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Life, Liberty and the right to choose.

Mon, 07/19/2010 - 15:03

lHI,

 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.

Comments

Re: Life, Liberty and the right to choose.

Submitted by raquels on Wed, 2010-07-21 - 15:50
Awww ty very much, you actually had me in tears hehe.  That being said i did get discharged from the hospital this morning and he was maaaad at me.  I had called my Neurologist at the county hospital and she called him and he told her he thought my seizures were Pseudoseizures and she laid into him like white on rice, she has known me most of my life and told him outright that they are not Pseudo that i do have epilepsy and he needed to go back to school and just because my type of seizures and choice of life didnt fit into his research ideas then he shouldnt be trying to identify something he couldnt just because my EEG was normal.  Here is the catcher my EEG was not normal, the nurse told me this morning cause last night i had had a seizure in the hospital bed BUT their computer system had crashed so neither the cam nor the EEG caught it but the nurse did!!!!!   So they told me to continue my medications without the Keppra which means i stay on the Dilantin and the Lamictal, but my old Neurologist called me back and asked me what i wanted to do and she asked me if i really wanted to be set back 8 years of work that we had gotten to me not having seizures every single day and i said hell no so she told me to just keep taking the meds as she prescibed and she would talk to my GP.  Well too late he had already called me after he got the report from the New Neuro and he asked me if the new neuro was a total idiot, i said ya pretty much and he agreed with the old Neuro.  We just have to watch my dilantin levels which now will be checked every month rather than every six months and if i ever start to even feel like i have dilantin toxicity i need to go straight to the ER and not wait.  So im kinda back at square 1 but not exactly, will still have seizures once a week or so but never can tell could be one a month if i am lucky, but at least they wont be every day(fingers and legs crossed), by back at square one i mean i still dont know what type of epilspsy i have fortunately his report will not affect my Social Security Disability cause i have two othher diseases that kinda outweight the epilepsy heheh.  So now i guess i go back to trying to help others deal with their disabilities and help them to lead happy, healthy(as much as possibly hehe), productive lives and reach out for support when i need it and yes from this site too now that i found it.  That is something i always forget to do, reach out for help when i need it cause im so intent on helping others i ignore me until its too late.

Re: Life, Liberty and the right to choose.

Submitted by 3Hours2Live on Tue, 2010-07-20 - 00:35
Hi Raquel, I've been looking for the hard science backing up the spectacular claims of many neurologists who, in truth, seem to be "dumping" patients with difficult to treat neurological disorders. These neurologists will make the claim that they are nearly a 100% certain that a psychological conversion disorder is involved when the doctor becomes frustrated by the lack of positive results to his/her treatment regimen. These trendy neurologists can't get their research numbers to add up correctly, and their use of science and statistics is very sloppy. One of the first lessons in university classes on Psychological Measurements was Heisenberg's Uncertainty Principle, that even in the hard sciences, anything near a 100% certainty is a pipe-dream, and in the softer social sciences, a little too much "certainty" means the rules of science have been violated. With "Yes-or-No" technicalities of neurological impairments, the make-believe "certainty" involved is much like knowing the condition of "Schrodinger's Cat" based on statistics. This website usually blocks out the names of a patient's treating doctors, but so far they haven't censored very much from medical journals. It somewhat appears that your neurologist was/is trying to trick you into consciously or unconsciously faking a seizure, either that, or your neurologist is greatly confused about the natures of the epilepsies. If a seizure is "displayed" without any distinct change in the EEG, the seizure is then assumed weighted towards being non-epileptic. The line of ethics seems to be quickly vanishing in the medical practices; it's no longer simply a small shift as described in: http://professionals.epilepsy.com/page/hallway_provocative_tests.html In the article at: http://www.epilepsyfoundation.org/epilepsyusa/yebeh/upload/Differential_diagnosis_of_epilepsy.pdf Dr. Benbadis cites that he regards Fibromyalgia and/or having a timely "attack" with medical professionals around, as being of (75%, footnotes 15, 16) "predictive value" of only Psychogenic Non-Epileptic Seizures (PNES) being involved (it appears he's given up on his "attack" versus "seizures" stance, and this adds to the easily exploited confusion). He also cites the video-EEG as a "Gold-Standard", but easily dispensed with as being "overly interpreted" whenever desired, to reach a nearly 100% level of "certainty" into another realm of health sciences, such as the DSM-IV. I've quickly looked to see if many neurologists view COPD as being "Fashionable" (does this word reflect/apply more on the neurologist?), and, at: http://asthma.bsd.uchicago.edu/AboutAsthma/causes.html I found the sentence "In the first half of the twentieth century, it was fashionable to attribute all kinds of ailments to psychological causes." Unfornuately, with many neurologists, the science of neurology appears to be regressing to such a Seduction of Unreason. Before going back to university, and grad at SJSU, my epileptic life was a Santa Clara County version of "My Own Private Idaho" in the mid to late 70's. Back in the late 1980's, I was given a toxic combination of Tegretol and Tylenol until liver and kidney failure, stopped the Tylenol and reduced the Tegretol. The 1989 earthquake that hit Santa Cruz County CA too, made the local neurologist disappear and stopped the Tegretol. Since the AEDs tried back then didn't help, I went without any AEDs until late 2006. Secondary Tonic-clonics gave me serious injuries, and Dilantin helped to prevent the TCs, but keeping generic Dilantin blood levels within range was impossible, and even the formulation change in brand name Dilantin was a major problem, but bone-loss stopped the Dilantin, and now I'm using minimal Keppra in an atypical background dose with a large dose with any warning of the secondary tonic-clonics. My partial seizures are intractable, and I gave up on drugs helping them and my migraines, but Keppra has prevented any TC's for about 16 months now. I'm still getting a Catch-22 with my GP blaming everything on seizures and telling me to go to ER, while the ER tells me my seizures are migraines and to just go to my GP. My current Medicaid neurologist is a "cure-it-or-kill-it" nightmare who can't keep his own records straight, and questions brain tumors as indicated by everything and nothing. I hope I can keep getting Keppra while avoiding Medicaid doctors as much as possible. My university studies of the MMPI and psychology/psychiatry convinced me that Mental Health practices are more of an adverse witchcraft than being any type of science. Tadzio

Re: Life, Liberty and the right to choose.

Submitted by raquels on Tue, 2010-07-20 - 17:45
I would have to ask Tadzio what state you live in.  I am on Medi-Cal and Medi-Care i am covered by both i am allowed to choose my own doctors of which if i dont like them i fire them plain and simple of which i have fired now one neurologist, two Gp's, 6 dentists(before they cut denti-cal funding), 1 chiropractorl and 1 ortho-pedic surgeon. I have no qualms with finding a new doctor if i feel they have violated my rights or they do something against my beliefs.  I will keep a doctor if we have differences of opinion and they truly do intende or are bent on helping me but those have been few and far between.  I do have a GP though that i really like, but i dont like his boss and wont even let her touch my file or write out my monthly scripts, one time i got a script with he rname on it and i sent it back and got one with a good doctors name on it.  With all that being said it applies to you too, get a doctor you can work with you dont have to like him or her you just have to agree with them about your medical care and whats best foryou.

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