Newly Diagnosed - Not sure what to make of it...

[SeaWolf]

So, here is my story.... I was diagnosed by a Neurologist yesterday as having "Idiopathic Epilepsy". I am 30 years old, married father of two girls ages 5 and 1. I consider myself a healthy person, I rarely am sick, I don't even get headaches. Monday June 27 I went in to see my doc for my yearly physical and he proclaimed me to be very healthy according to my labs and exam, only could stand to lose a few lbs.

-June 25 & 26 I played a total of 6 softball games in a tournament in Raleigh, NC

-June 29 - Boss and I went out for dinner and drinks after work.... prob had a few too many this night, but not more than I've had in the past as well

-June 30 - Got to work around 9:30, ate fast food for breakfast and lunch, definitely felt hungover. Today was the end of our quarter so we were very busy at work. I am a Supply Chain Manager for a Diagnostic Imaging company, I kept busy all day in our warehouse helping crank out shipments. Around 4:30 pm I was taking some notes on some shipments and talking to a co-worker when all of a sudden I started hearing people talking in slow motion , almost sounded like Charlie Brown's Teacher. Next thing I know I woke up in the back of an ambulance. My co workers said that I was unconscious and didnt breathe for a little bit. I noticed my tongue was sore too. They took me to the ER and hooked my up on saline to rehydrate me. After a few hours, they were getting ready to discharge me. I was drinking water and even was able to walk myself to the restroom to relieve myself. When I returned to my ER bed waiting to discharge, my mother was talking to me when all of a sudden I had another episode and blacked out. I awoke hooked up now to some Atavan IV and was being given oxygen. They took me over for a CT Scan which came back normal. After a few hours longer, they finally released me to go home with the expectation that I would return in the morning for an MRI. Gave me a prescription for Atavan as well.

July 1 - Woke up at 6:30, took a shower and wife drove me back to the Hospital for the MRI which was at 8am. MRI complete and wife and I left and headed over to Wal-Mart to get my prescription filled. Also called and set a follow up appointment with a Neurologist. Dropped off prescription and walked around Wal-Mart while waiting for meds. Headed back to restroom where after I was done relieveing myself, experienced a 3rd seizure. Again, blacked out and didnt wake up until being wheeled up the main aisle of walmart on a stretcher and then rushed back to the ER. Hooked up to Saline and now Dilantin. Sent for an EEG while in the ER. After a few hours I was stabilized and released with a prescription for Dilantin. Headed home.

July 2-5 Stayed home and recovered. Have not experienced anymore episodes since.

July 6 - Appt. with Neuro. She had us recap all events leading up to that day and she simply diagnosed me with Idiopathic Epilepsy. She quickly reviewed my MRI and said there was nothing alarming about it. To my knowledge has not reviewed my CT scan or EEG and instead wants me back for an extended EEG next week. Also said I cannot drive for 90 days, but she is not required to report me to DMV. Also, wants me off Dilantin because she does not like it, and instead wants me on Keppra XR. She would ultimately like me on Lamictal, but says that I have to do the Keppra first.

I am currently on 400mg of Dilantin (actually generic Phenytoin) which I take 200mg in the AM and 200mg in the PM

Neuro wants me on 1000mg Keppra XR, but wants me to stay on the Dilantin at first. Basically: First 4 days: 400mg Dilantin, 500mg Keppra XR, then next 4 days: 300mg Dilantin, 1000 mg Keppra XR, then next 3 days: 200mg Dilantin, 1000mg Keppra XR, then next 3 days: 100mg Dilantin, 1000mg Keppra XR, then finally off Dilantin completely and only on 1000mg Keppra XR

What I'm not sure of is should I take it all at one time a day, or maybe Dilantin in the AM and then Keppra in the PM? She did say she wants me to take the Keppra only in the PM, but wasnt clear how to handle the Dilantin.

Obviously this is alot for me to understand and I feel like I should maybe get a second opinion. Do I really just all of a sudden have Epilepsy, with no known cause??? I feel like this is such a drastic diagnosis that is seriously going to affect my life, perhaps I should have another doctor confirm this? Or do I accept this as fact and learn to live with it?

Thank you in advance for your support and help, I know I'm probably not alone.

 

[Nakamova]

Hi SeaWolf, welcome to CWE!

I understand your confusion -- it's pretty tough to process everything after a seizure, let alone while medicated and in the early stages of a [possible] diagnosis. Like you, my seizures came on out of nowhere, when I was 35. There was nothing relevant on my CT or MRi scans, but my EEG showed classic epilepsy brainwaves so I agreed to stay medicated. After about 8 months, I tapered off (under doctor's supervision) to see what would happen. I ended up having another seizure. That was 11 years ago, and over that time I've tried unsuccessfully several times to go med-free -- so by now I've gotten used to the idea of having "idiopathic epilepsy." I know it seems strange not have a known cause, but actually the majority of epilepsy cases are of unknown origin.

