posted
This happened about a month ago, and it only just now occurred to me to post about it here.
About 8 years ago, my mother had a seizure. We were watching Sneakers on TV, and when I looked over at her, her hands were up in the air and her feet were sticking out. She didn't respond to my questions, and I completely freaked out. I thought she was dying.
We later found out she was okay. A week or two later, she had another seizure in the kitchen. I wasn't home, but my brothers were and one of them was able to catch her and gently lay her on the floor.
Since she had two seizures, she was not allowed to drive for 6 months. I lived at home at the time, so I did all the driving for her. She got put on Depakote, which, in itself, was an incredibly trying ordeal for her. You see, my mom has anxiety attacks and taking medicine is very scary for her. She doesn't even take Tylenol. It's not like she never takes any medicines, but she'll try natural remedies before resorting to conventional medicines. There is a short list of medications that she will take, but she checks herself religiously for any rashes or reactions to the medicine. (Once, she and I were both on antibiotics for strep throat and we both had a reaction. We both had taken the antibiotics several times before, too.) So, she went on Depakote although it scared her to do it.
She takes 750mg in the morning and 500mg at night. (I might have that backwards.) She also writes down in her daily planner EVERY day what time she took her medicine.
Anyway, I wanted to give you an idea of what sort of woman my mother is when it comes to taking medicines. I've held her hand many a night during a panic attack caused by taking one pill or another. She's gotten better about this, but the history is there. She's now used to Depakote and doesn't freak out when she takes it. But I would bet my right arm that she still inspects each pill.
Anyway, her neurologist is not very personable. My mother's general care doctor listens to her concerns and is willing to answer her many questions--basically, she gives my mother excellent care. But she only sees her neurologist about every 6 months. My mother still insists on being able to ask questions (she's not one to sit quietly when it comes to her health). She's polite, but with her fear of medicines, she might come off as a bit batty to some. She blames it on her fear and hopes for an understanding doctor. Sometimes all she needs is a reassurance that no, this medicine won't hurt you. (And she'll read the accompanying literature with it.) Really, what she's doing is really what we all should do--especially since the pharmacist here gave my husband the wrong medicine. But that's another story...
Okay, I have to give some more medical history before I go on... Before my mom had the seizures, she had begun having these episodes affecting her speech. We wondered if it could be some sort of stroke or brain injury. What would happen is that in the middle of a conversation she would start saying these nonsense words, or simply be unable to find words at all. She knew it was happening, usually, and would get extremely frustrated. Each episode was fairly short-lived, and we learned to deal with it. When we were in public together, I could tell when it was happening, and I would explain simply to whomever we were talking to what was going on, or I would take over the conversation/transaction myself. She was still able to function normally, this only affected her speech. This often happened during driving, but not ONCE affected her ability to drive. I have been with her numerous times when this happened while she was driving and not once did she do anything erratic or unsafe. This will be important later...
Okay, after she went on the depakote, she continued to have these episodes. Eventually, she stopped saying nonsense words altogether. I'm not sure if that coincided with the medicine or if she simply learned to not try to speak. I theorized that whenever she would have an episode that she would otherwise be having a real seizure if not for the medicine. But I really have nothing to base that on.
Fast forward 8 years. The depakote had caused her to gain approximately one pound a month, although she managed to get it under control eventually. She's still working on losing the rest of the weight. (And this had happened right when she was doing SO well with moving toward her weight loss goal.) The neurologist is unhappy about the weight gain and wants to try another medicine instead of the depakote. My mother hates the weight gain, but the idea of going on more medicine is frightening to her, especially when the warnings on these medicines are extremely intimidating.
Also, we know that epilepsy is just the name they call it when people have seizures. There's really no way to diagnose it and there are many causes for it. It so happened that on the day of both seizures, she had shown property all day (she was a real estate agent) and had had very little food or water all day. We have always wondered if that was the reason for her having the seizures and if going on the medicine was the best solution. But there's not much to do about it now, since we also hear that going OFF of depakote can CAUSE seizures. So, it would take a caring and knowledgeable neurologist to work this out...
So, at my mom's last appointment, the neurologist was very unhappy with my mother for refusing, or being reluctant, to change medicines. (I'm really not sure if she refused or was reluctant...my gut tells me that she was just very reluctant and wanted real reasons to do it rather than just to "try" it.) So as my mom is checking out, she notices on the bottom of the check out papers that the doctor had put No Driving on the form. This is normal if you've recently had a seizure--6 months is standard. This is NOT normal if you have not had any seizures. So, my mom asked to talk to the doctor again. Other people in the office kept on telling her that if she's "blacking out" she can't drive. My mom is confused at this, repeating that she has NOT been blacking out. At all. Finally, the doctor comes out and calls my mom to a backroom. She tells my mom that she's tired of her asking questions and generally of being a pain (not exact words...I only heard this story from my mom once.). She refuses to change the form, even though my mom had NOT blacked out. She nastily said my mom could seek a second opinion.
