I have seizure disorder, CPS, Epilepsy whatever term is suitable. I had my first at 17 and had an MRI and the results were inconclusive and the same again at 18. Then I began having severe migraines around 21 when I met my husband. For five years I went from doctor to doctor, in addition to having increasing sleeping problems (which I have had my entire life, but not that bad). I went on Lunesta, which lost its affect after about a year and then was on Ambien for about three.
My internist was not thrilled due to me being so young. I thought maybe it was birth control pills causing my migraines and went off those. Then I went to an ENT and was on Allergra. I had good and bad days. My internist (who is amazing, but very conservative on his views of medication) finally sent me to a neurologist the summer I turned 27. My neurologist is not only academically and medically at the top of his game, but embodies all that a doctor should. Yet, even he put me on various pain pills and others, among them a Menstrual migraine pill. To no avail after the end of summer he said I am "incureable". I told him I was going to a migraine specialist who recommended I go off everything to start with. That day I had my third and fourth seizure and found out I had epilepsy. My paternal grandmother, who is not alive, had epilepsy and was on phenobarbital.
He asked why i hadnt told him and I saw no reason not thinking it is genetic or it has to do with migraines. I had two that night, it was Septmeber of 2007. I was in graduate school and in my last semester before beginning my thesis (which I am currently doing) and had to drop out. I was so out of it and being as small as I am dropped from 115 lbs to 105. I could barely walk and was still eating the same. I was put on potassium pills and topomax which made me even worse and slur my speech and walk funny. I was switched slowly to Depakote and it was hard the first weeks adjusting because I threw up alot but I took to it and am on 1000 mg of it.
I also went to the UCLA center for sleeping disorders and was put on Klonopins. Nearing the end of my thesis, my husband and I are thinking of starting a family next year, G-D Willing. I have spoken with my neurologist and how he thinks I have made an amazing recovery. Going off my current medication is out of the question and we had explored surrogacy but my neurologist had said that me being on what I am is no different than carrying the baby. However, my internist says its risky and my OB said I needed to go to a high risk doctor as well as her. She told me to go off the Klonopins and was not very supportive. I live in LA and wanted to know if there are any women who have been on either or one of these medications throughout their pregnancies and not had complications. Are there special epileptic OB's? Please let me know..I feel that only my neurologist knows where I am coming from and that risking my life is not an option I just wanted some reassurance. Any ideas.. Treatments..
My internist was not thrilled due to me being so young. I thought maybe it was birth control pills causing my migraines and went off those. Then I went to an ENT and was on Allergra. I had good and bad days. My internist (who is amazing, but very conservative on his views of medication) finally sent me to a neurologist the summer I turned 27. My neurologist is not only academically and medically at the top of his game, but embodies all that a doctor should. Yet, even he put me on various pain pills and others, among them a Menstrual migraine pill. To no avail after the end of summer he said I am "incureable". I told him I was going to a migraine specialist who recommended I go off everything to start with. That day I had my third and fourth seizure and found out I had epilepsy. My paternal grandmother, who is not alive, had epilepsy and was on phenobarbital.
He asked why i hadnt told him and I saw no reason not thinking it is genetic or it has to do with migraines. I had two that night, it was Septmeber of 2007. I was in graduate school and in my last semester before beginning my thesis (which I am currently doing) and had to drop out. I was so out of it and being as small as I am dropped from 115 lbs to 105. I could barely walk and was still eating the same. I was put on potassium pills and topomax which made me even worse and slur my speech and walk funny. I was switched slowly to Depakote and it was hard the first weeks adjusting because I threw up alot but I took to it and am on 1000 mg of it.
I also went to the UCLA center for sleeping disorders and was put on Klonopins. Nearing the end of my thesis, my husband and I are thinking of starting a family next year, G-D Willing. I have spoken with my neurologist and how he thinks I have made an amazing recovery. Going off my current medication is out of the question and we had explored surrogacy but my neurologist had said that me being on what I am is no different than carrying the baby. However, my internist says its risky and my OB said I needed to go to a high risk doctor as well as her. She told me to go off the Klonopins and was not very supportive. I live in LA and wanted to know if there are any women who have been on either or one of these medications throughout their pregnancies and not had complications. Are there special epileptic OB's? Please let me know..I feel that only my neurologist knows where I am coming from and that risking my life is not an option I just wanted some reassurance. Any ideas.. Treatments..
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