Neurologist is wrong but shoud I up the dose myself

[Penny]

I'm also a bit more educated than most patients. :/

"Pride comes before a fall"

 

[arnie]

She might actually be more educated than the majority of patients. I know I am, and I imagine that most of us on this forum are more educated than most regarding our epilepsy. That's not a matter of pride, it's just a fact that many of us here take more time to read the med inserts, to look up things on the internet, to talk to and learn from each other, to question our docs, and so forth. After 15 years as a social worker in a dialysis center, being in daily contact with nephrologists, nephrology nurses and transplant coordinators, and educating several hundred patients and their families about kidney disease and treatment options, I'm pretty sure I know more about kidney disease than many GP docs. That's not pride either, it's just a fact.

 

[Cint]

She might actually be more educated than the majority of patients.

I know I knew more about myself and my seizures + symptoms than did the docs before I was diagnosed. And then, after my lobectomy, I went thru hell and started having seizures again along with depression. They couldn't figure out what was going on, until a neuropsychiatrist figured it out. I knew all along it wasn't me making it up. We are more educated about ourselves.

 

[lindsayschu2]

After having been sick and having been dehydrated and getting IV fluids and that whole drama, as a result I got a urinary tract infection. Not a huge deal and not the main point here--My doc on call called in Ciprofloxacin for it since I'm allergic to pennicillin and sulpha. After both looking it up and speaking with a pharmacist, this is NOT a med that someone with an unstable seizure disorder should be on--period. It's not recommended for people with seizure disorders, especially ones who are currently unstable. I ended up going to an urgent care and getting something else, and the doc there was in complete agreement I should not be on Cipro (the pharmacist was even more emphatic). I know there is tons of dialog here about not being your own doctor. But if we threw our trust 100 percent without questioning decisions ever, then often we would be the worse for it. That's my two.

 

[Dolores]

But if we threw our trust 100 percent without questioning decisions ever, then often we would be the worse for it.

I completely agree. Because Dilantin controls my seizures, my GP manages my epilepsy medications and dosages. But when it was decided I needed to go on Zoloft for depression, my doctor sent my to a psychiatrist he trusted to know the interaction between Zoloft and Dilantin. So I did. And I trusted him because my doc trusted him. And 6 months later I had to figure out that the reason I was feeling sick was because the damn shrink kept pushing me to take more ("you can take up to 200mg with no problem") even though every medical book out there will tell you that SRIs have the effect of increasing the amount of Dilantin in your system! And this all came to a head over Christmas/New Years so getting in touch with doctors and getting labs returned was not an easy thing. It took 2 weeks for me to get my copy of the lab work. Hadn't heard from my doc (turns out he was on vacation) and my dilantin levels where way over the limit. So I decreased my Dilantin immediately, finally was able to talk with my doc, explained the problem with this so-called expert and then yelled at the shrink. A year later I took myself off the Zoloft but that's another story.

We do have to look after ourselves because we are the only ones who know how we are being affected by the drugs we take. I am lucky that I finally found a doctor who understands and appreciates that and works with me.

 

[BrandiBrat]

Nick,
I'm not sure if you're checking back or not but I just wanted to say how sorry I am for your situation and that your seizures have increased. You must be extremely frustrated on all fronts...I know I would be. Similar to your situation, I've often rebelled in my thinking and said to hell with all these meds if they aren't going to work I'm not going to take them! Then, I come to my senses and take my pills a few hours later. lol I think we've all been tempted to take matters into our own hands and there's nothing wrong with thinking we can control our unruly neurons to some degree. But, as others have sometimes abruptly stated, it's not the best decision.
Those of us that reside in the US truly are fortunate regarding access to healthcare and our neurologists/epileptologists. Again, that's got to be frustrating for you when your seizures are not well controlled. Keep up the good fight and I hope things settle down for you soon.

 

[Penny]

She might actually be more educated than the majority of patients. I know I am, and I imagine that most of us on this forum are more educated than most regarding our epilepsy. That's not a matter of pride, it's just a fact that many of us here take more time to read the med inserts, to look up things on the internet, to talk to and learn from each other, to question our docs, and so forth. After 15 years as a social worker in a dialysis center, being in daily contact with nephrologists, nephrology nurses and transplant coordinators, and educating several hundred patients and their families about kidney disease and treatment options, I'm pretty sure I know more about kidney disease than many GP docs. That's not pride either, it's just a fact.

I didn't say anything about education only pride.