It IS possible your seizures could be a one-time deal, maybe to due to dehydration and fatigue. The EEGs will be the most useful in confirming the diagnosis either way, so I would hold off on getting a second opinion until those tests are run. If the EEGs are inconclusive, then you'll need to decide about whether to stay medicated or not, balancing that against the risks of having another seizure. Generally an epilepsy diagnosis isn't made until you've had more than one seizure. In your case, it's seems that you have, although an argument could be made that all 3 events add up to just one (or maybe one-and-a half) seizure events.

As for your meds: Dilantin is usually what's give in an ER, because it's cheap and has been around forever. But it has long-term side effects, so neurologists like to move you off of it. Keppra can be ramped up quickly, so it's often the next choice. It comes with it's own potential side effects, so if it doesn't suit, the next popular choice is often Lamictal. It's not administered from the start because you have to ramp up verrrry slowly in small increments; usually the transition doesn't occur until after you are stable on another med.

If you can't reach your doc about the Dilantin/Keppra dosing question, I would suggest that you do the Dilantin in the a.m. and the Keppra XR in the p.m. just so you don't get knocked out all at once. The "XR" means extended release, so as you get up to a therapeutic dose of the Keppra it should cover you over the course of a day.

In the meantime, be as proactive as possible about your general health. Write down all the details you can remember about the days leading up the seizures, and keep notes on how you're feeling on the meds as well. All that will be useful for your neurologist, or for another doc if you get a second opinion.

Best,
Nakamova

 

[bazpa]

I feel for you. although I haven't known what I was dealing with until last October, I have been dealing with this for 4 years, and it is a lot to take in, even when you finally find out what the name of the condition is. This site has been the best. Everybody here has been so very nice, helpful, and knows so much information. They also know how you feel, which is very helpful, because even though your friends and family love you and are concerned, this is so hard to try to explain what it feels like, and what you go through. Learning as much as I can has also helped me. I especially liked your Charlie Brown teacher comment. That is the very same thing I told my husband that I heard several time when he would say-"I just talk to you about that a bit ago" He would get really irritated at me, and at first when I told him that- he thought I was being a smart a$$! I really had to try to explain to him I was being serious- that I could here his voice, but the words were jumbled, far away, slow like, and together-hard to explain. Basically the light are on, but nobodys home! Best of luck.

 

[Ash]

I can relate

Wow, that was pretty quick from your first siezure to your diagnosis. I was 28 when my 'episodes' began, took me over 3 years to get diagnosed. (about 8 months ago) Ive been on anti seizure meds for less than one year now. All I can say is, kept your head up. I was scared initally, the thought of showering alone etc freaked me out sometimes incase i had a seizure. But over time things have definatly improved. Side affects of the meds aint great for me but they are a lot better than the big seizures.

This illness definatly takes a bit of getting used to but over time you will.


Best regards

Ash

 

[bazpa]

I guess I was not very clear!! my bad! It took me 3 1/2 years to get diagnosed. I started thinking I was losing my mind, when the doctors acted like it was depression or hormones. I have only been on meds for 7 months, and have tried 6, I think. Side effects can be Horrible!! Hives!!! The first night I took the first one, I slept through the night for the first time in 4 years, and did not have night sweats-it was wonderful! until I got allergic.

 

[paradise survivor]

Aloha SeaWolf, I was diagnosed @ 37. Boy was I pissed!!!: I came to terms with it....ok I am still trying to come to terms with it. Sorry I can't be more encouraging but I denied, fought, denied, ignored,denied...well you get the picture. CWE has been a saving grace for info and venting when needed. Learn as much as you can, don't take this (E) as a one size fits all-it doesn't. Please involve your family and realize this is FAR more scary for them to witness! The hardest thing for me was accepting help and to accept my new reality. My husband has been my rock ( don't sell your wife short on this one) Information is your greatest weapon and your family is your strenth :e:

 

[paradise survivor]

P.S. I have taken more drugs than Jim Morrison (The Doors) and had more body styles than GM and Ford put together...he still loves me. Keep bandaids handy and learn your Auras and triggers - they are there you just need to look and listen. Here at CWE I have learned that many of the feelings I have experianced were actual seizures ( what a relief...I am not crazy) Since I have begun Vimpat I have found many quirks have vanished (who knew). Color blocks are gone, the refrigerator doesn't move and I don't hear choirs in the backround and those are just the ones I don't share with others. Oh yeah, keep an extra pair of pants...it happens your friends and family won't need explanations and your enimies won't believe it...hang in there, the sun will still rise and you will go on, how is up to youop: