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

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@jakedduck1

@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

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Replies to "@iceblue All the decades I’ve been on Epilepsy forums I’ve never heard of gabapentin causing the..."

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

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