My (very experienced) nurse uncle talked to my mom later and he couldn't believe it either as he has been with my mom plenty of times when she had problems with her speech. It in no way affects her driving.
Anyway, we keep on telling her to get another neurologist, but it would be a lot of red tape with the insurance company and she's quite weary about the whole thing. She lives alone right now and is dependent on my brother's family and her few friends to drive her anywhere. She lamented to me the other day that she would like to have the freedom to just go out to eat sometime.
So, this doctor is sick of dealing with my mother and decides to not allow her to drive for NO reason.
posted
Oh, and either during the confrontation with the doctor or during the initial appointment, my mom asked the doctor if she was sure that my mom actually had what she was treating her for. The doctor said No.
Posts: 2880 | Registered: Jun 2004
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I wonder if she could just get a consultation with another Dr? She'd have to pay for the appt. but it probably wouldn't be too bad. Working with another, nicer Dr. might help motivate her to go through the red tape of switching neurologists.
Posts: 6415 | Registered: Jul 2000
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posted
Ugh, that's horrible! I'm sorry to hear that. My worst doctor experience was getting sent to a shrink for a cat allergy (the result was a constant feeling of fatigue, and he swore it was all in my head), but that wasn't all that bad, considering.
I don't have any good advice, but I wish you luck and hope you guys figure something out...
Posts: 24 | Registered: Aug 2005
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posted
Yeah. She had some dental work done a little while ago and was telling the women there about it. Turns out one of the hygenists used to go to the doctor who shares the practice with my mom's neurologist. She says they're both horrible. Anyway, the hygenist is now OFF meds and has never had another seizure. It was a hopeful moment for my mom.
posted
Oh, and I have NEVER liked the neurologist. Not once in the 8 years that my mom's been going to her. I got this opinion based solely on the experiences my mom would relate to me.
I thought she should be warmer and more understanding and more WILLING to listen and really take care of my mom instead of giving her crappy care and throw medicines at the problem. Umm... can we at least TRY to get a diagnosis???
Posts: 2880 | Registered: Jun 2004
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posted
Dagonee, I wonder if I could step in there for her... she's done the same for me plenty of times as I've grown up.
There's a paper floating around her house giving me power of attorney just in case. She knows I would NEVER abuse it, and she is completely competent. So I'm not saying I'd have to invoke it...but she'd probably be willing for me to call around for her.
I wonder if I could call the insurance company since she's tired of fighting. (She's had plenty of battles with big organizations. She had to fight for her disability retirement when she got thrown across a table and seriously injured her back while working for a state mental institution. She finally got it, and seeing as I have been witness to the severe pain and loss of mobility she suffers when her back goes out, she deserves EVERY penny and more.)
posted
If she's willing, it's probably a good idea if you can convince the insurance company to talk to you. I'm not sure why it would be a fight though - surely the insurance company has more than one neurologist on staff?
Posts: 26071 | Registered: Oct 2003
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posted
I am not sure why either, actually. I got that idea from talking to her. It's insurance through the state of New York, where she no longer lives, and since it's government, there's probably a lot of red tape. I'll have to talk to her.
posted
The speech problem sounds like a form of aphasia. If the neurologist hasn't diagnosed this, I'd be very concerned.
Posts: 9945 | Registered: Sep 2002
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posted
Is she going to this doctor alone? Is no one going with her as her advocate to try to explain to the doctor your mother's other problems - and why she fears the medicine? So the doctor can be more compassionate about what is happening here?
Has her general care doctor been informed of all of this?
Farmgirl
(my mom has social anxiety attacks -- and I have NEVER let her go to a doctor without me. Because she just doesn't know how to handle it)
Posts: 9538 | Registered: Aug 2003
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posted
There are many kinds of aphasia, and I'd guess that only the sort that affects reading comprehension would prevent you from driving.
Posts: 9945 | Registered: Sep 2002
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posted
Sounds to me like she needs a new neurologist. Most insurance companies have no problem with a doctor sending a patient for a second opinion (I did it with an old ankle problem for much the same reason - the doctor was not listening to me and what he was trying wasn't working, so both of us were pretty frustrated with each other). If nothing else, I would think that her general care doctor (when informed of the situation) could refer her to a different neurologist. What a frustrating experience to be having, both for you and for your mom. Posts: 5879 | Registered: Apr 2001
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posted
Somebody might as well off this suggestion.
Your mom has panic attacks about medicine; why, and can that tendency be changed?
You should consider the possibility that your mom's accounts of the neurologist might be coloured by this frankly irrational fear.
