To all the pregnant people suffering with HG – you are warriors and I hope you find this resource helpful.

In 2017 I had hyperemesis gravidarum (HG) and didn’t even know it as my doctors did not diagnose me. Now in 2022 I’m pregnant again with HG even worse and have learned SO MUCH from several communities. I found myself retyping info into Facebook posts frequently, so I decided to collect it all here in one place for quick reference.

Sections: 

Websites

Hyperemesis Education & Research Foundation (HER)

My most cited pages: 

  • Common medications – most women with serious HG find that a combination of medications is the most impactful treatment. Success and combinations vary by person – I highly recommend checking out the Facebook groups to get more ideas of common modern combos from HG sufferers.
  • HELP Score – a self-scoring tool I used to advocate for treatment (I personally don’t vomit as frequently as many classic cases and this is why I hadn’t understood I was suffering from HG my first go-round — but my nausea is completely debilitating and lasts far beyond the first trimester. After scoring moderate in this tool I joined the Facebook groups and realized these are definitely my people. No one can truly understand this disease without going through it.)
  • Professional Referral Network – find a provider near you that knows how to manage HG.

HG Pharmacist

HG is Genetic

It is incredibly frustrating that there is no international standard definition of HG, and even more frustrating how many medical sources are not staying up-to-date with the latest research. Do a Google search for causes of HG and you’ll most likely get an old unanswer along the lines of “no one is sure, it might be the HCG hormones of pregnancy…” WRONG. 

Check these out to better understand the genetic links being uncovered in modern research:

  1.  Researchers identify gene mutations linked to pregnancy sickness (March 2022)
  2. Sick: The Battle of HG Documentary (2020, 32 minutes)
  3. Placenta and appetite genes GDF15 and IGFBP7 are associated with hyperemesis gravidarum (2018)

Terminology

Common Vocab used by the hyperemesis crowd:

  • Safe foods – these are foods that you are able to keep down. They are usually VERY strange, VERY limited (often a person can only tolerate 1-5 types of food, if any), and they often change week to week. Coke, Coke Slurpees, and popsicles are some of the most common safe foods. In a FB group search for “safe foods” or “safe drinks” to get many results and ideas — sufferers will also often comment on preferences for foods that are more gentle coming up. Many HG sufferers cannot keep plain water down, so safe drinks are an absolute must for hydration. Our brains will not allow us to keep down food we choose to eat – so it’s important to listen to our bodies for safe foods and just eat it, whatever it is, so we don’t starve.
  • IV, Midline, PICC line – in order of least to most invasive, these are three methods for delivering intravenous hydration and medication. Most HG sufferers benefit from at least one of these treatments.
  • Zofran pump – similar to an insulin pump, the Zofran pump connects to your body and delivers a constant drip of Zofran medication to your system.
  • Fluffy – this means you are having a good day. Interpretation varies, but generally it is used as the phrase “medicated fluffy,” as in you are feeling medicated enough to be semi-normal that day. 
  • TPN – Parenteral (Intravenous) Nutritional Therapy. Severe cases of HG will need nutritional supplementation such as TPN.
  • Gallbladder – an organ that stores and concentrates bile. Many HG sufferers have gallbladder issues and even need removal.
  • Ptyalism – extreme salivation. Many of us suffer from extreme salivation and need to spit into a cup all day.
  • Parosmia – altered sense of smell (and taste is affected). Most HG sufferers have extreme parosmia. We describe smells of even basic things like water, our own breath, or our loved ones as being like a “rank wet dog,” “the taste of hairspray,” or “bitter rusty metal.” 
  • Z-poops – these are devil sharp, tiny bowel movements caused by the drug Zofran (odansetron), along with extreme constipation. Google in the Facebook Group to see the many creative and very personal ways people manage z-poops and constipation.

Granisetron

In spring of 2022 I learned of a medication called granisetron (brand name Kyrtril) from a FB group. At this point I had tried Zofran, Diclegis, Compazine, Meclazine, B6/unisom OTC, and experienced various failures and a couple successes with these (some gave me awful vertigo and hallucinations, others worked but only a small percentage). May be helpful perspective to note I’m not someone who takes many medications even outside of pregnancy and I’m especially cautious during pregnancy. I give birth at home and I generally steer clear of medical interventions with pregnancy and birth. For HG though, medications were absolutely vital to my health, my baby’s health, and mine and my family’s quality of life.

I sent one of my midwives a request to try granisetron along with the three sources listed below. After about a week on this I noticed several improvements – less nausea, I was finally able to eat some normal food after months of limited safe foods, and less constipation. At 22 weeks I tried to wean off this drug and after only 3 days on a lower dose I was starting to slip back to 24/7 sickness that kept me in my bed and unable to eat normal food so I went back to my regular dose (two 1 mg pills/day) and will try again in a month. In source #1, note Table 2 where a 1mg dose resulted in 88% experiencing reduction of vomiting and 63% experiencing reduction in nausea. 

Facebook Groups

Unfortunately many, perhaps most doctors do not understand HG and their treatment plans (or lack thereof) can be very harmful. Many will tell sufferers that we are overreacting, that we “look fine,” that nausea and vomiting are normal and will go away at 12 weeks, or even dismiss severe weight loss citing that we needed to lose weight anyway. Facebook Groups and the websites listed above are invaluable resources – via networks you can learn from tens of thousands of HG sufferers who have been through this before and found what works.

You will get through this. Take it one day at a time and find as much support as you can. ❤