hello. I am new to this forum and recently diagnosed. I've had a lot of medical problems, and just think there has to be a connection between all of them; I couldn't be that unlucky. I know there's a lot in medicine we don't know. so I'm just wondering, do any of the rest of you out there with IIH have sensory disorders also? meaning, besides photophobia, do any of you have hyperacusis so bad that you have to wear earplugs half the time because noises are like an assault? I can't bear certain noises, especially having to listen to more than one voice at a time, or anything at any significant volume. if I wear the earplugs it can be the same feeling I get if I take a Xanax; it keeps me calm. the way my kids voices echo in the bathroom makes me want to scream. also, my biggest problem is odor. any chemical scent is so overwhelming to me that I hold my breath or have to wear a mask. and exposure to it will trigger the same symptoms that I have identified as the IIH. I have to wear a gas mask when I am pumping gas. I can smell the residual perfume on people's clothes left over from their laundry detergent. I can smell people's deodorant. I can smell the hair conditioner left in their hair, hours after they have bathed. perfume is completely over the top; I cannot inhale. I have to carry a mask in my pocket all the time, but am just realizing that wearing it is probably causing me to rebreathe carbon dioxide to a certain extent and this will raise my intracranial pressure. also, simple touch can be overwhelming and feel too ticklish. I just don't want to be touched. it can make me feel like I'm going to jump out of my skin. this is beyond not wanting my head or neck touched which makes me feel dizzy and I'm sure you all understand that.

I do suffer with photophobia and have an aversion to loud noises. I was born with Anosia which means I cann't smell anything which from what you are saying with your sensitivity to smells, I'm so pleased I have. I also suffer terribly with sinusitus since having IIH, and also suffer from hayfever and allergies that I didn't have when younger.

I also struggle with colours, especially bright ones and I cann't read writing that's red or white depending on the background it's on.

for sharing, Heidi.

HI

I suffer from light it can trigger migranes bright light (espcially flashes off car windows etd) I have many allegies pets, dust, strawberries !! I also am sensitive to water ( especailly on my face i get water burn) I don't know if it is related to IIH no-one has told me there is a link

I also have hyperacusis. Or rather had. Post shunt it is much improved. But I still can get a migraine aura by getting hit with a flash of bright light. I'm going to see a neuro-ophthalmologist in a couple of weeks to see if we can find out what is going on.
It is entirely possible that the elevated cranial pressure is putting extra pressure against the cranial nerves, making they "not happy campers". They respond in strange ways. Just like my shingles racked nerves are sending messages to my brain that there is a cause for the nasty facial pain that I feel, but there is nothing on the surface of my face to indicate a problem. I wonder if this might be happening to all of us IIH'ers?