#diamox

[pinkplasticprincess]

It's IIH awareness month. Be aware of me

[molovane]

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.

[shyyycatsblog]

I have repeatedly told my specialist that the diamox for my iih isn't working anymore. For some reason, I seem to gain a tolerance to almost every medication I've ever been on 🙃 and so she upped the dose last time I saw her, which was two months ago. After a month, the higher dose still wasn't doing anything, so I called and asked if I needed to wait longer for a difference or if they wanted to try upping the dose again. They said they would call me back after they discussed it with my doctor. They never called me back. I have an appointment next month on the 16th, and I'm wondering if I should even bother calling them again, or should I just wait and confront them about it at my next appointment?

[theglowstickchronicles]

Diuretic gang is ✨ unwell ✨

[sleepy-spoonie]

After weeks of no medication & both my sleep doctor & neurologist refusing to treat me, on Friday, my neurologist started me on Nuvigil 150mg.

And so far, I hate it. I absolutely hate it.

Sure, it keeps me awake all day (so far), but I still feel tired. Not sleepy, but tired. I want to nap, but I'm awake and the Nuvigil doesn't want me to take a nap, so I just end up sitting and staring at nothing. It also suppresses my appetite so badly that when I do eat, I get sick. It gives me nearly debilitating headaches, compeltely different & worse than the ones that I already experience from my Chiari & Occipital Neuralgia combined. And I think, just like Modafinil, it's interfering with the Diamox which I take for CSF pressure.

I feel like I can't win, but I'll give it some time and see how badly I want to smash my head through a window before I call my doctor back.

[this-is-a-love-story-isnt-it]

I started a new epilepsy med, and it has one super weird side effect- the way your brain processes fizzy drinks? I was wondering why my soda tasted watered down but really fizzy. It’s like a two-part experience where the soda tastes flat and watered-down when it’s in your mouth, and then you swallow it and you feel the fizz and taste the CO2. Kind of like drinking sparkling water (the real stuff- not club soda lmao). It’s really weird, but I like it. The first time it happened I was afraid i was losing my sense of taste and was starting to get covid or something, but then that night I was looking at the list of side effects, and that’s one of them.

[briannamariec]