mastiffmom
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I'm new here. I'm looking for some advice on choosing a new medication. I know everyone reacts differently to medications, but hearing other people's experiences can be helpful. Especially since I am completely overwhelmed right now. There is SO much information out there and trying to weed through it and make an educated decision feels impossible.
First, some background on me and my current situation. I have been suffering from seizures for the past 20 years (I'm in my early 40s). I was diagnosed about 15 years ago following 3 secondarily generalized seizures in one day. I was put on Dilantin which made me extremely tired, groggy, depressed and generally miserable, although it did control my seizures. After a year and a half I switched to Trileptal. I felt so much better until I developed low sodium and had another round of back to back secondarily generalized seizures. I was put back on Dilantin as they needed to give it intravenously to stop the seizures. Miserable again for a few months. On to Tegretol next. It took a while, and another grand mal, to get my Tegretol level right, but for the next 7 years I did not have another grand mal (I wasn't really aware of my partials at that point, so don't know if I was having any). Circumstances in my life (unrelated to the seizures) created an extreme amount of stress, and following a sleep deprived night, I had a grand mal at work. I then came of the Tegretol and went on Keppra, but I kept having 'blanking spells'. I would lose my train of thought and bearings for a few seconds (sometimes I would not even know where I was for a moment), many many times a day. The thought was these were seizures, and I was moody on the Keppra and did not want to increase the dose, so on to Lamictal I went. At my initial dose of Lamictal (200mg / day), I did not feel 'right', so the dose slowly increased to 325 mg / day. A few weeks ago, I had a day, out of the blue where I suddenly began having the 'blanking spells' (no more stress or less sleep than normal). The next day I was fine again. Saw the neuro yesterday, and I initially he wanted to go up 25 mg. Then, I mentioned that since I went on Lamictal I have been getting more and more easily irritated, short tempered and even angry with my kids, my husband, at work, everywhere. (My husband has told me my personality has changed since I have been on Lamictal.) He told me that irritability is a known side effect of Lamictal and if it is affecting my quality of life I need to come off it. I am really worried about the effect it is having on my young kids (not to mention my marriage), so I definitely want to switch. It was probably even worse than I thought as my husband seemed thrilled when I told him I was going to switch.
Now my dilemma. He told me my choices are Zonegran, Depakote or Tegretol. He's willing to put me back on Tegretol as he says one grand mal after 7 years did not warrant switching meds (I had a different neuro at that time. I really like this one.). Tegretol seemed to work well and it's side effects were manageable, though I was more tired and had more trouble thinking than I did on Lamictal. Also, over time I had to increase to a large dose (1400 mg) to maintain a thereputic level both in blood count and seizure control (I'm an 135 lb woman). I was told the reason was my liver got better and better at metabolizing it. Plus, I didn't like the long term bone density issues (my mom has pre-osteoporosis). I have heard horror stories of Depakote, so I'd prefer not to go there. Zonegran is one I don't know a lot about. I'd try Zonegran to see if it is any better than Tegretol, but I have heard mention of 'mood issues' and difficulty thinking, both of which terrify me.
The side effect I want to avoid more than anything is irritability, anger, and also depression. I also have to be able to think clearly with a decent memory (or at least as well as I can while on an AED, nothing will ever be perfectly clear), as I have a very analytical job. I'd also prefer not to be overly tired. I am tired now, but I am also not getting enough sleep (mom of 2 young kids, full time job, etc). Since I know I probably won't find an AED without at least some of those side effects that controls my seizures, I am trying to figure out which is the best option.
So... Does anyone have any thoughts or experiences that might help me choose between Tegretol and Zonegran?
First, some background on me and my current situation. I have been suffering from seizures for the past 20 years (I'm in my early 40s). I was diagnosed about 15 years ago following 3 secondarily generalized seizures in one day. I was put on Dilantin which made me extremely tired, groggy, depressed and generally miserable, although it did control my seizures. After a year and a half I switched to Trileptal. I felt so much better until I developed low sodium and had another round of back to back secondarily generalized seizures. I was put back on Dilantin as they needed to give it intravenously to stop the seizures. Miserable again for a few months. On to Tegretol next. It took a while, and another grand mal, to get my Tegretol level right, but for the next 7 years I did not have another grand mal (I wasn't really aware of my partials at that point, so don't know if I was having any). Circumstances in my life (unrelated to the seizures) created an extreme amount of stress, and following a sleep deprived night, I had a grand mal at work. I then came of the Tegretol and went on Keppra, but I kept having 'blanking spells'. I would lose my train of thought and bearings for a few seconds (sometimes I would not even know where I was for a moment), many many times a day. The thought was these were seizures, and I was moody on the Keppra and did not want to increase the dose, so on to Lamictal I went. At my initial dose of Lamictal (200mg / day), I did not feel 'right', so the dose slowly increased to 325 mg / day. A few weeks ago, I had a day, out of the blue where I suddenly began having the 'blanking spells' (no more stress or less sleep than normal). The next day I was fine again. Saw the neuro yesterday, and I initially he wanted to go up 25 mg. Then, I mentioned that since I went on Lamictal I have been getting more and more easily irritated, short tempered and even angry with my kids, my husband, at work, everywhere. (My husband has told me my personality has changed since I have been on Lamictal.) He told me that irritability is a known side effect of Lamictal and if it is affecting my quality of life I need to come off it. I am really worried about the effect it is having on my young kids (not to mention my marriage), so I definitely want to switch. It was probably even worse than I thought as my husband seemed thrilled when I told him I was going to switch.
Now my dilemma. He told me my choices are Zonegran, Depakote or Tegretol. He's willing to put me back on Tegretol as he says one grand mal after 7 years did not warrant switching meds (I had a different neuro at that time. I really like this one.). Tegretol seemed to work well and it's side effects were manageable, though I was more tired and had more trouble thinking than I did on Lamictal. Also, over time I had to increase to a large dose (1400 mg) to maintain a thereputic level both in blood count and seizure control (I'm an 135 lb woman). I was told the reason was my liver got better and better at metabolizing it. Plus, I didn't like the long term bone density issues (my mom has pre-osteoporosis). I have heard horror stories of Depakote, so I'd prefer not to go there. Zonegran is one I don't know a lot about. I'd try Zonegran to see if it is any better than Tegretol, but I have heard mention of 'mood issues' and difficulty thinking, both of which terrify me.
The side effect I want to avoid more than anything is irritability, anger, and also depression. I also have to be able to think clearly with a decent memory (or at least as well as I can while on an AED, nothing will ever be perfectly clear), as I have a very analytical job. I'd also prefer not to be overly tired. I am tired now, but I am also not getting enough sleep (mom of 2 young kids, full time job, etc). Since I know I probably won't find an AED without at least some of those side effects that controls my seizures, I am trying to figure out which is the best option.
So... Does anyone have any thoughts or experiences that might help me choose between Tegretol and Zonegran?
