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Journey into the world of hyperemesis gravidarum...
25Feb 14

Excessive Saliva... Gross!

You all know me well enough by now to know I don't beat about the bush on subjects which are, quite frankly, plain gross. And excessive saliva experienced during hyperemesis is no exception.

It is a little discussed problem and one which many women don't realise is actually common. Suffering in silence thinking they are some sort of salivating freak of pregnancy it serves only to add to the misery. But it is very common for women with hyperemesis and also very distressing. It's so common and “real” that it actually has a name... Ptyalism.

The distress from this symptom is kind of complex. On the one hand the psychological impact of knowing you are already very dehydrated and yet loosing even more precious fluid through excessive saliva production is frustrating and confusing. Then there is the embarrassment caused by the bizarre condition and resulting dribble (a drool soaked pillow on waking from a nap can be embarrassing even when you are all on your own – why is that?). Or the sometimes necessary “spit cup” to be carted around with you to the doctors surgery, by your hospital bed, to the sofa on the rare occasion a friend visits (putting them off returning any time soon).

But what if you don't spit it out... ergh, swallowing it is even harder when you have hyperemesis! If sips of water are coming straight back out then it's likely sips of your own saliva will too.

What can you do about ptyalism? Well sadly there is no actual cure or remedy (although no doubt you could pay someone lots of money who claims to fix it with some sort of mumbo jumbo). So, like most symptoms of hyperemesis, it's a matter of management.

First of all just knowing you are not alone with this symptom will, hopefully, help with the psychological aspect. As I type there are literally thousands of pregnant women in the UK and indeed the world spitting into cups or towels or futilely perusing the cycle of swallow and spew. Perhaps try connecting with a few of them on forums such as Pregnancy Sickness Support's UK forum or the HER Foundation forum in USA. If there isn't already a thread for excessive salivation then start one and share horror stories and coping tips. Honestly, it helps to know you are not alone.

I know a lot of women use opaque cups with lids on to spit into and find that effective. Others use a towel and switch it when soaked. Personally I couldn't cope with a cup full of saliva, the thought of it is making me queasy now and I am a long way from pregnant. I used tissues and put them in a cup... not very different really but worked for me and prevented the imagery that I found so offensive. When you can eat then dry foods might help dry your mouth temporarily and bring some respite. Rinsing your mouth regularly might help and will at least alter the taste. I couldn't cope with full blown mouthwash but used to dilute a little Listerine with water and found it palatable and helpful. Different flavours will work for different people but thinks like lemon water or soda water may be worth a try too. Unfortunately, like most aspects of HG you'll likely find what helps you personally through trial and error.

Whatever you do... Don't avoid fluids in the hope of reducing the saliva... it's a sure fired way to end up on a drip or worse and it won't work anyway.

Sorry I don't have an actual solution for you. If you have any better tips for other readers then please do comment...

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Just wanted to say that there is some anacdotal evidence omeprazol diminishes the flow of saliva. Perhaps worth a try if you are suffering from this.
Rosa Overbosch, 25th February 2014

I can't spit! I try, I just can't. Hubby has tried to teach me but I can't get the hang of it. I can ONLY dribble and I think lying on my dribble soaked pillow has given me an ear infection :/
Jade Vernon, 25th February 2014

15Feb 14

Meeting the man behind the books... Lyle Brooks

 

 

We exited the metro station at City Hall as instructed and looked around for the building I'd been sent a picture of the night before. It was easy to spot, the impressive court rooms, not because they are imposing, (they'd struggle to be imposing in New York City) but they are old for this part of the city, majestic, grand and a little intimidating because of their purpose... Law.

 

 

Why was I meeting a man, known in my world as a hyperemesis hero, outside a law court? Well, because Lyle Brook is a lawyer with an impressive career of practice and teaching and he now works here as a senior court attorney. But that wasn't why I was meeting him.

