Waiting for a diagnosis!

[Krista]

Hi everyone,
I've been on this website for a couple of months now and have found so much useful info and would like to say thanks! I haven't yet been diagnosed with epilepsy but am pretty sure that's what my "episodes" are. I'm 37 years old and sometime over 10 years ago I started getting these strange deja vu sensations. They would come and go over the next few years and I thought nothing of them because they weren't a bad feeling, just strange. Then I went over 6 years with nothing, in that time I had a child and forgot about the spells. When I was pregnant with my second child, in my 3rd trimester, I started getting the spells again, however one time I actually lost consciousness. My doctor ran tests(MRI, EEG) and found nothing and then the spells stopped. Two years went by and in March 2010 I started having them again but I've lost consciousness now about 8 time and have felt extremely sick after some of those episodes but not all. I have the aura at least 3 or 4 times a month though. My doctor referred me to a neurologist right away and he has ordered tests again. I just had an MRI and in 2 weeks I will have a sleep deprived EEG(which I'm not looking forward to!) My follow up appt. with the neurologist is in October. I have also recently been diagnosed with PVC's (premature ventricular contractions) where my heart beats irregularly but as far as I understand it has nothing to do with my spells.

Anyway, that's my history so far and I am so thankful for this site as it helps me gather all kinds of great info and eases my worries somewhat. My husband works out of town a lot and I am here with my 2 children(6 and 2 years old) so I worry about my spells, especially when I lose consciousness.Oh, and I am not allowed to drive which has been the hardest thing to accept, I understand it but it sucks!

Thanks for listening!

Krista

 

[Nakamova]

Hi Krista, welcome!

Both PVC and seizures can be triggered by electrolyte imbalances, especially low magnesium. For more info: http://www.curepvcs.com/stories/story3593.aspx
So perhaps there's a connection after all. Were you under any nutritional or metabolic stress when you first noticed the strange sensations?

 

[Krista]

Actually, in January of this year I started a ketogenic diet, it was doctor monitored and I had bloodwork regularly to check electrolytes and EKG's to check my heart and it was all fine at the time. My heart didn't start acting up until after the diet but maybe things are out of whack now, I'll mention it to my doctor the next time I go and have it checked. Thanks!

 

[foul ball]

I have the same type seizures. They start as a very strong deja vu aura and last maybe a minute or two. My mind seems to jump right into the sensation, like a switch was turned on, but than the feeling slowly fades away. They don't feel bad, but often leave me confused. I've probably had a thousand of these spells in my life. Medication has worked very well for me.

Welcome, you are among friends.

 

[Krista]

Ya, mine usually only last seconds then go away but sometimes they turn into the loss of consciousness. My son observed me once and said I just laid there(I was on the Couch) with my eyes wide open. Another time my friend was with me and my eyes were fluttering and another time with my hubby I just went completely limp. I'm glad to have the aura, it gives me time to sit on the couch or floor.

 

[Endless]

Hi, Krista,

It's not unusual for nothing to show up on EEG's, especially for frontal lobe epilepsy, or partial seizures located in the temporal lobe. The reasons are:
- The seizure is located too far inside the brain to be picked up by the eeg leads
- It's an ultra high or low frequency wave (but most centers use gold-plated leads now which pick these up)
- You aren't having a seizure at the time, and haven't had enough of them to cause permanent changes in the brain (which would show a wave pattern between seizures)

If it is a generalized seizure, it should show up on an EEG.

About 40% of people do not have a positive EEG. Your doctor can still use history and symptoms to reach a diagnosis of epilepsy.

 

[Junebug]

Ya, mine usually only last seconds then go away but sometimes they turn into the loss of consciousness. My son observed me once and said I just laid there(I was on the Couch) with my eyes wide open. Another time my friend was with me and my eyes were fluttering and another time with my hubby I just went completely limp. I'm glad to have the aura, it gives me time to sit on the couch or floor.

My sister used to have Epilepsy too when she was younger and was diagnosed with Absence seizures. She did the same thing that you have said what happens to you (the part I put in bold.)
She eventually grew out of it later after she graduated high school.

Even with all the sleep deprived EEG's I've had, only one has showed anything. The mobile 24 hr EEG's and even a 10 day EEG showed anything. It's really hard to 'find' the activity when the EEG only lasts a short time.

 

[Krista]

Thanks Endless and Junebug,
I am aware that these tests may very well turn up negative so I've been keeping a journal of my episodes and what people around me observe. My neurologist told me if he couldn't figure it out he will refer me to an epileptologist, so that's good news I guess. I'm pretty confident that it is seizures from my research but who knows. I don't want to have epilepsy(who does?) but if that's what it is I'd like to know so we can start treating it.