What about other medical professionals? How does your mom get along with them? Especially any other specialists she's seen for any long term treatment?
Posts: 1515 | Registered: Feb 2002
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My mother has gotten a lot better about medicine in particular, and panic attacks in general. She's no where near the way she was. Also, she has demonstrated the willingness to go onto medicine when it is necessary.
Your statement that the fear is irrational is pretty pointless, since most fear is irrational and we already know that.
No, I don't think her accounts are colored. My own opinion about this neurologist was gleaned from between the lines of my mother's accounts.
Yes, she gets along with all of her other doctors. They also like her.
You need to understand that my mother is not crazy. Having an anxiety disorder is related to chemical imbalances in the brain and is very real.
posted
It might be helpful to clarify some terminology.
Seizure = atypical burst of electrical activity in the brain that results in alterations of consciousness and/or motor function
Convulsion = uncontrolled abrupt changes in motor function, usually associated with a seizure
Seizures do not have to cause any flailing about to be called seizures, nor do they have to cause alterations in consciousness. For example, there is a type of "partial seizure" called a "Jacksonian march," where an area of discrete trembling moves up and down a limb. There is usually no change in consciousness. Another type of seizure is an "absence seizure," where the person (usually a child) just "zones out" for a bit -- there is no change in motor function, just consciousness.
Your mother's intermittant problems with language communication may well be a form of seizure. Certain areas of the brain (Wernicke's and Broca's areas) are responsible for choosing words and making the correct muscles move to sound out the correct words.
If these do represent seizures, it may or may not have implications for her ability to assume driving responsibility. I do not know. But it would probably be helpful to use the most precise and accurate terminology possible when discussing this with medical professionals.
I wish you and your mother the best of luck. Hopefully, her primary care physician can help you sort all this out.
Posts: 14017 | Registered: May 2000
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posted
I agree, she needs a new neuro involved in this situation. If for no other reason than the current one is apparently unwilling to take the time to answer her questions about the treatment being prescribed. She needs to be cared for by someone who is going to take ALL of her needs into consideration, and right now one of her biggest needs seems to be the need to be heard.
I did have a problem with getting my insurance to authorize a second opinion visit with a different doctor after having already set up authorization for a full series of visits with the first. However, when I finally got the nurse coordinator to understand that the reason we needed a second opinion was because of the first doctor's refusal to acknowledge Missy's psychotic reactions to a medication and simply reduced the dosage, they cancelled out the first authorization and wrote a completely new one. This is for psychiatric services, though, with its screwy payment arrangements and so on, so hopefully this won't happen with your mom.
Posts: 4515 | Registered: Jul 2004
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posted
I think you definitely should find a new neurologist, because obviously if your mother is intimidated by this one and you don't respect her, you need a different doctor.
However, let's be fair here. The neurologist is dealing with a patient that has had repeated episodes, may or may not be seizures, can't tell for sure, and the patient is non-compliant with medication suggestions. The doctor has no way of knowing if your mother is even taking the depakote, because with your mother's refusal to change, she is getting a vibe of non-compliance to medical advice from your mom.
If the neurologist signs off on your mother being able to drive and your mother has a seizure and someone dies because your mom causes a wreck, the doctor is put into a very bad situation. You can be certain that if there's an investigation the neurologist will be asked "Why didn't you restrict this patient's driving?" And from what you've told us, she'd have no good defense.
So, there's a sense of covering herself from possible action in the future, and a sense of protecting the public that the doctor has to deal with and if your mom is not cooperative with the doctor's treatment plan, then the doctor is not going to give her the benefit of the doubt.
And she only has the word of your mother and you that these episodes don't affect her driving. Turn it around - would you feel safe as a driver knowing that someone, who you don't personally know, has a license and is driving despite the fact that she has recurring episodes that affect her speech and has a history of seizures? Would you honestly? I can tell you as a mom I wouldn't want your mother driving near me when I'm driving my kids around. Sorry, but that's the honest truth.
No one should be driving if they've taken prescription pain meds, have been drinking alcohol, or have any type of neurological impairment. If a doctor can restrict my driving after taking a dose of oxycontin, then I would think it reasonable to restrict the driving of someone who is having repeated episodes that result in an inability to speak. If you can't process speech correctly, who knows what else is impaired? Remember, we're trying to think like the doctor here, who has never witnessed your mother have an episode while driving so can only go on what she's been told.
So, yes - find a new doctor because like I said, if you don't like or trust this one your mom needs a new one. But I think it's a little unfair to write off the neurologist's actions as "she's just being a b****."
Posts: 14428 | Registered: Aug 2001
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posted
I have absence seizures- and I've taken depakote for it, but I also switched to different medication because of weight gain (40 pouns in 8 months) and I'm now on Keppra- it works fine. Lost the weight, and it doesn't have like any side effects.
