For 2 years my 13 yr old daughter has been suffering with giddiness/nausea & room spinning symptoms

It started 2 years ago, my daughter woke up screaming saying the room was spinning. When I tried to get her up she was walking like she was on a boat. She was feeling very sick and not wanting to eat. I contacted the drs which at this time was over the COVID period so we had a phone consultation. The gp though perhaps it was labyrinthitis and put her on a low dose of Stemitil. She continued suffering from the symptoms for 3 days while on the Stemitil. A week later this happened again. I gave her the medicine and contacted the gp who said just to stick with the medicine when she has the episodes. She then suffered for 3 days again. A couple of weeks later it happened again so the gp said to bring her in as they wanted to see her. In the appointment they examined her ears and said they saw a growth in her ear. We were then fasttracked to ENT and she had an MRI of her head. This all came back clear. ENT said there was no growth in her ear and her hearing tests came back normal. This went on for some months, going back and forth for appointments with audiology and ENT. She was then referred to neurology who we had a face to face appointment with where they asked me to monitor her blood pressure morning and night for 1.5 months. In this time our home blood pressure machine kept indicating an Irregular Heartbeat. She was put on a 24hr tape monitor. They picked up she has extra beats but scans showed everything was ok regarding her heart and valves.

We have currently been referred back to ENT and we are waiting for an appointment which potentially will not be until the summer. All the while my daughter is having 2 - 3 episodes per month. She is unable to attend school, she is unable to stand, wash or dress herself as she feels so giddy. She cries that even with her eyes closed the room is still spinning. Recently she has been crying as saying she cant do this anymore!! I am at my wit's end as what to do as nothing we do seems to help in this situation.

I have taken to the internet to try and diagnose her and have come up with 3 possibilities we think it could be:

Vestibular Migraine - She doesn't always get headaches though and is not sensitive to light

Meniere's Disease - Her episodes do not last 2-3 hours, it is more like 3-5 days

Chiari I Malformation - This seems to correspond the most as it ticks all the boxes. She is extremely hypermobile and a paediatrician did say that when she was younger my daughter may have Ehlers-Danlos Syndrome but no other doctor have said this.

I have come to this forum to seek professional advice as to what this could be and how we proceed, and who to see to get a diagnosis. I am very grateful for any suggestions/help as I am on my knees as to what to do.

Thank you

Nicole

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