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doctors that play god with epileptics and how to sue them.
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An_257380 posted:
ok,this is basically it,ive been on phenobarbital for 38 years,and its controlled my epilepsy,that is,i dont have seizures,but i fell on hard times and even tho all these years all the other doctors prescribed me the pheno,(as it works),this one clinical doc and his co worker decide to play god and not give it to me,but instead give me dilantin,in which i had nightmares and didn't take it,so some friends donated me there meds,and i had a wreck/i wanna sue this doc for playing god,as if hed went with what works,no wreck would have happened.his co-worker said you put me in a rock and hard place,on the second visit of begging for the phenobarb.any ideas.suggestions.
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dancer86442 responded:
Hello,


Welcome to Epland, our Epilepsy Community. I have been on Pheno's for over 25 yrs. I changed Neuros when a New Dr told me: You've been on them too long. They are addictive. Are you aware of long term effects? I said: "It ain't broke & I ain't fixing it!" I found a New Neuro. She agreed w/ me. I suggest You change Neuros, once again!


As for Suing the Dr. No Case. You took yourself off a prescribed med w/out Dr supervision. You took meds that were not prescribed for You! You were driving! (changing meds= No Driving until you Know how you will react/adjust to them)


I do Hope you find a Dr that Agrees w/ you. Unless there IS a legit Reason (Long Term Side Effects kicked in???) to come off the Pheno's I don't see why another Dr. wouldn't agree w/ you.


Hugs Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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ramsxx replied to dancer86442's response:
okay as far as the contributed drugs,they were pheno and keppra.(also in which the e.r doc prescribed in the e.r that day last year in may.i took myself of dilantin because i wasn't going to go insane/crazy.(or whatever word you want to desribe),from having really bad nightmares..and begging the doctors twice to change the med to pheno..(something proven ro work)...and like i said,i felt it was um derelict,um gross neglect by giving a epileptic that currently drives a vehicle different drug,as the different drug,no one knows whats going to happen with said patient.(everyone's different smilz memorial day.may 26th.2014/404 p.m)
 
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dancer86442 replied to ramsxx's response:
I don't know why your Drs decided to change your medication. But, IF they had a Valid reason, the Only thing they were neglectful about was not informing You Not to Drive! But, since you have had experience w/ seizures & meds, maybe, they figured you already knew that.


I don't blame you for wanting Off the Dilantin, but, the old rule still stands. Never stop taking a med unless your Dr approves & supervises the titration off that med.


May I ask what meds you are on now? Did you seek another Dr/Opinion?


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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hawiian_girl11 responded:
Aloha,

I agree with Candi.

All you people taking yourself off your meds can go into status epilepticus a real medical emergency

Giving meds meant for someone else is against the law and if caught you can be arrested for it,

the only time I was ever on Dilantin was after I was released from the hospital after meniginitis and encephalitis together. IT was given as a preventative measure to prevent szs.

I was weaned off slowly so I would NOT have szs from going from what I was on to nothing.

now I am on Topamax, Lamictal and Fycompa which is a schedule III controlled substance. The other 2 are not. The doctor has to wean me UP slowly so I do not get sick from going UP to fast. I have been at 4 mgs for several months now and when I go see him in July he will push it to 6 mgs and the norm is between 8-12 mgs.

they put warnings on the bottles hoping people will not do all that.

They also put drug papers ( I can not think of what they are called) in the bag with the drug with all the info about the drug and all the warings and black box warnings and side effects etc.

The ONLY time I ever went off my drugs from sppmething to nothing is when I was in the EMU but it was also supervised as well. That also caused szs but they were also supervised.

Please take your meds don;t stop taking t hem, don't take other peoples meds, get a second opinion or a third if needed Heck I am on my 4th and have had him for 7.5 yrs. I have A VNS and 3 meds. No I do not like it but I take them, HE has had me on about 5 opf them total before these.

I can not think llike Candi, but she says it all. I can only agree with her amd suggest things from my won expericces. But I am not a doc and can not dx anyone.

I was an RN but do not work as one due to my epilepsy.

I still have my liscence but do not use it.

Mahola,

Nancy
 
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ramsxx replied to hawiian_girl11's response:
the good doctor is experimenting,as several other docs went with phenobarbital,for so long,as it worked. also the donated medicine was the exact medicine that i was prescribed,oh and no i am not going to take a med because the doctor thinks he knows it all,or going to give me a pill that would induce nightmares.hmm the good doctor could care less.just because you went to med school doesn't make you a god.otherwise lots of people wouldn't be dying nor would doctors to have been sued or hospitals,leaving medical instrument in human bodies.smiles.
 
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ramsxx replied to dancer86442's response:
candy,i simply went to this doctor to get a refill on medicine ive been taking for over 20 years and works very well,with the least side effects. and then this doctor decides that i haven't had a seizure in all these years that i must not need it.instead the real truth is that's whats kept me seizure free. the med is as stated previously/originally, (phenobarbital). smiles
 
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dancer86442 replied to ramsxx's response:
Good Morning Ram,


Thank You for replying. That Info explains a Lot to me. I'm glad you told me.


