newbie

[dumbspouse]

Hi, my spouse is is currently taking Lamictal and Tegretol for her seizures since childhood. She's been lucky enough to have the same doctor for 20 years until we got married. We got married and she had to switch doctors because I'm in the military and moved to another state. When we first got married we had a really good doctor in Colorado Springs for 2 years that really worked with us. We just moved again to Oklahoma City this past Aug. The doctor we have or had now was a real jerk. To make a long story short he was hellbent having my wife take Keppra. Since we want to start trying for kids. We didn't think that was a good idea since she has a sister that is being treated for severe depression. So then the doctor wanted to lower her Tegretol and raise the Lamictal. Well he started with that he wanted to raise the Lamictal dose from 50mg/75mg to 100mg/100mg. My wife turned around and stated that she didn't feel comfortable raising it that fast just from personal experience in the past. So he then turned around around and said that he doesn't want to see us anymore. So were back to square one. What bothered me, was that he was hellbent on her taking Keppra. In the tone of his voice he made it sound like it was the cureall. I'm finding that it's no better then staying on Lamictal.

 

[occb]

Oh the trials and tribulations of dealing with a doctor who doesn't listen. My partner and I are very familiar with that.

Welcome to the forum... er dumbspouse. You don't sound so dumb to me, and it sounds like your spouse knows her boundaries and needs very well. I hope you find a better doctor soon.

 

[Nakamova]

Hey dumbspouse, welcome to CWE! You don't sound dumb to me!

Good riddance to the bad neurologist. I hope you can find a better one soon, one who actually knows how to listen. Don't be afraid to try a few different docs, and/or ask for second, third, and fourth opinions.

I hope you and your wife can explore the different forums here at CWE -- there's a fair amount of posting related to pregnancy, and also places to vent, and chat, and play as well.

Best,
Nakamova

 

[dumbspouse]

Thanks, We're hoping that we can get into OU in Oklahoma City. We have known each other for 11 years, but we didn't get married until 3 years ago. I hated this doctor because he looked at me like I didn't know her history. I'm on edge a little more then most because of trying have kids and making sure she's ok while I'm away.

 

[Inaara]

My experience with military doctors (assuming that is what we are talking about since you said you're in the military) is that A) many of them think they are little minigods; B) they frequently think <insert drug> is the cure-all; C) they often do not listen to their patients (I took civilians to my doctors several times when I was in the Army because a civilian can stand on their desk and scream at them with impunity when a soldier cannot); and D) some of them seem to believe that the bars/leaves/birds/stars on their collars make them immune from having to treat lower-ranked personnel as patients and human beings instead of subordinates - the military mindset in a clinical setting does far more harm than good, in my opinion.

That said...in a military setting, even if the doctor "fires" you as a patient, you have options. The patient advocate program within a military hospital is a good place to start. If you get a bad doctor, go there. Speak to the patient advocate and explain the difficulty. The patient advocate is almost always a GS position, so the military doesn't fit into the equation (much). Fill out the paperwork (even if you doctor "fires" you) and explain the problem so that there is a record of what happened. Every military hospital HAS TO pass JAHCO (I forget the precise acronym, but it's the Joint Accreditation of Hospitals and something or other Commission) and Inspector General Inspections and those inspections are no joke. I have been there when a military hospital failed one as a member of the staff (my first four years of service were in the medical field which is part of why I hate doctors, lol). Part of that inspection process is a review of patient complaints against doctors, particularly the IG inspections. It is definitely worth your while to take a few minutes and fill out the paperwork if you are being seen in a DoD hospital or in a civilian facility associated with the DoD.

 

[dumbspouse]

It was an off base provider. The TRICARE office on base showed us how to file a grievance. Where I'm at there is just a clinic not a hospital. It's just the bare necessities.

 

[Inaara]

It was an off base provider. The TRICARE office on base showed us how to file a grievance. Where I'm at there is just a clinic not a hospital. It's just the bare necessities.

