Smelling Cigarette Smoke (Phantosmia): What could it mean?

@iceblue according to this NCBI article it could be a side effect of gabapentin.

Olfactory Hallucinations without Clinical Motor Activity: A Comparison of Unirhinal with Birhinal Phantosmia
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4061890/

What to know about phantom smells (phantosmia)
-- https://www.medicalnewstoday.com/articles/322698.php

Have you talked with your doctor about the phantom smells?

@iceblue
Although I agree with @johnbishop you should contact your physician as these phantom smells may potentially be serious. I always look at symptoms from an Epilepsy point of view since that is my mimesis. Temporal Lobe Epilepsy is a possibility although slim in my opinion. In TLE Epilepsy odd odors usually last 30 seconds to a couple minutes. It doesn’t sound like Focal Non-Convulsive Status Epilepticus in this layman’s opinion. But whatever it is has the potential of being serious. Please contact your Physician.
Jake

Thank you @jakedduck1 - I have been doing some research, so while I strongly suspect it's the Gabapentin I do realize this could be serious. My web searches have been exhausting as they basically all say the same thing - but the potential of epilepsy is one that I took off the list thinking the Gabapentin would have reduced that symptom. Is that a wrong assumption? And apparently some types of migraines have this as a symptom - who knew?!?

I try not to get TOO freaked out by the info Dr. Google makes available to me, but will definitely bring this to my doctor's attention when I see him on January 17th. Even if it didn't have the potential to be serious - it is CRAZY-MAKING! In the meantime I have decided to keep a jar of Tiger Balm nearby so I can sniff it at will, and have started to decrease the amount of Gabapentin I'm taking (last night I reduced from 500 mg to 400 mg) to see if that makes a difference. God knows the increase in Gabapentin has done nothing to reduce my pain, so that really sucks too 🙁

Many thanks for the additional links John. I already have an appointment scheduled for Jan 17th to discuss my cholesterol, but I will add this to the list of things to discuss. In the meanwhile I am hoping a reduction in the Gabapentin will eliminate this bizarre experience.

@iceblue
All the decades I’ve been on Epilepsy forums I’ve never heard of gabapentin causing the nonexistent odor side effect. I did read this sometimes this can spontaneously goes away after 5 years. However I find the 5 year period questionable. I used to take gabapentin and was on the maximum dose of 3,600 mg and never experienced any side effects at all. I discontinued it because it didn’t help my neuropathy or my seizures. Of course side effects are different for everyone as we all know. Where did you read that gabapentin caused this side effect? I’d like to read it.
As far as Epilepsy is concerned I wouldn’t write it off based solely because your on Gabapentin. I took 5 Anticonvulsants (30 pills a day) and still had daily seizures. From what I know and from what I’ve heard from thousands of people who have epilepsy and specifically temporal lobe epilepsy I have never heard of a strange odor as an Aura or as a Focal Aware Seizure lasting more than a few minutes at most. If you had an EEG I would be very curious of the results. Have you noticed any Myoclonic movements? Is this smell absolutely constant every second your awake? Do you have a dog? If so is s/he acting unusual in any way? Seizure dogs are able to smell seizure odor molecules in the parts per trillion. Have you done anything out of the ordinary since this started? Anything at all even if you believe it to insignificant.
Jake

Geesh - I had a reply all ready to go and Poof! It disappeared! OK - I'll try again 🙂

I have not read anywhere that Gabapentin (specifically) caused one to experience this, but I did read that some medications can cause it. I began to increase my dosage about a month ago, which kind of coincides with the appearance of the odor - so it seems reasonable to try to rule out the meds as a first step.

Initially I only smelled cigarette smoke once or twice a day and I thought it was my brain finding a new way to signal a craving. (I quit smoking in April.) But over the past few weeks the frequency has really ramped up. It's hard to guess, but I would say I now smell cigarettes between 50 and 100 times a day. Sometimes it's only during one inhale - sometimes it lasts longer - constant through many inhales. I've never really tried to time it.

I noticed some very small unusual movements when I first started taking the Gabapentin - like a tugging at the muscles in my upper arms/shoulders. It's nothing anyone else could have seen as it was ever so slight, but I was aware of it. I still experience them a bit but definitely less than in the beginning. However, since I'm taking meds that act on my brain, it didn't strike me as unusual. Other than that, I haven't noticed anything terribly unusual - although I will watch.

As for doing anything different - no. The pain in my feet came back with a vengeance when my brother died (Nov 15th), and despite increasing the Gabapentin I haven't been able to get that pain back under control. Other than that, it's been Christmas, which has been very quiet and peaceful for us this year, so it's all been good.

@iceblue
Do you live alone or is there someone there to ask if you’ve weirded out in some unusual way?
For instance,
sweating when you normally wouldn’t
any change in mood
automatisms (repetitive movements), like picking at clothes or a button, skin, lip smacking
muscle contractions especially on one side only
staring off into space, eyes open wide, not blinking, dilated pupils, any vision changes audio or visual hallucinations like colored or flashing lights, seeing spider that isn’t there etc
Increased heart rate
abdominal pain
unusual head movement
numbness and tingling are symptoms too but with Neuropathy probably hard to tell,
feeling that something is crawling on your skin
feeling sick
If you have any of the above caused by any type of seizure activity you may or may not be aware of it.
Sure your not smoking buddy, lol. check for butts!!
Best of luck,
Jake

I can ask my husband to keep an eye open for anything unusual, but man, that's a long bloody list! I would be surprised if there was anyone who didn't have some of those things going on at any given period of time....

LOL - No I am definitely not smoking! Although there are times I think I would like to have a cigarette, the benefits of not smoking definitely outweigh any cravings I have, so I am happily moving toward one year anniversary of being a non-smoker 🙂

Hi, @iceblue - since you seem to be describing phantom smells, or phantosmia, I wanted to point out this Mayo Clinic Q&A on this topic https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/expert-answers/phantosmia/faq-20058131

Also, I wanted to invite others from a variety of Connect discussions who've described smelling cigarette smells or other scents that weren't really there to join this discussion, such as @sierrawoods @secretwhitepop @parus @merpreb @catlyn @sepdvm to comment on this constant (but not actually there) cigarette smell to the point where it makes you feel nauseous.

Have you contacted the appointment office at your doctor to see if you might be seen earlier than Jan. 17 so you can get some answers on these smell sensations sooner? Or, might you connect with your doctor who prescribed the gabapentin via portal message or a nurse line to see if the medication increase or something else could be contributing?

Thank you Lisa 🙂 I have thought about seeing my doctor sooner, but honestly - I'm trying to figure out if I'm over-reacting to this. January 17th didn't seem like so long away when all I needed to talk about was cholesterol, but it does seem like a really long way away now that I'm experiencing this.

I woke up at some point in the middle of the night last night smelling another strong odor. I think it was burning wires. I'm not exactly sure what it was but I know for sure it was a familiar smell. Thankfully it lasted only moments and despite my alarm at being awaken by it, I was able to fall back asleep quite quickly.

This morning I tried a nasal rinse (although I don't feel congested) hoping it would make a difference. Nope. The smell came back within minutes. I had my husband pick up a Vicks inhaler yesterday to give me intermittent relief.

I would be shocked if it's epilepsy because it is almost constant. Not TOTALLY constant, as I woke up this morning and was able to lay in bed for several minutes feeling totally blissful to not be smelling anything. Sadly - it started not long after I got out of bed.