Unfortunately, for you, That Dr was probably going by the 'latest' Research findings. It has been proven that SOME (mainly those w/ Traumatic Brain Injury) ppl who have been seizure free for 2 or more yrs, no longer need their med. I Think the Epilepsy Health Center reported this, too I do know: It pays to keep up w/ medical findings. I suggest you do your 'homework' EFA.org, medicalnewstoday.com epilepsy.com Should have this Info in their archives So do many more Health Info Sites. Check out our Weblinks for Epilepsy in Popular Discussions


Problem: Drs/Researchers have no way of knowing who will or will not have seizures once the patient is weaned off the med. I've been reading a Lot of 'Journey's' lately on Facebook & you aren't the First to undergo a Drs 'experiment'. Although a Few have been Successful.


Another interesting fact: When weaned Off a med & then placed back on it, guess what? The med Mite not work for them. So, that may be why you were changed to Dilantin. Makes Sense to me.


But, that leads me to another question. Were you Weaned off your Pheno's? Slowly? How long did it take? ( Did you get another Dr to prescribe your meds or are you Still 'borrowing'? You mentioned you are on Keppra, too???? If Pheno's were working so well, why the Keppra? I take it your Dr took you off them, too? Weaned or Cold Turkey?


Now, another Topic. Please, do not get offended. I read Nancy's reply to you. And of course your reply to her. I think you owe her an apology for your comment 'doesn't make you a God'. Honestly, I saw nothing in her reply to warrant that Comment! She was agreeing w/ everything I said. And I agree w/ her about the Status Epilepticus. A Lot of PPL have Stopped taking an anti-epilepsy med on their own & suffered the consequence. Keep in mind, some of what we relate IS our own Journey, some is the Journey of others'. Then ya mix in our 'homework'. We Both Know what we are talking about. Most Times. I know I have probably forgotten as much as I have Learned. In fact, I Had forgotten about the Status/med Issue. But, Epilepsy && Our meds have Sooo many Different aspects. My mind can't keep up w/ everything. I count on Nancy to remember what I Forget!


I agree w/ You & Nancy knows this, too: that not all Drs Know Everything (especially about medications/side effects) & Anyone (Dr or not) is capable of making mistakes. Some Small, Some very Bad. Again, it was Very Unfortunate, that you were (in my Opinion) an 'experiment'. But, You made mistakes, as well. 1. You didn't seek another Opinion, when it was recommended you stop Pheno's. 2. You didn't refuse to take the Dilantin. 3 You continued to Drive. 4. You took Yourself Off the med! (Dr Supervision/input is Mandatory with ALL Anti-epilepsy meds.) 5. You continued to Drive! (Do you Still Drive? ) 6. Illegally taking some one else's medications. Same as yours or Not. They Were Not prescribed For you! Or in other words: The Script was not Written for You! Again, I apologize, if I have Offended you, in any way. I just want my 'family' to Be Safe! Stay Strong! You are Not Alone. You came here seeking Advice & we have given you Info that we have Learned. Sometimes, the hard way! Like You!


Hope you answer my questions. Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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dancer86442 replied to ramsxx's response:
BTW: Did you know that Drs (or rather very few Drs) don't even Know All the side effects our meds have? They only take a 6 mth course in Pharmacology. All Info they have is Mainly what Drug Reps have told them. Unless they did their own Homework. Your Pharmacist is the Only one w/ More Info. And I am not sure even they are up to speed on ALL the Side effects. Just the Most Common, Some Rare & some Very Rare Side effects are known. Which is why I use WebMD Drug/supplement Info. Underneath the Side effect box is a question about Other Side effects experienced by others'. Tells you More than what the Pharmacy Pamphlets do or even the WebMD box does. The box is just mainly a repeat of what your Pharmacy prints out. _
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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ramsxx replied to dancer86442's response:
hello candy,ken here.first,i did not mean god towards Nancy,i was referring to the doctor.2,i was having hard time so i couldn't afford a regular doctor,3 i simply wanted a refill for my medicine as i know it works.and candy say if you were about to have a seizure and me and you took the same medicine,you would not want me to help you.or just have you stuck with a useless ambulance bill of say $700 and another emergency room bill of say $1000.00 versus the commonsense thing of maybe a ten cent pill. hmm..and you seem to forget i showed paperwork proving i had been on the medicine for years,effectively mind you,and as i"m begging the doctor to please prescribe me the medicine that works,as i don't want to be laying down on a sidewalk and mugged.guess what he said,oh your homeless we can help get you a place,what an idiot. i did drive a very expensive van until this idiot and co-idiot messed with me.
 
