Hello! I'm new.

[Kate]

I was recently diagnosed with epilepsy in July. I was first put on Dilantin, but had an allergic reaction. Than I had an allergic reaction to Tegregtol and now I have been on 1000 mg of Keppra a few months.

Unfortunately the Keppra hasn't been doing so well. I am angrier than usual, and a lot more moody. I also have developed anxiety. They assume it's on the Keppra, but now I am also on Valium for the anxiety. I take 5 mg of Valium as needed (up to three times a day.)

Today, my neurologist called in a prescription of Topamax, but I'm not sure how much I'll be taking until someone picks up my prescription. (I just realized I had the meds mixed up! and fixed the post)

Because of how awful my seizures were most recently, I am currently waiting on admittance to the IU Medical Center in Indianapolis, IN, which is about three hours from my home. The neurologists there are going to work close with my neurologist to try to get my seizures under control, and figure out what's causing them. I just got off the phone with my neuro office and the earliest they could get me in there is Jan 16th at at 8 am.

I have had cat scans, an MRI, and two EEGs (one sleep deprived - one not), and they still don't know what's causing these seizures.

I also have SEVERE insomnia. I take 20 mg of Ambien at night along with 12.5 mg of Ambien CR and I generally still have a TON of trouble falling asleep, and we all know lack of sleep can cause seizures.

I'm really hoping they can figure me out soon.. I'm such a mess. I have no idea how I'll react to this Topamax and I hope it works well with the Keppra. (Sorry, did think it was Tegretol! Sorry I was so confused, lol.

Sorry that's such a long introduction!

As for me, I'm a 19 year old. I was working as a nanny until I found out I needed ankle surgery (had a joint fused) because my ankle healed wrong after being in a bad car accident in June of 2006. SO, in June of 2007 I had my first ankle surgery, than started having seizures in July. On January 9th of 2008 I have my second ankle surgery.

Since I cannot drive, and am back to living with my parents in a town with no public transport, I currently can't work. I am working towards getting a degree in Business Administration online though. = )

So.. I think that pretty much sums me up! sorry it's SO long!

 

[TeeTees]

Hi Kate,

Welcome to the site. You say they're gonna put you on Tegretol....are you sure you will still be taking the Keppra AS WELL ? I would ask your neurologist to confirm this, as sometimes (not all occasions) taking two AED's can have counter-acting effects between the medications.

I have a bit of a sleep problem too, but it doesn't sound as severe as yours. I've started taking 5-HTP 45 minutes before bedtime to see if that'll help, but to be honest I think it depends on the day that I'm having, ie. good or bad, that is helping/preventing me from getting off to sleep. Do you find that you're 'expecting' NOT to get off to sleep ?...as this could also cause you to be too tense, to be ABLE to sleep. Have you tried any 'self-hypnosis' techniques for gettting off to sleep ? It's just that like you said, this is a vicious circle with the Epilepsy unfortunately, and maybe you should look into curing the problem - sleep deprivation - which in turn would aid the frequency of the seizures.

I hope this helps. Stay on board though, as you'll find alot of nice and helpful people on here. :hi5:

 

[Kate]

Yes, I'm positive that she is putting me on both. Since I'm 19, and pretty out of it all the time (I didn't even mention that I'm on pain medicine for a ruptured disc - which should make me sleepy anyway) my parents are the ones who do most of the talking to my doctors. And, my mom is very good about tracking my medicine, making sure I'm on the right stuff, and making sure I take everything at appropriate times.

I have tried all sorts of things for my insomnia. I go to a special doctor for it, and I follow their instructions to a T. I have even been reading a book about sleeping disorders and how to deal, that was recommended by my sleep doctor after I went through a sleep study, but I still have trouble. I try to relax, and not even think about "sleeping" I'll try to focus on something positive or try to put myself on some tropical beach.. etc.

I normally count backwards from 100, and SOMETIMES that works. It's really my best way to get my mind of things.

I have also tried 5-HTP, but it did not help. Before Ambien I was also on Ambien, I tried Lunesta, which didn't work, as well as Sonata and Rozerem. For awhile I was even on Ambien CR WITh Rozerm and it didn't work, so that's why I recently switched to the Ambien AND Ambien CR (been on it two nights.) I also tried meletonin awhile ago, but it didn't help either.

Whenever I am admitted to the IU Med Center I am hoping they figure out what's causing this too.. because even the doctors that specialize in sleep issues are baffled by me, lol. They aren't sure what to do.

Oh, I've also tried therapy (they thought maybe the sleeping disorder was caused from anxiety) but that didn't even work.

 

[Bernard]

Hi Kate, welcome to the forum. :hello:

It is widely reported that taking vitamin B6 supplements can help curb the side effects of Keppra (Keppra Rage). Is the Keppra at least controlling the seizures?

There's lots of information and friendly people here. Make yourself at home.

 

[Kate]

No, sadly the Keppra is not controlling the seizures. However, I'm starting Topmax along WITH the seizures tonight for the first time, so I hope they get under control.

The type of seizure I last had is called "status epilepticus" which is a seizure, that has a 30% chance of being deadly, that lasts longer than 30 minutes.

