VeDA Forum

Notifications
Clear all

Feeling burdened for my son, vestibular disorder


CarrieB
(@carrieb)
New Member
Joined: 3 weeks ago
Posts: 2
Topic starter  

As a mother of a 27 year old who has suffered from various health problems since he was 16, I'm feeling increasingly helpless with regard to his vestibular migraine disorder. 

It is very hard to watch him being incapacitated by his condition. Some days he just sits with his eyes closed and his head in his hands trying block everything out. Since the summer of 2019 he cannot look at any type of screen, phone, TV,  laptop etc without becoming very unwell. He cannot read, write, draw, play his guitar, listen to audio books etc. Some days he suffers such extreme fatigue I worry for him. He is on a very restricted diet, no chocolate, no caffeine,  no msg, no dairy,  no yeast. 

I researched his symptoms in 2019 and through a private physiotherapist I managed to find a neurological specialist. He put my son onto medication. Then Covid hit. 

Taking this medication he was told to up the dosage until he reached a certain dose. I felt concerned this wasn't being monitored as he was suffering heart palpitations and some other side effects. He is unable to work, has never worked since he graduated  and he feels the weight of not doing so but at the moment it would be impossible, I financially support him doing my utmost to not let him feel bad about it. With a consultant only committing to a phone call every 4 months it seemed negligent. 

After many phone calls, emails, sending of letters and a GP who couldn't care less I managed to get him an appointment with a second specialist in an ENT hospital where the physiotherapist carried out many tests. He is now on a new medication and with a referral for physiotherapy. Our GP is refusing to sanction the physiotherapy, only signing off the medication. 

I'm furious. Every step to recovery demands everything from you until you are totally wrung out. I will battle the GP to get my son the care he needs.

 

Thank you for listening. We are positive he will get well and recover. Any advice would be very much appreciated. 


Quote
Topic Tags