Are these really partial seizures?

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Hello all,

Early January I was diagnosed with partial seizures in my left temporal lobe at age 24. There is no clear cause aside from perhaps a lack of oxygen when I was first born, which makes sense because I was kept at the hospital for a few extra days. Anyway, I have been working with different medications such as: keppra, lamictal, trileptal, and topamax. Topamax helped the most but completely changed my personality, while lamictal is an awesome mood stabilizers but does nothing for my spells.

Here's the deal, though. I was put under video monitoring in April, but they found no real clear seizure activity. My fall semester at school was extremely rough (I missed about half my classes) so my neurologist suggested another session. So here I am, laying in the hospital bed with wires glued onto my head. It's pretty fashionable I must say.

I had an episode here yesterday but no clear recorded seizure. To clarify, my symptoms are: light headedness, derealization, sometimes dizzy, nausea (kind of a new one for me). Afterwards it feels like my head is "catching up" and is almost always accompanied by a headache and excessive tiredness. I can also become extremely emotional.

The derealization is the biggest stresser for me during this. It sounds morbid but it's like if I died right there it wouldn't change a thing for me. I'm not suicidal lol but that's honestly the best way I can describe it. I hope someone knows what I am talking about when I say that.

Is there anything else this could be if it's not seizures since the EEG isnt recording a clear one?? I do have some abnormal activity but nothing huge. My MRI shows signs of migraine so I imagine some of it is that.

Sorry for the long post!! I just get myself scared easily.

edit: My last MRI was in January when I was diagnosed. Also, there is absolutely no family history that we know of. I should also add that I've been diagnosed with clinical depression for about 10 years now, and I've had PTSD for about two. The only thing is these symptoms I have happen randomly 90% of the time.
 
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Hi vanillalissa, welcome to CWE!

Sounds like you're in the dreaded diagnostic grey area -- symptoms that can be either psychological or be neurological in origin, with a wishy-washy EEG to boot.

Why It Could Be Epilepsy:

-- You can have epilepsy without it EVER showing up on an EEG. Many CWE members can confirm this.

-- You can have epilepsy without there being a clear primary or secondary cause.

-- You can have epilepsy that manifests as derealization, dizziness and nausea. (Temporal Lobe Epilepsy often has symptoms along those lines).

-- You can have epilepsy co-occurring with migraines as well as with psychological issues.

-- Your symptoms respond to anti-seizure meds

Why It Might Not Be Epilepsy:

-- Your symptoms could be solely migraine and/or psychological in origin.

-- Your symptoms could be due to Psychogenic Non-Epileptic Seizures (often triggered by PTSD).

-- Your symptoms respond to meds that are [also] used to treat migraines and/or psychological symptoms.

In the absence of clear diagnostic information, docs will often look at the clinical evidence (i.e. your symptoms), and prescribe a med to see if it helps. It sounds like meds have helped in your case, which is good. But meds can have side effects (as you've discovered) -- and some of the side effects can even be light-headedness, dizziness, derealization and nausea!

One way to try and untangle the mess is to keep a seizure/symptom diary. Make a note of every time you experience unusual symptoms. Keep track of what time of day they happen, how long they last, what happens before, during, and after. In addition, keep track of related physiological, physical and environmental factors -- what you've eaten and drunk, when you've taken meds, whether you're tired or stressed, what your hormones are doing, what your metabolism is like, etc. The diary can potentially help you isolate and avoid any triggers for your symptoms (whether they are epilepsy or not).

Best,
Nakamova
 
Thanks for your reply! The thing that makes my neurologist believe it's epilepsy is my abnormal EEG is in my left temporal lobe, which correlates to some of the symptoms I have. For the medications, I have no idea if keppra worked because they took me off it ASAP when they realized the severity of my depression. Trileptal worked but caused me to be really suicidal (not fun!), and like I said earlier topamax worked beautifully except for the whole personality change thing. Almost made my boyfriend break up with me... (and that is HUGE because he is like my #1 supporter/fan when it comes to health stuff lol)

I also know that caffeine can trigger it. Took a 5 hour energy today and had a spell like 30 min ago, complete with overdramatic crying to the nurse afterwards. I'd be sleeping if I didn't have a bunch of caffeine in me still. Poor diet can as well I think, and there's a 50% chance I will have an episode if I drink more than 2 glasses of alcohol the night before. Can't say if sleep itself affects it because I have never slept well, I wake up randomly at night every 2-3 hours no matter what I do, even when I was on strong sleep meds like ambien.

