Rather than run a measured and ever so predictable step-by-step blog that details my demise one symptom at a time, I’ve decided instead that this thing is going to move forward out of sequence. At one point in time I had this rather cumbersome outline in my head, but I like coloring outside the lines (…and by the way, there’s a fascinating book by the same name “Coloring Outside the Lines” that sheds wonderful insight into how children learn and explains how parents can raise their children to think smarter).
So last night, after a long day at the office, my wife comes home. Neither of these events is particularly unusual.
She takes off her clothes…
She changes her clothes (into something more comfortable) and saddles up beside me.
She leans into me and gives me a kiss.
Besides a hint of peanut butter, her breath smells unremarkable.
Later, as she dozes beside me, my intestines start growling and gurgling. I briefly sit up and lean forward. Then moments later, I settle back in.
Now I have intestinal pain. My intestines hadn’t hurt this badly since late 2013. Clearly, I’d been on a good run.
My wife awakens thirty minutes later, having successfully completed her nap. She leans into me and offers another kiss. This time her breath reeks of sour chemicals.
As my intestinal cramping and pain increases, the strength of my wife’s “chemical breath” increases exponentially. The smell is most reminiscent of hair coloring product mixed with nail polish remover and perhaps a hint of vinegar. And now I can smell this smell several feet away, even while facing away from each other.
They call it Parosmia. At least, that’s what I call it. That is what I have.
According to Wikipedia, parosmia is an olfactory dysfunction that is characterized by the inability of the brain to properly identify an odor’s “natural” smell.
Doctor’s do not believe I have parosmia …and/or have never heard of it, and/or do not believe me when I explain the exact triggering mechanism. And these doctors include two reasonably intelligent primary physicians and two gastroenterologists. Admittedly, the neurologists at Mayo were at least familiar with the term and likeliest symptoms.
Fortunately, according to the CAT scan I do not seem to have a brain tumor, nor do I seem to be having intermittent brain seizures. And the ENT suggests no apparent issues with my olfactory sensory apparatus. Please note that these seem to be the primary causes for parosmia.
So where does that leave me?
Better yet, the question at large should be… why does my being intestinally ill trigger my brain to incorrectly interpret translate the smell sensation emanating from people’s mouths?
Well, there’s this (what I think is a massive clue):
How it all Works (copied from – http://www.altmedangel.com/braingutconnection.htm )
- The gut’s brain, known as the enteric nervous system (ENS), is located in sheaths of tissue lining the esophagus, stomach, small intestine and colon. Considered a single entity, it is packed with neurons, neurotransmitters and proteins that zap messages between neurons or support cells like those found in the brain. It contains a complex circuitry that enables it to act independently, learn, remember and, as the saying goes, produce gut feelings.
- In his book The Second Brain, HarperCollins 1998, Dr. Michael Gershon, a professor of anatomy and cell biology at Columbia-Presbyterian Medical Center in New York City, dubs the entire gastrointestinal system the body’s second nervous system. “The brain is not the only place in the body that’s full of neurotransmitters,” says Dr. Gershon. “A hundred million neurotransmitters line the length of the gut, approximately the same number that is found in the brain…” If we add the nerve cells of the esophagus, stomach and large intestine, there are more nerve cells in the gut than there are in the entire remainder of the peripheral nervous system. Nearly every chemical that controls the brain in the head has been identified in the gut, including hormones and neurotransmitters.
What this tells me is that my intestines (the neurotransmitters in my intestines) are communicating directly with my brain, right? Every time I am digestively ill, my sense of smell is altered.
So what are the nerve endings in my intestines trying to tell me?
At first, back in the first instances of the parosmia portion of my illness (*January 2011), my wife’s breath smelled like Campbell’s Vegetable Soup. So I wondered if the smell hallucinations could be associated with a vitamin deficiency. Maybe the hallucination was trying to tell me something. I mean, why not? I’d been neglecting vegetables in my diet as the fiber seemed to make my digestive symptoms worse.
So my gastroenterologist drew blood. No wait, the phlebotomist did it. Anyway, despite living in and amongst the Arizona sun it turns out my vitamin D was low, and I was prescribed 50,000 IU’s f the best vitamin D money could buy… or rather, that insurance would pay for. Otherwise, all of my vitamins checked out (although my vitamin B12 was only  …more on that later).
And that was the end of that. Except, it wasn’t…
The digestive illness continued on and on, and so did the parosmia.
As my internal organs were all diagnosed as properly functioning, my GI doctor suggested I was ill due to stress. Stress wasn’t the cause, it was the effect of me being ill every single day of the week.
Even so, I took the suggestion to seek out a counselor. And I saw her several times. And she suggested there was nothing wrong with me (mentally, at least). So, despite nothing being wrong with me, she suggested I speak to a psychiatrist. My counselor figured I might be having smell hallucinations, similar to when a person with schizophrenia hallucinates by way of hearing voices that aren’t there.
The psychiatrist decided I was in line for two prescription drugs. One was Seroquel and the other was Lexipro. I asked the doctor why I needed two different drugs, especially considering there was nothing wrong with me. And, just as my counselor suggested, he explained I had too many thoughts in my head. Well, perhaps I do, or maybe I did, but I kind of liked it that way.
As I was still taking Nortriptyline (GI prescribed for intestinal pain), I thought it unwise to start the new meds straight off (despite the psychiatrists protestations). So after properly weaning off of the Nortriptyline, I started in on the 50mgs of Seroquel.
All at once the parosmia went away. I also felt the need to sleep 14-hours a day.
I took a few Lexipro. I didn’t like the way I felt and didn’t think I needed it. Heck, I didn’t really NEED the Seroquel, but it did stop the parosmia instantly.
Back to the Future
So now it’s late June of 2015 and I’m getting desperate. I’ve only had a few fleeting instances of parosmia in the past calendar year. But I’ve started to wean off of the Seroquel (not knowing the cause of my bodily weakness and fatigue, I thought I might as well get off of this medication). So I went from 25mgs at bedtime, to 12.5mgs. And within three days, my wife’s breath began intermittently taking on that odd chemical smell.
And in the past two weeks, I’ve begun having frequent intestinal disturbances again (not severe, mind you), and subsequently, the frequency of parosmia has increased.
Could this decrease in Seroquel be a factor in my renewed intestinal illness? Or, is a diet/supplement/vitamin change may be responsible for that which ails my intestinal tract?
In early July I began taking 500mcgs of sublingual B12 (methyl-cobalamin). A week later, I added Metagenics UltraClear Renew (approximately 10g every other day). And last week I began taking 1000 IU of vitamin D.
Besides these, I take a pro-biotic called VSL #3, twice a day and 90grams of Metagenics GI Sustain (for easily digestible protein and vitamins).
For now, and as I’m still rather ill this morning, I’ll remove the UltraClear Renew from the equation. Nothing else in my diet has changed, besides having added ground beef (approximately 3ozs every other day) to my diet mid-July.
Alright then… this was more than I intended to write. I tried to cover the basics regarding my parosmia. I have many more observations to offer, including information related to zinc absorption/loss, thoughts on research performed by Dr. Donald Leopold, and reverse engineering (Fish Malodor Syndrome).
Please let me know if you have any questions or observations.
*reading through older documentation I was able to determine that my first “smell hallucination” instance may have been late August of 2010… after a bout of severe diarrhea.