainly going to be on them til I give birth (in fact, if I'm still on steroids at that point I'll have to continue taking them for a while as they have to be weaned gradually rather than stopped suddenly, cos of the high dose and the length of time I will have been taking them). You should not feel pressured to stop taking the drugs whilst you still need them.

@eallison88 they do, but they wouldn’t admit me unless for dehydration and won’t offer drugs that bypass my GP unless I am admitted and so under their care. I will be phoning pregnancy sickness support on Monday if i don’t improve over the weekend, as I am aware that bad days can just be bad days and there’s hope it will improve from here. Thank you.

Thank you nighttime and eal, that's what I thought, I haven't been even taking it for that long and it's only cyclizine that I'm on so surely I shouldn't be made to beg for it every time and asked to swap it for bloody ginger I can only assume it's either the cost that is making them push me to limit it, or lack of education, they just see "not suitable for pregnancy" in instructions and think ginger is the answer.
But nighttime it sounds like yours is a whole other level, how can they prefer for you to end up in a hospital is unbelievable Surely that is more expensive for the NHS and more damaging for you and the baby than just medication? Good luck with getting advice from pregnancy sickness support!

nightime your GP is being unacceptable. Print the guidelines, and get an emergency apt tomorrow. Then sit there and refuse to leave until you've got the care you have a right to. I have unhelpful GPs and healthcare systems. My closest EPU will only take people on referral to them by GP (and even then it's a fight to get what you need.... I do so love being referred cos dehydrated with 4+ ketones, then them refusing to hook me up with a drip til I can provide a urine sample to proove I'm dehydrated... having just provided a sample for my GP!). However, there's a gynae/pregnancy A&E only 30minutes away, so I go there now if I need hydration. My consultant, who is great, is at my local hospital tho.

Just wanted to pop on again in the hope of offering a little bit of hope, sorry to see the thread still seems busy!

I went back work 2 weeks ago after 10 weeks off, still being sick 2-4 times a day but only in the morning but I feel like a completely different person, 20 weeks tomorrow. 4+ weeks I saw no light at the end of the tunnel and at one point was verging on depression, it was a horribly dark place but it will get better for you all, hopefully sooner rather than later!! Thinking about you all!

nightimenope and evusca That is so maddening. This was the attitude of a few years back. Then, sufferers were generally refused meds until they had to be admitted for severe dehydration, and only then tried with Cyclizine. Besides the suffering involved, it was counter productive and not even cost effective - someone having multiple hospital admissions is very expensive and there is that matter that doctors menton of the physiological vomiting pattern setting in, which is why pre-emptive meds are a good idea.
This is very old fashioned advice, as you say. The only thing is, as others say, to see if Pregnancy Sickness Support on 024 7638 2020 have any suggestions. evuscha I can't believe that to add insult to inuury, they 'gingered' you!
Reastie I hope you can sort it out about a scan.Forecast does seem bad for a few days; disappointing. It is so good that you can now even think in terms of returing to work. Did you say you taught cooking? I wondered, I remember, if you were the cookery teacher who posted several years ago. Not the best job to have with Hperemesis!
silversplodge Oh dear. I do hope you are doing OK now? What meds have they got you on?
norbert Congratulations on scan.
eallison I so agree. It is a ridiculous situation.
Apologies to anyone rudely overlooked.

WeeBean That is good! Thank you so much for coming on to encourae others. Don't push yourself too hard, Mother Hen advises as usual...

Lucinda I may have posted a few years ago, being pg again was a very very long process before I decided I could do it. I actually remember you told me you regretted not having another and it was that, the thinking I didn’t want to live my life with regret, that made me go for it. I still can’t manage cooking smells though, and of course after having such a good day yesterday and thinking about work again today is a bad day and I don’t know how I thought I’d be ok to return! I think I need to focus on getting confident leaving the house without anxiety (I’ve been having to do deep breathing as I feel so anxious feeling sick when out) and get towards reducing my medication a bit so I’m not constantly on maximum dose. I hope my gp agrees when I see her in a couple of weeks to focus on getting myself in a better place rather than dashing back to work. I still haven’t managed to get ot the mental health nurse as I haven’t managed to get to the appointment yet.

@Nighttimenope and @evuscha sorry to hear you're getting so little support and help. I got so ignored and frustrated with how I was ignored last time that I paid to see a private gp when I finally decided I could bear to get pregnant again. Not the best option I know, I just didn't have the energy to argue it.

@Reastie Take as long as you need and then a bit extra, teaching is hard work! I've realised how much difference it makes resting now that I've had 2 weeks off, I've eaten far better than last time and am much more 'normal'. Obviously I have the healing powers of nesquik to thank too 😋

Omg ladies i am raging for you over your fuckwit docs!!🤬🤬🤬🤬
Cant believe in this day and age this is happening. Boils my piss.
I must be really lucky for where i am ive had no issues getting anything and im on max dose everything, almost.
Severe hydration is a serious and life-threatening complication that would be way more damaging than the tablets.
Id be plonking myself in gps office and not budging til theyve seen sense. Fucking ridiculous.
Another shitty day for me. Crying to oh cos i feel shit, look shit, and feel like a massive inconvenience to everyone. Sooo drained today, no energy for anything. Anyone else feeling wiped out??

