What IIH Feels like

So… after posting on my facebook that I would like to scoop out my brain, because that had to feel better than what I was feeling. And I had people who understand IIH ask for the scoop when I was done, and other people who don’t be extremely confused. So… let me give you an example as to what it feels like.

IIH, for me, is a combination of feelings.

#1. It feels like my head is going to explode. Not just a little tiny explosion… but a nuclear bomb level explosion. There is so much pressure in my head that I often times wonder if my eyes are going to fall out or if I will start leaking brain matter from my nose.


#2. Now Along with the feeling that my head is going to explode… it also feels like it will implode. People may think this is going to cancel each other out… but in fact they are not equal and opposite reactions, they are compounding reactions. The imploding adds to the exploding, and vice versa.


#3. It also feels like because of the pressure that my brain itself is trying to make its way and squeeze into my spinal column. My neck due to the feeling of my brain attempting to make its way down into my spine, is also very stiff, and I have a feeling that the pressure is messing with the alignment of my vertebrae. I can turn my neck and it pops, I can see the chiropractor, and he pops it, then 3 min later, it needs to be popped again… It seems like it is a never ending battle, me vs my neck. The neck being stiff isn’t the only issue… we also have to take into consideration the PAIN that is caused by trying to squeeze this 3 lb organ into a very small space. It hurts…

#4. It also randomly makes me dizzy… now I don’t know if this is just my vertigo flaring up again, or if this is something new, or if it is related to the IIH… but it seems to happen more (not 100% of the time, but about 65%) when I have IIH flair ups.

#5. I also get nauseous… and when the IIH flair up coincides with the vertigo… I have no idea how I am able to hold my lunch down, but normally I do.

Now… at least 3 of these things happen all at the same time… the first three. It isn’t always this bad… but to some varying degree, it always includes the three. The 3rd has just been constant, but the brain going into the spinal column feeling… that gets much worse when the IIH flairs up. People ask me… isn’t there something they can do for you? The answer is… we are trying. I’m on Diamox (which is supposed to help reduce the amount of Cerebral Spinal Fluid my overachieving body makes). I’ve had a spinal tap… which I hope to NEVER have to repeat. I’m still looking for a good neuro-ophthalmologist here, as I lost mine when I moved… but there are none in network within 40 miles of me, or really… even within 100 miles of me… so I have to find one, and stick to them because I have to go through all this red tape to *POSSIBLY* get them covered by my insurance as if they were in-network. So this means I would like to make sure I like them first… so I’m waiting to see if the doctor I’m going to see next Weds has any suggestions… and If I like and TRUST this new doctor. If this doesn’t work, then I’m going to see a plain old Neurologist, and see if they even KNOW what IIH is…


On another note, and yes just a note (for now), I saw my new audiologist Monday… but that is a post in and of itself. 


3 thoughts on “What IIH Feels like

  1. 😦 YUCK. I’m so sorry you’re having such a crappy health time.

  2. So sorry I haven’t commented on this sooner. I read it in my email when you posted it, but I hurt my shoulder and haven’t been typing much. Tonight I’ve been typing a lot, I may be very sorry when I try to sleep. But I had to tell you….You opened my eyes in this post!

    I agree with you, it is like my head is imploding and exploding at the same time! But I never put the pain in my neck as being contributed to the IIH! It was an lightbulb moment. I have that pain a lot! I always thought it was part of my migraines, I also think I attribute many of my IIH headaches a migraines. It’s so hard for me to tell the difference any more. Not sure I ever really could.

    Thank you for this post.
    PS….I’m getting CI number 2 September 25th. cross your fingers for me.

  3. Pingback: Adventures of a Deaf Adult | How the time passes, a new year

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