Hello - I'm Natalie

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Natalie67

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Hi All, I'm Natalie. I've been diagnosed with temporal lobe epilepsy about two months ago, and am trying to wrap my head around the whole thing. I'm 49, and have never had seizures, except a few fever seizures as an infant. My mom has had tonic clonic E her entire adult life and has been on meds throughout. I actually went to the neurologist because of a benign tremor, and mentioned as an aside that I had a great sense of smell because I smelled things that no one else seemed to. (Sigh)

My MRI & bloodwork were fine. The 3 day EEG came back with periods of very low activity and periods of high activity in the temporal lobes, especially the left temporal lobe. It happened both when I was awake and sleeping. He recommended I start on Lamictal, which I was a bit hesitant about, since I hadn't actually had a seizure, but agreed to try. I lasted two weeks before I got the rash, but in that time, found this group, which convinced me to try another medicine, even though I still haven't had any seizures. I'm now on Trokendi XR.

I also talked to my neurologist about other symptoms I had that I had no idea were related - the deja vu, that dizzy "roller coaster" kind of feeling, etc.

I'm having a lot of issues absorbing this. Separately, I've dealt with depression/anxiety my whole life. I know the triggers, the meds, if I'm having a true anxiety attack or if I just drank too much coffee. But this diagnosis is making me question my senses. Am I really smelling what I think I am or is it in my head? Is this deja vu going to wind up being the one that pushes me into a "real" seizure? Obviously, my regular anxiety doesn't help.

My neurologist seems to think this is going to get worse as time goes on, but I'm not sure why. I'm a little stunned that this is starting for me at 49.

Any advice on dealing with temporal lobe symptoms? I'm at the stage where I'm looking sneakily around the office every time I smell something, trying to see if someone is the culprit...

Thanks,

Natalie
 
! ! ! ! Welcome to CWE ! ! ! !

Natalie,
You are saying that you have 'never' has a seizure. What do you consider a seizure? If you are thinking that a seizure has to be something like many people think, you are wrong. A seizure can show it's 'ugly face' in MANY different ways(smelling, hearing, feeling, staring, tingling etc.). There are so many different ways that a seizure may occur that there is no way that a definitive description can be given to what may happen to a person!
E can start at any age for any person for an unlimited number of reasons! There is NO certain age! While it is true that more cases start in children and the elderly, anyone can develop E.
The levels that a seizure affects a person also varies greatly!
You have had depression and anxiety for years. This is common among people w/E. I am not saying that is why you were diagnosed!
There are two things that will become your best friends while you are waiting for a full explanation: TIME and PATIENCE. It will take time for your neurologist to find out the reasons for the E and time to find a plan of treatment that can control your E. It will take patience on your part to be able to wait for these findings to be reached by your neurologist and anyone else they may have to consult to get the best results.
E is not something that can be dealt with overnight! It takes time to reach the necessary results. Many times treating E can seem like it takes forever. This happens because in some cases the final result can only be reached through what is a 'test and result' pattern. This is because the neurologist can only try a medication and wait to see if it will be successful. If the medication isn't successful they move on to another possibility. As a result the person may feel like a 'lab rat' being used for tests. This is where the patience comes into play for the patient.
I was diagnosed w/E 50+ years ago. I have not let my questions and fears about E take over my life and as a result I feel I have led a positive life.
If you have any questions feel free to ask them! The members of CWE are here to help anyone with questions! :twocents:

acshuman
 
Last edited:
Hi Natalie,

Welcome to CWE! I've had temporal lobe epilepsy for 44 yrs. and I have absence and complex partial seizure along with simple partial seizure also called aura seizures.
When you start to smell odd odours that's a simple partial seizure and they can sometimes lead into absence or complex partial seizures.
Just like you I took lamictal and broke out with a rash and the same thing happened with tegretol and trileptal because the drugs are similar. Depression is part of having epilepsy often it happens from the meds a person takes.
I've found seeing an Epileptologist was much more help and these Drs. specialize in epilepsy and they have had me on the least amount of meds to control my seizures.
You need to get a calendar and start keeping track of any seizures you have write down what time the seizure happens and the type of seizure you had then show this to your Dr. and they can often see a pattern in the seizures. I usually have 1 week each month where I will have seizures. One thing I started this past summer that has done wonders is the CBD oil (medical marijuana) you don't get high from it and it helps calm the nerves. I am amazed how my seizures have reduced. I wish you the best of luck and May God Bless You!

Sue
 
Hi Natalie.
Welcome to CWE.

Every time you smell something that is not there, that is a temporal lobe seizure.
The Deja vu and roller coaster feeling in the stomach(?) is also a temporal lobe seizure.
So you are having seizures

Those 3 symptoms occur with every one of my temporal lobe seizures.

Depression and anxiety can also be symptoms of TLE, depression and anxiety are common as seizure symptoms and interictal symptoms.
 
Thanks all for the warm welcome! All of your posts made me realize that, to me, a "real" seizure was a tonic clonic like my mom's. That's what we grew up thinking a seizure was - loss of control, loss of conciousness. The range of epilepsy types is much larger than I realized.

I'm going back to my neurologist next Wednesday to see how I'm progressing with the Trokendi XR. He and my psychiatrist are also doing an evaluation of all my meds, since one of them (Welbutrin) isn't great for epilepsy, and the Trokendi can also affect mood disorders. Until then I'm reading as much as I can, and trying to come up with a list of questions for him.

Thanks again - you guys are awesome!
 
Smart Move

Natalie,
The evaluation that you have planned is a very good thing to do! All too often medications are given to people without considering whether there will be any problems caused by their combinations! An evaluation of how the medications will work together is something many more people should have done. :twocents:

acshuman
 
My seizures started at 13, and until I was diagnosed at 40 all I new of epilepsy was the tonic clonic seizure, boy was I surprised to learn that there are around 47 different types of epilepsy and epilepsy syndromes!
 
