do I have IIH?

Not to scare you but it sounds like you have a spinal fluid leak.  The clear stuff that drips out of your nose could very well be spinal fluid. I'm not an expert, but I've been dealing with stuff like this for a couple of years, too. It doesn't drip out of my nose, but it goes down my throat.  You need an ENT who specializes in it.  Do you have FB? There's a page for CSF Leaks called, "CSF LEAKS (Cerebrospinal Fluid Leak & IH) Private Group" There are a lot of people there, including me who suffers with the same stuff.  There's a list of doctors who deal with it. There are very few doctors who really know what they are doing when it comes to CSF leaks You might only need a blood patch. That would be the easy fix!!! Does your brain feel like it's pressure and it's sinking? 

Hi

Seems like you have been on a bumpy ride

I am an 18 year old female and yes was 15kg overweight when I was diagnosed with IIH the extra kilos runs in my family both mum and dad like there food. Anyway I was diagnosed 2 days after my 18th and have since lost over 16kg still have to lose another 5kg and it's proving to be hard.

It came really suddenly was never prone to headaches even as a child started off at the GP with electric shocks lasting more than a few days went back then sent me for MRI just simple one as did not go away They first thought I had MS (multiple sclerosis) I would go to bed and black out and come back and think OMG this is not normal not sure how long I would be gone for .... Before this I was healthy even skipped flu seasons seems like my luck ran out had a really bad bug at the beginning of the year I fever headaches and after that it just went downhill My GP ran some regular blood tests everything came back normal same with MRI.

Went home and thought that's it I'm going to the optometrist maybe I need glasses as it just got worse. A optometrist with a simple eye tool saw that my optic nerves were swollen more on right than left papillidema he said straight away you have pressure on your brain and suggest you go to hospital big panic we off arrive at hospital really dumb and a waste of time and stress after waiting 2hrs we got a neurologist an internship new one looked in my eye for 2 minutes his phone rang 3 times told us nothing was wrong couldn't see anything Mmm who's lying the nurse organised a referral to a opthamologist 2 weeks later yes you have swelling .

If you don't have this that is good it is an important factor. On my birthday went into hospital under a neurologist two days later I was diagnosed I had 16 blood tests an MRI of blood vessels in brain and a Spinal tap (Lumbar puncture) My life changed forever I was scared worried think I lost the weight from stress My pressure was 32 quite high but heard of higher think it's supposed to be 20

Your next step will be to probably talk to a good neurologist look them up none of them specialise in this as its a rare condition you will have a Lumbar Puncture it's a main method of diagnoses for IIH. Don't stress or worry but I'm surprised they haven't done more but mine was picked up through a simple person who hands out glasses tell you.

You need to have a MRI with die called gandelinium something like that they put it in your arm when you have MRI. It lights up the vessels in the brain it tells them if you have Venous Sinus stenosis narrowing of veins or blood vessels I had a bit of that they said to me they've seen worse.

Went to Sydney as we were not happy with neurologist he was not really into it and didn't have a plan.He put me on medication straight after the LP was sick the whole night medication called acetezolomide makes you pee went home was home for 1 night and was re admitted put me on a drip was dehydrated just threw up everything they completely stopped medicine and never heard from the neuro again. Charged a arm and a leg too Sydney was much the same except for our last appointment which we were planning to cancel an amazing lady bent over backwards I was down 16kg by this time she requested a repeat spinal tap a MRI and Blood tests all on the same day and it happened the sad part is my pressure was still 32 after all that weight loss she felt bad for me too I will never forget lying in the bed looking up at her and her saying to me we are going to sort this out I flew home the next day was a bad idea but she said I could it would be no problems slept on the plane floor.

Lucky for me she is moving her whole family to same state is a TOP secret so she will be by me but was a big mission to find a good neuro. Iam currently on Frusemide and must say I'm feeling good well better get the odd headache but what worried me with you is that you said morning headache in the first few months every morning my head would hurt till after lunch get a bit better and start up again with bed time something to do with horizontal lying I guess but you have to sleep Tiredness is a big one I sleep well 9 hours easily and can do with a few hour nap in the day once a week.Ringing in ears once or twice black dots in vision and floaters like white like lightning

If I were you I would go to neuro talk to them tell them everything you feel suggest they do more or go to optometrist ask him to check optic nerves

LP is next

MRI of veins blood vessels guided with die

Blood Tests (help if something else is wrong)

Good Luck and hope I didn't Bore you

My advice is to get a simple when your nose leeks. Someone once said if csf drys on a tissue it leaves a halo.

Get the doctors to test it.

Other thing is you might have IIH and its that high your leeking. Wonder if it helps your headaches when you leek?!?

First step to get IIH diagnosis is to have an Lumber puncher. Should be bettween 5 to 15. They said I was ok at 22 as I'm haapp