PATIENTS ANALYSIS OF ILLNESS
Headache pain and other suffering due to inhalation of odorants, such as perfumed products, inks, dyes, soaps, fabric conditioners, petroleum products, smoke, paint, building products and many more.
I have had some of these symptoms most of my life but only for the past seven years in their present almost unbearable acute stage of constant misery. The acute stage was brought on by approximately six hour exposure to wet paint on 1-15-03. The symptoms have only gotten worse sense that day. I had a similar experience in my early twenties when I was exposed to raw gas fumes every day for a week or more, but got better after four weeks and went back to work. I have had the headaches to deal with every day since.
To describe the condition, I would say it feels like a raw area or nerve in the top of my nasal cavity that experiences pain immediately upon contact with a stimulus. The pain radiates forwards behind my eyes and backward under my skull. Then the neck muscles contract on both sides and cause much pain in my neck and cervical cranial zone.
If I can get completely away from the culprit odor or quickly eat something, the pain goes away. “Yes”, I don’t have this pain when I am eating and it returns immediately after I have swallowed the last bite, sometimes with a vengeance.
If I can’t get away from it, then other symptoms start to appear such as migraine type headache, nausea to the point of throwing up, irritability along with flue like symptoms.
I thank God I am hyperosmic, because is allows me to detect even very small quantities of a known offending odor and a chance to get away from it, before the bad symptoms set in. But getting away is always a problem and most times I just have to bear it.
I went to see my first doctor over twenty years ago with the same headache, long before I had realized that the content of the air I was breathing, was the problem. After many doctors, test’s, prescription drugs, and therapies that all fell short of finding the cause of or stopping my headache, I gave up for a time.
Later on with the headaches getting worse every day I had started to realize that in some areas of the building where I worked, the chemical odors were heavier than in others, and made my head hurt more intently. I stayed out of those areas as much as possible. Tried acutunture, chiropractic’s (again for the fourth time) and finally pain therapy, all to know avail. About this time I was exposed to the wet paint I mentioned earlier. The smell was very strong and overwhelmingly painful to me and I finally left with a bad headache. Tried to go to work the next day but had to leave and was out of work after that for six weeks. I simply couldn’t find any air that I could breath that wasn’t painful.
I went to see an ENT that I had seen before, while wearing a crude nose clip I made so I wouldn’t get sick in his waiting room from perfumes and other chemicals. I was stunned when he said that very little research had been done in this area and that I would not find any help for this problem of which he had no diagnosis. Without a diagnosis my health insurance would not help me with any medical expenses. When I asked what I could do, he said I would have to learn to live with it. That has turned out to be impossible. There is no chance of life with this condition.
After sinking into a deep depressive existence (seven years), I have recently decided to pull it together and try again
I managed to get a diagnosis of “Neurosclerosis” from another ENT. That allowed me to go to Shans, where I had great anticipation of getting help, but got none.
I’m not a doctor, so it has been hard to research my problem on the web. However I have reviewed enough medical information, scientific studies, theories and educated opinions to be able to form some opinions and theories of my own. The individual sufferers I have found on the web with olfactory or nasal problems have some symptoms very different but in some cases very close to mine. I have enclosed clips and articles from some of their testimonials as to their condition. Mr. Lee J. Nelson’s case (www.modbee.com) I found very interesting because his pain was constant and located in the nasal cavity like mine and his painful experience with the nasal endoscopy specialist describes exactly an experience I had at Shans.
I now have a good understanding of the olfactory system and how it relates to the Trigeminal nerves. The location of the initial pain upon breathing in air is in the area of the olfactory epithelium. I figure I have a contact point in the anterior ethmoid neurovascular complex (Anterior Ethmoid Syndrome), or an inactive, abnormal, depleted, or nonexistent epithelium mucosa. Since some Trigeminal receptor fibers reside there, and that they are responsible for signaling pain, I have concluded that their neurons should be examined very closely.
Considering that the pain really never goes away, could there be a problem with “neuron adaptation” of the Trigeminal neurons? The location of olfactory receptor neurons in the nasal epithelium allows noninvasive access to these neurons with an endoscopy. I also would like to suggest that the Trigeminal fibers which are sheathed, could have myelin degeneration leaving the fibers exposed and more irritated than they should normally be when in contact with an irritating odorent. Maybe a biopsy could be taken of these neurons and analyzed by use of a scanning electron microscope to investigate this and/or any other possible problems in the mucosa.
Another possibility is that the nasocillery nerve could be so close to the skin that it is exposed (much like the blood vessel on the side of my sternum that was cauterized to stop nosebleeds) and irritated at the passing of air along the later nasal wall. The myelin and neurilemma protective coatings could be damaged or missing.
There is also the possibility that I am the victim of Middle Turbinate Headache Syndrome (Wolff, 1948) because the middle turbinate is supplied by (a sensory nerve) the anterior ethmoidal nerve.
As bad as I dread to have a scope because of my last experience, I feel that a through endoscopic exam by a specialists is where we should start before looking at medications for depression and pain, neurovascular compression, or other ideas.
