Feb 26 2010
Phantom Smells Anyone?
Question:
I have experienced the loss of the ability to smell for a number of years even though I was diagnosed with PD only three years ago BUT I often have phantom smells (wires burning, ammonia, permanent wave solution, smoke and other smells I can’t describe.) I wonder if I am alone in this or have other PD patients experienced this.
Thank you.
Sharon
Response:
How about it folks? Anyone else experiencing phantom smells like those Sharon describes above? Please write in a comment to let Sharon and the rest of us know your experience with phantom smells.
Robert Rodgers, Ph.D.
Parkinsons Recovery
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Hello Sharon -
You are not alone in this – very apt description, too, of a almost indescribible experience of an olfactory hallucination. For me it hasn’t been often, but over the past few years (post DX, PD) I’ve had episodes similar to what you describe – rapid succession of unpleasant, sharp and pungent smells.
Amazing what can start to happen once your neurons pack up their old kit bag and start jumping ship.
Hi Sharon,
I was diagnosed with Parkinson’s 4 months ago, but I had a long-standing issue with loss of smell and phantom smells similar to the phantom smells you are experiencing. I believe it is from years of breathing in toxins that have lodged in the sinus cavities (just my guess). I am a proponent of acupressure and found information that LI 4, a point on the large intestine meridian, was the answer for me. If you type in a Google search for LI 4 and sinus, you will find many articles and explanations of have to stimulate LI 4. There are cautions, like this is NOT for pregnant woman, so I would make certain not to do anything contrary to what your doctor is advising. I am only sharing what worked for me. In a matter of days, my sense of smell returned and I have not had any further phantom smells.
Howard
I wouldn’t jump to the conclusion that these are “phantoms” (olfactory hallucinations) unless you experience them in a scientifically sterile environment. They could be distortions of normal smells or even acute sensitivity to smell things that others cannot. Diminution of the sense of smell also involves the sense of taste which can lead to dietary concerns.
I had a poor sense of smell many years before PD and I also smell unexplained things from time to time. I also developed unexplained tinnitus (ringing in the ears). It only stands to reason that all the senses might be affected by something like PD. Dopaminergic drugs are also known to produce hallucinations, so other distortions of the senses might not be unusual. I find that I am increasingly sensitive to music and my sense of the passage of time to be affected (I receive and process sensory information more slowly). For example, it may take me longer to notice a smell or sound or to see something that others notice first.
Another interesting area of sensation is the proliferation and intensity of dreaming. PD’ers generally have an increase in the vividness and volume of dreams. This could be merely the effect of sleep disturbances. On the other hand, it could be important communications from the subconscious mind (see the works of Ann Faraday, the dream researcher).
I recently had phantom spells. My neurologist says it could be a precursor to seizures. I smelled sulfur mostly and nobody else did. I also had smelled cigarettes, fire and the last although faintly, maple syrup. I also, was not feeling well. Very tired, no energy over a 3 week period and then I had a very bad episode. I felt like I was going to pass out. I was in the bank when I got very hot, especially behind the neck. I took my scarf off, next my coat. I went outside it was 40 degrees, to my car, drank ice cold water to perk myself up, I place my head down between my knees. I had an appointment in one hour for a brain MRI. My husband had to come and get me to make the appointment. Since then I’ve also had an EEG, EKG, heart stress test, echo test, blood work for thyroid etc.. My cardiologist wanted me off caffeine, which wasn’t much to begin with, and wanted me to drink plenty of water, and put me on pravastatin because my cholestrol had been raising over the past 2 years, now 276. Thank you, menopause! I also, gain weight during this period about 10 lbs. over 5 weeks. I was very lethargic. So far nothing was found but a cyst in the gray matter in my brain, which could have been there since birth. I’ll have a follow MRI to confirm. Right now, I’m feeling good. No more spells until yesterday. Prior to me not feeling well, I had been taking vitamin supplement. Last week a visit to my GYN, I was told that I need to take calcium twice daily due to menopause and the bone density loss prospect. I had been taking calcium with magnesium before the phantom spells began. Now I think the sulfur smell is coming back, I am not sure it’s very faint. I’m going to stop taking the magnesium 400mg 2x daily, and just take the calcium and see if that makes a difference. Maybe it was an overdose or something. My body is trying to to tell me something. I’m now walking everyday, trying to strengthen my back muscle with weight training. I finally lost the 10 pounds, my next goal is to get off the statin, which could possibly hurt my liver. I don’t need anymore problems. I’m on a high fiber, plenty of water diet. I do have additional weight to loose, which will help with the cholesterol issue. Nice weather is upon us and it’s easier to keep active. I’m hoping the sulfur spell with stop again. If so, I will inform my neurologist. In 5 weeks I have another brain MRI.
I was diagnosed with Parkinsons last year, but I lost my sense of smell years ago. I have occasionally smelt cigarettes recently, though no one in the house smokes or has ever smoked. The smell seems to be in my nose, though it obviously isn’t.
When I was a child we had a radiogram, as big as a dishwasher. Those of you as old as me will remember that these instruments had a very distinctive smell, like no other. I suppose it was actually fine dust that gathered on the valves because of static electricity and then slowly burned off.
I recently took a CD out of its box and saw the distinctive design for His Master’s Voice. instantly smelled that smell again. I didn’t remember it, I smelled it.
At Susan,
I realize your post was almost 2 years ago, and I hope you are doing well!!! If I may ask, how are you feeling and did the MRIs reveal anything? My mom has been having very similar “episodes” to the ones you described (with a few other symptoms). These episodes are becoming more frequent and severe. She has also recently notice a phantom ammonia smell on several instances. She had extensived blood work, EKG, ECO, Ultrasound of Coradid Artery, and CT Scan. We are waiting on the results. Needless to say, I am VERY concerned!!