Epilepsy

[k2s4ver]

I am being evaluated for possible seizures. I had an ENT asessment and upon referral to a neurologist, the neurologist suspects my smell distortion may be seizure activity. I've done some quick info search and it would seem these would be Simple partial seizures. From what I understand, a simple partial seizure lasts like 90 seconds or so. Now, my smell distortion is like a light switch-it's sudden and noticeable at onset. I wake up in the morning with normal smell, and then within an hour, two hours, or so, it's like poof, there goes the smell (burnt obnoxious type odor that also ruins my taste). It just "turns on". It used to be just every couple of months, but now it is every day, and the smell is there all day. It's only gone when I wake up. My two questions for now are: 1. When the smell "turns on", is that when the seizure is occuring? 2. If that is so, then why does the smell persist if the seizure itself is over?
My EEG is next week, then follow up appt. with the neurologist a few weeks from now. I will ask him then, but in the meantime I'm educating myself.
Thank you for any information.

[jket]

I have the same smell sensation as you. I will ask my son or others around if they smell something burning and the answer is always 'no'. The smell comes on all of a sudden and lasts all day or for more than one day. It does seem to be a precurser to the 'episode' of seizure but it is hard to track. I am 66 yrs old and my problems started just last year. Have been taking Depakote for about three months which seems to help...but the smell thing is still there and comes and goes.

[k2s4ver]

Thank you for the reply. I see the neurologist for follow-up in 2 weeks. I had an EEG and asked to have the results faxed to me just so I didn't have to wait. Results were normal! But I know that a one hour EEG is just a snapshot anyway-it's either going to capture a seizure or not. And I read that sometimes there are spikes that hint at possible seizure activity too, but none of that was noted. However, the abrupt "on" of the bad smell had already occurred that morning. I sure would like to see what an EEG picks up at the exact time these smell episodes begin! If nothing is detected then, I could see this not being seizure activity, but of course, a normal result and continued, incessant symptoms of this smell do not preclude seizures as my issue. It's just frustrating knowing I'm in this uncertain period. Thanks for letting me know that you too have the burnt smell that persists. What kind of seizures do you have? Are yours considered TLE? Thanks.

[jket]

I believe I have what may be termed "Complex Partial Seizures". I don't have all of the symptoms that are associated with this type but "unpleasant oders" are definitley there. Pretty much I continue all day to experience the burnt smell. It is though I am getting used to it as almost natural. It has not affected my appetite. I am taking two 500mg pills of depakote daily and then another 250 at night. As I am writing this I have had several mini-seizures with only the 'electric jolt' effect being experienced. These are right on cue though since the onset of seizures seem to very consistantly occur 14-15 days after the last episodes. If I get more than just the electric jolts and get a small or major seizure I will get confused and loose some memory. I think that most of the loss comes back but I feel unless I get these completely under control I ultimately will lose memory permanently.
I hope you can get a handle on your issue but I have read that about 30-40% of all cases are never fully diagnosed or cause found.
jket

[meglaser]

"I hope u r aware that there are 24 hour eegs done in the hospital where u r monitored. Thereis an72 hour testing done at home as I just had the probes taken out of my head. if u really tink u have it try to fight to have the tests done. poblem is whe thy are sparatc seizues or dizzy spells it is rrally difficult to determine when to have this test. the 24 hour test they try to produce a seizure and the only thing that i did was my legs startedshakimg and twitching. Anyway good luck to u!

MEG

[jket]

Thanks Meg - I am sort of stabilized right now by using Depakote. I take 1250 mg daily and it seems to work almost but not quite 100%. The doc is still trying to get to the right dosage.
jket

[k2s4ver]

Been a while since I wrote back here.
I'm now on Keppra, and for sure, the neurologist believes I have SPS, though the "official" diagnosis seems to still be pending. He may eventually do an ambulatory EEG. I am seeing the occasional 1,2,sometimes even 3 or 4 days in a row where the olfactory aura stay away, and whether it's the medication making a difference, who knows. I still have the auras more days than not. The last run of them was every day for 8 days or so, but before that, it could be a daily occurrence for several weeks even. Still no rhyme or reason, and when the smell "turns on", it still persists all day, which I still am perplexed by, as in does this mean it's a constant firing?? I read a reference in my chart about whether it could be "kindling" partial seizures or generalized epilepsy. I have my next visit in about 4 weeks so I'll be staying tuned!

[jket]

I also did some research and looking through 40 some different variations of the disease I viewed mine to be ' Complex Partial Siezures'. They are very much alike i think and I have the smell distortion as well. The issues started about 1 and 1/2 years ago and they (the siezures) seem to be under control using Depakote. The Dr stated off with small dosage and then gradually built the daily amount up to where it seems to bee effective. The smell problem started off sometime after I began with this problem after several hours in the mornings and then started to occur all day. Either I am now getting used to the 'smell' or the issue is going away on it's own or the Depakote is helping but the disturbance is not so noticable now.