 

I was meeting Lyle as a colleague, friend and comrade in the battle of Hyperemesis Gravidarum. Clearly as a man Lyle has not suffered hyperemesis himself, and unusually nor has his wife. But Lyle is close friends with Ashli Foshee McCall, author of Beyond Morning Sickness and Chronicles of Nausea. In addition to his demanding law career he has dedicated vast amounts of time, money, love and passion into getting copies of Ashli's book as far and wide as possible to any and every woman that needs it. Then he sets them up with local volunteers who have been through it themselves to support and advocate for her. He does this almost single handed on an International scale and at his own expense. That's why I was meeting him.

 

It's natural to be a little nervous meeting someone you've only had internet contact with and that's escalated when you're far from home and have your whole family in tow. But on meeting Lyle for the first time face to face we were instantly relieved. A classic New Yorker, Lyle doesn't look like a lawyer, he is quirky and the details draw me, such as the vase thick glasses held together with sticky-tape on both sides, I'm intrigued. And as you speak to him he doesn't sound like one either. His life has been a hotch potch of weird and wonderful stories of quirky and famous family members, too many cats and a history of unusual interests and blogs... the tales are enticing.

 

After a whirl wind tour of the Court Rooms with it's incredible dome ceiling and disorientating circular corridors we headed out into the crisp New York air for a walk over to China Town for some food. We swap stories over chi and chopsticks about cases we've come across and the struggles we've faced in our mutual missions to help every HG sufferer we can. Lyle and Ashli have been going far longer than I and have achieved far more that I probably ever will but the inspiration they provide is so valuable to me and my UK colleagues. It is thanks to Ashli's book that I had the courage to go through pregnancy again rather than opting for adoption. And yet despite having helped literally thousands of women over the years and maintaining hundreds of volunteers across the world, Lyle seems to remember every one of them and all of their stories.

 

After our lunch we head out for a personal tour of Downtown Manhattan to see the Statue of Liberty, Ground Zero and Wall Street. Lyle carries my son Alfie, with his soggy jeans and wet boots, on his shoulders for a fair old way along the snowy streets and over the deep sloshy puddles at every road crossing. Pretending to bump his head on the traffic lights and scaffolding then transforming into a horse with a cowboy in control. It's a magical afternoon.

 

But the wonder of wandering New York with this interesting, funny and frankly charming character isn't the only magical element of the day. It's the vision of the future that is created. The increasing ability for international co-operation and collaboration to ultimately help more women and make more changes for care and treatment of hyperemesis around the world. Ashli's book has been a major inspiration for mine and Amanda's book which is nearly finished now and I sincerely hope we can make her and Lyle proud with our work.

 

 

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Two inspirational people meeting - HG better watch out! Such an exciting time ahead for international cooperation!
Emma Edwards , 15th February 2014

I am so, so glad you got to meet Lyle and had such an amazing time with him! He is a true inspiration as you say and the opportunity to work together means we can all help so many more women than we could alone! Isn't the HG community wonderful... So many friendships and so much passion to come out of such a horrific condition!! I, too, hope our book will make them proud.
Amanda, 15th February 2014

What a wonderful meeting of inspirational minds. Much love xxx
Jude, 15th February 2014

Cannot even begin to describe how amazing you two are, Lyle and Caitlin! Thank you for all you have done, and continue to do! XXX
Heather, 16th February 2014

As a former sufferer, previous recipient of support from Lyle and BMS volunteers and now as a volunteer myself, I am so pleased to find this site! What a powerful crew we have working to fight against HG and for awareness! Thank you all!!
Sabrina, 13th May 2014

As a former sufferer, previous recipient of support from Lyle and BMS volunteers and now as a volunteer myself, I am so pleased to find this site! What a powerful crew we have working to fight against HG and for awareness! Thank you all!!
Sabrina, 13th May 2014

05Feb 14

De-bunking the myths

Pretty much anything pregnancy related seems to generate the most unbelievable amount of myths and old wives tales. Some are so ingrained in our culture that they are considered norms and are perpetuated by health care professionals despite having absolutely no evidence or truth behind them.