That's why my neurologist decided that I needed to be on new medicine, and see some more neurologists.. so that's why I'm going to the IU Med center on January 16th. I'm crossing my fingers they figure out what is causing these.

So far I've had all normal results from EEGs, normal cat skans.. so who knows? I'm a huge medical mystery.

Also, no I have no tried B6. I had never heard of that.. My mother will be picking up my topamax at the pharm tonight, so she will have to pick up some B6 along with it.

 

[wonderdogs]

Hello, Kate! Good luck with the new medicine regimen! Welcome to CWE!

 

[Birdbomb]

Welcome Kate

Most cases of epilepsy are idiopathic, which means they just don't know WHY. Hopefully the root cause of yours can be found and treated properly! Good luck.

 

[Nancy]

Hi Kate ~ Nice to meet you.

 

[brain]

Whoopsie ... I did it again!

:lol:

<--- feels so embarrassed!
:embarrassed:
Just said Hello to Kate on Eric's thread!

But will say it again .......

:hello: Kate!

And what Birdy posted is correct, sometimes
they just do not know why or the reason for
the seizures. But even if they do find out, one
can still be labeled as Idiopathic. It can be
downright frustrating!

But stick around - we're a lovely bunch of
folks here ... and who knows what we're up
to! Kick back and learn and meet new folks
and laugh your way around too!

 

[wonderdogs]

Hi Kate, welcome to the forum. :hello:

It is widely reported that taking vitamin B6 supplements can help curb the side effects of Keppra (Keppra Rage). Is the Keppra at least controlling the seizures?

There's lots of information and friendly people here. Make yourself at home.

Bernard, what is the recommended dosage of vit B6. There is 18mg in my multi vitamin. I don't have any mood changes with the Keppra, only drowsiness.

 

[RobinN]

Hi Kate - Welcome!
In your first post you say that you can't get into the Neurologist until July 16th, but the second post you say January. I hope the second date is the correct one.

I hope that you get some better answers soon, you seem to be on a lot of medicine.
My daughter, age 16, has been trying the fourth med, and I think it has been causing more seizures. So I am holding steady at the moment and not increasing. Seems the seizures are less frequent, but still happening.

Glad you joined us.

 

[Meetz1064]

Hi Kate!

Sorry to hear that you too, have the idiopathic variety of seizure.....bummer deal. Maybe they'll find the cause eventually. They never have found the cause for mine...not in 43 years. I have the tonic clonics.

I still don't sleep well, but I DO use melatonin, a heating pad, quite a few blankets, and an herbal tea...chamomile, or green works well. Sometimes I use the Sleepytime tea, sometimes I dont...just depends on my mood. You'll eventually find something that works.

What about trying the memory foam mattresses and pillows? I have some friends that, like you, had tried just about everything...and then used these, and were actually able to sleep. Just a thought........

Welcome to CWE.....lots of neat people, and really neat things to learn here. The things I've been learning are amazing.......

Good luck!

Meetz

 

[Bernard]

Bernard, what is the recommended dosage of vit B6. There is 18mg in my multi vitamin. I don't have any mood changes with the Keppra, only drowsiness.

I don't know. I know too much can interfere with AEDs. It's probably best to ask your neuro what is a good amount. If you don't have any Keppra Rage side effects, you are probably taking enough.

 

[Kate]

Hi Kate - Welcome!
In your first post you say that you can't get into the Neurologist until July 16th, but the second post you say January. I hope the second date is the correct one.

I hope that you get some better answers soon, you seem to be on a lot of medicine.
My daughter, age 16, has been trying the fourth med, and I think it has been causing more seizures. So I am holding steady at the moment and not increasing. Seems the seizures are less frequent, but still happening.

Glad you joined us.

LOL That's just me being out of it, it is January 16th, I don't know why I put July *shrugs* And it's not just any normal neurologist, it's the specialists at the IU Med Center I'm getting into on Jan 16th.= ) July is when my seizures started. July of 2007 that is.

I know just how your daughter feels. I've been on medicine, after medicine. *sigh* It must be awful to have them while in high school. I'm lucky in a way, because they started happening to me during a time when I can just kind of take a break from everything. 16 is a BUSY time in life. Age 19 generally is too - but Im on medical leave from college, and I'm falling behind, but it's not a big deal. ((hugs to your daughter, and if she ever needs to talk to me.. I would love to talk to her.))

 

[RobinN]

Very sweet of you Kate. Usually she doesn't want to talk about it, except when it happens. Then she just wants to move on and forget it. Some friends are asking if it is okay to talk to her about it, and she is opening up and sharing. She even helped a friend who experienced her dog having a seizure.

Yes 16 is a busy time. Hard to watch it bring her down, yet I do know it will only make her stronger in the long term.... so I hope. We make the best of the good times. She is planning for the Winter Formal this Saturday, which is a big deal at her school. The first boy she asked said yes... so she is smiling.

Can you start doing some of your college courses via internet?

Your appt is only a month away. That is exciting. I hope they give you all the time that you need to get some really good answers.

Let me know what your mom thinks about all of this.