:hiya: And thanks in advance for any input!

I saw my Neurologist today, and since I recently had another seizure, she has now added Trileptal on board. I have to taper up to 450 mg twice a day in 3 weeks along with the current 1,250 mg of Keppra twice a day.

Does anyone have any experience with this med? I researched it on the net, and she was very thurough about side effects, etc. Sounds to me it will take an adjustment, and it should be the same as getting used to the Keppra. Glad I didn't get put on a weight gainer :yes2:

We talked about trying phenobarb again, but since I am mainly having partial complex right now, she thinks this other med would be better to try. I had great success with phenobarb and went 3 years seizure free back in the late 90's, but I do understand her feeling it may be a bit too much since I'm not having tonic clonics all the time-last tonic clonic was in February.

Hope everyone is doing good!

Dispatch B)

:hiya: Dispatch,

Glad to hear you had a good visit with the doctor today but am sorry to hear you recently had another seizure. I am unfamiliar with Trileptal but have been on Tegretol (Carbamazepine) which from the reading I did online, this new one you are on is a newer version of with an extra oxygen atom which in turn causes less problems with increased liver enzymes. That is one reason I went off Tegretol was due to my liver enzymes being so high. So I am glad to hear this is less of an issue regarding that side affect.

I hope it all goes well with you as you begin taking Trileptal. Keep in touch and let us know how you are doing!

Hugs,
Cindy

:Thanx: for your good wishes Gel!

Yes, I too read about the Oxygen atom deal.

I took the 150 mg last night and 150 mg this morning, and tonight will be another 150 mg. I will bump up on Monday to 300/300, then 450/450 the following Monday. So far, I am feeling more tired and off balance than the normal and a wee bit sick to my tummy, but other than that I am ok.

I'll keep ya'll in the loop!

Dispatch B)

Hey Dispatch,

I tried Trileptal for depression, unfortunately, it wasn't helpful. I do remember some sedation and nausea. The nausea cleared up, but the sedation didn't.

Good luck with it...it may be the med for you!

:Thanx: Oreo and Gel!

I didn't know this AED was also used for depression...very interesting. Got a bit of situational deoression going on as well, so maybe I'll get seizures and depression leveled out again.

Sorry you didn't have success with Trileptal Oreo. I am noticing this morning I am more tired than yesterday, so guess the doeses are buliding up. Hope it doesn't get much worse with the 2 increases I've got ahead of me.

Dispatch B)

I was on this medicine for sedation with my insomnia. But my pdoc only gave me 4mg tablets. I haven't taken it lately. I took 12mg at one point, but that just gorked me out the following day. IT is also an antipsychotic. I had no idea it was a AED. I do take it sometimes during the day if I get anxious or irritable.

Sincerely,
Bonnie

Several drugs are for depression and seizures.

Worked great for me! I have C. P. seizures.
The sedition goes away with time.
It is very close to Tegratol. That being said, I did gain weight on it. Like 30 pounds! This would be the reason I'm no longer taking it.

But I'm weird and I always get the side effects that most others don't get.
You will probably be fine.
Good Luck, over all I loved it as an AED.

Elisa

Thanks for all the input guys. Right now I'm not feeling very good, and I hope that goes away soon. Kinda makes me leary at this point because I am not to the level she wants me at yet. I'll keep you posted.

Dispatch B)

Hey Dispatch,

You know yourself...and you know meds...maybe you need to ask about backing up a bit and taking the increases at a slower pace. I know our docs want to get us to a therapeutic dose quickly so we will get benefits...but being miserable doesn't make one want to play that game.

If you feel just as bad at a lower dose...over a longer period of time...I'm not betting that you'll be feeling any better when the dose goes up.

Like everything...will you get enough benefit to make feeling crummy worth it?

I hope you'll be feeling better soon Laura!

:Thanx: Oreo!

Dispatch B)

Dear Dispatch,

I hope you will feel better soon. Why not get Zofran for the nausea; it works great!

