For several years, I have been smelling fragrances that aren't there, some pleasant, others not. For example, I spent one whole day with the smell of our friends' well-water in my brain. That smell made me happy, as I miss our friends (they lived in another state, and now live in another country). Sometimes I smell synthetic odors, like plastic. I don't always smell things that everyone else does (exhaust, perfumes, etc.). One of the neurologists I have seen said that it was a Parkinsonian… read more
Wow yes! It's something I hadn't seen anything I've read about PD. It doesn't happen often but I hallucinate smells that don't exist in the real world...for the most part they are wonderful. It can last an hour or so. I haven't lost my sense of taste or smell but this is something else. I even dreamed some amazing aromas once. It's been the best symptom of an otherwise miserable experience.
Before diagnosis and starting Carbidopa Levadopa meds, I would smell toast toasting in the middle of the night. Not since then, 4 years ago.
My first symptom of Parkinson’s was smells that weren’t there. Then my arm quit swinging when I walked and dr said I’d had a small stroke and nothing could be done. Take an aspirin. I found out by accident. Visited neurologist for back pain. He picked up PD right off. Mri showed no stroke. Meds help but I still have bad smells come and go. Cigarette smoke, diesel exhaust, and other smells no one else can smell. I have visual hallucinations but it doesn’t scare me. I know they are not real. I catch myself clenching my whole body. diazepam Helps.
Almost daily I have a phantom smell, of which I can only describe as burning wires - very unpleasant. It lasts maybe 20 Min. My neurologist seemed surprised when I told her about it. Usually a person with PD is more likely to lose their sense of smell, I was told. I had an MRI just to rule out anything that could bed the cause.
I've been diagnosed with PD for 9 years. Up until a year or so ago, my sense of smell had declined, especially for bad odors, such as heavy rotten egg type smells. Some people might probably think that this is a blessing, but it limits your olfactory abilities which is not a good thing. I read and study a lot and I've come upon several discoveries from my own research that have not come through my neurologist, although he's considered to be one of the best (top college professor and balance disorder specialist). In addition to the so-called gold standard (Sinemet) and Amantadine, I found out about Terazosin (repurposed drug), Mannitol Balance (a healthy sugar substitute) and CBD in larger doses than 5mg. I believe that these meds/supplements have been very beneficial.
My neurologist long ago told me I should give up on the notion of getting better, and that I should be satisfied with doing all I can (exercise, eating right, etc.) just to decline more slowly. Well, I saw him last week and he confided that he was amazed with my progress and that I'm actually doing better than I was several years ago. Of course, I knew that. And, amazingly, as my condition improves, I've noticed that I can smell bad odors (bathroom smells, dead animals...) again.
Parkinson's is quite a challenge and I hope we get a real cure soon - not just treatments. At the same time, I'm dealing with chronic back pain from Army days, old motorcycle injuries, and cardio-vascular issues (aortic aneurysm, dissection, artificial heart valve, stroke, etc.). But, on a good day, no one evens knows I have any health issues. I give the Good Lord credit for that.
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