I wish I could offer more than my story-I wish I could tell of a cure, or of a new discovery or research. I hope one day that will be a possibility!
-----Hyperemesis gravidarum is a very misunderstood sickness and it is hard to explain (without writing a way too long post like this) and therefore can be a very lonely, scary, frustrating illness to have. I want to say this right now though: The most important part of this entire post is the last paragraph.
When I was about 5 weeks pregnant with my first, I started throwing up and feeling extremely nauseated. Morning sickness, right? That's what everyone told me. I was so nauseated that I couldn't eat or drink anything. Picture the flu, the moment you are going to throw up-just that extreme, "it's coming up", panicked nausea-24 hours a day. It does not come in spurts, or waves or at different time, it is ever present. I couldn't put food in my mouth, look at food, smell food, even water-I could be gagging it up before it went down my throat. I grew weaker and weaker and lost weight quickly.
I don't remember if I called the doctor on my own but I do remember that I had to have someone drive me to the office. Dehydration and malnutrition also cause an ability to concentrate, extreme muscle weakness, dizziness, and a feeling of being "out of it". There is no way I could have driven myself. Finally there, the doctor diagnosed me with hyperemesis and I stayed two nights in the hospital.
I was told my main goal was to avoid ketones in my urine-a danger to the baby and the first thing that happens after prolonged dehydration. I had to go back weekly to test for these. Back then (this is '93) I don't think there was any medication they could have given me. (More on that later.) So I laid in bed for ten weeks. I managed to eat the tiniest amount of calories and drink enough water to sometimes pass, sometimes fail those ketone tests, but I was lucky in that I managed to never need an IV again. Sleep was my only comfort. I would stuff a pillow under my stomach because it would hurt so badly (from not having any food in it and from throwing up) and will myself to sleep like that every night. I lost 15 pounds by the end of those 2 1/2 months.
Another thing that hyperemesis does is cause your sense of smell to go off the wall crazy-I know this is common in the first trimester but it seemed so out-of-this world intensified. Picture every smell exaggerated 10 times over. If my poor hungry husband made himself a frozen pizza it would just kill me...for me it was like someone holding a rag soaked with a concoction of 100's of chemicals over my face. It would cause my nausea to hit the roof. I would beg him not to cook anything, not to open the fridge, not to get near me-not to even walk through the door of the bedroom. If the outside door opened I could smell the air-it smelled terrible to me. I swear I could tell you what the neighbors were cooking three doors down. When you have hyperemesis, you just want a giant bubble around you-you can't stand the smell of anyone or anything.
At around 14-15 weeks the intensity began to fade for me-I was still sick but the weight loss and extreme nausea began to fade slowly. Some women who have this have it the entire pregnancy. (Here is what 9 months of hyperemesis is like.) Because of that (the body can only starve so long) these women are sometimes hospitalized throughout, have a torn esophagus from throwing up so much, feeding tubes and constant IV's with a concoction of medications dripping into them.
I switched to a midwife for my next pregnancies and she knew my history and she was incredibly attentive from the start. Although I tested positive often from ketones in my other pregnancies in those first weeks, I never needed to be hospitalized or needed IV's. (One of the crappiest things about hyperemesis is that once you get to a certain dehydration level it is super hard to recover from it-and every symptom just gets worse and worse-it is a vicious cycle-it needs to be diagnosed early on.) It was very difficult to care for my younger children and by pure will and an extremely helpful and understanding husband we made it through 10 or so weeks-those 10 weeks feel like 10 years when you have hyperemesis. The whole family pays a price when it comes to hyperemesis. It puts enormous stress on the family.
With my 5th child, I really felt the sickness fell into the category of severe morning sickness, not hyperemesis-there was a marked difference and although I felt very sick I could function day to day. I never wanted to eat, but felt better when I did. I was able to make basic meals for my family sometimes, and function-go outside, drive, get dressed every day, put some food into my mouth. .
I will be honest and tell you that one of the very frustrating things about having hyperemesis is that it is misunderstood. It has nothing to do with wanting to gain weight or not-purely biological, not one bit psychological. "Try eating crackers, or popsicles, or ginger or Gatorade, SeaBands, B6..." or "Oh yeah, I was sick too, but when I ate, or threw up I felt so much better" when you hear these things, even though you know it's mean to be helpful, it just feels lonelier and more frustrating. Nothing makes you feel better when you have hyperemesis-there is no food that sounds good, there is no food that does not make you feel nauseated, there is no food that does not take incredible will power and work to just chew and swallow...or even look at! (Which makes it so frustrating when you can't keep it down!) You can not even think of food without puking or wanting to puke. If you do manage to eat a certain food, once you eat it, you almost never want it again. Even this could be manageable for one or two weeks but any more than that, your body just gets more and more depleted and there are so many side effects because of that.
Here is a chart I found that I think helps explain the difference between morning sickness and hyperemesis.
The inability to eat and drink and nourish yourself, to care for your family, being in pain and feeling miserable 24/7, unable to go out into the world and function-just doing little "daily life things" takes enormous will and effort, absolutely takes it tolls after weeks and weeks. The fear of this illness not ending, watching the life you love unfold from the couch while you can't participate is emotionally draining too. There are days when it was so hard to get out of bed-days when I thought, "I can't do this anymore-I can't struggle through every hour feeling so physically sick and miserable every minute for one more long day." But I did-because I had to for the sake of my kids and this beautiful child growing inside of me. And I prayed a A LOT. I prayed that I would have the strength I needed physically, and I prayed at the same time that this baby's heart would still be beating at the next ultrasound. Oh, how I lived for those ultrasounds, as nerve-wracking as they were for me. That beating heart gave me the strength I needed to make it-2 weeks at a time. It meant all of this was worth it.
Here's that ultra-important last paragraph:
I also know I am SO lucky. I know that I could have not responded to the medication and ended up much worse, I know that many hyperemesis patients have this the entire pregnancy and are in incredible pain, away from their families in hospital beds. I know that I am lucky to be pregnant and 18 weeks along and finally I can feel so excited for this new little baby inside of me is sticking around. I know that much worse things can happen in a pregnancy and I am so incredibly grateful to have this child. I know that there are women who take pregnancy for granted and I am NOT one of them. I have had so many friends deal with incredible losses, and friends that have had to struggle with coming to peace with never biologically bearing a child after years of heartbreaking tests and procedures. I have friends who have been and are presently waiting endlessly and hopefully for an adoption referral. And I have had enough hard life experiences with pregnancy loss to never ever take a baby (or even a pregnancy) for granted. I also thought SO much-every day in fact-about moms all over the world who are sick-not sick because they have a wonderful new life growing inside them, but because they have had an awful diagnosis of disease.
Some links that might help:
Worth A Try
Against using Zofran.
I have always been very leery of taking medication during pregnancy. I was prescribed Zofran during one pregnancy and it did nothing so I immediately stopped taking it after a couple days. With this last pregnancy, because I couldn't stop vomiting I was prescribed it again, and it worked enough to stop the vomiting, but not the nausea. Now studies show it is not safe!
Dealing With Hyperemesis Guilt (caring for kids when pregnant)