u/Outrageous_Ranger_10

I have every symptom of iih but got mri they saw fluid behind me eyes. .

No tumor ,eveything fine. (Praise)

Got mrv ,nothing wrong (praise)

Went to ophthalmologist *no fluid build up (praise).

My symptoms: bottom of my neck and skull ache.

Pulsatile tinnitus for 6 months one ear.everytime I stand my head pounds and my ears ring. Major pressure.

My nose is leaking everyday. Clear.

Pressure so much pressure in my frontal head. Blurry eyes. Nauseous everything comes in waves through out the day.

Never in my life suffered from headaches.

Something is wrong.

I was fuckin normal 6 months ago. Now I feel like misery. Its worst at nighttime. Im in diamox 250x2. So I feel like shit feeling like shit on diamox. Im beyond depressed. My next apt is with another neurologist because the first one suxed.

I need a spinal tap.

I cant live like this. . Im so fuckin depressed. Im 50 yrs old women. I cant wk out. I cant take my kid places. What next? I have been on diamox for 2 1/2 weeks. Just venting .

Did a freaking mrv thats normal (godbless)

But I have tension like headaches all day everyday and i server pulsatile whoosing tinnitus in m ear. Now what????

Imma go get a spinal tap. Aint no way this is nothing. Oh in Diamox fkin miserable makes me worse. Then im ok then im worse then im Ok then im worse.

Should I see an upper cervical chiropractor? I have neck pain at the same time my head hurts. All started 6 months ago. Wth

I guess I'm officially part of the IIH crew, even though I never wanted to be.

About 6 months ago I developed pulsatile tinnitus. I saw an ENT, had all the testing, and an MRI. Thank God there was no brain tumor or obvious blood clot. The only thing they mentioned was fluid around my optic nerve sheaths, but I really wasn't given much of an explanation. I also had an eye exam, and they didn't see anything too concerning.

Then about 4 weeks ago, everything changed. I wake up every day with a headache that never goes away. My forehead feels like it's wrapped in a tight band, my neck aches, my vision is blurry, and I constantly feel pressure in my head. It comes in waves, but it's always there.

I'm taking Diamox (acetazolamide) 250 mg twice a day, but about two hours after I take it, I feel awful. The head pressure seems worse, I feel spaced out, and it's just miserable.

The neurologist thinks it might be IIH, but says we have to go through the process to find out. My neuro-ophthalmology appointment isn't until November 2nd, and I don't feel like I can wait that long. I pushed to get an MRV, even though it'll cost me $700. I don't care—I need answers. I also found out my neurologist doesn't perform lumbar punctures, so now I have to figure out where to go for that too.

I'm beyond grateful this doesn't appear to be a brain tumor, but something is clearly not right. I tattoo eyebrows for a living, and my blurry vision is starting to affect my work.

For those of you who have been through this, did Diamox eventually help? If your MRV was normal, what happened next? I feel scared, overwhelmed, and honestly exhausted. I just want my life back and would really appreciate hearing from anyone who's been where I am.