It did only really manifest itself a yearish after the event that triggered my PTSD, so that points to psychiatric. Although I've always had the derealization feeling with light headedness. It did only happen a couple times a month prior to this year though. I also sometimes have a hard time focusing with my eyes before/during/after, but sometimes I think it's in my mind and not part of the episode?? I don't know.

When I was in here for depression last month they did a genetic test that shows my metabolism of medication is moderate/average.

Again, sorry for the rambling style of typing. I'm just stressed :-(
 
Ramble away! That's what we're here for. And you're not really rambling, believe me...

The #1 seizure trigger is fatigue, so anything you can do to get better sleep would help. (For instance: progressive relaxation exercises, sleepytime CDs, melatonin...).

And yeah, caffeine and other stimulants are definitely problematic for some people with seizure disorders. In addition to messing with the brain generally, alcohol can also affect the absorption of meds. So if you can stay away from energy drinks and alcohol, you'll be doing yourself a favor. Some CWE members have found that adopting a gluten-free diet lessens their seizure symptoms, so you might want to consider that when examining your diet/nutrition. In my case, I know that nutrasweet and MSG are both baddies, so I try to avoid them.
 
Hi Vanillalissa :)

You've already gotten some great advice, I just wanted to add....

When you have an episode, get someone to put it on video if possible. Ask someone who has been with you when it happens to help you describe what you're like before, during, and after to track in your journal just in case there's anything you might not be aware of. Any extra details could help with diagnosis.

My son has more than one type of seizure, and I have only recently discovered that he may also be having simple partials that I wasn't even aware of because I didn't associate the very subtle symptoms.

Don't give up! Psychological problems are notoriously difficult to diagnose and treat, and lots of people with seizures can test normal on EEG. Whatever it may be, I hope you can find what you need soon.
 
Thanks you two! I was under 24/7 video monitoring so they were able to witness me when I had episodes.

That being said, I was discharged yesterday morning after the EEG came "clean." The spells I experienced did not record anything. Their conclusion was I don't have epilepsy after all. All this did was leave me in a state of confusion because one of the top neurologists at the Mayo Clinic plainly stated I had it after a look at my first EEG in January. Now I don't? My EEG is still abnormal in my left temporal lobe but I guess it's considered benign.

I'll be getting in touch with my epileptologist ASAP to get it cleared up but now I am back to ground zero with this. I may be getting referred to a headache specialist too due to my MRI showing clear signs of migraines.
 
Keep in mind that EEGs don't always show seizure activity, especially if it originates deep in the brain. Anyway, I hope you get things cleared up soon. Keep us posted.
 
Ah....okay, I misunderstood about what exactly they were seeing on EEG and whether they were able to catch what was happening to you. I'm no expert, but in my own digging for information I have read about similar issues (abnormal EEG but no epilepsy) in more than one place so you definitely aren't alone there. I can't claim to have any idea what in particular your conditions might be and of course a explanations should come from a doc, but if I were in your position I'd want to hear any possibilities....so here goes.

Abnormal EEG activity means either seizure activity or the presence of a mass. MRI is the most reliable way to detect any physiological or pathological abnormalities (injuries, tumors, etc) in the brain, which you've already had so that has already been ruled out. It IS possible to have epileptic EEG activity without any epileptic fits. Having actual epileptic seizures is what is necessary for the diagnosis of clinical epilepsy.

Those spikes on the EEG indicate the potential for seizures, so it sounds to me as if the disagreement here between docs is simply whether or not your episodes are actual, clinical seizures-and that is where the issue lies.

I know this has to be aggravating, you may very well end up with a diagnosis of epilepsy in the future since obviously something is going on to have those EEG spikes. I've read cases where people were medicated for epileptic seizures even without the diagnosis, and others who some time later ended up having clinical seizures.....from what I understand, the protocol would be to continue a regular schedule of EEG and MRI.

At any rate, I'm glad you have doctors that are willing to listen and continue testing out other areas and searching for an answer. Please let us know what the continued progress is.
 
My Consultant gave me a basic synopsis regarding E & the brain injury - If I lose consciousness it's a GM+ - if I don't it's a PS of one type or another - Don't know if this is relevant to you/helps
 
Hi Vanillalisa - I've always been taught never to treat a PS as purely simple given it's potential to quickly progress to something more serious - approach with caution & grill your Consultant!
Col
 
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