New member, from Texas (Longg intro-sorry)

[CathyAnn31]

Hello everyone, my name is Cathy and I am 39 yrs old.

I guess my story starts when I was a little kid in the 1970s. My mom noticed some odd behavior after a DPT immunization when I was 4 yrs old. She said I would start to wring my fingers, then would just zone out. She told my pediatrician, who didn't believe her because the Dr. never witnessed any odd behavior. So she spent time in the library (early 70s before internet!) and read a case about a boy in the UK that contracted epilepsy from a bad DPT shot. She took the info to my dr. and from there, tests were run. She was right! I was diagnosed with psycho-motor epilepsy. The 1st med I was on made me crazy hyper. She talks of me climbing the back fence and taking off running, another time I cut lose in a shopping mall and she found me in a china (fine glassware) store walking around with arms out and very close to knocking things over. They switched me to dilantin and I grew out of my epilepsy in a few years. The Dr said there was a chance of it returning during adolescence, and if it didnt then I shouldn't have to worry about anything...

Fast forward to April of this year. I am 39 years old....

We had dinner as a family at 6 pm as usual. I then put on my walking shoes and grab my MP3 player and go on my 2 1/2 mile walk on the bike trail by my house. I feel great!! The walk is fine. I get home around 7pm and my hubby and oldest son leave for their boy scout meeting. My 9 yr old and my 5 yr old are out front playing with neighbors. I decide to vacuum my den. The canister needs emptying 1st. The next thing I realize--------- I am in my bed, totally confused and I call my hubbys cell. The clock says 7:45pm and my tongue is torn to shreads. I ask him when he is coming home for dinner, and how late it was. He said we had dinner at the usual time, and he and my son were at scouts, like every Monday evening. He immediately comes home since my being so out of it really scared him.

I go see my primary care physician the next day. He thinks it must have been a seizure, due to my tongue and the amnesia. He wants me to go for a MRI and then to a neurologist for a EEG. Since I was leaving for a trip to San Francisco 3 days later, I decided these appts could wait til I was back from my trip.

I was very out of sorts for the next 6 days....but I must also say I overindulged in spirits on my Cali trip, and I am sure that didn't help.

I was also in denial....

I finally got around to having that MRI done in June 2009. Results were normal. But I couldnt remember the neurologist my Dr recommended me seeing.

Fast forward to Friday, Aug 20, 2009. My girlfriend and I go to see Staind & Chevelle (modern rock n roll, lol) in concert. Oh we got drunk!! Came home and I continued to drink. I think it was 5:30 am before I went to bed. I couldn't sleep late either because I had to drive to my local radio station and pick up the Incubus tickets I won for the next nights concert. Now, this is my fav band, and I won great tix, and a meet and greet with the band!!!! (Did I mention they are my FAVS??!!) My daughter and I drive over to claim them at around 1 pm. I was feeling kind of rough from over-indulging the night before. I was excited tho, because tomorrow, I would meet my favorite band...

At 4:45 pm Friday I was on the phone with my friend. I scream then drop the phone. My kids said I fell to the floor and had a (tonic clonic) seizure. My 11 yr old was terrified and called 911. My 10 yr old went to grab a neighbor. I didn't even recognize him. The only memory of all this I have, is being wheeled out on the gourney and the ambulance ride to the hospital. I was in the ER for a bit, cat scan was fine and they sent me home. Told me I shouldn't go to tomorrow's concert..but if I did, it was not advisable to drink. I had the headache from hell.

The next day I went to that concert, and I got to meet the band. It was cool, but I was still out of it, and a little dizzy. No way was I gonna miss that dream come true.

The following Monday I made my 1st neurologist appt. I met him today and I just LOVE him, even tho he's younger then I am. 1st thing he tells me is no drinking on seizure meds...lol.

He prescribed me Lamictal XR. He also said he needed a MRI with contrast, which they were able to do today. He also wants a 72 hr EEG at home, and some blood work.

I had to call the office because I couldnt remember if I was supposed to start the meds now, or after the EEG. They called me back and said to go ahead and begin the meds.

Is it typical to do an EEG once meds are started? I would think it would be counterproductive????????