Other myths prevail because they have a shadow of truth in them and these ones have a particular prevalence in hyperemesis care and advice. That's mainly due to the difference between "Morning Sickness" and Hyperemesis Gravidarum being misunderstood.

So lets look at some of the myths we hear, where they stem from and the truth about hyperemesis gravidarum.

  1. Every one gets morning sickness, you just need to put up with it

    Where it stems from: About 80% of pregnant women will suffer some degree of nausea and/or vomiting. For the vast majority of these it will be manageable and considered a mild irritation. Some may even enjoy the feeling of “morning sickness” as they feel reassured that the pregnancy is continuing and the baby is well. Some will have moderate to severe nausea and vomiting in pregnancy (NVP) and may feel really rough but still be able to function and get to work even though it's a struggle.

    The truth about hyperemesis gravidarum: only 1-2% of pregnant women will get hyperemesis so it is not a “normal part of pregnancy”. It is not something that women can “just put up with” as it is utterly debilitating and without treatment could even be fatal. Far from feeling reassured by their pregnancy sickness, women with hyperemesis are often terrified by the severity of their symptoms, fearful not only for the well being of their baby but fearful for their own lives! “Putting up with it” and therefore not seeking help could lead to further complications and put mum and baby at risk.

  2. It's all in your head, because you are anxious/depressed/don't want the baby/not thinking positively etc etc

    Where it stems from: Historically there had never been suggestions of a psychological cause for severe pregnancy sickness. In fact, as the leading cause of death in early pregnancy it was probably taken very seriously. Until the start of the last century... so what happened then? Well two things happened. The first, great thing, was that Intravenous fluids were invented and anti-emetic medications were invented, which meant women stopped dying so often. The second, awful thing, was the growth of Freudian psychoanalytic theories. These suggested that women were subconsciously rejecting the foetus and making themselves sick. As a result, appalling treatments such as preventing access to bathrooms and vomit bowls where suggested. Women were prevented from seeing loved ones and deliberately left in isolation.

    The truth about hyperemesis gravidarum: The condition is NOT psychological and thankfully this has been thoroughly proven with plenty of research. It does however have a profound psychological impact on the sufferer due to the prolonged, severe symptoms, extreme isolation, lack of understanding and support from others, the stress of financial burden and the constant fear of complications. The psychological impact is further compounded by the cruel suggestions that it is self induced.

  3. You'll be better by 12 weeks

    Where it stems from: As mentioned above, about 80% of pregnant women will suffer normal pregnancy sickness and for the vast majority of them symptoms will be over by 12-14 weeks.

    The truth about hyperemesis gravidarum: To say HG will be over by 12 weeks is like telling someone with a broken leg that it will be better in a couple of days. It's not a sprained ankle, and hyperemesis is not a bit of morning sickness. Hyperemesis often improves by around 20 weeks but “improves” is definitely not the same as “stopping altogether”. Although a good number of women with hyperemesis can recover by about 20 weeks and go on to have normal pregnancies thereafter, for the majority (around 60%) some degree of symptoms will continue until the baby is born. This is a major difference between morning sickness and hyperemesis and is one of the most frustrating prevailing myths from sufferers who are faced with comments like “well you can't still be sick, morning sickness stops at 12 weeks”, not just from relatives and employers but from midwives and doctors too.

  4. Ginger is the cure

    Where it stems from: Ginger has long been considered a remedy for nausea and there is a bit of evidence out there that taken as a 1000mg capsule of pure ginger extract, it may help mild nausea, upset stomachs and so on. Prior to modern medicine people had to rely on natural remedies as they had nothing else so yes, it has been used for millennia (the earth is round you know!)

