what to do next? need thoughts

CDC funded page

Not a CDC funded Page

It is raining and not my favorite kind of weather.so I am feeling even more down. I saw my Dr. on Monday. We went over how I was doing on the three meds. Which are keppra 1500mg , trileptal 1800mg and lamictal 100mg per day. Given that when I increased the lamictal to 100mg am and pm I felt my heart racing and could not sleep I had to go back to 5o am and pm. We had hoped to remove trileptal and replace it with the lamictal yet this does not look possible. My body is soo sensitive to meds.So my Epileptologist asked me" what do you want to do, none of the drugs are really at theraputic but your body can not tolerate the many side affects?" Iknow she is probably feeling as fusturated as I am as we have tried almost everything. I know I pretty much get to decide the route to take at this point. So I am leaning toward going back to the trileptal and Keppra and try to up on the dose of the trileptal. And see if this works better this time.I feel kinda fusturated. I have been on 9 different drugs and notice my body is tolerating the newer drugs much less than the others I use to take but now can not take. So my goal is to get onto two drugs.My guestion is for those with simple partial and complex seizures who have refractory epilepsy, bilateral seizures and temporal lobe focus. Are there any out there who have all this andif so what kind of drugs are you on knowing we all react ot meds different. ?Also what would the point of me staying on 100 lamictal a day keppra 1500 and trileptal 2100 a day if I have about the same control on two drugs as on three drugs? Open to supportive feedback.Hope some are having sun though not too hot. send a bit this way!!

Comments

RE: what to do next? need thoughts

Submitted by grez-monkey on Wed, 2005-05-25 - 13:19

Cedar, I have been on lamictal since Sept 1997Â…and in November 2001, my epi found that the second medication of dilantin was knocking down the potency of lamictal, thus being the cause of why my complex partials increasing so greatly over the previous 3 years. The dilantin was immediately stopped and replaced with whatÂ’s call divalproex, which BTW is a extended-release of Depakote. The cp szs eventually halted in early 2003, but still no change with the simple partials. Then in the middle of last year, 2004, I went through whatÂ’s called a Â‘cross-overÂ’ being weaned off divalproex and starting keppra. But still no change with the sp szs, except with the new diet thing I started this past January, which is really working, along with staying on the two AEDs.

I do have some ideas and possibilities though, but no guarantees. Number one, if the one of those three meds is just eating up whatÂ’s in you money drawer, ask your neuro if you can just get off of it and save your money. Next thing, you said that you have only taken your meds twice a day, right? Mention what IÂ’m about to say to your doctor, because I heard about this information from a 25+ year experienced neuropsychologists. Instead of doing 2 per day [bid], could you try to lower the dosage levels and start taking the meds, three, four, or even if necessary, five times per day? There are average therapeutic and toxic levels of medications, but that doesnÂ’t mean that everyone is the same, and doesnÂ’t exclude those with way low, or way high levels. You yourself, may fit in the low therapeutic blood level. Something like 25 to 50 mgs of lamictal and/or keppra, three times or even four times per day. This may keep you from the bad side effects youÂ’re having [heart racing and unable to sleep], but to be just enough to control your seizures more effectively. Think of it like having two Â‘big-gulpsÂ’ of coffee or caffeine drink, one in the am, and another in the pm. YouÂ’re going to be wide-awake big-time, but it will eventually taper off over the next 12 hours, then WAM, another high dose of caffeine. Now imagine making a changeÂ…a medium-sized glass/cup of caffeine drink every 8 hours, or, smaller cup of caffeine drink every 6 hours. It should still be just enough to keep your body engine running, but without Â‘gunningÂ’ it and Â‘pealing out and burning up yourÂ…uh...tiresÂ’. Or enough fuel to move just you alone on a moped, instead of you on the moped, pulling a Mack truck with it behind you. Hope you understand what IÂ’m trying to describe.

As for the weather side of things this time of year, IÂ’m in central Texas [along with two other members, straws and Morning] and it has been hotter and dry than usual [mid-to-upper 90Â’s] for the past few days. But rain chances are in the forecast this Friday and holiday weekend. This just gave me another imaginary explanation. Instead of a huge hurricane and flooding waters, just an occasional shower to give it enough time for the rain to soak into the ground.

Let me and everyone else know how this turns out.

