First time to post

[janey]

Hi all,
I've been reading all of your posts, and I guess that it is time to actually say hello to you all!

This Valentine's Day will the the 37th anniversary of the day that I (apparently) had my first seizure. I was alone in a dorm room studying, so they had to figure it out after the fact. Believe me, it was not the kind of night that my boyfriend -- now husband of over 35 years -- had planned. He was and continues to be my major support.

I was in college nearly a thousand miles from home and spent most of a week in the hospital. They didn't think seizure/epilepsy right away, so I had some pretty odd tests!

Anyway, the phenobarbital they put me on first had me sleeping nearly around the clock, so that didn't work with college. Then it was Dilantin for a long time, until gum problems pushed that away. I've had Depakene and Zarontin, then Tegretol (Tegretol XR for a short time, but my gut was faster than it was, and I had the only other documented seizure at that time). Every time I've seen a new neurologist, it has been a different med! And it had to be new ones, because we would move.

This summer, with another new one, I was put on Keppra after having a 24 hour EEG. That neuro was definitely not a warm, fuzzy person. I was one of the ones who had the entire Keppra personality problem. After the morning dose, I'd cry -- actually sob hysterically -- for about an hour. After the evening dose, I'd yell at my husband, usually for no good reason.

That practice got a new epileptologist and I'm now seeing him. He had me in the hospital for a VEEG. Not my favorite thing -- the machine in the room made entirely too much noise, and even with no meds, no GM, and while they could see "activity", they evidently could not document a PS either.

After he realized that Keppra just was not good for me, he started to get me onto Lamictal. No problems with that so far, but we had to get me off the Keppra FAST, so while the Lamictal is building, I'm back on Dilantin. It is amazing how fast my gums are not happy with it!

In the past 37 years, I have been told that everything starts in the left temporal lobe, the right temporal lobe and now the frontal lobe. I just figure that my brain is busy.

I look forward to meeting more of you...

 

[RobinN]

Wow...
Hi Janey - I am so sorry for the rollercoaster you have been on. Wild ride to say the least.

I hope you can find some of our great information here at CWE, to be useful.
How are you doing with the change over?

 

[Bernard]

Hi Janey, welcome to the forum. :hello:

Sounds like you've been through a lot. I hope the Lamictal works out for you. You never really know what your getting into (like Forrest Gump's box of chocolates) when you start with a new AED.

... my boyfriend -- now husband of over 35 years -- ... was and continues to be my major support.

:clap:

 

[LivingFruity]

Welcome Janey :hello:

It's nice to meet you. CWE is a great place to be. There's lots of information and support here. Just make yourself comfy

 

[janey]

Thank you!

Yep, it has been a rollercoaster ride, and I'm the one who always stands and waits for family and friends because I don't really like rollercoasters!

The Lamictal seems to be doing well. He is increasing it at about half the speed that is recommended. I haven't had acne since I was in high school, so the breackouts are not fun, but at least they are now happening only the first couple of days after any increase. (We did check, and it is NOT the famous rash!)

RobinN -- I have looked at all that you and your daughter have been through. I think that if I had to choose a time to have the diagnosis, etc., I feel lucky that I was already in college.

 

[skillefer]

Hi janey! Welcome to CWE. As you see, a friendly group. Sounds like you have been on a wild ride....thank heavens for supportive spouses, huh?

 

[RobinN]

RobinN -- I have looked at all that you and your daughter have been through. I think that if I had to choose a time to have the diagnosis, etc., I feel lucky that I was already in college.

Yes, for a young girl that was so full of spirit, excited to go to HS, this experience has just shattered her. I haven't written half of what she has had to deal with.

As she heals, she is pulling herself out of the trenches, but it has left its wounds.

 

[Meetz1064]

Hi, hello

and how do you do? It's very nice to meet you. I hope you like it here at CWE...Mr B has built us an AWESOME home here....

Sounds like you DO have a bit of a busy brain, doesn't it?

I had a weird experience in college, too.......but I already knew I had E. It just so happened that I went toxic on my meds one day while I was there, and the guy I was dating just had to grab me before I fell flat on my face, and drove me to the nearest neurologist. He walked me in, without an appointment, and DEMANDED they do something. They did something all right, I ended up in the hospital, too, detoxing!

Have fun here at CWE, I'm sure you're going to like it here.......don't forget to check out all of the nooks and crannies....

Take care,

Meetz
:rock:

 

[Ruth]

Hi Janey, Glad to have you here at CWE. You will make many friends here.

I, too had trouble with phenobarbital. I was sleeping all of the time. My husband wanted my neurologist to do blood tests. My doctor would not. My husband took me in right to the doctor's office and demanded a blood test. He took one and it was sky high. I was taken off of phenobarbital. I do not remember what I was put on next. That was a long time ago. I was diagnosed in 1949, 6 years old. I am now 66.

 

[Heather]

Hello,

I can relate to the rollercoaster ride. I posted about mine also. It's no fun being a guinea pig. But sometimes you have to.

I used to take pheno. It was horrible. 1st and 2nd grade I was put in learning disabled classes and speech therapy. I stuttered so bad, I could hardly say hello. Also, there were certain words I just couldn't say. My parents told the school, it was my meds. The school put me in speech therapy anyway. As soon as I got off the pheno, I was put in regular classes and the stuttering went away.

I took dilantin as a kid too, after pheno. It made my seizures worse. So that didn't last long.

I know keppra just doesn't work for some people. But it seems like alot of people start on too high of a dosage. Alot of people start on 1000mg. I started on 500mg and raised it slowly. 500mg at a time, approx every 2-3 wks, until I got up to 3000mg. It took prob 2-3 mths for me to get up to 3000mg. My neuro told me, the slower you raise the dosage, the less of a chance of the mood swings.

I had problems with mood swings once. It was scary. When I first started taking keppra, I took my morning and evening dose too close together. I wasn't used to keppra yet, either. My mind was zooming a million miles an hr. I was paranoid about anything and everything. I was hearing things. I even knew I was acting weird, but couldn't control it, even though I knew it was the meds. It was scary to think, you could have psychological side effects from meds and even realize it while it was happening, but not be able to control it.

Keppra has been my miracle drug though. Nothing has controlled my seizures better than keppra. I've been taking keppra for 6 yrs. It's still improving my seizure control.

Keppra doesn't interfere with other AEDs either.

Depakote was another option. My neuro wouldn't put me on depakote though. I was already taking lamictal. He told me depakote would make my lamictal level go sky high. When I first started going to this neuro, I was already taking lamictal, having horrible side effects from taking too much. That was the last thing I needed.

 

[bluemcgoo]

Hello

Hi, Janey!
It's nice to meet you. I'm sorry things have been so rough for you, but hopefully, they will start back on the upward swing very soon.
Big hugs to you and give your hubby a pat on the back for being completely awesome!
I hope you find this website as informative and supportive as I have.
Best of luck to you.