I really need advice or support from people who understand IIH/chronic illness because I honestly feel lost right now.
I have idiopathic intracranial hypertension and I’ve been taking acetazolamide since I was 12. I’m 17 now.
I used to take 3 pills a day, but I started getting worse headaches and migraines, so my doctor told me to take one extra pill. Then I got hospitalized again, and about two months ago they increased my dose to 6 pills a day. I’m still taking 6 now.
The problem is that I don’t feel okay physically or mentally.
Even with the medication, I still get constant headaches, migraines, pressure in my head, and this horrible feeling like I’m carrying something inside my head that’s trying to come out or explode. Sometimes it feels like electricity or pressure moving through my head and it scares me.
But mentally things have also gotten really bad since starting acetazolamide and especially after increasing the dose.
I feel like I can’t think clearly anymore. I can’t stay focused, I forget things easily, and sometimes I genuinely can’t process what’s happening around me. There are moments where I can’t even follow a simple conversation.
I feel exhausted all the time for no reason. I wake up already tired.
My mood changes constantly without any obvious reason. I get irritated easily, suddenly feel extremely sad, cry randomly, or feel completely lost and disconnected. Sometimes I feel like nothing interests me anymore, not even things I used to enjoy.
I’ve also been missing a lot of school because of doctor appointments, hospitalizations, and how much my head hurts all the time, and my final exams are coming soon. I’m struggling to study or focus at all and it’s honestly terrifying because I feel physically and mentally exhausted all the time.
There are moments where I feel like something is seriously wrong with me mentally and emotionally, but I don’t know if it’s the medication, the IIH itself, or both.
I recently emailed my neurologist explaining all of this because after my last hospitalization they told me to contact them if symptoms continued, but I never got a response.
If anyone else with IIH or on acetazolamide has experienced this, please tell me. I really need advice or support because I don’t feel okay.