Hello. Looking for answers.

[LynnW]

Greetings!

I have found this great forum in my search to find out what is wrong with me. I would like to say hello, and ask a few questions. First, my story (sorry it’s so long):

I am 45 years old, married with 3 kids. About 3-4 years ago, I started having these “episodes”. They start with a weird feeling like I am having a familiar dream. It is always the same “dream”, but I can never remember it afterwards. I am aware of everything around me, but feel kind of disconnected from it. I believe that I can talk and respond to people, but as 95% of these episodes have happened when I am alone, I can’t verify that for sure. Next, I have a feeling wash over me that is somewhat like an adrenalin rush you might feel when you have a near miss in your car. All of this lasts probably less than a minute. Afterwards, I feel shaky, weak, and slightly nauseous for a few minutes. For several hours afterwards, I feel a little tired and spaced out.

I really didn’t think much about these episodes since they occurred infrequently (3-6 months apart), and I felt fine in every other respect. Last summer, however, I began to notice that the episodes were coming closer together (now every 2-3 weeks). Also, in December, I felt one of these episodes starting, and the next think I knew, I was waking up on the floor in a pool of my own urine. I could also hear a loud rushing noise upon waking.

Since then, I have blacked out during an episode one other time. My husband was with me that time, and he said that when I blacked out, I slumped forward, twitched a bit, and kicked my leg out once. It was not violent shaking, as in descriptions of tonic clonic seizures I have heard about, but more like the twitching you might experience while dreaming. He was holding me upright in my chair so I wouldn’t hit the floor. This all lasted maybe a minute. No loss of bladder control this time (thank goodness!)

I immediately called my doctor after the first blackout. He sent me to the hospital to get a metabolic workup, EEG, and CT scan. These all came back normal. He then suspected vaso-vagal syncope, and sent me to a cardiologist so I could have a tilt-table test. The cardiologist ordered a stress test, sonograms of my heart and carotid arteries, and the tilt-table test. All showed perfectly normal heart function. I now have an appointment with a neurologist next week

Now for the questions. First of all, I’m not even sure what to call these episodes. Could they be seizures? None of the descriptions I’ve read of seizures really sounds exactly like what I’ve been experiencing, but maybe some of you have some insight.

I also would like to know from people who have been there what to expect during my first visit to a neurologist, beyond listening to my symptoms and taking a medical history. He has asked me to bring my CT scan, so I presume he will look at my brain. Are there any questions that I should ask? At this point, I’m confused and my biggest worry is that I’ll never find out what is wrong with me.

Any help you can give me will be greatly appreciated.

Best Wishes,
Lynn

[Bee91]

Hi Lynn! Welcome to the site! I'm Brandi. I'm 16 and have been having seizures for a little over a year and a half now. It sounds a lot like you are having Temporal lobe seizures to me. We are pretty sure that is what type of of epilepsy I have also. It is the most common type of epilepsy. The auras seem to fit the description pretty well. And just because your EEG came back normal doesn't nessisarily mean you are not having epileptic seizures.

[Bernard]

Hi Lynn, welcome to the forum.

First of all, I’m not even sure what to call these episodes. Could they be seizures?

Yes, they could be. They sound like simple partial seizures (the ones that you are aware of) and complex partial seizures (the ones where you black out) and possibly a tonic clonic (when you awoke in your urine).

If you haven't already, have a look at the epilepsy 101 thread

[skillefer]

I agree with Bee. Welcome Lynn. Try reading the Epilepsy 101 posting. It gives you some good basic info about epilepsy. As for your neurologist appt., try being honest. Make a list of questions you want to ask him ahead of time, and take it with you. Try keeping track of the amount of sleep your getting every night, what you eat and drink everyday, as well as how many hours of sleep you're getting every night. If you can think back before your last two "episodes", was there anything unusual about those days? Were you especially tired? What time did they occur? Had you had anything to eat or drink?

Everyone has the potential to have a seizure under the right circumstances, and with the right triggers. For me, my triggers are strobe lights, stress, low blood sugar, and being near my period. So consider keeping track of those things. The more info you can give your doc, the better he/she can help you. Oh...and you might want to have someone go in to talk to the doc with you. I usually forget things..so my hubby comes into my doctor's office with me. He goes in and asks any questions that I may forget. And reminds me of anything the doc said that I needed to do.

[RobinN]

Welcome Lynn- Glad you joined us.
My daughters tonic clonic seizures are not violent.

[shomann]

Hi Lynn,
I have the same blackouts. I have had them for years along with other types of seizures. I just learned about a month ago that I have epilepsy. I have my first grand mal seizure after I had my second son. I went years with out saying any thing to anyone about the blackouts. Last month I had my second grand mal and all I was doing was sitting at home. I don't remember them at all and all I want to do is sleep for what feels like days after. I had a normal EEG, MRI and CT scan but after finally telling the neurologist about all of my episodes they said that I had epilepsy and have had it for years. So just be honest. Don't hold anything back about your episodes that is the only way to get to the bottom of it all. Please let us know how your doctors appointment goes and good luck with everything.

