Okay-38 straight hours of olfactory aura can't REALLY be SPS!!!

[k2s4ever]

I posted this in another E forum as well, as I have also sought input here, and try to not overload communities, but I have received no replies there, so here I go, as it is very frustrating. I hate to repeat my story, but basically, I am at a frustration point of not knowing whether I have SPS, migraine, or both. My sole symptoms is an olfactory aura. (which also manifests with a taste issue as well-distorts taste). Smell and taste are burn quality and unpleasant. Onset of aura is usually rather abrupt, but sometimes is also triggered by fried foods in an enclosed area (such as something being cooked on a skillet near me). I often have nasal congestion associated with it, but not always. I am on Topamax right now and on a decrease of Keppra with a goal of Topamax monotherapy. Neurologist is now maybe thinking it's more migraine but had thought it was SPS initially. But the auras persist and now they even last more than 24 hours sometimes. A night's sleep will usually alleviate an episode but even that is not always the case which is new. I've had the aura for four years now. I've not had one free month in four years. I was fairly sure for a while that yes, I have SPS, but I just don't know. I do have left temporal lobe slowing, and sharp waves and spikes on a 72 hour EEG, but no E activity was shown on it, and that was even when I had the aura occur during it. I don't get crashing headaches but have had major intermittent ones in the past, but not the type you hear migraineurs get. I do have a vague headache when the burn smell of the aura is in my face all day-it drains me so I just attribute that to fatigue and stress. Does anyone have any feedback at all? I am rather frustrated.

 

[Nakamova]

I think in some ways it doesn't matter whether the aura is caused by migraine or by TLE -- since the main thing is to figure put how to treat it! If I had to vote, I'd vote for simple partials caused by a misfiring neurons in the areas that process olfactory data Simple partial just means where in the brain the aura originates (i.e. partial focus), and the fact that it is sensory, and that you don't lose consciousness.

I wonder if it's something that neurofeedback would help? Or since sleep will help, maybe focus on imporving your sleep through a sleep study? Maybe try using the Zeo? (http://whatiszeo3.myzeo.com/hp/3/whatiszeo.php) Just a thought. It would be great if there were a way to re-train those misbehaving neurons.

This article http://onlinelibrary.wiley.com/doi/10.1097/00005537-200305000-00019/abstract suggests that treatment with phenytoin (dilantin) or valproate might help.

 

[Nakamova]

One more thing -- have you had an MRI as well as EEG? Sometimes the MRI can be helpful.

 

[Endless]

I agree with the need for a complete neurological workup. Many things could cause the all-day sensory experiences you are having.

I have an altered sense of smell that can last days, but mine is due to another neurological condition altogether, not epilepsy. It's rough when it's been raining 24x7, and to me, rain smells like burned chlorine.

 

[k2s4ever]

Thank you both. I had another few days clear of the aura, and then today, I had some nasal congestion out of the blue in the afternoon, and poof, there goes the burn smell, no specific environmental trigger, like at 2:00 in the afternoon. This is how it goes for me. It's an abrupt onset so much of the time. And the nasal congestion thing I know I have read somewhere, not overt and all over the place riddled everywhere, but I know I have seen references to something about this pertaining to TLE. So it again starts to make me go CRAP, maybe it really is E. But if it is, then I already have three AEDs tried that haven't worked/aren't working! Depakote ER was one of them. It reduced the number of them but did not eliminate them, and then they started to creep back up. They haven't crept back up to the number I've had before, but I have not had an aura free month since the fall of 2007. I used to average 15/month, sometimes to a high of 29 or so, and sometimes as low as 2-3/month, but never 0. This month, I'm at 5 and the month isn't over.

Nakamova: I'll look up the Zeo. Thanks.

Endless: what is your other neurological condition? Funny-it was pouring rain earlier today too, but had stopped by the time the aura struck me today. Does your taste get affected? Mine does. Burnt chlorine-yes. That's another good descriptor of mine too. Burnt wires. Burnt popcorn. Burnt Ramen noodle seasoning packet stuff. It's just so unpleasant.

Thanks both!!!

Next Neuro visit is end of next month.

 

[Chel]

k2s4ever, before finding out what my primary trigger was, I had sps all day, every day for months. I don't find it at all unusual that yours go for so long. My primary trigger was something I drank several times every day (including before bed), so it was always in my system.

It could be as simple as finding out what is triggering your sps. Several times, my eyes subconsciously wandered to the tea box, then one day, I thought "I drink that tea every day; could that be it?" and it was.


Good luck!

 

[Endless]

Hey, K2,

My other neurological condition is called idiopathic intracranial hypertension. It's not likely that it's your problem, too, but you never know. It only affects 1 in 100,000 people. They diagnose it through a lumbar puncture, where the opening pressure for the cerebral spinal fluid is above 200. Basically my brain is being squeezed tight by cerebral spinal fluid, causing a bunch of different symptoms. Ouch.

