Simple Partial Seizures-general info about duration and auras

[k2s4ever]

Hello all. I have posted on other boards and gotten no responses. Here's hoping more activity on this board. I am in the evaluation stage at this point. I have had a persistent bad smell issue for 2 years that has increased from sporadic to daily, where I wake up in the morning fine, and then the bad smell turns on suddenly, like a light switch, within an hour or two usually, and remains throughout the day. It is a burnt, chemical type smell, unpleasant. ENT-sinus/nasal issues have been ruled out, no brain lesions, tumors etc, so I was referred to a neurologist who I saw last week. He has ordered an EEG which I will have next week. Neuro suspects I may be having seizures. Since I'm not scheduled to see him again for a few weeks, I was hoping I might get some information in the meantime. My questions for now are: 1. When the smell initially turns on, is that likely the start of the seizure? 2. Why does the smell persist all day for hours on end? In other words, if the initial trigger of the bad smell signals that I just had a seizure, then why would the smell still remain? 3. Could I perhaps be having more than one seizure a day then?
I don't lose consciousness at all-I just can keep doing whatever I'm doing.
So it will remain to be seen if I do get a confirmed diagnosis of seizure activity, and I know that if I do, medication would be likely, and I'm well aware of the various medications, but not all the nuances of the various types of seizures, and I never would have guessed this could be what my issue might be!!
Any input would be greatly appreciated. Thanks so much!!

 

[Kansas Educator]

I wish I could help you. I do have simple seizures but mine don't usually include smells. I know that some do, though. I feel certain others on this board will have some better information for you.

 

[swimmy]

Hi there~
I have uncontrolled simple partial seizures. Mine affect my speech and typically start with a brief feeling of anxiety, followed by the inability to speak. I remain conscious, can hear, type, drive, etc. They only affect my speech.
While each individual partial seizure lasts about 10 seconds, there are many times a month where they continually follow one another, for over an hour. When this happens it is exhausting--I'm left tired with a headache, almost postictal.
So to answer your question...yes, seizures can follow one another. My neurologist explained it as something of an aftershock...you have one, and then you get resulting "echo" seizures.
What I usually do is (with my doctor's permission) take part of my evening dose of medication early, and then the rest at the normal time.
I have been on every medication currently in use, and none have been able to stop these simple partials, however I remain on medication for my seizures that generalize. If yours are indeed seizures, I hope you find something that helps.
***
Anita

 

[brain]

:hello:

You will find a lot of your answers which
includes a Medical excerpts here at

Experience Aura / Auras? (POLL)

And you will also find all kinds of experiences
from many of our members here in CWE, and
not just the information pertaining there and
you are more than welcomed to vote there
as well too!

 

[k2s4ever]

Wow-thank you to all who replied already!
Swimmy-those multiple seizures must be exhausting! I hope you get good results from medication. I defintely have been much more tired than ever, and I get vague sort of headaches. It's hard to differentiate though what would be the stress of my daily life and other medical issues I have! But I'm definitely much more tired at night that I've ever been. Wow, though, do not be able to speak is disconcerting.
Sharon: cool! I will check out the links! It will be interesting to see what the deal is with me, and if it's seizure activity. It will be great if it's not, though then the search will continue for what is going on with me. I don't know though. I read an article by the DC Taste & Smell Clinic from 2007 where they reported on cyclic smell distortions and seizures. It was a dead on description of my entire issue, from how it is first more sporadic, then often becomes more frequent, and how there are no other symptoms such as the motor ones, etc which further adds to physicians not always adding it all up that it's a form of simple partial seizures. So I won't be surprised if this turns out to be the issue.
Thanks again, and of course, I am quite interested to hear more from folks!

 

[RobinN]

Hi K2s4ever - Welcome to CWE
I am glad that you are getting some help. Hate that too when a forum is not active.
My daughter only has tonic clonic seizures. She only occasionally has had an aura, but she loses her memory so she can't explain what it was like. Because she can't remember. People around her have offered some indication from time to time.

I do know that smell can be an aura. Also there is clear evidence from many who have posted that seizures morph and change over time. So keep that in mind when you are looking for answers to your situation.

I am finding that nutrition plays a huge role in neurological health. You might just be one of the lucky ones that can turn the switch back off by considering some of the current thinking on this subject.

Enjoy your stay.

 

[k2s4ever]

Been doing some reading, and learning some things. Enjoyed my breakfast today with no bad smell (which then ruins my taste). Hasn't triggered on yet, so my coffee wasn't burnt tasting! That's a typical daily issue-"will I get at least one normal tasting cup of coffee today?" Yesterday the smell triggered earlier in the morning. The time varies by a few hours each morning, and in the last two months, it's every day. I might catch a random day here & there where the bad smell didn't turn on for an entire day, but the next day it's back. Well, next step is the EEG, and then the neuro appt which isn't until mid March! I might see if they have something a little sooner!