Same here with the clinic issue, except it's the VA for me now. Still, use the tools the military has in place for sure. Tricare isn't the best care, but for military, it's the only care, lol.
BUT - given your location, there is the option of outsourcing your care to civilian providers (the VA sometimes did this for me when I lived in WA because I lived 60 miles from the nearest full-care hospital) and if the providers are not giving the care they are contracted to provide, Tricare has a reputation of dumping them quickly and getting people who will when it comes to taking care of active duty personnel.

 

[dumbspouse]

The thing that kills me is when you have a doctor that tries to reinvent the wheel. I have done my homework and talked to others. I think what ultimately pissed him off is that he could not bs me around. I've known my wife for 12 years, I think I kinda know her medical history. I've seen her body react first had on what works and what doesn't. I think he's use to people doing what he tells them and not asking questions. I was about to go :mrt: on him...

 

[Nakamova]

I hate that doctors use the word "non-compliant" when you don't agree with them.

 

[dumbspouse]

That's probably what he'll tell TRICARE when I file the grievece. I'm not too worried about it cause I got 2 other docs and 20 years to medical records to back us up.

 

[epileric]

I hate that doctors use the word "non-compliant" when you don't agree with them.

I've found that attitude most common with neurologists. I had one that got upset when I used the word "why" to question him (never mind disagree).

I'm a bit concerned that I'm going to have to go through a few of them before finding a good one again because I"m moving to a new town.

 

[dumbspouse]

I've found that attitude most common with neurologists. I had one that got upset when I used the word "why" to question him (never mind disagree).

I'm a bit concerned that I'm going to have to go through a few of them before finding a good one again because I"m moving to a new town.

Good Luck!!

I was stationed in GA when my wife and I got married. As soon we got married we knew we were moving to CO, so there was no point in finding a doc in GA. I guess it was beginners luck that we found a doctor in CO that would work with us. I'd hate to see how this doctor would have handled the altitude situation in CO.

 

[skillefer]

Hi! Welcome to CWE! I was first diagnosed by a military doc...so I kinda favor them. (with me, VA docs are a totally different story... >: ( ) Now...I just had a baby 7 months ago...so I'm gonna give the advice my doc gave me.. Start taking folic acid now. I took 800mcg every day. That was on top of the prenatal vitamins. Also, make sure that she gets an OB that has worked with women with seizures. Mine had experience and handled my med issues for the seizures. (Yes, they can do that...and you might find the OB/GYN easier to work with as they like to work with spouses.) Also, she needs to remember that no medicine is 100% free of side effects..and that stress will do the baby more harm then good. Don't be surprised if your wife is assigned a high risk ob/gyn also. That will be because of the epilepsy. Keeping healthy during the pregnancy is very important. Also, not to be surprised if med doses go up during the pregnancy. The bigger you are, the more meds you'll need. Another reason to try to keep control of the weight gain and not let it get too much. Also, hormone shifts might trigger seizures. I had 3 during the pregnancy, and they occurred as my hormones were fluctuating... My most improtant piece of advice? Stay happy and positive. Or as my neuro said, "go home and enjoy your pregnancy" .

 

[dumbspouse]

My wife is taking 1000mcg right now. Now she has a friend from HS that was taking Depicote and had two boys that came out fine. She was taking 4000mcg of folic acid. Her situation was definitely the exception to the rule. My wife was diagnosed 25 years ago. She wasn't born with it, it was from medical negligence. The delivery doctor pushed her back in for some dumb reason.

 

[becks]

my husband and i wanted to start trying for a family and i got removed from my keppra onto another drug (soz cant remember what called) anyway i miscarried at 8 weeks was told by my other specialist that i would have been better on keppra we have since started trying again and was recently diagnosed with polycystic ovaries so i have double the trouble. i only found out recently how series my epilepsy is doctors in england dont tell you a lot they seem to think you must know eveything already.