I’m losing my mind and my mother
My mother (50) has suffered from iih for almost 4 years now (late 2021). Alongside her iih, she suffers from vertigo, migraines and fatigue which all appeared around the same time she was diagnosed with iih. Her vertigo is ruining her life. She used to be an overall healthy individual. She is the most caring and welcoming person I know. Our house was filled with guests almost every weekend. My mother never says no to anything. If you need help, she will do anything in her power to assist you. It hurts me to see her almost bedridden now. Her vertigo prevents her from completing everyday tasks she used to love such as cooking or hosting friends over. She’s no longer her cheerful and bubbly self. She can no longer bear being around people nor leave the house.
I've been trying my best to support her. It hurts me physically seeing her in this state. Every doctor she has been referred to has been incredibly dismissive. I’ve had to advocate for her for years. Her primary care physician is also incredibly unhelpful. There has been numerous times where I had to ask her to check for underlying issues or something as minor as getting a blood panel. It wasn’t until 2023 she was put on acetazolamide for her iih. And since 2021 she has gotten multiple MRIs done to check for factors that may be causing her symptoms, but nothing came up until last year when I asked her neurologist to allow her to get another MRI but with contrast. It’s immensely frustrating they never cared to look deeper. Weeks later, we were told she has bilateral transverse venous sinus stenosis which basically means there is significant narrowing of her transverse sinuses which are crucial for draining blood from her brain.
So what was their solution to that? Stenting. We met with an interventional neuroradiologist who seemed a bit shocked to know she’s been undiagnosed for years so he told us stenting was the best treatment for this. She agreed to get the procedure done beginning of this year. Days after the procedure, she experienced very painful headaches she has never before but it was all apart of the healing process. 3 weeks after that, she was migraine free and vertigo free which brought her and all of us (her family) tremendous joy. We never thought this day would come. But that joy was short lived. The vertigo is back now 3 months later and the migraines are even more intense than before. She is back to being bedridden and incredibly depressed this time.
I’ve cried almost every night praying to God to guide us towards a treatment that will actually work. I’ve been doing extensive research to see maybe there’s something her doctors aren’t looking for. It makes me feel like I’ve failed her. I can’t even look her in the eyes anymore without getting emotional knowing how she was before. I’m honestly not sure why I wrote this. Maybe I just wanted to vent. Or perhaps I was looking for support. I know she isn’t alone maybe one of you is also going through this.