@A MyEpilepsyTeam Member Dilantin is scary!! It works very well for me, but you get over that 20 mark and bad things start happening! I never went to coma state, but I got so I couldn’t walk, would just fall any time I stood up, even with my walker! I had to just stop taking it for a day, then rebuild it slowly. The neuro ended up decreasing me from 400 to 300 mg/day. Even now sometimes, it’s too much and I have to lay off it. I don’t tell the neuro anymore… I know my own body and I just do what I know will help. That drug interacts with Soooo many things, but it works! I just have to always keep an eye on it! Thanks so much for your input and support!

@A MyEpilepsyTeam Member before I got epilepsy 8 years ago, I worked in a private engineering firm that built roads/bridges for Arizona DOT. I’ll tell you, I quickly learned that I really liked working with some engineers more than others. There were some that I, as a mere administrator, was having to QC their plans for mistakes! They weren’t happy with that, but I wasn’t driving on a bridge that wasn’t perfect! Some of them just didn’t care as long as the paycheck was there… some, I didn’t know how they passed their PE!! 😂 There were some I’d trust with my life, but not many. Every profession makes mistakes, and I’ve learned to ‘QC’ most things doctors give me. This one slipped by me, because it seemed so innocuous. I’ll know better next time!! Thanks for your great input! 😊

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A MyEpile...

@A MyEpilepsyTeam Member
I was nearly killed by a doctor's pompous ineptitude at least twice. The first time because I was prescribed Sulfa drugs by a PCP for an infection. I was becoming toxic because Sulfa interacts badly with phenytoin. Fortunately I had to go for my weekly allergy shot, at which time the allergist observed my staggering gait and drowsiness. The allergist did some research; and I was instructed to stop taking the Sulfa. (I was becoming toxic. The allergist's diligence diverted further toxicity.
The second instance was after a seizure and the neurologist insisted on increasing my phenytoin dosage. He nearly put me into a coma! Fortunately, a visiting nurse saw I was having problems and contacted my internist, who ordered new blood levels etc.
It's a bitter pill to swallow (no pun intended) to survive radical cancer surgery only to be nearly poisoned by an arrogant neurologist.
Believe me, John, I'm the last person to consider doctors gods. Granted, I trust some doctors more than others; but I'm the same with all humans.

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A MyEpile...

@A MyEpilepsyTeam Member Yes they do take an oath, so their intention is not to harm you, but everyone ceases to remember one thing... doctors are humans, they make mistakes, they are not gods, they graduated a school and some of them were very driven to learn, others were not so smart or keen to learn but they somehow graduated and they became doctors and their lack of knowledge is just as dangerous as someone trying to kill you on purpose. I know for a fact that unfortunately some people who got brain abnormalities due to some genetic issues have both epilepsy and learning deficits and they look at doctors like they are talking to God because they compare their own lack of brain power with the seeming wisdom of the doctor who after all... graduated a very hard school. But the thing is ... some of the doctors aren't that good. For example, I am an engineer, and I graduated along with 20 other engineers. Out of those 20 engineers I would trust only 3 or 4 including myself to do good job, the other 16-17 didn't bother to learn hard or to be passionate by what they will do for a living, they just graduated because the system had a need for engineers no matter what and they gave them a diploma even if they didn't actually deserve it. Same thing goes for doctors whether you want to believe it or not. I know that this fact is valid for every single job on this planet (doctor, engineer, lawyer, architect, etc.) so my recommendation is, always, and I mean ALWAYS, investigate things yourself. I always read the medication indication before taking them, I always read about medication side effects and implication when taken with other meds together. I know that some members here and I won't give any names..... Marge, will tell you to follow your doctors indication blindly. Well, if you do that, you might end up like poor Shellee2 choking to your death, and you might not be lucky to avoid it in the last second. So always seek the consequences of whatever treatment you are about to follow.

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A MyEpile...

Oh wow, I'm sorry about that happening. I know it had to be a terrible feeling. I say this because I recent went through a situation where I went through an extreme panic-attack/nervous breakdown/seizure, passing out and thinking I wouldn't wake up. When I woke up the next thing I knew I was in the hospital for a few days. I'll pray for you that you health improves and your recovery. 😍

Absolutely! Let me know how you’re doing! ❤️