I have just joined this forum and I guess I am joining to try to cope with my sons illness.
My son developed VM when he was just 9 years old. To make a long story short he had constant dizziness and violent headaches for 8 months before we got diagnosed by an audiologist. we were referred to a vestibular rehabilitation therapist, who was amazing and sorted out the dizziness for him. I was so elated and everything seemed to be ok until I noticed that my son was getting more and more tired as the end of year came upon us. He had started wetting the bed at 10. The audiologist had explained that his brain was so exhausted it just stopped waking him up at night. Then one night last July, when he had been massively tired for about 2 months, I heard him crying and really sobbing at 4am. I instantly ran into his room knowing that something worse than bed wetting had happened. He had his hands on his head and kept saying " I can’t stop the voices in my head". For those of you that will read this, if any of you are mothers, I am sure that you will relate to my panic. This went on for 2 further nights before I got my 10 year old back in front of the audiologist. He explained that the left side of my sons brain was talking to the right hand side and it was a result of chronic exhaustion, ie the VM.
How do I control his VM? He is in bed monday-sunday at 8.30pm and his activities are limited, ie he just plays rugby. But if I go outside the structure for any length of time, it comes back with a vengeance. My son had a Spanish trip for a week, just last week. I asked the school if I could go with him, in case anything happened like I have just described and so that I could sleep in his room where he would get undisturbed sleep. I did all of that , he had a great time but was up until 10.30-11pm every night and on many tours during the day, and full of games at night etc non stop activity. He seemed to manage ok, was tired but doing quite well. We came home and 1 day later the dizziness came back again with a vengeance, pressure in the head, sensitivity to light, headaches and whilst I try to get him to school, he is home again within 2-3 hours. I am just so worried as to how he is going to cope with this as he gets older. I know he doesn’t have cancer and it is not life threatening but it is so difficult to watch, he is not a moaner but my heart aches for him. He is just too small. He is only 11.