Bruce IJ

Cedar, I have been on lamictal since Sept 1997Â…and in November 2001, my epi found that the second medication of dilantin was knocking down the potency of lamictal, thus being the cause of why my complex partials increasing so greatly over the previous 3 years. The dilantin was immediately stopped and replaced with whatÂ’s call divalproex, which BTW is a extended-release of Depakote. The cp szs eventually halted in early 2003, but still no change with the simple partials. Then in the middle of last year, 2004, I went through whatÂ’s called a Â‘cross-overÂ’ being weaned off divalproex and starting keppra. But still no change with the sp szs, except with the new diet thing I started this past January, which is really working, along with staying on the two AEDs. I do have some ideas and possibilities though, but no guarantees. Number one, if the one of those three meds is just eating up whatÂ’s in you money drawer, ask your neuro if you can just get off of it and save your money. Next thing, you said that you have only taken your meds twice a day, right? Mention what IÂ’m about to say to your doctor, because I heard about this information from a 25+ year experienced neuropsychologists. Instead of doing 2 per day [bid], could you try to lower the dosage levels and start taking the meds, three, four, or even if necessary, five times per day? There are average therapeutic and toxic levels of medications, but that doesnÂ’t mean that everyone is the same, and doesnÂ’t exclude those with way low, or way high levels. You yourself, may fit in the low therapeutic blood level. Something like 25 to 50 mgs of lamictal and/or keppra, three times or even four times per day. This may keep you from the bad side effects youÂ’re having [heart racing and unable to sleep], but to be just enough to control your seizures more effectively. Think of it like having two Â‘big-gulpsÂ’ of coffee or caffeine drink, one in the am, and another in the pm. YouÂ’re going to be wide-awake big-time, but it will eventually taper off over the next 12 hours, then WAM, another high dose of caffeine. Now imagine making a changeÂ…a medium-sized glass/cup of caffeine drink every 8 hours, or, smaller cup of caffeine drink every 6 hours. It should still be just enough to keep your body engine running, but without Â‘gunningÂ’ it and Â‘pealing out and burning up yourÂ…uh...tiresÂ’. Or enough fuel to move just you alone on a moped, instead of you on the moped, pulling a Mack truck with it behind you. Hope you understand what IÂ’m trying to describe. As for the weather side of things this time of year, IÂ’m in central Texas [along with two other members, straws and Morning] and it has been hotter and dry than usual [mid-to-upper 90Â’s] for the past few days. But rain chances are in the forecast this Friday and holiday weekend. This just gave me another imaginary explanation. Instead of a huge hurricane and flooding waters, just an occasional shower to give it enough time for the rain to soak into the ground.Let me and everyone else know how this turns out.Bruce IJ

Cedar, I have been on lamictal since Sept 1997Â…and in November 2001, my epi found that the second medication of dilantin was knocking down the potency of lamictal, thus being the cause of why my complex partials increasing so greatly over the previous 3 years. The dilantin was immediately stopped and replaced with whatÂ’s call divalproex, which BTW is a extended-release of Depakote. The cp szs eventually halted in early 2003, but still no change with the simple partials. Then in the middle of last year, 2004, I went through whatÂ’s called a Â‘cross-overÂ’ being weaned off divalproex and starting keppra. But still no change with the sp szs, except with the new diet thing I started this past January, which is really working, along with staying on the two AEDs.

I do have some ideas and possibilities though, but no guarantees. Number one, if the one of those three meds is just eating up whatÂ’s in you money drawer, ask your neuro if you can just get off of it and save your money. Next thing, you said that you have only taken your meds twice a day, right? Mention what IÂ’m about to say to your doctor, because I heard about this information from a 25+ year experienced neuropsychologists. Instead of doing 2 per day [bid], could you try to lower the dosage levels and start taking the meds, three, four, or even if necessary, five times per day? There are average therapeutic and toxic levels of medications, but that doesnÂ’t mean that everyone is the same, and doesnÂ’t exclude those with way low, or way high levels. You yourself, may fit in the low therapeutic blood level. Something like 25 to 50 mgs of lamictal and/or keppra, three times or even four times per day. This may keep you from the bad side effects youÂ’re having [heart racing and unable to sleep], but to be just enough to control your seizures more effectively. Think of it like having two Â‘big-gulpsÂ’ of coffee or caffeine drink, one in the am, and another in the pm. YouÂ’re going to be wide-awake big-time, but it will eventually taper off over the next 12 hours, then WAM, another high dose of caffeine. Now imagine making a changeÂ…a medium-sized glass/cup of caffeine drink every 8 hours, or, smaller cup of caffeine drink every 6 hours. It should still be just enough to keep your body engine running, but without Â‘gunningÂ’ it and Â‘pealing out and burning up yourÂ…uh...tiresÂ’. Or enough fuel to move just you alone on a moped, instead of you on the moped, pulling a Mack truck with it behind you. Hope you understand what IÂ’m trying to describe.

As for the weather side of things this time of year, IÂ’m in central Texas [along with two other members, straws and Morning] and it has been hotter and dry than usual [mid-to-upper 90Â’s] for the past few days. But rain chances are in the forecast this Friday and holiday weekend. This just gave me another imaginary explanation. Instead of a huge hurricane and flooding waters, just an occasional shower to give it enough time for the rain to soak into the ground.

Let me and everyone else know how this turns out.

Bruce IJ

RE: RE: what to do next? need thoughts

Submitted by Cedar on Wed, 2005-05-25 - 14:40

thanks Bruce, I have tried to get my doctor to consider doing lamictal morethen two timesa day but feels not a good idea. I am taking trileptal 4 times a day and this seems to work. I agree what is therapuric level for one might not be for another. I will porbably go to kepra and trileptal but not sure yet. Thanks for your thoughts.

RE: RE: RE: what to do next? need thoughts

Submitted by pongosmommy on Wed, 2005-05-25 - 15:10

Sorry Cedar but I don't have any advice on the Meds. I have been taken off all AED'S. We are trying the alternative approach. It is too bad that your doc doesn't want you to take the meds in smaller doses more often. I say this because as a diabetic, I know that smaller doses at shorter intervals keep me from huge rises and drops in my sugar and insulin levels. I have been able to stop my insulin shots by eating smaller amounts more often. I know comparing my diabetes to your seizures is like comparing apples to oranges...but it is the same physiological principle. keeping Homeostaatis in the body...aka keeping on an even keel.oh and the Sunshine here in California? Oh no, I am keeping that if you don't mind. We have had ENOUGH rain for a while.Take care and good luck,Dayna