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dancer86442 replied to ramsxx's response:
Good Morning Ken,


Thank You for replying. After re-reading your 'god' statement I can now see where you were blaming the Doc. It was just the way you worded it that made it sound like you were referring to Nancy & her schooling. My Mistake!


OK, I understand your predicament. But, Still it ain't rite. Taking others' meds. Pheno is a controlled substance & how are those ppl gonna explain coming up short on their meds, when it's time for them to refill? But, it is your Life & I will grant you are trying to Cope any way you can. No, I would Not take someone elses' meds. Under Any circumstances. Even if it was the same as what I take. But, that is Me! My 'common sense' says Find another DR! ASAP!


If I couldn't afford a Doc, well, I know how to deal w/ that to. This is what I would do! First, I know hospitals have a clause to help those who can't afford medical bills. So, I would go to them. OR I would find the nearest 'teaching' hospital! At 'teaching' hospitals you only pay what you can afford. OR I/you could/would contact the Epilepsy Foundation in your State! You can find contact Info at efa.org. If you have no luck w/ the State then contact efa & explain the situation to Them. They will Help! Granted it will be a Dr of their choice. But, better than none. efa.org has a list of your rites as an EP patient, too. It clearly states you have the Rite to say No Thanks to any changes in your meds.


I agree. That Dr that you begged for script from Does sound like a total Idiot. Guess he has never considered a person w/ seizures, just out walking/strolling thru the public masses, may be at risk if a seizure occurred. Again, it is unfortunate they chose to see if you would remain seizure free after stopping the Pheno's. And then changed your meds. But, my previous post as to Why they did so, makes sense to me. That does not make them Idiots. They were just going by the book of what they had Learned. But, You were Still Guilty, of getting behind the wheel, not knowing if the med would even work for you.


But, enough about who was at Guilt. OK? Let's just say it was a lesson learned & move Forward. Contact the efa, see Another Dr & get yourself back on Pheno's & Keppra. So you don't have to 'borrow' others'. Of course a New doc will probably want to try another med, too. I know other docs will be concerned about the length of time you have been on them. But, as I said "You have Rights". IF you find the Pheno/Keppra Doesn't work after re-starting them, then you Will/Do need to change meds.


I do Hope our conversations have helped you. I'm Glad you came to us. I will be here for you whenever you want to vent or just want to chat or ask questions. You know I care. Rite? Lots of Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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ramsxx replied to dancer86442's response:
hey candy,k here,,happy June well my experience i was talking about was in the past,it just still ughhh,,gets under my skin..ps i do lot a research,and i do have a neurologist and the neurologist,thought they were dunk-offs as well..he rolled his eyes,so,anyways.hop your doing well..and do remember its just a docs opinion,you could see 10 docs n get 10 diff answers,also remember these drugs,well are not so good on your body.it might be good if possible to take say a 1 day break of med,unless life threatening,and drink lot water,just a thought.
 
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dancer86442 replied to ramsxx's response:
Hi Ken,


Well, my June has been Lovely, so far. Temps already over 100% here in AZ.


A Good Quote I read: We can't move Forward, if we keep re-reading the last chapter. (something like that, anyway ) Yes, 10 Drs can give you their version & what each has told you will more than likely vary. I know all too well, the short & long term effects of meds from Research & Personal experiences of mine & other members. I sure wish the Researchers & Docs would get their act together & Agree that Medicinal Marijuana &/or versions of it Should be tried First, in some cases. As for a 1 day break. We can always Wish. But, ain't happening. Cuz, we Have to maintain a steady stream of med in our systems for it to work properly. For some ppl, Even 1 day missed can be Life Threatening. Although there is no way we or a Doc can predict such a situation. BTW: On these meds, You should be Drinking a Lot of Water anyway. Some meds, more than others'. But, if you do your 'homework' you already know All this.


Good to hear you Do have a New Nuero. I Wish I could have said Yes, you have a case. But, since I can't. I will just be Happy that your 'rant' brought you to us. I do Hope you will stick around & help us Advise & support others'. It may mean More Homework. Maybe help you work off some of that 'angst' you still feel. I know how much it has Helped me, over the yrs, to be able to assist others' who are new to EP or even not so 'new'.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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ramsxx replied to dancer86442's response:
hey candy.heres a question.lol.if you came upon someone and you realized they were having a heart attack or stroke,would you offer your nitroglycerin,to help them stay alive.smiles.
 
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dancer86442 replied to ramsxx's response:
Hi Ken,


Definitely Not! Proper procedure says Aspirin (low dose) & ER. I would not give Anyone Prescription meds! My Daughter stole some of my meds one yr & Overdosed! Now, Only my Hubby knows where I keep my meds. Since our 25 yr old son still lives w/ us. Course he ain't anywhere near the 'wild' child my Girl was/is. But, still.....


I know why you asked this question. My Answer is still the same. I would Not give anyone my meds, intentionally. I would Never take Their meds knowing it would cause them a shortage that may affect them or cause issues in getting more of their meds.


Smile & Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.


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