Take care of yourself :bigarmhug:

Sincerely,
Bonnie

:hiya: Petunia! Wow...you gained 30 pounds 'eh? If I gain 30 pounds on this stuff I will be the weeble that wobbles & does fall down. :ROFLMAO: My Neuro said I wouldn't gain weight. She said in my situation it may change my appetite to not being too hungry which so far is the case.

In physical therapy yesterday, my therapist noticed increased lack of coordination and balance. It is discouraging right now. He had planned on working on balance yesterday, but since I am on a new med, he is approaching my treatment plan a bit different until I find out where I am at with this med.

I am trying to get all my docs on the same page and re-evaluate Neurofeedback for me. So far I only have one doc that is on board with my way of thinking about Neurofeedback.

:hiya: Bonnie! :Thanx: for your suggestion about Zofran. If I can't get the nausea under control, I will bring it up to my doc. I noticed if I just lay down when I am feeling queezy it does help some. Quick movement is adding to the dizziness...I feel really off equalibrium and don't want another med that is sedating.

I HATE :Censored: MEDS!!!

Dispatch B)

Hi!

I feel :Icky: As prescribed, I increased the Trileptal to 300 mg twice a day on Monday. The wanting to throw up feeling isn't as bad, but the balance/coordination issues are hard to accept. In physical therapy yesterday, he decided to go ahead and work on balance/coordination (they've already got a basline on me) to get an idea what I'm experiencing now, what it will be like when I do the next increase next week, and what it will be like when I adjust. I feel so worn out. It took me longer than usual to go thru the grocery store last night, I just couldn't focus. Although I thought my appetite was changing to being hungry all the time on Sunday, the past couple days I am back to no appetite. We shall see what next week brings. I know if I can't adjust, my Neurologist won't make me suffer, so that's a good thing!

Dispatch B)

Sounds like the side effects of Lithium.

Hi Dispatch,

Congrats for hanging in and giving your best effort to this med trial. You have my respect and admiration for juggling everything you do AND working hard to keep your balance with mood and personal interaction.

I know there are times I just feel like crawling into a cocoon and hoping things will be fixed when I crawl out.

Take good care...we're thinking about you!

:Yeah That: Labrat and BLUCKIE!!! :Icky: That is some nasty stuff.

:hiya: Oreo! Thanks for your good wishes and kind words/thoughts! You are ACE Lady! I too wish I could crawl into a cocoon & it all be fixed when I crawl out some days. I don't know how I'm doing this right now, but think faith and all that stuff is helping. I slept really bad last night. After physical therapy today I was knackered. I got a few things done, then I took a nap. I was comatose and didn't even hear my Husband come in from work. He woke me up an hour before my night meds....I slept about 4 hours. I'm doing ok with depression and have quite a few things coming up to look forward to, just hope the mind and body work together so I will follow thru on my plans.

Hey, I'm thinking about you too! Take great care!

Dispatch B)

Sounds like it's getting a little better. Hang in there these meds take time.
Aren't they fun?

Hi Dispatch! :D

Sounds like you have been through quite a bit with this new med. Take it one day at a time and I hope those side affects dis-ka-peer very soon! In the meanwhile tho... enjoy using the med change as the culprit for making you sillier than usual (and yes, I said that right!) and taking those naps! :ROFLMAO:

Hugs,
Cindy

:ROFLMAO: You crack me up Gel! Yeah Yeah...I'm actin' a dork because of my meds...good one...I'll keep those in mind when I slink off for a nap!

:hiya: Petunia! Yep, just love meds NOT! Today was a better day, took a nice nap after physical therapy. : lazy : Now, just waiting to see what Monday brings with the last increase.

But, glad to report no more seizures, so something is working which will blow my theory I am trying to get across to the docs about Neurofeedback versus meds. : g :

THANKS for all the good wishes!!

Dispatch B)

:D Happy to update as of today still no seizure activity. I did the final increase Monday. I am very tired, but not feeling so sick to my tummy. The balance & coordination stuff has remained about the same, but still in physical therapy for that, and hope that levels out as I completely adjust. Depression isn't bad. I would rate it as none (not even slight) for a few days now. WHOOP WHOOP!

