Just Diagnosed!

[Rae1889]

So I was just diagnosed with epilepsy about an hour ago. I spent the last 18 and a half hours at the Emerg in and out of conciousness.

Went there at 4:00am because i started a Tonic-Clonic Status. I got up to pee, turned the corner and crashed to the ground and started at it.

I will post longer tomorrow morning all the details as I am so tired right now. Feeling better, but tired. It's nice *in a way* to officially join the "team"

P.S. Darcness and your lovely wife, I totally had my fiance re-read it this time to make sure it was readable! Although I am not convinced on some of his grammar or spelling, but I am high as a kite on Demerol! TTYL!

[Nakamova]

Welcome to the club. Now we can show you the secret handshake, and let in you on all our secrets...

I hope you feel better Rae. Get a good night's sleep.

[epileric]

Good stuff, it's official.

Don't worry about your spelling. I've said & done stuff that I normally wouldn't have after a seizure. I don't worry about it since I've got so much other stuff to be worried about. Bottom line is we (at least I) understood you & that's what counts.

[Meetz1064]

I'm sorry to hear it, but at least you know for sure now....Now we gotta show you the handshake, don't we????

[darcness]

It sounds like you've had quite the night. Get some rest, recoup, and come back when you can. I know you're probably drained so sleep is the best for you right now anyway.

As for the grammar and spelling, I was totally joking around. We've all been there and done that. Heck I've done it and I don't even have E so I suppose it doesn't much matter.

Once you're feeling up to it, let us know how you're doing.

[Chris515]

I hope you got a good rest Rae.

I hope they'll put you on some good meds that will help.

Yup, time for the secret handshake! Know that we're all here for you.

[skillefer]

Dang it! I thought it was the all over body shakes! Welcome to the "team" Rea. Now go get some rest.

[Rae1889]

Nakamova: Thanks muchly for the support! Secret Handshakes are awesome, but i have almost zero hand eye coordination. So I'm sorry in advance for any eye-poking that may arise from the teaching! lol

Eplieric: Thnx to you too!

Meetz: WOOT!

Darcness: I know you were just kidding, but i totally thought it would be funny if i mentioned that this time i had to make sure I checked that everything was spelt okay and whatnot. You made me bust a gut with the "tooh brus" thing

Chris: Thanks so much!

Skilly: HAHAHAHAHAHAHAHAHAHA

Rest was good btw. slept from 11pm last night to 4:00pm today. Geez I was tired.

The story is to follow.

[Rae1889]

Okay so here is how this went down. *mostly from Chad's view, as you all could understand, I was oblivious to all*

So at about 3am Tuesday morning, I got up to pee, came back and went back to bed. About 15mins later, I got up to "pee", came back and went to bed. Then at 3:30 again i woke up to "pee" and came back. Chad Noticed and asked what was wrong. I didnt answer and went to sleep. at 3:45 I got up to use the bathroom again, but this time I turned the corner and bailed to the floor in full convulsions. Luckily Chad heard and came running. This lasted approx 4 and a half minutes.

After the seizure stopped, Chad got things ready to go to the hospital for a possible concussion and head injury, as I smashed my head into the baseboard heater. As he was gathering things, he left me comfortable on the floor, when I had another T/C.

This one lasted about 2 mins. After that one stopped, he scooped me up and off we went to the hospital. *I'll note that I only live 5min drive to the hospital so it was faster to drive than call an ambulance and wait.*

So in the car I was fine, but about 3 minutes after getting me seated at the triage and Chad telling them what happened, and the nurse asking me questions that got me frustrated because i couldnt answer them. *These were Where are you? Do you know what day it is? Can you spell your name? What time is it? etc and my brain wouldnt function to pull the answers out* I had a complex partial and then a few absence seizures.

The quickly admitted me *and by quickly, I mean this poor nurse didnt even have time to print me off the bracelets and morphine alert* I was put into my own little room thing in Emerg, and then got hooked up to a ECG , EEG and had an IV lead put into my arm. *according to chad he asked why it was just the lead and i wasnt given any fluids and they told him its cuz if i had a seizure with that attached to my arm I'd pull it over.*

I had several more absence seizures and minute long T/Cs. They injected me with something that controlled them slightly *made them farther apart* but didnt stop them.

Finally they got me on Valpouric acid Which seemed to do the trick in addition to what they had given me earlier. I was asleep until about 8:30 *during this time I had small seizures in my sleep that kept setting off the ECG alarm for high heart rate. you should have seen the floor! it was covered in print-outs!*

I woke up to breakfast, and reading off the little print out, it said "your meal has been carefully calculated to follow the modified Atkin's Diet!". This I thought was pretty cool.

at about 10:30 I had another complex partial. but they didnt give me anything for this one. I went back to bed. *poor Chad was so tired but couldnt fall asleep in the plastic chair.* I was then woken back up for Lunch and this time the print-out said that it was just clear fluid things *soup, jello, juice and tea*

I stayed awake from this point on though i was really groggy. I kept setting off the heart rate monitor so they eventually made me see a cardiologist too. No more noticable seizures for the rest of the day, except for a few short absence.

