Not sure I have epilepsy

[brimfire]

Hi, guys,
I'll try to make this as short as possible. On August 31st at 2:00 am, I passed out without warning in the kitchen and broke my upper jaw. I was taken to the ER, hospitalized for three days (due to low blood pressure and a heart rate in the 40s) before I was released to take care of all the damage I did to my face. Over the last month, I've had about a gazillion doctors appointments. I had a loop recorder installed in my chest to monitor my heart rate, but finally was able to get in for an EEG. My neurologist said I had complex seizures, put me on Keppra, and gave me instructions to come back for a blood test in a week, and then go in for another EEG in a month. The thing is, I'm not even sure I have epilepsy. He never said "epilepsy" despite me asking for a diagnosis, but the check out paper he handed me said epilepsy, so I guess that's what he thinks I have? I received no information from him, so I'm left with the Internet for advice (scary, I know.

Aside from passing out without warning on August 31st, I've had occasional episodes where I've almost fainted. I faint easily with needles, so I'm very familiar with the feeling, but sometimes I'll wake up in the middle of the night with that feeling right before I faint. I'll ask my husband to get me a wet rag and will pull through it usually. I always know what's going on, and aside from August 31st, I've always sat or laid down to get through the feeling. After reading around on the net for a while, it doesn't seem like what I'm experiencing is anywhere close to what other people are experiencing. I mean, August 31st was definitely unusual for me, but all my other "episodes" are super spaced out, like maybe one almost-fainting spell once a year or so.

So I kind of don't know what to do. I think I definitely need a new neuro, someone who will actually talk to me. Or at least give me a pamphlet with some info or something! I just don't know if I need to be on Keppra or any other medication. Maybe August 31st was just a freak thing that will never ever happen again?

I still have the loop recorder in in case it's a heart related thing, but I'm almost certain my low blood pressure and heart rate is due to fainting or almost fainting. My neuro just can't tell me if the fainting thing is a seizure. If it isn't, then I have no idea why I'm on Keppra. Well, except the EEG. But when you flash freaking lights in someone's eyes, of course they're going to have an uncomfortable reaction.

Any guidance is appreciated.

 

[Nakamova]

Hi brimfire, welcome to CWE!

"Epilepsy" is just the catch-all term used if you've experienced more than one seizure -- any kind of seizure, not just the kind where you lose consciousness. So if you've actually had more than one complex partial seizure, then technically you could be diagnosed with epilepsy.

Of the course the real question is whether or not you've actually had any seizures at all, complex or otherwise. Partial seizures can take a lot of strange forms, so you might want to learn a bit more about them just in case you've had symptoms that you didn't know were seizure-related. See: http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures and http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

Did anyone witness the August 31 event? Do remember everything up to the point that you fainted? Were you acting completely normally up til then? (BTW, are you usually in the kitchen at 2:00 am, or had you been sleepwalking? If you were sleepwalking, that actually might suggest seizures).

What did the docs say about your low blood pressure? Is it chronic? Did they put you on medication for it? Did they test you for sodium deficiency? Did they test you for POTS (http://www.dysautonomiainternational.org/page.php?ID=30)? Do you have any other medical conditions that would contribute to the fainting feeling? Do you know of any specific triggers (fatigue, stress, etc.) or are the episodes seem to be completely random?

On the surface of it, your symptoms sound as if they might be more related to cardiovascular issues, but you should definitely consult with a good neurologist to evaluate your symptoms and decide whether the an epilepsy diagnosis is worth considering. Have you continued to feel faint since starting on the Keppra? Has it made any difference (positive or negative) at all?

 

[Fedup]

brimfire

You are worrying and jumping to a lot of conclusions (do not get angry I do not mean that in a bad way) what you need to do is find out for certain so you know, so you can tell yourself what is wrong and give yourself some peace of mind, but let me ask you this, are you trying to convince others along with yourself you do not have epilepsy or will you wait until you get all the answers. I know that you want answers and that is why you are attending doctors so wait until you find out exactly what the problem is. You making yourself all excited is not helping you.

Keppra like a lot of anti epileptic drugs is used to treat a lot of conditions apart from epilepsy.

None of this is easy on you and the worry is not helping you so please wait until you get the answers, it will be drawn out as you know. When it comes to epilepsy nothing is straight forward, there is no 1 test to say "epilepsy"

You have got some good help from Nakamova.

 

[Nakamova]

One more question -- did they have you do a tilt table test? Your symptoms resemble those of someone with vasovagal syncope, and the tilt test is one of the better ways to rule that in or out.

 

[brimfire]

Thanks for the responses and the links. Nope. I'm not normally in the kitchen at 2:00 am. My husband was in the bathroom with stomach issues, and I was getting him medicine. I got out of bed, walked into the kitchen, took the meds out of the cabinet, read the box to make sure they were the right ones, then my stomach felt a little weird. I sat the pills on the counter and decided to go to the other bathroom just in case. I remember taking a few steps that direction, then I woke up face first and immediately knew I'd passed out and that my upper front teeth were shoved into the back of my mouth (gross, I know). We don't know how long I was lying there since my husband was in the bathroom, but usually when I pass out, it's only for ten seconds or so. I passed out again while I was lying there, then again later on at the hospital when the nurse attempted to put a second IV in me. That's when my heart stopped for "5-6" seconds according to my cardiologist. Both the neuro and cardiologist think/thought it was heart related, but my loop recorded hasn't recorded any abnormalities at all, and the EEG definitely showed complex seizures (that's all the info I got out of my neuro, and only after calling back the next day and asking for more info).

I do occasionally have times when I feel like there's an earthquake going on. Literally. It looks like the floor and room are moving up and down. Logically, I know that's not the case. Sometimes I get pins and needles sensations in my hands, but nothing I consider a major problem. When I faint, I sometimes shake according to other people, but maybe that's just the result of my blood pressure dropping?

They did every blood test possible when I was hospitalized, so I'm pretty sure they tested me for deficiencies. I was a bit dehydrated at the time, but that's it.

I've been on Keppra 500 mg twice a day since Monday, and I'm hating it. I feel tired and very fog-brained. I felt much better before I took Keppra, and I just wish I knew if I definitely needed it, or if I only have seizures when docs flash lights at me. If I'm having them more than that, then yeah, it's worth trying out meds. I'm kind of terrified of driving (and am banned from driving for the next three months, which isn't easy in the suburbs when I have four year old twins), and the last thing I want to do is get behind the wheel when I might hurt someone.

Basically, I don't know if the medicine is worth the way I feel. It doesn't seem like I'm having seizures (outside of the EEG test).

 

[brimfire]

Oh, yes. They did the VNG tilt test. To my surprise, that came back completely normal.

 

[Nakamova]

Definitely worth seeking out a second opinion, if only to get a better explanation of the complex partial seizure diagnosis. Many folks with complex seizures never have them show up on an EEG (because the seizures are too transient, or originate too deep in the brain), so either you lucked out, or the EEG showed an anomaly. Either way, it wouldn't hurt to have another person take a look at your clinical symptoms and test results.

The pins and needles sensation and the visual distortions can be both be symptoms associated with partial seizures, so make a note of when those things happen, and make sure to let the neuro know.

If it turns out that you need to continue on meds, and you're still unhappy with the Keppra, don't despair! There are a lot of anti-seizure meds out there, including one that's likely to work better for you in terms of side effects.

 

[resaebiunne]

I'm just making a wild guess here, but based on the symptoms you are describing, it sounds like the seizures or seizure like activity you are experiencing is the result of a heart problem.

Seizures are not just the result of epilepsy, there can be other factors that can lead to seizures such as digestive problems or sleep apnea.

I would be very skeptical of the diagnosis on the part of your ER doctor. Epilepsy is a diagnosis of exclusion, meaning you are typically diagnosed with E after a full suite of tests including blood work, an EKG, CT and MRI scans, and so on, to rule out other biological affects such as tumors or stroke. Also, typically one isn't diagnosed with E if they've only had one seizure. It sounds like the ER doctor is diagnosing you based on the lack of negative results of the tests that they ran. I wouldn't worry about the diagnosis as it's not worth much and probably not important. It would be worth following up with a neurologist who can help you more accurately diagnose what might be going on, including any potential cardiac related issues. A good neurologist or primary care doctor should be able to help you with this.

 

[Zara-Newman]

I have postural tachycardia syndrome - and myoclonic epilepsy.
But if you have had a negative result from a tilt table test I am not sure if it could be that.
It may be worth asking for a walking blood pressure machine, which basically tests your pressure automatically every 5 mins. Which would at least rule that out?


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