I hope I haven’t insulted any one’s intelligence or shown the lack of mine, with what I have had to say here, about something I have absolutely no training in, but after asking for help and getting none, I had to do something.
I know how rare my case is, so if you don’t want to take on a case such as mine, could you recommend someone who will.
I have read most of what you folks say. It is interesting. I have had a really difficult time the last two days with the same symptoms. I know - whining after two days about something people have had for years/decades sounds bad. I have been able to smell everything too clearly as of late. I had this happen before a sinusitis attack in early January too. People's breathe and body odor, their perfume and deodorant stink. I smelled a friend's coffee before he rounded the corner this morning and his coffee breathe killed me. One guy I talk to all of the time nearly made me puke with his bad breathe. I hope this is temporary.
I am relieved to know that I am not alone. Everyone thinks I exaggerate my symptoms. For me it is perfumes, shampoo, bathing soaps, laundry detergent, just about everything under the sun. I have been able to find unscented bathing soap, laundry detergent, and body lotion which helps with that aspect of the problem but I work in a hospital. I am surrounded by disinfectants and other strong odors all they long. I spend most of my days sick because it also aggravates my migraines and my sinusitis. Thank you all for confirming this issue because everyone else makes me feel like I am just looking for attention or something. Hope someone can find a solution though. I am currently trying to find one myself and if I do I will surely share it with the rest of you!
I feel a lot less like a nut having read most of the comments in this thread. I too suffer from hyperosmia and am very sensitive to smells of every kind. I have smoked for many years and quit a few times only to start again because I can't stand the smells out there in the world. As much as smoking is not good for anyone, it deadens my sense of smell enough to make it through most days without gagging or hurling.
Thinking back to when I first noticed my heightened sense many years ago, which was when I was 4 years old and had my tonsils clipped, they used an ether drip to put me under (this was in the mid 60's). To this day, I gag at the smell of ether and any hairspray/aerosol propellants which tops my list. Since then, I notice odours of every kind, whether it be foods that have gone slightly bad, or heavy perfumes, or personal body odours, and so on. One specific item I seem to smell is when women are having there monthlies and it is a huge turn off and makes me want to run. Even the ladies that are freshly cleaned exhibit this odour on top of their cleaning product they used which I also smell, not sure if its the hemoglobin but I smell it.
I am also very sensitive to dust. Quick story, was driving in the country on a gravel road in the summer and it was very dusty so I put on a dusk mask I had (like the ones you see the Japanese people wear on subways) and passed a female police officer going the opposite way, she turned around and pulled me over and asked why I was wearing this mask. I removed the mask and explained to her that the dust was bothering me because of my heightened sense of smell. She looked perplexed, then I told her that I even smell that she was having her period and she seemed very offended. The officer didn't know what to say and I just added that I would be happy to give any of the k-9 units a run for the money. She walked back to her cruiser, spun a donut and left. I was mad because now I have a hard time breathing again because of the dust she created while spinning the donut on the gravel.
Life isn't easy for us. Having these heightened senses causes us to look at the world in a different way. No offence intended but we humans are a smelly animal and coming from a farm life as a child, city life and people drive my senses crazy.
How do we deaden our sense of smell, is there a way we can turn off the 7 primary odour receptors in our nasal passages? Even when we go out to get some fresh air causes problems, our 7 receptors clear out from the previous odour only to be refilled by other offensive ones. I would love to quit smoking as it is a filthy expensive habit, yet gagging and hurling in public is more offensive.
Thanks to all of you that have posted comments, you are not alone.
Wow, this is amazing. I, too, am very sorry for everyone who has been suffering.
For as long as I can recall, I've had hypersensitivity to smells. I can smell silk, can detect types of minerals in dirt, am an accurate sommelier (wine taster), and can identify people by their body scent alone. Unfortunately like many of you, I also suffer from debilitating headaches.
Three years ago I was at my end. I went for an MRI, CT scan, nerve studies and had extensive bloodwork for my headaches. They were not classified as migraines, clusters or allergies so no medicines were prescribed. I still suffer today. Some days I vomit from the pain. Other days are much better, but the pain is always there.
It is only now that I read this thread that the posibility of the two is linked in my mind. It took a while, but man am I glad I read all of the posts.
I will visit an ENT to see what can be done. Thank you Darrylfl for your story.
Best to everyone and good luck
I to have hyperosmia. I can smell EVERYTHING. I remember when I was a kid, stinky perfumes would set me off but not much else. Now it seems anything can set me off, usually ending in a migraine. I currently work in an office with 4 people. One of them is Epileptic so she understands, my office mate is thankfully understanding, but the other 2 just don't get it. ! even swears she doesn't wear perfume at all, but I can still smell her 50 feet away with my back to her. I know when she is coming because I smell her perfume. I don't know what caused this, but I do have Arnold Chiari Malformation. I have not known seen smell sensitivity on the symptoms list, but know other Chiarians with the same condition. I have had the surgery to fix Chiari and it still didn't fix the smell thing so I really don't know if they are related or not.
I hope they find something to fix this, because 20 years is ENOUGH!