In case you are interested.

The smell seizures are called olfactory seizures, mine start with a smell and turns into a taste (gustatory seizure) with a post nasal drip type of sensation.

The roller coaster feeling in the stomach is called epigastric rising.

Deja vu and Jamais vu are common with TLE.

Have you ever felt taller or smaller than usual? That would be called Alice in wonderland syndrome, or micropsia/ macropsia.
 
Hey Natalie, welcome!

My neurologist seems to think this is going to get worse as time goes on, but I'm not sure why. I'm a little stunned that this is starting for me at 49.

Any advice on dealing with temporal lobe symptoms?
Click to expand...

Now that you are becoming familiar with some of the different forms that partial seizures can take, you might want to keep a seizure/symptom diary. If your seizures ARE progressing in any way -- kind, frequency, or duration -- then you'll be able to tell, and that will make the decision to medicate clearer. Everyone is different: Some people can go many years without their symptoms progressing; some have their seizures go into remission and then reappear many years later; some seizures never progress; some escalate quickly, or start out as tonic-clonics. Your neuro is right to be concerned -- untreated seizures can be risky -- and it will be helpful if you can get a sense of where your symptoms fall on the spectrum.

A diary can also help gauge how medication affects you in terms of efficacy and/or side effects. A diary can also potentially help you identify (and eliminate or avoid) your seizure triggers. Fatigue is the #1 seizure trigger, but there are many different kinds (physical, physiological, emotional and environmental) and they can be cumulative and change over time. You may find these links helpful when thinking about a seizure diary and looking for triggers:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/forums/f23/seizure-triggers-3240/
http://www.coping-with-epilepsy.com/forums/f22/epilepsy-triggers-516/
http://www.coping-with-epilepsy.com/forums/f20/tle-emotional-triggers-24683/
http://www.coping-with-epilepsy.com/forums/f23/weird-seizure-triggers-do-you-have-any-1153/
http://www.coping-with-epilepsy.com/forums/f23/seizure-triggers-17295/
http://www.coping-with-epilepsy.com/forums/f23/sugar-seizure-trigger-2040/

if you think your seizures may have escalated recently (at age 49), then it's possible that they may be partly triggered by hormonal spikes and dips (called catamenial epilepsy). You can read more about that here: https://en.wikipedia.org/wiki/Catamenial_epilepsy
 
Welcome

Hey Natalie and welcome. I am also new here and already had so many answers to my questions. Here u sometimes find more info that your doc can give u, especially in the beginning. What really is important - have patience. It took me quite a few years to find the right meds (and docs!). I think that everybody who has useful info will be glad to share it and sometimes it is important just to know there is a place where u are welcome and understood.
Take care, Alice
 
Natalie67 said:
Hi All, I'm Natalie. I've been diagnosed with temporal lobe epilepsy about two months ago, and am trying to wrap my head around the whole thing. I'm 49, and have never had seizures, except a few fever seizures as an infant. My mom has had tonic clonic E her entire adult life and has been on meds throughout. I actually went to the neurologist because of a benign tremor, and mentioned as an aside that I had a great sense of smell because I smelled things that no one else seemed to. (Sigh)

My MRI & bloodwork were fine. The 3 day EEG came back with periods of very low activity and periods of high activity in the temporal lobes, especially the left temporal lobe. It happened both when I was awake and sleeping. He recommended I start on Lamictal, which I was a bit hesitant about, since I hadn't actually had a seizure, but agreed to try. I lasted two weeks before I got the rash, but in that time, found this group, which convinced me to try another medicine, even though I still haven't had any seizures. I'm now on Trokendi XR.

I also talked to my neurologist about other symptoms I had that I had no idea were related - the deja vu, that dizzy "roller coaster" kind of feeling, etc.

I'm having a lot of issues absorbing this. Separately, I've dealt with depression/anxiety my whole life. I know the triggers, the meds, if I'm having a true anxiety attack or if I just drank too much coffee. But this diagnosis is making me question my senses. Am I really smelling what I think I am or is it in my head? Is this deja vu going to wind up being the one that pushes me into a "real" seizure? Obviously, my regular anxiety doesn't help.
Click to expand...

There isn't one definition what a seizures looks like or is. Nor is there one definition what epilepsy looks like or is supposed to be in results. Each person has different experiences to their seizures to one type of epilepsy. Triggers are different for everyone.

Your "special powers", as you identify them as, sound like auras. But, I'm not a neurologist or a doctor so I'm not going to theorize why you have the symptoms of a pre-seizure without a seizure following them, but I beg to differ.

I just pulled this from a source, by googling "aura without seizures", which explains your confusion about your symptoms word-for-word:

"An aura is a perceptual disturbance experienced by some with migraines or seizures before either the headache or seizure begins. It often manifests as the perception of a strange light, an unpleasant smell, or confusing thoughts or experiences. Some people experience aura without a subsequent migraine or seizure (see silent migraine). Auras vary by individual experience; some people experience smells, lights, or hallucinations. "

If this doesn't turn on a light bulb, I don't know what will.

Honestly, if you are seeing evidence on your MRI and EEG(s) of abnormal activity, you did the smart thing by proceeding with getting on anti-seizure medication. And if there is no activity, you could look into Anti-Epileptic Seizures, which are often misdiagnosed for actual epilepsy but the brain scans are normal. In my opinion, you should feel blessed that you noticed it early, rather than later. In my case, I don't get a 'warning', and it's just an attack. Your symptoms is your body and mind telling you that something isn't right and to pay attention.
 
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