Hate to say it- but for a diagnosis as to the cause of seizures- somewhere between 70-90 percent of all people who have repeated episodes never receive a reason as to their episodes.
And I agree with Claudia- your mother's loss of speech episodes- I would be willing to bet that they are seizures. Many times people who have seizures have them a lot- and then have a few more serious episodes. The loss of speech would probably be her regular seizures, and the other incidents the more serious ones.
Definitely get a new neurologist.
Posts: 980 | Registered: Aug 2005
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posted
First of all, thanks for all of the comments. I expected differing views, and that's cool. Otherwise, I wouldn't have posted it here.
One thing, though. This writing off of the neurologist wasn't something that I did or encouraged my mother to do for a simple reason. This is something that's been going on for 8 years, and this woman has consistently been this way. The last straw was her harsh, and uncalled for, words to my mother when she pulled her into that room.
It is quite likely in all this time that the neurologist has witnessed this verbal problem with my mom. And I don't see why it should have anything to do with her driving. Aren't there other verbal problems where people are still allowed to drive? Believe me, if I thought something bad could happen, I would support the no driving situation--although I would have suggested it YEARS ago.
The thing is, nothing has changed for my mom in the last 8 years. She's been driving all this time after the initial 6-month waiting period, and now suddenly--when NOTHING has changed--she can't drive anymore?? And, when she asked the doctor and nurse if one of them would drive her home, since she drove to the appointment, the doctor told her, Well, you can drive home...
It's inconsistent.
Anyway.. next time I talk to my mom, I'll press her to get another neurologist and offer to make some calls for her.
quote:Originally posted by Katarain: It is quite likely in all this time that the neurologist has witnessed this verbal problem with my mom. And I don't see why it should have anything to do with her driving. Aren't there other verbal problems where people are still allowed to drive? Believe me, if I thought something bad could happen, I would support the no driving situation--although I would have suggested it YEARS ago.
Seizure disorders tend to progress. Each time a seizure occurs, the pathway of that electrical outburst is strengthened. This makes the next seizure more likely.
Seizure disorders sometimes may not progress; or they may progress in frequency, character, and/or intensity. The latter might occur rapidly, or it may occur in shifts and spurts at any number of days (or years) apart. This is not readily predictable, and this is why a specialist makes decisions about prognosis and recommendations.
Aphasia (difficulty speaking) suggests a probem in the left frontal (if person is right-handed), temporal, or parietal lobes. During a clinic visit, the neurologist may not have been able to distinguish between any of your mother's episodes of aphasia and her general heightened anxiety, even if those episodes did occur durng the visit. Regardless, whomever is responsible for her care should be made explicitly aware of these episodes. It may well be very relevant to her care. An accurate and thorough medical history is essential to getting good care.
You might find the Epilepsy Foundation website to be helpful. There is a lot of information on patient advocacy there, including suggestions on how to find the mst helpful physicians. There is also specific detailling of state-by-state driving laws regarding epilepsy in the "Hot Links" area on the right.
quote:Anyway.. next time I talk to my mom, I'll press her to get another neurologist and offer to make some calls for her.
That sounds like a good idea. She deserves the very best care she can find -- this is tough stuff. Even if a physician is medically skilled, the relationship is critical, too.
posted
Shawshank--Actually, I was about to say: switch to Keppra. Besides being excellent at controlling seizures and its nice little lack of bad side effects, the company that makes it has been known to sponsor epileptic people and greatly reduce prices.
I know, I know, I sound like a commercial. I've got a parent working in the department responsible for Keppra. Still, it is pretty good, and UCB (the company) is just un-American enough not to be utterly cutthroat business men.
Posts: 1735 | Registered: Oct 2004
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posted
Btw, some doctors just can't stand patients with high anxiety, people who never stop asking questions, who take up more time than the other patients, who don't take his suggestions. I'm betting this doctor is hoping really hard that he chases her away and that she takes that second opinion and never comes back.
Posts: 1014 | Registered: Jul 2005
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posted
I'm not a medical person. However, I'm married to a diabetic who had a seizure because of low blood sugar - I believe it was 42 at the time. You said your mom hadn't eaten much the days that she had her seizures. I'm wondering if low blood sugar could have caused the seizures. I don't think that would have anything to do with the aphasia, though.
Since your mom hasn't had a seizure in eight years, it does seem petty for the doctor to suddenly decide that your mom shouldn't drive. I would first talk to her regular doctor, then also bring it up with the insurance company when you are trying to get her to a different neurologist.
When your mom does go to a new neurologist, you might ask if she can be weaned off the current drug, to see if it's really doing anything at all.
DISCLAIMER: Again, I'm not a medical person - this is my version of common sense. There are medical people here who certainly know more about this than I do.
Posts: 2034 | Registered: Apr 2004
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