My taste definitely is affected sometimes. My apetite is just gone sometimes because everything tastes weird. But that could also the the Diamox I'm on. It makes everything taste kind of like metal, like Topamax does. Most people with IIH have headaches, pulsile tinnitus, blurry vision (mine is around the edges plus grey areas in the corners)... Mine might be causing my seizures, plus a whole host of other stuff.

Please make sure you have a complete neurological workup. Pressure on your brain, no matter what the root cause, can cause your symptoms. Please also tell your neurologist, like NOW, that you are experiencing this and for how long.

Continuous partial seizures that last over a certain period of time are called "status." Some sources call partial status "epilepsia partialis continua," and some say that name only applies to motor partial status. Some use the term Status Epilepticus. In any case, they NEED TO BE STOPPED before they make permanent changes in your brain. The root cause also needs to be found. Not to scare you or anything, but they need to rule out MS, hypoglycemia or diabetes, drug or toxin exposure or allergy, encephalitis/meningitis, etc.

http://www.epilepsyfoundation.org/about/types/types/statusepilepticus.cfm

Please. Ask your doc.

 

[k2s4ever]

k2s4ever, before finding out what my primary trigger was, I had sps all day, every day for months. I don't find it at all unusual that yours go for so long. My primary trigger was something I drank several times every day (including before bed), so it was always in my system.

It could be as simple as finding out what is triggering your sps. Several times, my eyes subconsciously wandered to the tea box, then one day, I thought "I drink that tea every day; could that be it?" and it was.


Good luck!

Good question:
The one think I consume is coffee daily but only in the morning. Can't think of anything else off the bat that might do it, but good point to really put on the thinking cap and look at everything.

 

[k2s4ever]

Hey, K2,

My other neurological condition is called idiopathic intracranial hypertension. It's not likely that it's your problem, too, but you never know. It only affects 1 in 100,000 people. They diagnose it through a lumbar puncture, where the opening pressure for the cerebral spinal fluid is above 200. Basically my brain is being squeezed tight by cerebral spinal fluid, causing a bunch of different symptoms. Ouch.

My taste definitely is affected sometimes. My apetite is just gone sometimes because everything tastes weird. But that could also the the Diamox I'm on. It makes everything taste kind of like metal, like Topamax does. Most people with IIH have headaches, pulsile tinnitus, blurry vision (mine is around the edges plus grey areas in the corners)... Mine might be causing my seizures, plus a whole host of other stuff.

Please make sure you have a complete neurological workup. Pressure on your brain, no matter what the root cause, can cause your symptoms. Please also tell your neurologist, like NOW, that you are experiencing this and for how long.

Continuous partial seizures that last over a certain period of time are called "status." Some sources call partial status "epilepsia partialis continua," and some say that name only applies to motor partial status. Some use the term Status Epilepticus. In any case, they NEED TO BE STOPPED before they make permanent changes in your brain. The root cause also needs to be found. Not to scare you or anything, but they need to rule out MS, hypoglycemia or diabetes, drug or toxin exposure or allergy, encephalitis/meningitis, etc.

http://www.epilepsyfoundation.org/about/types/types/statusepilepticus.cfm

Please. Ask your doc.

Endless: Yeah. I know. If what I'm having are E auras, I wondered that very same thing-are they STATUS ones if they're lasting that long, or are they the post ictal effects of the original one? I've entertained this idea with my neurologist and he knows that when I have the aura that it lasts all day long. So in my case, even though a night's sleep usually will relieve the aura, I still end up with 12-15 straight hours of it a day though. Today I woke up and it's gone. I had an afternoon onset one yesterday, 2:00 pm or so, and it now makes it questionable if my usual night's sleep will get rid of the previous day's aura, as the later in the day the aura, usually not, but I woke up this morning okay. We'll see for how long though!
Well, so far so good today. And for the record, while not 100% match,I looked up idiopathic intracranial hypertension and it doesn't sound terribly far fetched either. I do have regular ear ringing which is just background noise, but when I think about it, I get a whoosh sound in my ears sometimes that I just attribute to cardiac issues that I also have. As well I have back problems, so I always just assume it's one of any of those things. I've felt awkward things so often I almost ignore things after a while. It's not like I'm a walking dead woman-I have health issues, yes, but still fairly "healthy" not like I'm about to just drop dead either if you know what I mean. I never miss work or anything. I think I will ask the Neuro about this idiopathic intracranial hypertension for the heck of it. Apparently Topamax is a medication used for it anyway too. And I guess interestingly from what I read, the main one they use is also used for seizure disorders. Makes you wonder if idiopathic intracranial hypertension does in fact cause seizures?? Has that been inferred in your case? You mentioned that. That's what makes me wonder, hmmm. For I DEFINITELY have screwed up back issues, lots of spinal things for sure. I would not be surprised if there was another thing going on. Hmmmm.