 

[Kal87]

Hi All,

New here.

K2S4EVER- caffeine is known to trigger seizures.
If I have coffee/ green tea I will most certainly have some form of seizure.

I have been recently diagnosed- and with research I think I may e having simple partial seizures at least 4 or 5 times a day. This results in massive headaches.

Could someone please let me know if it is possible to experience these seizures so frequently? Also- what are you feeling after these?

Thanks all.

 

[LJ-Bain]

Kal 87: You can absolutely have multiple simple partial seizures.
You can cluster too and have multiple ones back to back.
You can also have non convulsive status epilepticus (which would totally show up on an EEG) which can last for days and even weeks I believe.
On bad days before medication I would have 30 partial seizures in a day, and on a cluster day over 100.
I was bedridden with exhaustion on these days and experienced memory loss.
With medication my partials are about 5 a day with breakthrough cluster days when I'm hormonally challenged.
k2s4ever: when I have my partials my sense of smell is really heightened afterwards for hours. If you have been having seizures your brain has by this time had a lot of practice doing it and is getting better at it! Which would suck. Seizures beget seizures. By the way, don't you wish it was another smell?

 

[jonw]

Hello, I was diagnosed with partial simple seizures about 3 months ago. Although my eeg was normal. My symptoms are strange sense of smell and numbness usually on one side of my face. Sometimes the smell will last all day and night. I recently had surgery on my right shoulder which has deprived me of sleep, only getting about 3 hours. This has caused the seizures to be way more active. In addition, I have experienced some nocturnal seizures lately that I had never had. I.E. Violent muscle spasms and twitching, waking up out of breath. I am currently taking 100mg topamax at night. I plan on telling my neuro about this at my next appt.

Oddly, I too will experience headaches from time to time. Funny because topamax is also used for migraine sufferers as well...

 

[Maidenminx]

Olfactory halucinations (the technical term for smelling things that aren't there. I'm not showing off I just love the word olfactory) have been bugging me for years. The snell for me is always food orientated and changes frequently. I also get intense de-ja vu and other weirdness that seem to be simple partials.

On the tiredness side of things, I thought for years I had chronic fatigue but couldn't get a dr to acknowledge that sleeping up to 18 hours a day for months at a time. Now I'm wondering if I was having frequent seizures.

 

[serendipity324]

Olfactory halucinations (the technical term for smelling things that aren't there. I'm not showing off I just love the word olfactory)

Maiden, you sound like my neurologist ..he loves that word and loves olfactory hallucinations..they fascinate him! he goes on and on about them when I see him. well they don't fascinate me. I dislike them and I still prefer the term "phantom smell" lol altough I am so glad to know what these phantom smells are finally..as I had them over the last year or more and all sinus troubles etc were ruled out..I just felt crazy! still do..I just tell my family to say "yea I smell that too" just once in a while.
so far the meds haven't made my partials go away, but they have lessened. and at least the meds keep them from progressing to generalized seizures.

 

[serendipity324]

when I have my partials my sense of smell is really heightened afterwards for hours.

LJ- I've been trying to pinpoint that connection for some of my partials too. it is weird that I read this post today.
last night..I was having some "moments".. repeating myself. not remembering conversations I had with people. phantom smells. when I got out of bed this morning after what I didn't think was too crazy of a restless night, I noticed that some smells were just really strong, off the chart..but they weren't the usual bothersome ones. the coffee smelled weird. the bowl of cereal was obnoxious. my meds even smelled funny..really? I thought it was strange. left me wondering. my whole day was out of whack today. the smells that usually bother me or are a trigger were so much worse. like the fence in my yard that my hubby painted saturday. i went out in the yard and in no time, I was sick, nauseated, messing up my words, confused, headache. I felt outsdide myself and was pretty much done in til late this afternoon. turns out that not so restless night's sleep was not how it really went according to my husband. he said it was a crazy night for me and I don't remember it at all. crazy.

 

[Krista2882]

You can also have non convulsive status epilepticus (which would totally show up on an EEG) which can last for days and even weeks I believe.

This is totally what happens to me. I didn't know there was a name for it until a few months ago when I read about it on here. But especially before I was on meds, my simple partials would last hours or days with hardly any breaks in between. This happened a couple times at my video EEG- where I'd have a 40 minute seizure. I pressed the button, the tech would come on the speaker and I'd tell him I was having a seizure. Then I'd carry on, talking to my friend, watching TV, whatever, and about 20 minutes, he'd come back on the speaker, and be like, "Are you still having a seizure?" and I said, yes (they weren't really visible to other people unless I was walking or doing something with my right arm. So when I just sit there I feel like my muscles are crawling, but other people don't notice). And then I think he came on a second time a few minutes later and asked again and I was still having the seizure. I think he was seeing it on the EEG constantly for all that time and was kind of in disbelief that I was seizing for that long.
Now that they're controlled with meds, I get breakthroughs once or twice a month, and they only last up to 45 minutes, max, usually. And I might get more than one in a day, but they're not usually back to back. I had one last week that only lasted about 20 minutes.

