[cpmjohn]

Does anyone have my symptoms?
My Kaiser Permante Drs unable to give a firm diagnosis. About every month I wake up with no memory...blank. (No alcohol or drugs.) I have no advance notice that it's coming. I don't know the day, week, year, etc., nor what I did previously. All memories must be rebuilt and it takes a couple of hours. However, I know that some things are not coming back. Videos show I went to Hawaii on vacation but I have no useable memory. this has been going on for at least two years, but I believe longer.
Had a 48-hour Digitrace (portable) EEG. The results show an abnormal brain wave pattern that "must be" seizures (Drs have no other explanation).
What's got them stumped also is that I usually have an enhanced sense of smell that lasts through that day, but is gone the next morning at wakeup.
I'm on Dilantin but it seems to be giving me vertigo/fairly severe balance problems, especially going downstairs.
Please, does anyone else have these symptoms? And if so, has anyone accurately diagnosed it? Teated it?
Thanks,
cpmjohn
Petaluma, California

[Ellie]

Hello Cpmjohn!

I'd recommend you visit us over at the Epilepsy Forum. I'm going to copy this thread over there for ya'. Your symptoms are actually quite common (in our world). I have a few questions!

How long have you been having these episodes

How many times per month does this happen

Do you know if anything triggers it (stress, sleep deprivation, etc.)

Did they happen to tell you which area the seizure activity was (frontal, right/left temporal, parietal, occipital)

How long have you been on Dilantin and what dosage (mg per day)

Sorry for the questions, but it helps to give the best answers.

[cpmjohn]

Thanks, Ellie (and others...I'm lost again).
They occur with no prior warning or any triggers that I'm aware of.
I've been on Dilantin (300 mg before bed) since last Wednesday. I'm now supposed to go back in for a followup blood check...to see if my liver is still working.
I'm not sure of the brain lobe location(s), but will ask the the Dr.
I believe the blank memory wakeups have been happening for about 2 years, but looking though my records, and noticing what I don't remember doing or writing, it's been going on for much longer than that. Unless of course the seizures have been taking way bigger chunks (longer time periods) of memory than I'm aware of.
What's amazing to me is that there aren't thousands of others with the same symptoms. I'ts got the Drs. stumped; here maybe one of the true values of the Internet.

[Ellie]

I think in your case a VEEG would be ideal so they can watch to see if you're having Nocturnal Seizures and try to trigger seizures all under the supervision of a trained staff.

While it may be a burden, for the time being I'd suggest writing down what you did during the day and even before bed. Then before you go to sleep, write down the time you went to sleep and if you felt anything abnormal. Even if your big toe was numb, write it down.

When you wake up, write down how you feel as well. Basically, you should journal your days, keep the notebook where you can see it. Like if you have a nightstand or something nearby. Try to stay on a schedule, such as wake up and write down how you felt when you woke up. When finished, put the notebook on your pillow so you won't forget to update it before bed.

You will come to learn that with most AED's you will take a bit of time to adjust to them. I'm going to go out on a limb and assume they will have a 'lab rat' phase with you, we normally call it that because our doctors try out lots of seizure medication on us, like we're lab rats!

It has taken me from 2 weeks up to 3 months to adjust to new meds. I'd have mood swings, dizziness (vertigo like feelings), nausea, short term memory loss, and more. I've had my hair fall out, too. The medication side effects have sometimes made me question if I'd rather have a seizure over the side effects.

Keppra, I believe, is the one that's more friendly to your vital organs and doesn't have any other medications it doesn't mingle well with. For example, some AED's cannot be mxied with other medications, even simple meds like OTC cold medicine. The downside, is Keppra (also known as Kepprage) can cause the most unholy mood swings. I was very tired, and very, very moody when I took Keppra.

The medicine side effects seem to vary by person. What works well for me doesn't work at all for someone else. That's how we all end up as rats till they find out what works.

With your 'enhanced' sense of smell, are you positive you're sense of smell has increased or that you may be smelling something that isn't there. Julie is more familiar with these types of seizures, so she can probably go into better detail than I can. But if you're smelling, say, flowers and are nowhere near one - you should write that down, also.

Sorry for babbling, I've had a lot of coffee and hardly any sleep.

