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  • Pamela posted an update 4 years ago

    Post op this time now 5 weeks, no seizure this time with surgery, this time left shoulder, also got an infection in my left back molar 2 days ago 101.5 temp and was afraid that was going to trigger generalized seizure , doc prescribed antibiotic and brought down temp quickly much to my relief. I lost my funding for my Topamax name brand meds in the middle of Dec without any notice and started seizing on the generic constantly within an hour of taking it ( partial seizures ) I was on the drug assistance program and when I called to find out when I needed to recertify the person I was talking to asked me if I was on Medicare D and I said yes ( I am always truthful , that person without asking any other question stopped my coverage. She didn’t bother asking around how I was on the program , I had qualified for it in spite of being on Medicare part D because the medication is so expensive. So for the next month I seized and I fell off my bike one day while I was attempting to get to a meeting for the planning committee for the Marathon of the Treasure Coast of which I was a volunteer. I was turning left off of US1 and when I am problem solving that is when I have the partial seizures as simple as that , it can be turning my bike, or getting up from a table and figuring out where to put a chair or how to punctuate a sentence simple problem solving so taking out the garbage. Just going from sitting to standing. It was a nightmare I was dizzy and confused all of the time and my friends were very worried about me. Finally my neurologist said ‘I have this new sample for you to try Trokendi XR and it worked , and he had samples for me for about a month or so and then I got a letter from Medicaid extra help and they said ‘ you know when you were hospitalized in August , well you qualified for share of costs that month, so that made you immediately elligible for Medicare extra help on your Part D , so I got a subsidy and with that my co payments for my seizure med was paid for and I could afford my seizure medication , the co payment for the Trokendi then was 6.50 for each Script instead of $300 a month . Big sigh of relief. a few days later the people from Topamax called and said I was eligible for the drug assistance program, I said I always was , I do not know why you cut me off cold turkey off my medication you could have caused me to get killed . I am staying on the Trokendi Xr , I take it once a day instead of 2 doses. I am more even and I have not had any break through seizures since I started it in January. I should get the extra help again with medicaid in January since again I was hospitalized this year and met my share of costs . What a crazy year this has been.
    Big hugs.
    pj