    The truth about hyperemesis gravidarum: Seriously... band aid for a broken leg. Women with hyperemesis would love to avoid taking medication if they could. Medication causes huge anxiety for women who are bombarded with suggestions of problems for the baby and if they could avoid anti-emetic medications just by taking ginger then, believe me, they would. In reality, ginger capsules repeat on you and can cause terrible acid reflux which can make symptoms worse and cause pain when vomiting. All other ginger cures, such as ginger beer/cordial/tea, ginger biscuits, pickled ginger and so on are all complete nonsense.

  5. No medication is safe in pregnancy

    Where it stems from: The tragic thalidomide disaster.

    The truth about hyperemesis gravidarum: There are a number of safe and effective medications that help the severe symptoms of hyperemesis. Furthermore, not treating hyperemesis with effective medication is far more dangerous and can lead to severe complications for both mum and baby. Medications prescribed for hyperemesis have decades of evidence behind them and even the newer ones which haven't been around for as long have enough safety data to justify their prescription in pregnancy. Besides, as I said before... women only take medication when they absolutely have to!

These are just a few of the common myths I hear on a regular basis and I'm sure most of my readers have heard many of them too. The more you share this post the more awareness we raise and the quicker we debunk these frustrating myths that almost every hyperemesis sufferer has to listen to on a regular basis. They serve only to add to her suffering and isolation and it's about time they faded into history.

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Comments

I, and my 2 children, are lucky to be alive thanks to the drugs and medical care I received during 2 pregnancies with severe hyperemesis for the whole time I was pregnant. People kept telling me I should be 'drug free' and I just needed x or y 'alternative' solution. Meanwhile I was throwing up blood and my electrolyte imbalance was causing serious health concerns. I was still being sick while my baby was being delivered. 9 months of being sick 20 times a day. Twice. So yes, I had the drugs and the hospitalisation and of course I tried every other thing I heard of too, where it was safe to do so. Very few people understood. So, thanks, basically. More people need to understand!
Gill O'Connor, 5th February 2014

Still feel that my boss and colleagues didnt believe that i couldnt work and was putting it on, despite being hospitalised on 3 occasions in my 1st pregnancy. It didnt help that the insurance companies didnt pay out as they didnt recognise it as an illness as it was pregnancy related.
Karen ayms, 5th February 2014

Please see comments from people like Kerry Dungay who had saving treatment form acupuncture for hyperemesis. We need more research but there is evidence out there. Women need to know it is worth trying.
Sarah Budd, 6th February 2014

04Feb 14

Welcome to my new site

So here is my fancy new site. More streamlined, easier on the eye (I hope) and significantly more functional.

 

I'm hoping that this new look will enable me to raise significantly more awareness and provide far more support then my previous basic blog.

 

You'll have to bear with me over the next few weeks while I populate the pages slightly more and add and adjust current content. But in the meantime check out my new shop... yeah I know, I only have one product so it's hardly a “shop” but it is a seriously great product... quality is more important than quantity and that calendar is pure quality.

 

Cleverly designed to help you through your nine months of hyperemesis hell, it doesn't claim to cure, it just helps pass the time and will hopefully make you feel a little less alone. Far better value then all the BS products out there that claim to cure morning sickness and are basically just placebos. Not only do they not work but they add to your hyperemesis burden by robbing your precious pennies while you're on sick leave!

 

Back up to the “bear with me” line... I'm now living nomadically with my husband and three small kids in a hire car and two suitcases... We have chosen to live homelessly, wandering (purposefully) around North America and Canada for the next year or so. We haven't left the UK yet, but fly to New York on 12th Feb. So... please bear with me while I try to find a rhythm for blogging on the road in between home schooling the little monkeys and having as much fun as possible.

 

In the meantime, enjoy the site, have a look through my best bits and buy my new calendar, either for yourself or for someone you know who is suffering – what a great present for a woman with hyperemesis!

 

And if you haven't already then don't forget to sign up to follow me via email and on social media sites via the links on the right.

 

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I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.

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Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.

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