[mamaruns]

Hi Lynn. I have temporal lobe seizures and what you describe sounds a lot like what happens to me (on the "stronger" ones). The only difference is, I don't completely lose conscienceness; I'm aware of the twitching, which isn't nearly as strong as a tonic clonic seizure. My head turns to the right and I get very rigid. They are somewhat atypical, and it took me almost five years and three neuros to finally catch something on an EEG and diagnose me. So I basically spent almost five years having to deal with it on my own.

Hopefully your neurologist will give you at least a 24 hour EEG, if not a longer one, and be able to give you a correct diagnosis. Sometimes catching these types of seizures can be tricky. Good luck!

[LynnW]

Thanks everyone for your replies. Your support and advice have helped alot. I have been reading up on temporal lobe epilepsy, and it does seem to strike a chord. I guess I have a lot to learn. I just hope I get some answers next week. My family doctor has been very unhelpful. His typical response to most things is to prescribe steroids. If it's not something that can be fixed with prednisone, then he's kinda at a loss. I'm just glad he finally gave up and referred me to the nuero.

As for stress triggering seizures, I guess I will find out if that is true. My mother was just admitted to the hospital yesterday with chest pain. She had an emergency angioplasty and will probably need a bypass. I live about 1 1/2 hours away, and we are in the midst of the worst snowstorm since 1976. My stress level is definitely up there!

Thanks again everyone, and I'll check back here after my appointment with the neurologist!

[Birdbomb]

LynnW

Hope everything works out okay for your mom. It's awful when we feel helpless in situations like that!
Breathe deep and try not to stress.

[LynnW]

Thanks, Bird. I did see my mom yesterday, and she looked really good, and seemed optimistic. They moved her from ICU because she wasn't sick enough. She's scheduled for a quadruple bypass tomorrow, and everyone acts like it's no big deal. I can't help but be nervous for her, but I guess it's a fairly routine surgery anymore. My mom has a lot of (in my opinion undeserved) faith in the medical community. A little prayer for her to your deity of choice would be appreciated.

On another subject, I had a question about 24 hour EEGs. Is this something you have to check into the hospital overnight for, or do they hook you up and send you home with a recorder, like a 24 hour heart monitor?

[Bee91]

On another subject, I had a question about 24 hour EEGs. Is this something you have to check into the hospital overnight for, or do they hook you up and send you home with a recorder, like a 24 hour heart monitor?

It depends, really. If they are going to be video recording you, you check in to the hospital. Other times, there are ambulatory EEGs. You can go home without being recorded on video. Both have there pros and cons.

Did your doctors say anything about it being video taped or anything?

[LynnW]

Bee, I don't have anything scheduled yet. My first appt. with a neurologist is tomorrow. I'm just trying to gather information so I have some idea of what to expect.

[RobinN]

My daughter has had three EEGs lasting approx 30 min. each, two which were given in a neuros office, and one at UCLA.
She also had a video EEG at UCLA and we had to check her into a hospital for 24 hrs. It lasted much less, as they had their mind made up prior to the test, of the outcome.

I recommend if you do request a video EEG, make it a point to schedule it during a time that your seizures are more frequent.

Now what to expect from your first neurologist visit...
Ours went something like this... we explained the symptoms, and due to the fact that there were two seizures... in this doctors mind that meant the label Epilepsy and a prescription pad was pulled out. Then came the downward spiral of side effects.
No discussion of nutritional causes, or hormonal causes. Those do not effect the brain according to this "prominant" neurologist.

[brain]

Lynn!

Sorry for my delay in welcoming you to
CWE, but sorry you're having to undergo
all of this; However, I strongly would
advise that you speak with your neurologist
or epileptologist and have a video EEG done at least a
short term at the Hospital, which would
cover all the bases from A to Z and they
can do more tests there than having you
run all over the place for appointments.

At least, it would be a start!

[keyna]

Just wanted to say hello, and to say that so far the advice you've gotten here is right on the money.
If you do have epilepsy it can be very confusing, and there are so many different kinds that a good nuero is the first step.

[LynnW]

Now what to expect from your first neurologist visit...
Ours went something like this... we explained the symptoms, and due to the fact that there were two seizures... in this doctors mind that meant the label Epilepsy and a prescription pad was pulled out. Then came the downward spiral of side effects.
No discussion of nutritional causes, or hormonal causes. Those do not effect the brain according to this "prominant" neurologist.

Wow, Robin, that sucks. I'm a mom myself, so I understand your frustration. I hope you have a better doctor now.

What you describe is my biggest fear (besides never finding out what's wrong with me). I'm not necessarily looking for a pharmaceutical intervention, just some answers to my questions:

1) What's wrong with me?

2) Will it get worse?

3) Will it get better?

4) What next?

Anyway, I leave for my appointment in an hour or so. I'm really dreading it now.

It's been three weeks now since my last episode, and it's times like this that I feel really silly pursuing this. My personal approach to health care has alway been, "well, I'm not dead yet, so it must not be that bad." I know that there are LOTS of people a lot sicker (?) (more sick?) than me. Oh, well, I'm done venting. I'll try to check back in later after my appointment. Thanks everyone! You've all helped enormously.

[skillefer]

*chuckle* That's what we're here for. I hope you have a great doc's appt. And check back in and let us know how it went.