Hi Folks,
I have been taking mysoline 1000 mg. along with Diamox 1000 mg. a day for yrs. I have been feeling exhausted, having clusters of sz., not to mention my coordination is very bad especially when I walk into the doorway.
Last wk. I had a blood test done on the mysoline which breaks down into phenobarbital and the drug level was at 70 when it should be between 30 and 40.
My Epi called today and cut me back to 750 mg. of mysoline a day for 2 wks. and then they are going to do another blood test to check the drug level. My Epi also wants to put me on Keppra but I don't feel good about taking that AED because it can make a person moody and emotional not to mention the lawsuits going on with the drug.
What I don't understand is how can my mysoline level go up after being on the drug for over 30 yrs. but it's not toxic. If anyone with any info. I want you to know I greatly appreciate it and May God Bless All of You!

Sue

Hey Sue.

I wouldn't really be extremely worried about Keppra mainly because it varies (as far as reactions to it) by person. It took me about two months to properly adjust to it (a few weeks of randomly laughing or crying) but now I'm doing better. Granted, it does nothing for my seizures that originate within my parietal (not partial, Julie - *giggles*) lobe.

I believe they are going to take me off of it soon due to lack of seizure control, but I am one of those 'special' people (my mom wasn't kidding when she called me special) who simply do not react well with any AED. My larger seizures (drops) have nearly vanished and I do believe the Keppra is what is controlling them, it is my smaller somasenasomething (I don't feel like spelling it right, right now) seizures that aren't under control.

While Keppra is famous for causing some mood disturbances, from my understanding per my epileptologist - it does the least harm to your body (physically).

Anything is worth a shot if it brings you comfort, is the way I look at it. I hate being a labrat but try to accept it has to be done. Maybe I'm saving a rat!!

I do worry that your levels were so high considering you've been taking this so long. Do they frequently test your levels?

I was trying to search the net for anyone else who may have had a jump in levels after prolonged usage but I'm having no such luck. I did find this regarding the Mysoline:

I know it's not much, but it's somethin'! I'll keep hunting.

There are so many things that can effect levels. The most important thing is getting those toxic levels down! I'm sure they are taking good care of you.

Can't tell you much about Keppra but Miz Ellie is an expert up there

There are two major reasons for a sudden blood level change.

1) a change in hepatic functions (liver)-- due to damage, infection etc.

2) something has happened to your dosage form..the company who makes it
made a mistake, and that defective product was released, and you are using it.

Diamox can cause problems with primidone-- are you using the Sequels?
So since the Diamox does the "reverse", perhaps, the Diamox is defective?
Before it might have been reducing your levels, and now there has been a change and it is not working that way? Also Diamox is capable of changing liver function and you don't mention liver tests. Did you have them?

http://www.rxlist.com/cgi/generic4/diamox_ad.htm

There seems to be a marked increase in drug company manufacturing errors, in the past 10 yrs. Some well known brand name companies have had issues...
Schering and GSK especially.

Some doctors titrate up with Keppra, starting slowly. This would be an option for you if you decide to try it.

Hi Folks,
Thank you so much for all the info. on the mysoline, diamox, and keppra. I have blood tests done about every 3-4 months my Dr. didn't order a liver check with this blood test but I will be sure to request that one is done in 2 wks. along with a drug level check and complete blood count.
What concerns me the most about going on keppra is that I have RTLE and as you know the RTL is where a person shows more emotions, so I ask myself if I do try the keppra will this cause me to be more emotional and sensitive. I'm also concerned that if I do go on keppra and it bothers me emotionally that my employer (public school) will fire me from my job. I've been written up once already because I had brain surgery and I was out of work to recover for 3 wks. Drs. orders, the school complained about my absence from work even though I gave them a note from my Dr. Thanks for your time and help May God Bless All of You!

Sue

Hi Sue,

I have been taking Keppra for about 5-6 years now and have been taking 750mg/2x day for most of that period. It is not my primary, as I also take Tegretol XR and have been taking it for almost 20 years. I did have one period of being off of the Tegretol, just after switching to XR, as it was causing serious toxic effects. However, I tried Neurotin and Trileptal and neither performed very well, so I switched back to Tegretol XR and modified the way I take my dosage(3 times a day, instead of 2) and that fixed my toxic affect problem. Once back on Tegretol XR, I began taking the Keppra, as a last ditch effort to control my seizures, prior to considering surgery.

I had surgery in April of last year and have been seizure free since, Praise the Lord !

I have been able to decrease my Tegretol dosage to 1200mg a day, but still take 1500mg of Keppra a day. I have always been a liitle emotional for a guy, but have not noticed that the Keppra made me any more emotional or irritable than I was prior to taking it. I would suggest taking it slow on the dosage and see how it goes. It seems that a normal dosage for mono-therapy is about 2000-3000mg a day, maybe more. Since you will be taking it as an add on, you should be able to take substantially less. I think your doctor is likely to start you at 250 or 500 mg and go up from there. Best of luck, if you decide to give it a try.

God bless,

Barry

Phil 4:6 "Do not be anxious about anything, but in everything, by prayerr and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard you heart and mind in Christ Jesus"

Hi Barry,
Thanks for all the info. as well as the Lords words I greatly appreciate it. I used to take tegretol and then I went to the xr and was doing well until yrs. later when I broke out with a rash and became allergic to the tegretol after taking it for a long time.
I'm happy to hear that your surgery stopped your sz. I used to live in PA. just outside of Harrisburg when I went to a boarding school back in the late 1970's. Here's wishing you well and May God Bless You!

Sue