Hair yes I’m constantly wiped out. I have no energy and as soon as I use up my limited battery the nausea returns with a vengeance.

Had scan today and got there. Have spent the whole of the rest of the day lying on the sofa trying to limit damage of feeling rubbish from exertion.

When at the hospital I booked apt with consultant. Mw asked me to do it when there as they haven’t sent me one yet. It’s an apt about my anti emetics (as my doctor is keen that a consultant ok’s it) and also about planned csection. I’m so worried the consultant will say actually you shouldn’t be on ondansetron and take me off it, especially considering how rubbish we know doctors can be about medication and guidelines. I have no idea if this is a nice consultant or not. Do you think they would take me off it if I resisted (I’m happy to try reducing but I don’t want to feel forced to stop it)?

Hi all, just wanted to let you all know that my little boy arrived safely yesterday after a pretty swift labour. I’m over the moon he’s here and healthy and happy but most of all because in those darkest days being so ill I never thought I’d make it here.
A bit of a pukey delivery but all my symptoms disappeared the moment he was born. It’s easy to say now but it really is all worth it in the end ❤️

Hope that everyone suffering will have a better weekend x

reastie i really would be surprised if a consultant tried to stop you having ondansetron. If they do then you need to politely and firmly stand your ground, and explain why they are wrong, why you need it, and refer to the RCOG guidelines as necessary.

The battery levels/wiped out thing. Today and last Friday have been my worst days for quite some time, and I'm definitely attributing this to being wiped out from going to work. I will not be increasing my hour a from 2/day (3days/week) any time soon. Certainly not while I'm left feeling so sick and drained on Fridays. I don't want to cut my hour again, or stop, as I still think the benefits are there. Its all about balance, hey!?

olive what lovely, lovely news. Congratulations! Enjoy all the food and drink you've missed, and enjoy all those lovely newborn snuggles - there is no better smell in the world!!

Congratulations @Olivecake I hope you enjoyed the lovely tea and toast and the lovely snuggles xxx

Congratulations olive

Olive that’s fantastic news, congratulations. It’s all over at last for you!

Eal I’m going to take the guidelines with me and am prepared to tell them I was very close to a termination before I was put on it (it was a very dark time). I also have that a professor consultant obstetrician recommended over the phone the introduction of ondansetron at 8mg 3 times a day. I know I won’t feel able to fight in that situ as I’ll be feeling so wobbly getting tonthe hispital. Maybe I’ll start talking about csection issues and hope they don’t get around to the medication.

Olivecake That is wonderful news! . I am so happy that you are here at the Pink Castle, and see how I have had it new strung out with banners. You were wonderfully supportive on the thread. The sickness vanishes within hours or days of the birth for about 99.5 per cent of sufferers. For the handful of unlucky ones, it goes with the cessation of breast feeding.
Reastie Goodness, it is nice of you not to blame me for encouraging you for going for it again, when you have been so ill.
But I am sure you will never regret going for it again once baby is born and LO has a sibling.
Waves to Hairgician and everyone...

@Olivecake, is there anything more wonderful than a baby being born? Huge congratulations to you. Best wishes!

Hi there, please can any ladies with experience of pregnancy sickness help me. I'm 16 weeks pregnant with identical twins and since week 5 I have been very unwell with 24/7 nausea. It has woken me in the night as well as being all day and has made the pregnancy experience very very challenging. It is my first pregnancy and I know sickness is normal however I have high levels of HCG which I think are the cause, plus the fact it's twins. I have been off work since mid December as I have been unable to manage the commute (2 hours each way) or even leave the house due to feeling awful plus repeated heaving prevents me going anywhere or the odd vomit doesn't help either, I've had some good days but the bad days are so terrible I end up crying myself to sleep wanting the day to be over and then repeat the next day and so on. My GP initially prescribed me Cyclizine which worked well for a period of time but not well enough and I should have switched it earlier to something stronger but I kept going with it although I still had terrible days. After my third GP visit in tears of pure desperation and frustration they prescribed me Ondansetron. I have taken it for 5 days and I have been able to function! It's been a godsend and I have been thinking about returning to work. However I asked my GP for more tablets today as they run out in a few days, he said he needed to check. He rang a Obstetrician at my hospital and they said they recommend I do not take them anymore with immediate effect, to try Cyclizine again and then reduce that down too. The reason being evidence of Ondansetron is not sufficient enough to prescribe without worry so they won't do it. I asked if this was because I'm having twins and that was not even discussed with this consultant so no, nothing to do with it. I spoke to the Foetal medicine unit not entirely happy with this as I'm terrified of the bad days and nights returning, the helpful lady rang a consultant at the same hospital just a few hours later, clearly a different Obstetrician consultant who said it was fine and they'd give me a prescription. I am so confused. I know no drug are 100% safe but please does anyone have the professional knowledge of experience with these drugs and this awful nausea, were you allowed to take it and if so for how long, are your babies ok etc. Thanks in advance from a fed up and worried pregnant mum to be.