 

[k2s4ever]

k2s4ever: when I have my partials my sense of smell is really heightened afterwards for hours. If you have been having seizures your brain has by this time had a lot of practice doing it and is getting better at it! Which would suck. Seizures beget seizures. By the way, don't you wish it was another smell?

Wow--it's been a while since I've been here! I was looking up info on migraines just to have a friendly chat. At this point, my neuro has concluded I have migraines and not a seizure disorder. I do get visual auras that I never really thought about that are likely migraine. I remain though on AEDs. Currently Lamictal and Neurontin. A couple months ago the headaches were worsening.
AND LOL, YES! I wish the smell could be chocolate! I still have the aura, and it's frustrating because it's happening less, but today, a fried food smell triggered it. That is one, very specific trigger. Well, I share my home with a family, and can't expect them to not cook, so basically anytime a food item is fried on a skillet, poof. I never told them this does it-I just can't-they have a right to eat, and I just opt to not make anything on a skillet. It's not every day anyway that food is made in my house that way of course, so I just deal with it, and often the aura is random anyway. I had it last week with no known trigger, no headache that day, but a headache the next day, so the aura is partly signalling that a headache is on its way I think. They just aren't ever going to go away, these auras, although lately they are not as much-a couple months ago, the frequency has gone up again. Every so often I still wonder if it's SPS, but that's no longer the suspicion, and either way, AEDs remain my treatment anyway.

Oh--and speaking of non convulsive status epilepticus, I did used to wonder if that was going on with me. I had a 72 hr ambulatory EEG, and of course, the one incident of the aura didn't kick in until late in the EEG, and I pushed the button, but there was no corresponding change on the EEG. The EEG wasn't normal but did not show discerninble E activity either. Here's where I posted about the results. http://www.coping-with-epilepsy.com/forums/f23/left-mid-temporal-theta-slowing-eeg-results-terms-clarification-7541/
And FWIW, I still have no idea what "seizure files" means on an EEG, as I had 23 listed on mine, but it didn't seem to indicate seizure activity.

 

[k2s4ever]

Maiden, you sound like my neurologist ..he loves that word and loves olfactory hallucinations..they fascinate him! he goes on and on about them when I see him. well they don't fascinate me. I dislike them and I still prefer the term "phantom smell" lol altough I am so glad to know what these phantom smells are finally..as I had them over the last year or more and all sinus troubles etc were ruled out..I just felt crazy! still do..I just tell my family to say "yea I smell that too" just once in a while.
so far the meds haven't made my partials go away, but they have lessened. and at least the meds keep them from progressing to generalized seizures.

Yeah, LOL, my neuro uses that word too, and I make a point of saying "aura"! Anyway, lately though he is referring to the phantom smell thing too, but because the fried food smell is one very specific trigger, he does believe I have the hyperosmia deal too-just its own spin, because no other smell triggers the aura.

 

[Dstini]

Smelly Headaches

My seizures used to be timed around my cycle but its changed to being every day now and I've noticed big changes to smell and migraines and sensitivities. There is a woman in my aquafit class who smells like relish-y hamburgers and it makes me sick feeling. I have to go away from her. Lights, monitors, sunlight all glare at me and my headache/migraine flares up. It's always there, that pain in the back of my head, but it flares up badly sometimes. I'm finding I can't process decisions anymore. I can't easily order off a menu or I get a lot of confusion and a seizure happens. Or is the seizure happening and I notice I can't make a decision? I can't organize things anymore, get togethers with people or even the simple task of purchasing theatre tickets online...the choice of seats and who wants what and making the best choice for everyone is too much for me. I am quite debilitated at this point. I have been taken off work short term.

 

[Krista2882]

Dstini,
Are you on any meds right now?

 

[Dstini]

Yes, I've been on Tegretol since spring 2011 and at dosage 1200mg per day now split between morning and night. The seizures themselves aren't as 'strong' but they happen daily (sometimes many times per day) and auras are around most of the time.

 

[Krista2882]

Yes, I've been on Tegretol since spring 2011 and at dosage 1200mg per day now split between morning and night. The seizures themselves aren't as 'strong' but they happen daily (sometimes many times per day) and auras are around most of the time.

Hmm. I'd suggest asking your doctor about adding a new medication in addition to the Tegretol. I got up to 1200 mg/day of Tegretol also at one point and was still having a lot of simple partial seizures, so my doctor added Keppra.