Anyhoo...I know this is very wordy. I'm sorry. I am just saying farewell to my favorite beer Corona, with a slice of lime, before I say adios. Dr told me no drinking on these kinds of meds.

I'll start tomorrow.

Thanks for reading if you made it this far.

[Meetz1064]

Cathy Ann. Welcome to CWE. It's very nice to meet you.

Don't worry about the long post....there have been longer, I promise.

OK, first, I'm sorry about your re-introduction to E. It sucks a hill o' beans. BUT, at least you're being put on meds until you can get things put back in control....be that through diet, neurofeedback or whatever therapy you choose. Your EEG won't really be affected because you will have only been on the meds for a few days, and there will not be enough of a build up in your system to dampen the electrical activity enough. Titrating onto meds takes a while, so I wouldn't be too concerned.

Do start keeping an E journal though, as it will help you find your triggers. It will also help your doctor in the long run, too. I have a great list of things to put into that journal if you'd like it. Just let me know, and I'll post it for you.

Take care. And fee free to kick up your feet and hang out. Check out the nooks and crannies...there are plenty of them, and lots of information to check out, too. Lots of friends to make, also.

Take care.

Meetz

[CathyAnn31]

Thank you for the welcome Meetz. This really looks like a wonderful forum.

[epileric]

I see you've found Spebers Auditorium on your own. Isn't that a great place? I grew up with a rock promoter being a friend of the family so I grew up with lots of music.

It sounds like you're going to go through trying out to see what medication(s) can help you the best. My advice is to keep in mind is that the goal is not to stop your seizures as much as keep you as productive & functional as possible. I've had meds that have stopped my seizures totally but I was so stoned & messed up with side-effects that I would have been happier & better off with a few seizures. Watch that your neurologist doesn't lose track of that.

You also might want to start looking at the various alternative treatments there are http://www.coping-with-epilepsy.com/...ive-treatments There are a number of people here that have tried some of them who can give you feedback (check the "history book" in the Library).

Also remember if you do get really stressed we're probably the only place on the net that has a padded room for you to vent.

[CathyAnn31]

Oh wow epileric, what a wonderful link. I never thought of alternatives!!!

And yes, music has always been a huge part of my life...well the appreciation of music. I have no talent of my own.

I appreciate the welcome.

[McGill]

Welcome - officially, CathyAnn31! We've had some informal introductions with some humor. Please feel free to as any of the Mods or any member for some help and/or encouragement as well as information you need! {{{HUGS}} from Canada!!

[CathyAnn31]

Hi McGill, and thanks for the welcome.

This community has a wonderful feel. I think I am going to like it here.

[Ruth]

Hi Cathy,

This is a great place. Bernard made it out of love for his wife Stacy. It is a forum made out of love.
I love it here. I think you will too. Welcome!! Do not worry about long things that have happened to you. You needed to get it out. We understand you better with a long explanation of what happened.

Tegretol XR worked for me for years. Never drop your meds without talking it over with your neurologist. You need a Video EEG. That shows up everything. I can be lenghty, as well. Again welcome here. Check out the Social Groups.

Ruth

[Bernard]

Hi Cathy, welcome to the forum.

... My mom noticed some odd behavior after a DPT immunization when I was 4 yrs old. ... I was diagnosed with psycho-motor epilepsy. ...

RobinN has posted a lot of information in the forum here about the potential link between vaccines and neurological disorders from autism to epilepsy.

... He prescribed me Lamictal XR. He also said he needed a MRI with contrast, which they were able to do today. He also wants a 72 hr EEG at home, and some blood work.

I had to call the office because I couldnt remember if I was supposed to start the meds now, or after the EEG. They called me back and said to go ahead and begin the meds.

Is it typical to do an EEG once meds are started? I would think it would be counterproductive???????? ...

First priority is always to arrest/prevent seizures - hence why you start the drugs immediately.

anti-epileptic drugs do not stop all epileptiform activity in the brain. They generally just dampen it. It is still possible to pick up epileptiform readings on the EEG while you are on an anti-epileptic drug.

I highly recommend you either take someone with you to your doctor appointments or you write everything down. One of the unfortunate circumstances of a seizure disorder is difficulty with memory. Make sure you get the doc's advice right.

