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.

OMG the teeth brushing...

Can't do it before the school run feel like a royal tramp but my sickness meds don't even seem to help that much in the morning. It's hard enough dealing with the kids breakfast and younger DC's soiled nappy without also trying to brush.

I chew gum on the bus sorry not sorry then that makes me feel sick to after about 2 minutes.

Then I brush them mid morning and again before I leave for the school run.
Can't do them at bedtime as I'd be sick, worst times are morning and evening, but do manage to floss the front ones and swill with mouthwash.

I normally brush first thing, after lunch, and last thing at night. Feel like a minger but that's the only two times I can brush them properly without urging...

*Reastiepeace
*
It was a consideration this time certainly... After last time I said "no more" but got another miracle growing in me so hey ho, HG again.

It's been (marginally) better this time. I got medicated almost straight away but it still is a struggle, especially as recently becoming a single mum to two kids and being pregnant.

I don't know... I know it has always been worth it in the end. I would jump in front of a bus for my DCs so know being sick for them was definitely worth it.

It has happened reastie yes. Sometimes people are driven to measures they really, really don't want to take.

When it's really that bad though, go to the doctor and tell them. Take someone with you to advocate for you. It really does help.

As eallison said, rest, rest, rest, rest as much as you can. It's not a luxury; any stress increases the nausea and vomitting so it's essential to cut out anythign that can be cut out. Incredibly difficult if you have children, but anything extra can go.

Also, redefining normal did help me. It's a horrid normal but as Mother Hen says ... it will pass. Minute by minute, it will.

Thank you. I went to the gp this morning and burst into tears. She’s going to ring the consultant for advice and they may need to see me re meds. I so wanted to do all medicine through gp to save the journey to the hospital which is a long way away but I don’t think I’ll manage it. Gp has only put me on 4mg ondansetron so I’m going to try 8mg tonight as evenings are the worst and see if that helps.

Im really glad she's going to ring the consultant. I hope they come up with something - 8mg at least!

If you can get contact with teh consultant might it be an idea to ask for safe non-addictive sleeping tablets to help you get through the evening? I reluctantly use Trazodon which is an off-use antidepressant. Hate taking them, but they do work without being a cosh over the head. The consultant or pharmacist woudl know about what's safe.

Finding ways to make the evening endurable would be really useful here?

I hadn’t even thought of that sea. I’m assuming it’s going to get worse at all times of day if I’m like this at only 6 weeks though? Last time it got progressively more life limiting insofar as it lasted for longer and more of the day every day until it was constant. If they couod just please give me sleeping pills to last the next 7 1/2 ish months that would do nicely

@bumblebee39 yes I have to mentally prepare myself to brush my teeth lol!

I think it varies reastie but if that's the pattern from before, it might happen again. It might also not.

If it's any help, in a way going through it the second time can be fractionally easier mentally becuase at least you know what's coming and it's not a horrid, horrid surprise. At the 6 week stage I found the -thought- of the next weeks intensely depressing but actually getting through them wasn't quite as bad as the first time.

Ok, so I’ve had a call from the gp. This really really upsets me as the registrars at the hospital seem to give different guidance from the official guidance. So this registrar said ondansetron should only be a short term measure and I should go off that and try another medication instead. I said I had done a lot of research and I knew that the guidance was to add medication in not swap and obviously her hands were tied as she’s just going with the advice she given.

So I’m now trying to book a private appointment with urgency with a consultant. But, presumably even if they are a consultant it doesn’t guarantee they follow these guidelines. I have a list of consultants at my local hospital, none of which are on the pss list having had training but my gp wanting me to go with the doctors that operate from this hospital even privately as she said I will be seeing them during pg anyway so I need to for continued care. Do I just pick a name out of a hat and hope?

reastie take printed copies of all the guidance. Karen at pregnancysiciness support can guide you to what you need. I'm sorry you're finding it so difficult to appropriate and adequate care.

I just ate lunch then fairly promptly brought it all back up. I'm so relieved! HG messes with our heads as well as everything else, hey ladies! I'd been gradually reducing meds to see what happened. Clearly I was on a good combination of meds! Will go back up to what I was and tell myself to calm down and relax!!!

I go to every appointment with the guidelines! Thing is the gps willmonoy prescribe for me anything other than cyclizine based on advice from hospital registrar. I still can’t believe they want to take drugs out. I’m now faced with them taking out the ondansetron which is really helping, just not when it gets really bad as it’s not enough but I’m on a low dose.

Eal I’m glad/not glad you had a relapse as at least you know the medicine combo is really doing the trick for you. What combination are you on?

oh god, im sorry reastie. They really, really should follow the NICE guidelines!