The only problem I am having is I am so tired, but when I go to sleep I am having wierd dreams that will turn into nightmares if I don't wake myself up. Feel asleep on the couch last night, slept for a couple hours, then went to bed at about 2am, up again at about 4am due to these dreams. I didn't read that was a side effect of this med. Any suggestions and/or someone else who experienced this on this med? THANKS!

Dispatch B)

:hiya: Dispatch,

I am so happy to hear you have been seizure free! And being able to say the depression is "none" is awesome! Wonderful news! : party1 : I know this new med has been difficult for you to deal with the side affects but it seems they have been worth it, thus far.

Dreams and nightmares can be so difficult to handle. I only remember nightmares as I do not remember dreams at all. I have always attributed that to the meds I take, but perhaps it is because I filter them out subconscously, who knows... :lol: All I know is when I sleep, I sleep! Dead to the world!!! : lazy :

I hope this issue goes away soon so you can enjoy the positive results of the new medication. If this is not listed as a side affect, call your pharmacist or doctor to find out if this is normal or if it could be an affect due to interaction with any other medication you are taking. And don't forget, stress can cause alot of sleep issues.

Hugs,
Cindy

:Thanx: Gel for your suggestion to call the pharmacist or doc about inter reactions with my other seizure med. : th_idea : :Thanx: for your upbeat post! You really have a way with words!

Yepper, stress has kicked my behind these days...

Have a great one!

Dispatch B)

Dear Dipatch,

I'm hoping you are feeling better. I'm wondering if you doctor should do the increases more slowly, this would give your body more time to adjust. Everyone has a different reaction to drugs, and they are not listed in the PDR. If you are feeling worse, then maybe your doctor could cut you back to your previous dose, especially since you are feeling the effects so much. Some patients do better if the dose is increased more slowly, then increase after a couple weeks on the previous dose.

You could ask your doctor this, since she in increasing your medicine too fast. You may be able to tolerate the effects better if it is done more slowly. This is an option for you.

Keep in touch and let us know how you are doing.

Love,
Bonnie
:rolleyes:

:D HI Bonnie!

:Thanx: for your input. My Neuro bumped me back down to 300 mg twice a day. Didn't adjust like we had hoped at the higher dose. It was starting to get really awful, so now I think I'll even out better at this dose. Still no seizures, am still really tired, nightmares have decreased with more relaxation techniques and the decrease of Trileptal, and some situational depression going on, but it will all be ok in the end. I have some good things to look forward to, so that will help.

Take care!

Dispatch B)

Dispatch, I'm so glad it's working for you!
At least for the seizures. I really think the rest will get better in time.

Sounds like you winning the fight with the AED, they like to try and kick us down but we just need to show them who's boss once in a while. :rolleyes:

Trileptal worked great for me, I'm glad your finding the same.

:hiya: Petunia!

: boxing : I will win this one! Thanks for your good thoughts! I'm glad this med worked great for you too!

Dispatch B)

:hiya: UPDATE:

I took the big crash and burn on Trileptal and the Neuro discontinued it yesterday. Happy to say I still have not had a seizure, but sad to report the side effects were actually worse for me than having a seizure. Getting toxic off a med is not fun.

My Keppra has now been increased and I will do another increase in 2 weeks. I did not want to try another med. My Neuro is awesome, and she listens & accepts what I have to say. We do a bunch of talking, then make a decision together, so I am lucky.

Keppra has been onboard for many years with me, I have had fairly good success with it, so I wish I would have been willing to increase it a couple months ago instead of bring in a new med. :rolleyes:

Now...have to adjust to more Keppra and getting Trileptal out of my system...geesh. Oh, and I lost weight taking Trileptal. Not significant weight loss, but at least I didn't gain. Keppra has never caused me weight gain, but does cause emotional upset while I'm adjusting. Personally, I say time to try Neurofeedback. It has the potential to help me in multiple ways.

Dispatch B)

:Icky: I do not like Keppra at this high dose. I feel icky, and the emotional upset & agitation is awful...but no seizures....

B)

New Plan.... Don't you just hate it when you have to come up with a new plan yet again. Hang in there! Are there any other meds out there you can try?

