Community Forum

Life, Liberty and the right to choose.


 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.



     First, fire the doc.  reason.  You don't trust him/her.   The relationship is over.  Get in touch with the old neuro and discuss what can be done to get things back on track. It may end with a referral to another neuro, but it is a starting place.

           It may be a a cause for the docs actions.  It is hard to say one way or another.  There are many things that could be causing the reactions.  It maybe a  concern, or it may be control, or prejudice.

     It is not uncommon for someone with seizures to not have an event while in the hospital.  the enviroment is safe.  decrease stress leads to decrease potential in seizures.  that is not psycological,  it is a fact.

     Keep a record of all the things that are happening.  Witness statements are a good idea that i have not considered prior.  it is a good idea to keep a daily journal.  be more specific in the journal at times of change.

      You have a lot of things on your plate.  They could be causing some of the changes that you are going throught.  The pain,  difficulty in breathing, seizures, and all the meds.  the possible actions and interactions go beyond numbers.

      To the point of your choice of how or if to consider living.  That is a big flag.  Talk to someone.  Talk to anyone.  My first choice would be to talk to someone familiar with your medical problems and transition.  There can be some help in that place.

      The right to choose,  that is easy.  No one can stop you.  Whether it is legal becomes mute if you are successful.  That is the truth.  My question is;  Is this frustration with the events?  Talk to someone.  Some one may be able to help.   The feeling of being eaten from the  inside out is horrible at best.  People can help, people do give a damn.

I hope it helps.  Rikk



Hi Rikk,


I actually did call my old Neuro after talking with my IHSS care provider and told her eerything that has been going down,  she knows the neuro overseeing my care here and agrees with some of his ideas but not all since she has been my neuro for more years than i can count and made an appt for me to get over there and get out of here.  While she is also glad i am being monitored she agreed with me that it does not rule out epilepsy and agreed with what you had posted and i had not even seen your post util now in the evenings.  So i have decided to let this doctor think what he wants to think and i will go with what ihave known for most of my life and dealt with.


Thanks for your advice.

Hello raquel.Thank you for sharing almost of your life.I am about to cry when I read your personal tistimonies.Pitty you!Dont worry because God Sent you that challenge for you to face the real world,to face the real life and to feel that you are human being created by him only and you dont have to worry because God will not give you that kind of illness if you cant carry the heavy load and I am pretty sure there's a cure for your illness and God would not leave you having suffering.!

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.

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:

In the article at:
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: 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.


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.

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.


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