During this time until supper they had blood tests done now that it was safe *less likely i would have another T/C* and got my CT scan that i had on thursday rushed. Dinner was good. it said it was calculated for people with diabetes *shepards pie and jello and some crazy good vegetable soup!*

So around 6:00 I got to speak with the neurologist and he told me the following.
1) I have scarring on the front of my brain. *most likely from a bike accident I had at 9yrs old.*
2) I have Juvenile Myoclonic Epilepsy *mostly nocturnal, which is why i was always tired because I was not actually resting* The twitching I had most of my life was actually this. and my space cadet moments.
3) I have a melanolin (spelling) deficiency that i need to get solved. *yay I'm a mini Meetz!*
4) I get to go on meds!!

He expained that Lamicital (lamotrigene) is the best med for someone my age and best at controlling juvenile myoclonic epilepsy unless i end up allergic, in which case i go on Keppra. He said the side effects are low *drowsy and the possible rash* and its the best one and least harmful for a baby should I choose to get pregnant.

He does not know if this med will help with the seizures from the scarring *somewhere around the right temporal lobe* and may need to add another med or up the dosage.

He wants me to be on 400mg Lamictal eventually *it takes so long to ramp up to that much* and hopefully I will be seizure "free"

2 questions---

Why would they try 3 different meal types on me in the hospital as opposed to keeping to one *I do not have diabetes*

When I got my Rx, it said Lamictal, but when the pharacist gave it to me it was Lamotrigene. I asked and he said they were the same thing and left it at that. I know they cant be too similar as they have 2 differnet names. So what is the difference and why not be on the one Rxed?

[epileric]

When I got my Rx, it said Lamictal, but when the pharacist gave it to me it was Lamotrigene. I asked and he said they were the same thing and left it at that. I know they cant be too similar as they have 2 differnet names. So what is the difference and why not be on the one Rxed?

My understanding is that Lamictal is the brand name the company markets it under but Lamotrigene is the chemical name.

http://en.wikipedia.org/wiki/Lamotrigine

[Meetz1064]

It's nice to have a Mini-Me!!! LOLOLOL!!!!

OK, so the melatonin problem is easily solved. You can actually get that over the counter, although if you can get a better, pharmaceutical grade, that would be even better. Start out at 3 mg (that's the lowest dose) every night, and see how you do. You may need to work your way up, and that's something that you can talk to your doctors about--I'm currently on 20, and looking at upping again. BUT REMEMBER, I have a cyst in the gland that produces the melatonin, so I don't make any AT ALL.

As for the prescription: Lamitrogine is the GENERIC Lamictal. The difference between them is that the fillers/binders used in generics change the potency--so that the pills are anywhere from 80% to 120% effective. If it turns out that you think that it's not working quite so well, ask that a prescription be written for the Lamictal, with the words "Dispense As Written" put on the prescription. That way the pharmacist HAS to give you the name brand med.

I'm sooooo sorry you had such a rough time of it, Rae. What a bummer deal. Sounds like you came out of it pretty quick, though. I'm happy for you in that respect.

Give Chad lots of hugs and kisses, he deserves them for taking such good care of you!

Meetz

[Rae1889]

lol 18 and a half hours didnt seem quick at all. lol But they wanted me out cuz they had a burst of H1N1 people come in. so they said here you go *Rx* and go home and sleep. lol so i did for like forever!

i still feel like a truck hit me, but way way way better than i did before. times a millon and Pi!

[Nakamova]

You should check with your doctor about whether you need to get the brand (Lamictal) or the generic (Lamotrigine). My neurologist says no substitutions -- it has to be the brand, because the generic can come from different factories each time your pharmacy orders it and vary in how much of the active ingredient there is. It can be a big deal if you're sensitive to small variations in your blood levels of the drug.

The three different happy meals they served you at the hospital -- what's up with that? I would ask them. Maybe there was some sort of twisted logic behind it all.

[CathyAnn31]

Wow, you've sure been thru a lot lately!

I am also on Lamictal and my Dr specified on the script "no generics". Makes me a little nervous because I don't know how much it's going to cost at the pharmacy. Luckily I have plenty of samples left for now.

I hope the meds help things settle down for you.

[moonchild1970]

Congrats on finally knowing what is going on but sorry it is E. Welcome to the club! *Offers you the secret handshake*

[Rae1889]

*replies to all with the secret handshake!* wowy, I love secrets!

I'm going to ask my neurologist if I can get him to write that it must be lamictal only. When i was talking to him about drug options he didnt even mention the other name for it, so I think i am going to make sure that this is no big deal to him.

It doesnt really matter to me at the moment, but should it change the control each time i refill then its definitely a matter Im going to check into.

[epileric]

I'm going to ask my neurologist if I can get him to write that it must be lamictal only. When i was talking to him about drug options he didnt even mention the other name for it, so I think i am going to make sure that this is no big deal to him.

Good idea to check it's no big deal to your doc.

I agree that lot of generics may not have the same dosage but I would see how you react to it first but I don't know if that's always bad. You don't know if that difference in dosage (more or less) or fillers would work better with you or not.

[Rae1889]

Too true. I will definitely ask. I'm not even sure if i am allowed to ask the pharmacist to dispense it as written, or are they even allowed to choose whether I get generic or not? because the Rx specifically said Lamictal

[Nakamova]

With my pharmacy, the RX has to say Lamictal AND "No substitutions" . The neurologist has to explicitly say no substitutions, brand-only, otherwise the pharmacy will automatically go for the cheaper generic.

[skillefer]

The only reason I can think of for switching up your meals would be to see if it effected your rate of absorption on the meds.