I presume it’s a cost thing? So I’m trying to get a private apt with obs to get the right medication combination sorted but turns out even that isn’t as easy as you’d think. Awaiting call back from consultant who might not see me as a private patient for this issue as may insist on seeing me nhs instead (?!) which means longer wait and potentially not the best drug combination due to cost restrictions. I’m just disparing a little. I’ve been very clear about needing help even before I was pg, I don’t have the strength to do this. They shouldn’t make it this hard to get the help I need.

That's just not good enough reastie. I'm sorry it's so difficult for you. I'm on ondansetron (8mg 3x daily), cyclizine (can't remember dose, but 3 x daily), metochlopromide (think it's 10mg 3 x daily). Plus 150mg ranitidine twice daily.

That’s interesting eal. Isn’t it metochlopromide that’s only usually 5 days duration. Do you know the logic behind that as presumably you’re on it for as long as you need it?

I did question the consultant on the 5 day thing. I can't remember exactly what she said, but she was happy for me to be on long-term. She said reactions usually happen early on if they're going to.

Oh, I Cross posted earlier reastie in actual fact cost shouldn't be too prohibitive. I had a Google a few weeks ago, and ondansetron is on a parr price wise to cyclizine and metochlopromide.

Reastiepeace It isn't good enough, when you are so desperate that you are seriously thinking of an unwanted termination. I am sorry that they are being so obstructive. All I can suggest is that Pregnancy Sickness Support again on 024 7638 2020 to see if they can suggest a way out of this conundrum. Surely, the local hospital must sometimes give sufferers a medicine stronger than cyclzine?! Wise words from Bumblebee SeaEagleFeather and others about surviving.
Bumblebee I am sorry you are having to go through this as a single mother. That is really hard.
eallison I am sorry about the lost lunch. That toothbrush sounds ideal.
Sometimes, I used to get desperate as the thought of cleaning my teeth even with a kids' toothbrush with strawberry favoured toothpaste was too nauseating and I used to use a sort of mouthwash I made out of bicrabonate of soda and water, which is probably not good because it is so salty. Weirdly, I found that though artificial mint made me heave, fresh mint made into tea didn't. But that's no good as a tip at this time of year! I still have some mint in pots but it's been nipped at by the frost.
Waves to all. Apologies to anyone rudely overlooked.

Thank you, pss have been as helpful as they are able but the closest private practicing known hg friendly consultant is over an hour away and my gp specifically wants me to see a consultant privately that also practices in a specific area (ie the hospital where I will have my nhs referral and consultant led nhs care as it looks like they’ll make me consultant led this time) to help my continuity of care and to make sure they have a long term plan.

Tonight I took 8mg ondansetron as I got so upset with evenings being so bad. It’s not the end of the evening yet so I know it could suddenly go downhill and may be a freak good evening but touch wood so far (even if it now all goes downhill) this has been the best evening for a week so maybe it’s just I needed a higher dosage. See, if I was in charge of administering and prescribing this pg I’d be doing a much better job myself! I’m just now scared they won’t extend ondansetron prescription now the registrar has told a gp I should stop it (which is ridiculous, it’s helping but a half dose wasn’t doing the job. Who would take it out before trying tweaking it?!). I really don’t get medical professionals sometimes. I guess it’s not their life, they don’t have to live this so it’s easy for them.

Thanks @LucindaE

Honestly it could be worse 😂 I could be with my ex...

When I had HG with DC2 he would come bring me a cooked breakfast every morning. This looked like "care" but was actually more like "torture"

I told him a million times I couldn't face food first thing
"My kid needs feeding" he'd say 🙄

reastie I'm so angry for you. It's utterly unacceptable that you feel the need to consider a termination due to frankly appalling care. I'm fairly sure in the guidance it makes a point that no woman should have to consider a termination when all med options have not been exhausted. It is unacceptable and i feel awful for you.

www.rcog.org.uk/en/guidelines-research-services/guidelines/gtg69/

Have you seen these guidelines ? They're very clear that more than one antiemetic should be used if no response to one. They're very clear that all options should have been tried before a termination is considered. They're very clear that practitioners do not offer enough support and acceptance of sufferers. I'll add a couple of screen shots as well, I know that scrolling through documents is tricky for some.

A few more

Last 1

Thanks, I’ve read that document so many times and even highlighted with a highlighter pen the thing about all medical options before abortion. I think the gps I’ve beeb seeing are trying their best but they’re only going with advice from the registrars and it’s the registrars that are giving the dodgy advice. I guess the only answer is to see a consultant and hope that they are more knowledgable and experienced but I’m so jaded I don’t even know now if they are going to be even more helpful and I don’t know how long I’ll need to wait to see them.