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Vestibular Migraine & Cyclic Vomiting Syndrome Part 2

Part 2: What Therapy Has Worked and What Hasn’t

Disclaimer: I am not a doctor. These are things that have worked for my son under the advice and care of his drs. Please consult your doctor before trying anything written below.

Whenever my kids have gotten sick over the years I always grab a notebook and chart their symptoms, medication I give them, etc. I have done the same for myself in my own migraine journey. When my son woke up that morning sick I got out my notebook and began to chart. What I didn’t realize at the time was just how invaluable the daily tracking of data would be.

I used a notebook from August 2020 to the first week of January 2021. Then my husband set up google sheets and I switched over to that. I have over a years worth of daily data at this point. We track how he feels when he wakes up, at lunch and then again at dinner. We track how many times a day he throws up, what medicines he has taken, what time his medicine was taken, how much movement he’s gotten in, if he’s constipated, if he’s eaten any food that could be a trigger. This daily tracking has allowed us to see what has helped him and what hasn’t.

What has helped:

Each item below has been prescribed by my son’s neurologist.

Melatonin– This is one of the very first things we tried. We started him on 1mg and slowly moved up to 7mg. The melatonin didn’t help/hurt the dizziness or nausea he was experiencing but it did have a positive impact on how much he was throwing up. It cut down the episodes per night significantly. We did find that the more we went up in mg of melatonin the more irritable he became. 4 to 5mg seems to be the happy place for him. There is some evidence that suggests melatonin can work as well as amitriptyline. https://jnnp.bmj.com/content/87/10/1127

Cyproheptadine– He began a 2mg dose of cyproheptadine at the very end of April 2020. By the end of June the daily dizziness went from every day to every 7 days when he was also having a migraine headache. Since then he will sometimes go 15 to 20 days with no dizziness and when it does come it only stays for a day or two. The main downside of this medication for him was the increased sleepiness. We went down to 4mg of the melatonin and now down to 3mg as we have upped the cyproheptadine to 4mg. We are hoping that in the next month or two we see a positive impact on the daily nausea.

Zofran- In the beginning Zofran was harder to use because it was causing my son’s headaches to be a lot worse. Once the headaches became less frequent and severe we have been able to add it back in.

Promethazine- This works really well as long as he can use it at night. The biggest downside is that it causes him to be very sleepy.

Naproxen- We have used this since the beginning when he has an actual headache. It has worked very well in treating head pain without having to be taken more than once a day.

Predisone- He has been given a few short doses of predisone throughout the past year. Each time it has lessened his symptoms because it cuts down on the inflammation.

IV fluid- Iv fluid seems to help with the nausea and also give him energy as it replenishes his electrolytes.

Electrolyte drinks- These help him not get dehydrated. Dehydration makes all of his symptoms much worse.

Ginger- Home made ginger ale, ginger tablets, ginger candy etc- it all calms the nausea.

Menthol- He sucks on Halls cough drops and peppermint to help calm the nausea.

Supplements– we have found the following helpful

Magnesium

CoQ10

B2

Daily vitamin with iron

Omega 3

L-Carnitine

What hasn’t helped:

Nexium- He was put on Nexium by his pediatrician to try and help him eat and heal his esophagus. It just made him more nauseous and in turn throw up more.

GammaCore Sapphire- The gammacore device stimulates the vagus nerve. He began passing out more often after we started using the device. It really didn’t have an impact on the nausea, vomiting or dizziness.

Granisetron- This is used for nausea and vomiting. We saw that for him Zofran worked much better and faster.

Berberine- Before we saw an ENT we went to a functional medicine doctor who prescribed my son berberine. We had used naturopathic medicine before and didn’t hesitate to give him the prescribed amount. It almost killed him. It increased the dizziness and dropped his blood pressure dangerously low. When I told our pediatrician what happened his exact words- if that ever happens again go straight to the emergency room because of how low his blood pressure dropped.

Next up- Part 3: Diet

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