differentiation of olfactory aura as migraine or SPS

[k2s4ever]

I have been under treatment for SPS-olfactory aura (and taste gets distorted too). This is my only symptom. I get a sudden onset of a burn smell which then PERSISTS all day. The smell does NOT go away once it turns on. Only when I wake up the next day is it gone, until it switches back on abruptly, except on my lucky "off" days. January was a bad month for me and was my 3 month checkup with my neurologist. I reported that since the increase in the aura, I was noting a vague headache (no nausea at all, not disabling)but something that hasn't been an issue for me in 5 years, since I had been taking a prescription NSAID for back pain. I never got the "normal" headache we all get from time to time ever since taking the NSAID daily, that is until a few weeks ago with day after day weeks in a row of the daily aura. I have had in the past about once a year, a killer headache that would have nausea, but never addressed it formally, assuming it's just an escalated version of headache we all get. Pop Ibuprofen, take a nap, headache gone, just a tad tired, but fine from there. But again-no real headaches in FIVE years! Anyway-I did then realize that I get some of those scintillation-sparkler things in my visual field from time to time, always have since childhood-so thought, what the heck, may as well mention this too. At times too, the olfactory aura seems to be triggered by burn smells (cigarette smoke, food being fried-but most of the time, totally random with NO odor trigger, just turns on abruptly no matter where I am-at work, even at my neuro's office, in my car, at home, etc. )Neurologist is now considering might I have migraine aura?? Since Keppra is doing nothing for me and because sometimes there can seem to be a possible smell trigger, hmmm. So I'm on Depakote ER as it addresses both E and migraines, and he decreased the Keppra for eventual discontinuation. I see him in 3 weeks again. His speculation is that if I do indeed have SPS and the smell persists like that all day, it could lead to kindling and secondary generalized by now, and since it has not progressed, hmmm, could this really be migraine aura?? I do have an abnormal EEG showing sharp waves and left temporal lobe slowing/dysrhythmia which he also thought could be congruent with SPS, but now he is reconsidering with the new information from me about the other issue, but at same time, still saying it could still be SPS as he has considered from day one. But since I have NOT progressed past SPS despite the PERSISTENCE of the burn smell ALL THE LIVE LONG DAY NON-STOP, if those were continuous seizures, might I not have slipped into a much more serious seizure manifestation by this point.
It is annoying to just wonder could I have migraines and not E, or maybe do I have BOTH? I don't want EITHER, but migraine while it purely stinks is less scary than E! At this point, E is not off the table.So-thoughts anyone??

 

[Nakamova]

While the lack of kindling (progression) is great, it doesn't necessary rule out a simple partial seizure disorder. Not everyone's seizures progress, or progress at the same rate, or in the same way. For many years I experienced the migrainal scintillating lights on very rare occasions, less than once a year. And then --BOOM! -- a tonic-clonic, out of nowhere.

On the other hand, migraines and simple partials are very close relatives, and some people have both. Both are abnormal paroxysmal neural spasms, with sensory symptoms. Both can be triggered by allergies or lights or what-have-you. So in some ways, the most important thing is not the diagnosis, but the treatment. If your symptoms aren't changing or progressing that's a good sign no matter what the diagnosis. If you don't need to be on AEDs, then Hooray! That's great! But as long as you're still on an AED med, the real qualitative difference is that you don't have the fear or anxiety that the epilepsy diagnosis brings with it. And that's no small thing.

 

[k2s4ever]

Thanks Nakamova! You are always so helpful!!
So far too this month, after 29 aura days in January, February is better for me. I do have the Depakote ER added almost 3 weeks ago on 1/21. I went on to have the aura every day past that except for 1/27. Now in February, have had the aura on 2/1, 2/2, 2/6 and 2/7. So 4 day break, and at current time, a 3 day break (hoping today will remain clear too!!!). I have had breaks in the aura like this before, so it is SO hard to say whether this could be the Depakote changing things. Assuming that blood levels need a change to get going, I didn't expect a change for at least 2 weeks into the Depakote anyway, and now I am indeed having less, but still hard to know if that is just random luck or the Depakote ER. And I hear what you are saying, I may just be lucky that I have not progressed with the SPS. Can't just assume I am in the clear for not having E. Not off the table yet, and who knows if I just have BOTH?!
As for you, it sounds like you do have both. My concern of course is making sure to offset the possibility of seizures progressing, since I may very well have SPS. Neuro more or less has thought so, and still has not ruled out. I wonder how this ever can truly get differentiated, but good point that if medication stops symptoms, all the better! I wonder what the EEG of a migraineur looks like. I would like to see some information on that.

 

[Nakamova]

Actually, for me I think just have epilepsy, rather than epilepsy and migraine. Since the tonic-clonics started ten years ago, I've never had a migraine event again.

That's a good question about the the difference between migraine EEG and seizure EEG. Maybe you could ask your neuro? In the meantime, it's great that you're keeping track of the auras. I hope they taper off as the Depakote kicks in. That would be terrific.

 

[k2s4ever]

Yes-will definitely be asking my neuro about EEG stuff. I do speculate that temporal lobe slowing points more toward E than anything, but heck, I'm no physician! And like you said, SPS and migraines have a kinship of sorts! Definitely no question that my auras are a neurological issue, and there does seem that many with E also have migraines. I also still find it odd too just how often I have gotten the aura, 20 days per month on average (except the last two months which have been worse). Never had anything have such an ongoing presence like that!

 

[k2s4ever]

Thought I would make this remark. I'm now back to the usual business, 3 days in a row of the olfactory aura again after some hope it was getting better. Now today, as usual, I woke up and the aura was gone. That's typical. But I did notice I had the vague headache ABSENT of the aura. THEN an hour later, poof, there goes the burn smell, aura clicked on for day #3 in a row, which has been the rule and not the exception for me anyway. What is curious to me is that in migraine aura, wouldn't the aura portion be the precursor to the headache? Today for me, it was reversed. I had the vague headache deal without the aura, and then the aura came on. Hence, it starts me speculating more toward E, which of course has hardly been ruled out yet for me anyway. and TLE variety tends to be the more intractable type, right? My EEG does show temporal lobe issues. I will definitely be reporting this headache before aura to my neurologist, who I see again in about 2 1/2 weeks.

 

[Nakamova]

And don't forget, sometimes headaches are just headaches. Or they can be caused by meds. Or they are related to an allergy, or eyestrain, or fatigue.

 

[k2s4ever]

Isn't that the truth?!!! A headache can just be a headache! I've had typical tension type headaches in the past like anyone else. Never has been anything I felt was out of any type of norm. Just would have that once a year zinger type that was random. Now an olfactory aura for 3 years now-yes, out of the norm!