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Life, Liberty and the right to choose.
Mon, 07/19/2010 - 15:03lHI,
My name is Raquel Santiago, i am presdient of Disabled Students Association at San Francisco State University, when i was 16 i had my first seizure and was subsequently dx's with epilepsy at 17. Five years ago i was also dx's with Fibromyalgia and COPD, so i pretty much have 3 verified diseases ruining my life. I average about 1 seizure a week but sometimes can go months without one. Recently i have had three ER Visits for dilantin toxicity and had to be pulled off of it by my new neurologist Dr. King-Stephens who is supposedly the best in the field. He pulled me off the dilantin but kept me on 3000 MG per day of Keppra 1500 in AM and 1500 in PM and 250 mg Lamictral n am and 250 in PM. But he also had me admitted to hospital for an EEG. I was admitted on Tuesday July 12th and now its Monday July 19th. While i have been her he has had me do sleep deprivation and has taken me off all anti-seizure drugs yet i have had no seizures while i have been here. Only yesterday did all seizure meds stop totally. This morning we had a conversation where i wanted to go home since i have not been allowed to leave my room at all while this is going on, and he told me that if i dont have a seizure by wednesday then i can go home and that there is only a 2 percent chane that i actually do epilepsy since i havent had a seizure during this time and that if my seizures are stress induced its not epilepsy and that i should see a psychiatrist about stress reduction.
Here is where my anger kicks in, my entire life i have had seizures and now just because i dont have one at his beck and call he is going to throw out there that i dont have epilepsy lwhere other witnessed have outright told me i had grand mal seizures. I cannot in good faith go on just his word and this one instance of no seizures that i dont have epilepsy, i would go back to my old neurologist Dr. Jay at San Francisco General if that ER doctor had not tried to kill me. I went to their ER last month and was told my dilantin level was 00 when in actuality it was 55 and they gave me a boost of another 500 MG so they discharged me in good health and i could barely walk or talk, it took 6 police officers to get me back home and next morning my IHSS Care Provider called an ambulance and i was brought here to California Pacific Medical Center where i was admitted for dilantin toxicity of 65 and almost died. I was then discharged from CPMC a few days after that and readmitted a week later for dilantin Toxicity again but lower this time as in its low 30's but still high enough to cause me problems. So today i have started documenting what is going on whenever i have a spasm that cannot be controlled and have asked for letters from all witness to talk to Dr. King-Stepehns and if that doesnt work and he tries to take me off any of my anti-seziure drugs i will fire him and find a neurologist that i can work with. I wonder if its because i am Transgender, Male to Female that he is doing this i dont know but all i know is that i am very sick and that over the years it has gotten wose i dread turning 30 lol because i feel like i am just getting worse and i feel that something is eating me from the inside out and if something isnt done and soon then i will make my own choice of how and IF to continue living this life which totally frigging sucks.
Re: Life, Liberty and the right to choose.
Submitted by 3Hours2Live on Thu, 2010-07-22 - 04:08
Hi Raquel, I live in Northern California. I'm on Medi-Cal (state Medicaid), but I didn't work long enough to be eligible for Medi-Care, and I worked too much to be qualified under my parents' Medi-Care (anyway, that's what the SSA told me in 1988 in a case ruling). Santa Cruz County, CA was an "experimental" Medicaid program county, which resulted in few, if any, doctors accepting Medicaid patients except through authorizations from the county Medi-Cruz agent program. I only visited a neurologist once in the years 1987 to 2006, because Medi-Cruz regarded neurologist as being too expensive, when one visit would permit AED prescriptions through a county GP (they wouldn't pay for any MRI or EEG until all AED trials failed, and the county GP stopped the Tegretol when they lost the records in the 1989 earthquake (the neurologist disappeared too, and they said they couldn't find him to submit replacements of the records)). As with the federal courts, my own copies of medical records were not "official" enough. Since the AEDs tried over almost two years didn't give any benefits, but plenty of drawbacks, I took this as more of an opportunity to continue to live with epilepsy, and to avoid dangers during clusters of seizures as much as possible. More than a decade before this, I had a moderate seizure during a dental visit in early 1977, and that dentist refused any further services unless I was at a hospital for emergency backup, which the hospitals refused. Any hint about seizures stops dentists, and they all wanted enough references that even having money didn't make up for living off the streets with silence about seizures, while with Medi-Cruz in 1988, all dental care was called cosmetic over the age of 18, and then with Medi-Cruz, epilepsy would have to be already well controlled and require non-existent hospital dental services again. There were plenty of Social Programs in the San Francisco Bay Area in the 1970's, but they all had major inherent drawbacks, with the Rev. Jim Jones of The Peoples Temple being an epitome of an illustrative example. Hindsight about Temporal Lobe Epilepsy (TLE) and the Geschwind Syndrome gives many explanations for the mainly unpleasant forced personnal relationships I encountered with religious men who proclaimed themselves helping with the Lord's social work. Pop-Psych movements were all over the place also, and they each usually had life spans about as long as any other pyramid scheme. The shortage of Mental Health workers for the myriads of then new out-patient homeless people, made studies in psychological testing a promising academic field. That's when I discovered that the signs and symptoms of epilepsy were then always to be taken as evidence of mental disorders. Most of the Medicaid GPs stay here a very short time (the best one was here the shortest time, and moved to SF), and some of them don't believe there are such things as painless migraines and/or migraines with aura. There is the only one Medicaid neurologist in the quad-county area. The non-Medicaid one assigned to me after the emergency neurosurgeon released me after my Frontal Subdural Hematoma surgery (3 crater holes, and 3 smaller burr holes), dumped me "because" Medicaid doesn't allow out of county medical services (Dr. Cure-It-Or-Kill-It services are located out of county too, but Medicaid is mainly fictional rules, and many of his patients are chained together for security of incarceration medical compliance). My current GP refused services when I didn't follow her orders to go to ER, but a formal ADA disabilities complaint reversed the refusal so far. Ten years of EEOC lawsuits did prepare me for "exhaustion of administrative remedies" before federal court lawsuits (Catch-22 at every step, then "yes" means "no" with the U.S. Supreme Court). I missed out on the high court finally reversing the 9th circuit's stand about required disability necessarily precluding reasonable accommodation in employment, but I did get the brunt of their total disability requirement before meeting the definition of any disability. Tadzio