My daughter has epilepsy, doctors don't seem to truly listen to her symptoms. We had a great dr but she retired. Since then we seen at least 1/2 dozen each saying that's the wrong meds try this try that. The area affected is around frontal lobe. She has absence, drop, gram mal. In my opinion they just keep changing patterns. The one medicine that has always seemed to help is lamictal. She's on700 mg of lamictal ( name brand ) kepra a low dose and now Trokendi xr samples 200 mg because our… read more
I'm sorry to hear about your daughter's struggles . If you feel your Dr. Isn't listening to you about your Daughters situation, you need to find a new Dr. If possible , try and find an Epileptologist ( they are neurologists who specialize with people who have epilepsy ).. A couple of things you can do is, get a hold of the Epilepsy Foundation , find out if they know of any Epileptologists near or around you. Another thing you may want to try is , get a hold the of the University College hospital. There are many University hospitals that also have Epileptologist. If you can't find an Epileptologist , at least try and find a better respected neurologist.
Now about the meds. It's a little harder. I say this, because everyone's body chemistry is different. The meds that I have had good or bad experience with, someone else may think differently. So if your daughter was having strong side effect, someone else could be having moderate or mild side effects. But from what you mention above , her body has like a high tolerance for the meds. Once her system gets use to meds , they don't ( the meds )work as well. The Dr. needs to first try and up the medication dosage levels. At least until it's no long safe upping the doses. Then if that doesn't work they should start looking for a different. Medication.
Keep in mind epilepsy isn't a easy lifestyle to live. We all have to learn and cope with many struggles. If she does come close to living a normal life she will one be in the 1% group. They are the ones who can live near a normal life , on low dose of meds, can drive and been seizure free more and beyond a year. Many of us are coping. There are many who are still lost. most of us can't drive. But we are finding ways to get around when we have to. We have to go by someone's or a transportation service companies schedule . Many of us may bike instead. But we are find one way or another to get thru life.
Hope this helped hope find a better Dr for her and wish her a seizure free day.
I am on Lamictal Brand and Tegreto; Brand ever since started taking that I been sz free 15 yrs and will remain on that rest of life and Brand is different than generic don't let no one tell you different even my dr says it but pharmis wont tell the truth he say, I will
What you explained about the doctors your daughter sees, is exactly what i go through. my nurse practioner once said " i know you're pretending". the biggest thing she has forgotten is that i am seeing a different doctor now, comparing to when i first met the practiconer. She is opposite from when i first met her. The best ones who understand are the ones who dont' talk ( i often have too much difficulty with explaining )
I take Lamictal 200 Brand name along with Tegretol Brand 400 I been taking these 15 yrs and since taking these I been15 yrs sz free, a pharmist tried to get me to take generic and said its the same, I almost said ok But instead went home called my dr told him and he said No generic is different than brand.He called the pharmit never give me generic that's why I wrote Brand on the scrip
Both Trokendi XR and Quedexy XR are both extended release topimorate, also known as Topomax brand name. Neurologists favor extended release versions of medications as you have better control over your seizures. My neurologist wants me on extended release lamictal and I can't afford either regular or extended of that and insurance won't cover extended release of generic just regular lamotrigine. So I hear you. Like your baby, I have had pretty much all those types at various points in life. Now back to generalized with temporal lobe , and maybe if I was on brand name it would work better. Doc still wants to add more meds.
But with my doc, we talked it over once and he had me spacing out the generic lamotrigine over the day, so three times per day so it would work more like extended release, and I just kept my times scheduled on my Timex watch with three alarms. So I'm thinking, if your doctor is insistent on brand names only , and if the insurance will cover a brand name but not an extended release version (price is always way higher for XR) then you might want to see if he can space the timing of the meds out like mine has. And go for Topomax ,instead of quedexy or Trokendi. I hope this wasn't too confusing. Maybe helps. Good Luck. :)
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