Part 1: The Beginning
On August 18th of 2020, my 11 year old son woke up super irritable, tired and a short while later developed a headache. He began throwing up about noon that day. He continued to throw up for 3 days at which point his pediatrician diagnosed him with gastroenteritis. I need to say here that since he was a baby he’s had a terrible gag reflex and a few years ago dealt with gastritis for about a year- his doctors now believe he never had gastritis but that it was a precursor to vestibular migraine (VM) and cyclic vomiting (CVS).
On September 11th, he woke up with vertigo and dizziness that did not go away. He described it like this: The room was spinning to the left and he was spinning to the right. He couldn’t walk without our assistance. At this point the throwing up got bad. He began to throw up like clockwork every night between 8pm and 10:30pm. His pediatrician referred him to an ENT.
The ENT suspected vestibular neuritis after an ENG/VNG and caloric test showed that he had a 50% deficit to the left vestibular nerve. We also had an MRI done and that came back clean, as well as blood work to check for Lyme or any other infection. Everything came back normal and unremarkable. He was having so many headaches, almost daily. He described it as a pressure sensation. He was dizzy, nauseous and continued throwing up daily.
On October 5th he began vestibular therapy. It was very hard on him. He began having vasovagal episodes – he would stop breathing and almost pass out during therapy. On the advice of his pediatrician and ENT we stopped the VRT and began doing stuff with him here at home- really stressing movement whenever possible. Both the physical therapist and the ENT felt that my sons case was complex and that there were possibly multiple things going on at one time.
Our ENT wanted him to be seen by a neuro-otolaryngologist and a pediatric neurologist. At the beginning of November 2020 the neuro-otolaryngologist redid the ENG/VNG and caloric testing. The repeat testing showed that he now had a 27% deficit. He said he believed 99.9% that he has vestibular migraine but that he didn’t work with pediatric patients and to follow up with pediatric neurologist. The pediatric neurologist ordered a CT scan to look at the blood vessels of his neck and head. All came back clean.
The pediatric neurologist told me that he didn’t agree with the diagnosis of VM. I asked why he didn’t agree. His response: 1. He wasn’t having classic migraine headaches and 2. the symptoms were constant -even though they varied in severity from day to day- therefore it couldn’t possibly be a form of migraine. He had also never seen a pediatric case of VM. He told me we would have to find another dr. This was a pretty devastating conversation. That day I ordered a book by Dr. Shin Beh, Victory Over Vestibular Migraine. I read the entire book in 2 days. My son had almost all of the symptoms laid out in Dr. Beh’s book.
I spent the next week trying to find a pediatric neurologist who had an understanding of VM. I didn’t find anyone so I took to twitter. I reached out to Dr. Beh and asked for help trying to find a pediatric neurologist who could help us. Within a short time he responded and took my son on as a patient. Our first consult was on December 11th 2020. He confirmed the Vestibular Migraine diagnosis with cyclic vomiting variant and Alice in Wonderland Syndrome.
At that point he had a daily, 24/7, constant low level of dizziness and nausea. It varied from day to day and some days were better than others. We began treatment December 2020 focusing on natural methods at first: diet, supplements, and melatonin.
Other symptoms that he has experienced intermittently:
-His vision goes blurry.
-He has episodes of serious brain fog and he will say I just can’t think right or concentrate on anything.
-He has also described seeing things in his visual field that just aren’t there.
-Every now and then his ears will ring-He has episodes of deep ear pain about once a week- anatomically his ears are fine.
-He will have pain just randomly in his body .
-He had about a month of on and off neck tightness before all of this happened.
-He describes this sensation of body parts not being where they should be.
-Moments where he feels like he’s about to pass out.
– Passing out and being lightheaded.
At the end of April 2021, we began a small dose of Cyproheptadine to try and get the daily nausea and dizziness under control. By the end of June the dizziness went from chronic (daily) to acute – only during a migraine attack. This felt like a huge win! The nausea however, has persisted and goes up and down daily in varying degrees.
At the end of October 2021, he passed out in the shower and then later again that same week while riding his bike. This led us to a diagnosis of POTS. I will write about that in another post.
In December of 2021, we upped the amount of Cyproheptadine to try and get the nausea and vomiting under control. It usually takes about 3 months to see any form of therapy help. We have also added in Zofran daily. This has probably been one of the hardest years of parenting I’ve ever been through and I know without a doubt it has been the hardest year of my sons life so far.