Since it's been so long since you were concerned about epilepsy, I'd suggest the following threads to start your journey:

Epilepsy 101 - Part FAQ, Part tips and advice

Proactive Prescription for Epilepsy

[Cinnabar]

BIG Welcome CathyAnn! Stroll through the Rooms (I've already seen you at Speb's. I happen to love alternative folk rock. A fun relaxing,, stimulating place to hang out if you have a thing for music. And it sounds like you do!) That was one long parenthetical!...As you've already seen folks have a plethora of information, sound advice and a willingness to befriend. Make yourself at home for CWE is a true family. And your introductory post was real and very engaging. In fact you could have gone on some more and I would have still been very engaged. You come across as a natural writer. (Check out the Social Group - The Creative Writing Page).

Glad to have you here!

[Nakamova]

Hi CathyAnn and welcome!

No fun having epilepsy back in your life, but it sounds like you're doing things right. It's great having a neurologist you like. I hope you do well on the meds. I don't want to encourage you to drink if it's problematic, but I'm on Lamictal and I do have the occasional beer/glass of wine/cocktail. The main reason to be careful is that the alcohol and the meds reinforce each other, so the sedative effects of both are magnified. When I drink I always make sure to have food in my stomach, and I drink water at the same time. HOWEVER, everyone has different thresholds/limits, so it's certainly good to err on the side of caution, especially as you're tapering on the meds, and getting a sense of how you feel on them.

Best,
Nakamova

[Blondie47]

Welcome!

You will find this site has the best information and peer support!

[matchu]

try non alcoholic brews... you get nice hops with out the flops! hmm I just coined a phrase! matchu 2009~

[CathyAnn31]

This is a great place. Bernard made it out of love for his wife Stacy. It is a forum made out of love.

What a sweet thing to do. And I am glad I can be a part of it, as well. Thank you Bernard!!!

Thanks everyone for the warm welcomes. Its sure nice to feel, when lately my thoughts have been so full of uncertainities. But ya know, its starting to look a little brighter.

[Ruth]

Hi matchu,

What non alcoholic drinks are you talking about? I cannot drink at all, it is a trigger for me to have seizures. Ruth

[dfwtexas]

Hi Cathy,
Welcome...this is a great place for information and support
I got diagnosed at age 47 and this place has been a Godsend for information
Lack of sleep is a huge trigger for me and others. Also, I am photosensitive and have to be careful about lights....some concerts light are a big problem for me.
I am on Keppra. I very rarely drink, usually a glass of wine a few times a year. My neurologist said I could try a drink...but do not drink within 2 hours of taking my meds and limit it. I have had a few drinks and have not had any problems. Some people can have a drink now and then...some can't.
jenn

[skillefer]

Hello! Welcome to CWE! Sorry to hear about the E. As for the meds, it'll just dampen the activity, not completely get rid of it, so if it's there, you'll see it on the EEG. Don't be surprised if your memory starts to go. Most of us on anti-epileptic drug's have memory issues too. Some are caused by the meds, others by the seizures. I had one and couldn't recognize my hubby once....
You'll want to ask the pharmacist if there are any interactions between your new med and any other meds your taking, herbal supplements, vitamins, and foods. Some meds reduce the effectiveness of birth control...some foods can block the med absorption, and crazily, some meds can cause you to absorb even more of the med then you normally would. So check. Also, check to see if the med causes you not to absorb any vitamins or minerals. For example, Dilantin can block vit. D absorption. Definitely talk to your doc/pharmacist about it.

[CathyAnn31]

Thanks everyone!

The lady will be here tomorrow to hook me up with the EEG things, and I will wear it for 48 hours. Not showerig/bathing or exercising (and getting sweaty) is going to be hard. But I hope something will show up.

I haven't taken the 1st pill yet, but will soon. Was waiting til the end of the day in case the med makes me feel strange.

Will keep you updated.

[McGill]

That won't be too difficult, wearing the electrodes for 48 hrs, CathyAnn. I had to have telemetry for 1 wk. so I know how you feel! Yucky++ !

If you're able to do so (if the Rx makes you feel strange, please keep a diary of how and what you feel. I did this when I visited my neurologist today!

[moonchild1970]

Welcome Cathy! I am new here too! It seems to be a very nice place.