How common are olfactory hallucinations--AKA phantosmia-- in PD?

[kaypeeoh]

I had an MRI last week. I saw the neuro yesterday for the results. He said the MRI showed no change for the past three years. Which means no active lesions in the brain. He said come back in a year.

Before the PD diagnosis I'd been diagnosed with MS. For two years I had monthly IV infusions of Tysabri, a monoclonal antibody for management of MS. I've had olfactory hallucinations for 20 years. These are smelling things that aren't real. For instance I'd walk into a room and smell fresh paint where no painting had been done.

I knew it was coming time for the monthly tysabri when I was beginning to have the hallucinations again. The day after the infusion the hallucinations were gone. Ultimately I no longer would get the hallucinations and asked the neuro if we could stop the tysabri infusions. He said fine but watch for more. I didn't have any more for several years.

Now they are back. Dr Google says they can be caused by schizophrenia, head trauma, or PD. WTF???? I was on medication for MS for two years when I actually had PD?

I stopped the sinemet over a month ago. I feel better without it. But seeing that PD can be a reason for hallucinations I started back on the pills this morning. Now I have a headache and upset stomach. I'd been told to take it with food but forgotten that and took the pills on an empty stomach.

The PD neuro is pushing the pills and my wife is pushing the pills. Last night the hallucinations were intense. I read a study that zinc can be used so I took 50mg last night.

So this morning no hallucinations. But in the past they tended to happen later in the day. So do I stay on sinemet? Weeks ago I'd asked about a DAT scan and was told it can be done here. I guess that's the next option.

[laglag]

I will let the thorough researchers on this site answer the bulk of this but one thing could be making you feel worse & mixing up your brain is it sounds like you are stopping medicines too fast. A lot of PD meds should be in titrated down.

[alexask]

Parkinson's does affect the sense of smell (though normally it is normally lost completely) and Mannitol helps many recover from this. Is this a recent thing though - this could be your only symptom of Covid? My friend who had Covid is constantly smelling peanuts.

[kaypeeoh in reply to alexask]

I'm not sick with COVID. The smell problem goes back 20+ years.

[alexask in reply to kaypeeoh]

Have you tried Mannitol?

[Trixiedee]

I’ve had them twice in the last week but it happens rarely. I was also misdiagnosed with MS but fortunately wasn’t offered any meds. The other night I smelled boiled onions and another time I smelled something else. I forget what. But I’ve had a sinus infection for a while so that could contribute.

[park_bear]

Sinemet and other levodopa medications are strictly for symptom relief. Only you can know whether they are helping or not. If not, just say no. If someone won't take no for an answer, say "What part of strictly for symptom relief do you not understand?"

[kaypeeoh]

Thanks for the replies.

[Sarahlil in reply to kaypeeoh]

I was diagnosed 12 years ago and I often smell smoke or burning, particularly at night. This can be quite wearing as, although I know it is most likely a hallucination, I always worry that ‘this time” it might not be so I have to get up and check. Of course I have smoke alarms but I still have to be sure. My neurologist (whom I haven’t seen for over a year now due to Covid) is never very interested.

[rebtar]

Smoke also. Occasionally.

[kaypeeoh in reply to rebtar]

For me the odor is never smoke. It's not a scent I can identify; Sorta chemical, sorta fruity, sorta electrical. But generally it's at night. I sense it in the back of my throat, not the nose or mouth.

[Sapeye2020]

IR C/L can give you a good stinging head ache. that is what caused the creation of CR C/L so you do not get too high a dose. I was on a dose of IR 75/ 300 (1-25/100 and 1-50/200) and I had to complain for 6 months to get it changed , pain gone instantly after the first CR dose.

The Brits have a web site that will show you how your dose fluctuates day and night . Sorry Lost the URL when my old machine died. You need to be in "the just right zone" , not too hi or too low, as you may not have enough being produced by your body...

[kaypeeoh in reply to Sapeye2020]

I had stopped sinemet about a month ago. The phantosmia was so bad that I took two tabs of 25--100 at 6AM and got a miserable headache all day, not responding to tylenol or ibuprofen.

[maugonnet4213]

I often smell onion soup, charcoal, or other odors that are not really there. I never associated it with my PD. Must ask my neurologist!

[Astra7]

My post related to this has disappeared!

I sometimes smell burnt toast. Didn’t know it was a known PD symptom.

V interesting.

[1LittleWillow]

I developed phantosmia after a head injury in 2003. I had an MRI w/ contrast, but they didn't find anything abnormal. I didn't lose my sense of smell at all... it was just disordered. In addition to normal/real smells, I smelled menthol ALL the time, sometimes burnt chocolate, flowers, chemicals, rain, etc. I always had to check with my kids to find out if smells were real or just in my head.

In 2015-16, the phantom smells went away around the same time that I began to experience mild bradykinesia in my left hand (although I didn't know that's what it was). I was eventually diagnosed with PD in August of 2018. Around that time, I lost my sense of smell completely. It came back in May of 2020 after I began taking mannitol. I do still experience phantom smells, but it's rare and barely perceptible.