I couln't do Keppra either.

E

Hi ya Petunia!

Did Keppra make you feel strange? When I first started it years ago, it really only made me extremely tired, but now that it is at a high dose, it has become a whole different ordeal.

I am not willing to try any more new meds. I am only having ocassional breakthru's, and after all of this, I would rather have an ocassional seizure than go thru this.

My new plan is pursuing Neurofeedback. I think I found a doc here that does it and need to make some more calls tomorrow. The docs office insurance lady said she was going to call my insurance company and get back with me.

Have a great one!

B)

Hey Dispatch :hiya:

I have been on Keppra for over a year now and I am wondering what types of feelings you are having. As you know from a previous discussion, the epileptologist wanted to raise my Keppra dosage but I told him I would prefer not to as I was already occassionally having psychotic episodes. I can differentiate and recognize it is the medication and deal with it as such, but as I told him that day if he were to increase the dosage I may not be able to recognize those feelings as a side affect of the medication and address it as such.

Wooohooo tho girlie.. no seizures!!! :coolthumb:

Hugs,
Cindy

:D Hey ya Gel!

Hope you are feeling good!

OOOPPPS...phone just rang...I'll get back with ya!

B)

:D Hi Ya Gel!

Whew...what I am meaning by "strange" is the excessive crying, total constant irritation, and I am spending loads of time really angry. I cry when I am really mad, sad, &/or frustrated, but it used to take alot to get me to the crying point...now it doesn't take much. This all started with the increase up to 1,375 twice a day, and it is now worse at 1,500 twice a day. I know I've got quite a bit going on in my personal life, but I believe the Keppra is causing the increased emotional upset. This stuff may not be "strange" to others reading it, but I feel it is strange for me to be like this. Then to add to it, the "Keppra Dreams" are really disturbing-not morbid-just disturbing-so my sleep is wacky & I am really tired which makes emotional upset worse for me...BUT...still no seizures! WHOOP WHOOP!

So, how are ya? Hope you are well and recovering great!

B)

Hello to all, and I hope those of you that are seizure free remain so. I have had to add another drug to the ones I already take.

It is an antipsychotic called Phenaphazine. The other name for it is Tripetal. I am taking 8mg at bedtime as I was having major anger & raging for any reason. Since adding back in, I have not had another episode of the rages. I hate admitting it's working :Icky:

I am taking a total of like five drugs every bedtime! :Tantrum: I guess I should feel better; I do in a way I'm not wasting energy :Tantrum: :Censored: :Really Mad: So I guess I'll keep taking the damned stuff!

Hugs for all.
Sincerely,
Bonnie

:D HI Bonnie...long time, no hear from ya. Hope you are doing ok. I was wondering about ya.

Trileptal and I did not get along. I was on it for a short time for seizure control. That med caused me bad emotional upset, amungst some other things. But, I didn't have any seizures on it. I am glad to hear it is working good for you.

Hang in there & keep us updated!

B)

Bonnie,

I had to go on Geodon for the same reason. It is a mood stabilizer. I hated adding another medication to my dwinding list, but it has worked!

I also taake mine at bedtime. It makes me sleepy.

Dear Dispatch,

It is Jan. 11th; how are doing now on the Kreppa? I hope you are feeling better than you described before :)

Sincerely,
Bonnie

:D HI Bonnie!

Glad you visited! I read in another post you are doing good! That is FANTASTIC! I am happy to hear your good news!

Thanks for asking about me. I'm doing ok. Actually, my Keppra has been decreased even more since I wasn't doing too swift on it. I am down to 1,000 mg twice a day, and I have had no seizures and am doing better emotionally on this dose. I am still having the "Keppra Dreams"-I think I always will. The being constantly tired from the med has leveled out which is great. I started Lyrica the other night for some other stuff going on and that med is also used for seizure control. I think I should be doing better this year with seizure control...let's all hope since Neurofeedback may not be a tangible option for me right now! As soon as it does become something I can do financially, I am going to do it and see if I can have the chance to get off meds-they are destroying my body.

Please take good care! I hope your new year started off great!

B)