I have started on Topomax 4 weeks ago. It is the 6th medicine I have taken in 8 months as I have been allergic, or could not take the side effects. This one I like. Like all the others, they have started me out on the lowest dose, and plan to increase, if the seizures start to come back. As usual about the third week in I have started having seizures, however, they are very small, and maybe a couple a day. At this point, I am not wanting to tell my doctor, or wanting to increase. I would like to see how this goes. After my experience with Keppra, I am beginning to think that having a few seizures might be ok, rather than take so much medication that I feel like a zombie. Somebody here said to look at quality of life, and that is what I am thinking about. I was having 20 to 30 a day, and could barley get out of bed. I am not opposed to increasing if things get that bad, but I feel okay right now-not back to where I was before all this started, but better. Any advice?
to increase meds or not
- Thread starter bazpa
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epileric
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It might have been me that said look at the quality of life.
For what you're doing now I"d ask the neurologist if you do increase the dosage & the side-effects increase can you drop back to your present dosage again & decide what to do based on his answer.
I have found that it is common when an AED starts working at first that the seizures eventually come back & get more intense/frequent if the dosage is not upped though. Just my experience though you may want to wait & see if you have a need to up first.
For what you're doing now I"d ask the neurologist if you do increase the dosage & the side-effects increase can you drop back to your present dosage again & decide what to do based on his answer.
I have found that it is common when an AED starts working at first that the seizures eventually come back & get more intense/frequent if the dosage is not upped though. Just my experience though you may want to wait & see if you have a need to up first.
Endless
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Bazpa,
Everybody has different healthcare goals. Yours is a balance between seizures and meds, and you are willing to have some seizures every day to avoid over-medication. Mine is to have things under control enough to have regular attendance at a job, even if that requires more meds than I'd like to be taking.
I'd still tell your doctor that you are having a couple of seizures a day, and your desire not to take a higher dose of meds. If he still wants to increase you, ask him to explain the reasons why so that you understand them. Then you can make an informed decision.
Most neurologists like to have a patient completely seizure free. Anything less than that and they don't think the seizures are under control. That's because sometimes, if seizures aren't completely gone, they have a nasty habit of getting worse over time. And then there's no turning back the clock. Also, seizures over a prolonged period of time can permanently affect your brain, causing brain atrophy (much less likely with simple partials), memory loss, and a whole host of other things.
I understand you not wanting to take more Topamax, though. It stuffed my head full of cotton, stripped me of a good portion of my memory, and made everything taste like aluminum foil. The reason you are not experiencing much of that might be a low dosage level. But not necessarily. You might be okay at a higher dose. Lots of people are.
Talk to your doc and see what he says. Will you let us know how it all turns out?
Everybody has different healthcare goals. Yours is a balance between seizures and meds, and you are willing to have some seizures every day to avoid over-medication. Mine is to have things under control enough to have regular attendance at a job, even if that requires more meds than I'd like to be taking.
I'd still tell your doctor that you are having a couple of seizures a day, and your desire not to take a higher dose of meds. If he still wants to increase you, ask him to explain the reasons why so that you understand them. Then you can make an informed decision.
Most neurologists like to have a patient completely seizure free. Anything less than that and they don't think the seizures are under control. That's because sometimes, if seizures aren't completely gone, they have a nasty habit of getting worse over time. And then there's no turning back the clock. Also, seizures over a prolonged period of time can permanently affect your brain, causing brain atrophy (much less likely with simple partials), memory loss, and a whole host of other things.
I understand you not wanting to take more Topamax, though. It stuffed my head full of cotton, stripped me of a good portion of my memory, and made everything taste like aluminum foil. The reason you are not experiencing much of that might be a low dosage level. But not necessarily. You might be okay at a higher dose. Lots of people are.
Talk to your doc and see what he says. Will you let us know how it all turns out?
I like it a lot better than Keppra-that was horrible for me. I do work full time as I own a business, and could not even think straight on the Keppra, and that is what I am afraid of. I on the other hand do not want brain damage. I have has many 20-30 a day for almost 4 years, before I was diagnosed. Doctors just kept telling me I was depressed, and hormonal. Funny my hormone levels were fine but they insisted I take estrogen for the night sweats-they did not work! A car drive with law enforcement got my diagnosis! Did anybody else have terrible night sweats! They went away almost immediately after starting meds. I will increase if I need to, but I just don't want to have another Keppra nightmare. My main side effect from topomax is concentration (which could be the seizure thing), and I cannot sleep much, but hey I slept a ton in the last 4 years!
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I so relate. lol..... my first neurologist told me my problem was perimenopause. Well %$#*& to that! Even I knew that wasn't a good guess.
I quickly found a second neurologist, who I would say was equally as useless except he guessed possible seizures and sent me to an epi (seizure specialist). The epi was the third neurologist, and he is extremely good. I still see him for epilepsy. Add in a fourth neurologist who I'm seeing for another neurological condition, and I'm neurologist-ed out to the max.
Raspberries to doctors who think women are just hormonal and hysterical. Talk about discriminatory.
I quickly found a second neurologist, who I would say was equally as useless except he guessed possible seizures and sent me to an epi (seizure specialist). The epi was the third neurologist, and he is extremely good. I still see him for epilepsy. Add in a fourth neurologist who I'm seeing for another neurological condition, and I'm neurologist-ed out to the max.
Raspberries to doctors who think women are just hormonal and hysterical. Talk about discriminatory.
Have you tried Lamictal? I have taken many drugs-virtually All of which had undesirable side-effects. I can tell you that Lamictal/Lamotrigine(generic), has Very Limited side-effects- i am Not drowsy, nor do I have any weight gain(depakote) or mood swings(dilantin and tegretol). You may want to ask your doc about it.
I did try lamictal, but had hives so bad, chest pains ect-thought I was gonna die! Keppra gave me hives too, so they had me taking a ton of benedryl to see if I would adapt to it. I would get into bed at night and it felt like my skin was crawling. I itched all the time. As long as I didn't miss a dose of benadryl I kept the hives away, but still had the rash for 3 months. I am pretty sure they could use itching as a war-fare strategy to get info. It begins to drive a person nuts!! I am so glad I am not dealing with that anymore!
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bazpa, too much estrogen can actually cause seizures, so I'm glad you're not still taking it! With the Topomax, I agree with the others -- keep your neurologist in the loop, even if it's just to tell him that you want to wait a bit before making a decision about upping the dose, and that the potential side effects are a big concern.