It's been 17 years

Mimi88

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Hi All,
I started down the seizure road when I was 27. I remember my first which was more like an aura- Deja vu with a bad smell. Weird. I continued to have the Deja vu experiences for quite awhile. I always tried to concentrate on them to figure out what they were. One night, I felt one coming on. I was in bed and decided to ignore it. Next thing I knew; I woke up in an ambulance on the way to the hospital after scaring my family by having a grand mal. Lucky me, I was in bed! Several months of testing (no obvious cause for me to have seizures) and medication selection and me ignoring doctor's orders (I had another seizure on the tennis court), I settled in on 300 mg of tegretol twice a day. Now I take the generic carbatrol. My seizures are completely controlled and have been for 16 years. My original neurologist became a world famous brain expert and I just went to my regular GP for prescription refills until my last physical. My white count has been falling slowly for the last three years which is a side effect of the tegretol/carbatrol. I was referred to a new neurologist who told me I needed to switch meds. She has picked Lamictal xr after dismissing most of the others for one reason or another. I am not looking forward to the switch: no driving and new side effects. Since it has been a long time since I had any tests, I just had an MRI w & w/o contrast and I get to have a sleep deprived EEG with photic stimulation and hyperventilation. Oh joy! Well, that's my story. Happy to meet all of you. :hello::hello:
 
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Hi Mimi! Welcome to CWE

16 years seizure free! woop woop! Its a shame that they cant do something to bring the white count up since you know that the medication and dose you are on is working. I hope that the med switch goes well without to many ill effects. Our daughter takes Lamictal and has done well on it. No side effects that we or she notice. Shes still on a baby dose of just 50mg twice daily, slowly ramping up. Saturday she starts 50mg in the morning and 75mg at night.
 

Nakamova

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Hi Mimi88, welcome to CWE!

I'm currently on Lamotrigine (generic Lamictal), the non-extended-release variety, and it seems to work okay for me. But ever since I went on AED meds 13 years ago, my WBC and RBC have been below the standard range. That's still the case with the Lamictal, so you might want to be extra-sure that making the switch will be worth it. Any chance you could first try backing off the Carbatrol dose slightly to see if your WBC improves and you can maintain seizure control?

Best,
Nakamova
 
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I agree that you should be extra sure that you have to change especially when they have worked so well for so long.
There is nothing worse than going through all those side effects each time you start new meds.
I started on anti epileptic drugs (keppra and tegretol) two years ago and my bloods have gone haywire in that short time.I'm only 35 and my blood work is so bad that they thought I had pernicious anemia(usually for 60yrs plus).my iron is too low,my b12 is non-existent,no matter what they try they can't sort it out.god only knows what else these meds are doing to my insides.
Best of luck
 

Mimi88

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Thank you guys I will talk more with my neurologist before making this cursed switch. I got the MRI results back.....normal brain. So I guess that's good.
 
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