Altoona, FLBarry L. is one of many patients who say they have suffered from Zicam smell loss. And like the other patients, Barry is angry about the Zicam side effects. Unfortunately, Barry has been told that he will never regain his sense of smell.
"On January 3, 2009, I had a head cold so I decided to try Zicam nasal spray," Barry says. "I used it two or three times and it burned my nose really bad when I used it. It didn't seem to help my cold—in fact, my cold even got worse.
"I noticed the next week that my sense of smell and taste were gone. I thought it was a temporary result of the cold so I didn't do anything about it for a couple of months. Then, I got worried. I went to the ear, nose and throat (ENT) doctor and he sent me for an MRI to rule out a possible brain tumor. Eventually, he determined that I appeared to have damage in the nerves in my nose that resulted in a permanent loss of smell and taste.
"I wanted a second opinion, so I went to a different ENT. I was diagnosed with having damage to the nerve endings in my nose, which caused a permanent loss of smell—anosmia—most likely due to using Zicam."
Barry says he has spoken with a group of students and professors at the University of Florida who study smell and taste. They told him that his brain is programming itself to recategorize various smells and tastes.
"For most things, there is no smell," Barry says. "Where there is a smell, things don't smell like they used to. It's like there are two categories—they either smell absolutely terrible or there is no smell at all and the result is that taste is the same way. Peanut butter, hamburger meat and other things all taste like rotted garbage. Other things have no taste.
"I lost 45 pounds. I didn't want to eat things that either didn't have a taste or didn't taste good. The only things I would eat were salads with Italian dressing. They don't taste like they used to, but they had a slight taste that I could tolerate. I've learned to like textures, rather than taste.
"I've been told there's no hope of getting my smell or taste back. The people at the University of Florida told me that I should keep trying with different foods and smells because my brain will keep trying to reprogram itself. Not that I would regain my smell or taste, but I could recategorize things.
"The biggest problem I have is that I can't smell things like chlorine gas, natural gas or propane. If I were in a room with a gas leak, I would never know. If I picked up rotten meat, unless it looked rotten, I wouldn't know I was eating spoiled meat. That is a lot worse than the pain and suffering from not tasting food.
"I have a lot of anger about this. It angers me when I look on the Internet and I see the president of Matrixx [the manufacturer of Zicam] saying that the company is not responsible, yet a lot of people are suffering from this."