[Porkette]

Hi cphjohn,
I agree with Ellie and have to say these sound like nocturnal sz. If I may ask do you shake at all during this time or have any form of muscle spasms that you aren't able to control? This type of sz. happens right after you go to sleep or in the morning when you first wake up.
A veeg would be the best thing for the Dr. to see what the problem is. In regards to things that you smell if it's an odd smell then you are also having aura sz. and that's when a person smell wierd odors it usually happens right before a bigger seizure such as an absence or complex partial sz.
I've found seeing an Epileptologist at an Epilepsy Center the best thing I've ever done because the Epileptologist specializes in epilepsy and they are further ahead than a lot of neuros. Stay away from foods with nutra sweet in them like diet soda because it's been proven that nutra sweet (aspartame) can cause more electrical activity in the brain which can cause sz. Another thing that may be causing memory loss is the hippocampus (memory and learning area of the brain) maybe shrinking from having seizures. This is what happened to me after having sz. for over 30 yrs. I have RTL epilepsy and it caused the hippocampus on the right side to become hard and shrink. I had surgery a few yrs. ago to help reduce my sz. and my surgeon removed the hippocampus and 75% of the right temporal lobe. You might want to try taking vitamin B12 1000 mcg. a day it's done wonders reducing my sz. Here's wishing you well and May God Bless You!

Sue

[cpmjohn]

Thanks Ellie and Sue,
At this stage, I'm pretty well stuck with whatever Kaiser has in store...we pay enough monthly. I've had a CT Scan, spinal tap, 2 MRIs, an inside EEG and a mobile, 48-hour Digitrace EEG. If the meds don't stop them, my next step is to stay over night(s?) at a hospital in Redwood City (CA) for more intense study...maybe that's a VEEG?
Yes, I realize the having the enhanced smell after the memory loss bout is not a standard aura...sorry...chuckle. With it, as I walk through a market, I can smell the coffee isle from 10 isles away instead of nomally smelling it as I walk through it. You can imagine what its like going through the produce section.
Also, by brain latches on to some particular smell for the whole day...and it overrides all the other smells...like it got trapped in some smell sensors.
Hope this helps.

[Ellie]

Well, on the bright side you won't find a dog mess in there! *Giggles*

I've only had the smell things on a few occasions and heaven forbid it be a pleasant one. I went on a 3 hour 'where did you poo' hunt in my house, giving my dog 'the look' frequently.

A VEEG is basically an EEG but you stay in the hospital, sometimes only for a day and sometimes up to a week. They will keep you hooked up and on video the entire time, along with being hooked up to an EKG monitor and frequently having your blood pressure and temp. monitored as well.

They will normally try to trigger seizures, such as sleep deprive you (this one had me enraged I was so tired and they kept waking me up). They will possibly try to load you up on coffee, and even offer alcohol (they did for me, but I wouldn't as I don't drink). They will put you on an exercise bike along with various other things known to commonly trigger seizures.

I have a thread somewhere around here which I posted my VEEG experience. Not to scare anyone, but to make them aware of the 'down sides' that they don't tell you about. It's like getting a shot and they say 'it will feel like a pinch'. I'm here to say 'it will feel like you're getting a shot with a needle'.

With Kaiser, you can trick them up a bit. Trust me, I had them and I am in SoCal. I was going to the Kaiser building near Irvine and they did do one of the best EEG's I have ever had (in terms of being thorough, kind and not scraping my skin off). The Neurologist, however, was a moron. What I did, was get a referral to a Neurologist and used it at Hoag Hospital, and they DO take Kaiser, you just have to pressure them.

I'm not familiar with the area you're in, but my friend with MS has an amazing neurologist who is with UCI.

I have to pay around $3,000 a year to keep my Aetna going through Cobra now but it still gives me the open access plan to basically go to any doctor I want. I asked my employer to change me to Aetna because kaiser is not fast with anything. Since they have their own buildings, staff, etc. They had me on a FOUR month wait for a 5 minute injection for my sciatica and bursitis in my hip. They had a similar wait time for Neurology. I did love my primary doctor with Kaiser though, she really cracked down on my neuro there.

If you feel they are being pokey, call and complain to your doctor about it. It worked for me.

[jingle]

My hospital (in St. Louis) JUST phoned me ..... I check in at 10:30 AM next Tuesday, March 6, have the PET at 11:30, then start the VEEG after that. I'll be in the hospital 3 to 5 days.
Right now, what's horrible is that I can't have any food or WATER (because of PET) after midnight and won't be able to get any until probably 12:30 or 1PM !!! Just like my VEEG Oct. 2005.
At least I'm with doctors I trust completely and a surgeon I adore.

I don't adore exercise bikes.

I used to have strange smells as an aura and it was awful ...... it was usually a terrible body odor and it took me forever to realize it was an aura and not ME. I was usually ALONE --- it had to be ME. How awful.

[Darlene]

Jingle,

I hope you have good luck with your testing. My prayers are with you at all times.

Darlene

[jingle]

Thank you, Darlene, Thank you. I know it's prayers that got me through that surgery last spring.
Well, it's prayers and faith that get us through EVERYTHING