In case I forget.


What a difference an Allied Moving Van can make.
October 17, 2006, 1:18 pm
Filed under: Dr. Neuro B, Dr. PCP, Texas Comprehensive Epilepsy Program

Something strange has happened. I’ve had the same medical insurance for ages. It used to be that I’d have to have a shot of bourbon before I called them for anything because they were rude, stupid, unhelpful, full of attitude, and generally undeserving of good holiday gifts. This went on for years. Every tiny little claim resulted in multiple calls to get them to cover it.

Then, about a year ago, something changed. They started just….paying claims. Occasionally they would kick something back and I would have to call them. BUT. When I called, they were polite. They were helpful. You could hear the smile in their voices. These call center people had become something of an advocate for me, helping me understand terminology, giving me leading information that caused me to ask the right questions.

Case in point:

Epilepsy Protocol MRI, ordered by Dr. Neuro B, for who I had a referral from Dr. PCP.

Facility charges: $2,749

Insurance adjustments: $1,099.60

Insurance payment to provider: $1,154.59

Patient balance: $494.82

Problem: $494.82

I knew I had done everything right. I had the referral. I had an in-network provider. I had the provider get a pre-authorization for 100% coverage. And now I have a bill for $500. So I call MegaInsuranceCompany.

I got to talk with Craig. He first said, “That’s you co-insurance payment.” I said, “I don’t have co-insurance.” He said, “Let me dig some more.” Then he said, “It looks like you didn’t have a referral.” I said, “I had a referral from Dr. PCP to see Dr. Neuro B, who ordered the test at an in-network facility. I have a Managed Choice plan and this should have been covered at 100%.”

THEN Craig said, “I’m sorry if there has been a confusion. Would you hold please while I research your benefits?” I, thinking yeah I’ll hold for $500 say, “Sure.”

A few moments later Craig comes back on the phone and says the mistake is theirs, that they mis-coded the claim, that he had “validated” it and sent it through for rush payment. He apologized for the inconvenience and THANKED ME for calling so he could fix it.

Then we chatted a little bit…he said it was snowing. I said No Way! He said, Oh Yes. In this rural northern state bordering Canada, it is snowing. I told him how pleased I am with the service I’ve been getting from his company. He laughed and said he hears that all the time. He said that MegaInsuranceCompany had moved a year or so ago from Huge Multi Million Residents City to Middle of Nowhere Rural State and that everyone there is nice. He laughed and said, “In the winter we can’t help but be nice we’re just so happy to have another human being to talk to!”

So…they key to good customer service is to establish your call center in the middle of freaking nowhere. The citizens are happy to have good jobs available. They don’t spend an hour in rush hour traffic commuting to a huge smog infested city where it costs $20 a day to park their cars. The citizens in Nowhere are community oriented, they live at a slower pace, and they still think being helpful and polite is a good way to go.

If I ever leave the Gulf Coast, I think I’m moving to Frozen Land by Canada, just because the people are nice.

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All things for a reason?
September 21, 2006, 10:20 pm
Filed under: Fear, Neuro, Texas Comprehensive Epilepsy Program

I’ve been trying to find “the positive” in this whole brain injury experience, but it’s been pretty difficult.

Today, I think I found a little bit.

I was at work this morning and I went into the restroom to brush my hair. The mom of a student at the school where I work was in there. We started chatting about her son. She said she was really concerned about him because he had been taken off his ADHD meds and put on an anti-seizure drug but that his ADHD was out of control.

We talked about that a little bit and then she started talking about how she is concerned about the anti-seizure drug, about her son’s neurologist, and if he is even having seizures. I told her of my own experience with finding the right anti-seizure drug. She was surprised that I have seizures. I told her I am taking Lamictal and it is helping me a lot. She said that is what her son had been given.

She has so many concerns. She described what sounds like partial complex seizures to me: “Sometimes he’ll just stop whatever he’s doing and stare off into space, and be unresponsive. Then he’ll come back.” She said initially her neurologist refused to put her son on medication. Then she told me that her neuro hadn’t required them to come in for an appointment for a year, just started giving them prescriptions over the phone. She said her son had recently started having “jerking” episodes in his sleep at night. She told me that his symptoms seemed to be happening more often.

I told her that it’s not rare for children to have seizures. I told her that in children, a “wait and see” approach isn’t rare in children since they often outgrow their seizures. I told her that anti-seizure medications affect everyone differently and that sometimes a person has to try a variety of drugs to find the right one.

Then I told her that I wasn’t giving her medical advice, but that she might want to consider getting a second opinion from another neurologist. She said she was so frustrated and afraid that she didn’t know what to do next. I told her about my seizures, and my experience at the Texas Comprehensive Epilepsy Program. She had never heard of it. I told her that there are neurologists who specialize in pediatric seizure disorders. I gave her their phone number and web site and told them how they had helped me.

She cried. She said she had almost given up hope of helping her son.

Two years ago I knew nothing about seizures. Now, because of my own problems, I know a lot about them. Because of what I’ve had to deal with I had information that this mother needed and I was able to give her a little hope, a new chance to get help. So maybe there is a reason I’m going through this. Maybe there is a reason my brain was injured. Maybe her precious son will get help, improve, and grow up to be a spectacular human being. I’m choosing to hope so.



I apologize before I even write it, Art & Paul.

Hello Lamictal, my old friend,
I’ve come to swallow you again,
Because a pressure softly creeping,
Left its burps while I was sleeping,
And the damage that was planted in my brain
Still remains
And makes the sound of burping.

Hope. That’s what I left the TxCompEpiProg with yesterday. Oh, and a really complicated prescription for ramping up on Lamictal again. And a secret satisfaction that my NEW neurologist, Dr. Neuro B, thinks that my OLD neurologist, Dr. Neuro A, done did me wrong. Because that’s what I thought, too. And it’s nice to be considered right by an expert.

It went sort of like this:

From the smiling, organized, competent clerk at the front desk to the happy, smiling, competent nurse, to the friendly, kind, competent resident, to the smarter than is probably legal, experienced, competent doctor, I felt like I was in the hands of people who not only COULD help me, but seriously wanted to.

I went there expecting to be put off AGAIN, to be a zebra AGAIN, to be sent off with more orders for more tests and no real hope. I left there with a definitive diagnosis, not a differential, a prescription for a drug that helped me tremendously in the past, a request for a new MRI, an offer of continuing care, and a some confidence that maybe maybe maybe I can and will get better, and certainly can and will stop getting worse.

First, the diagnosis. Dr. Neuro B, after reviewing all my prior test results, my seizure toteboard, my meds lists, and symptoms, was saying things like “Usually, with epilepsy, blah blah” and “Epilepsy often blah blah”. I interrupt and say, “Are you telling me I have epilepsy?” His reply was “Yes, you definately have epilepsy. No question. Your EEG is textbook.” (Remember, Dr. Neuro A’s response to this EXACT question was, “No, I’m not telling you that. I’m telling you I don’t know what you have.”) I shook Dr. Neuro B’s hand and thanked him. Finally.

Next, the prescription. Dr. Neuro B reviewed my meds list and said, “So if the Lamictal helped you so much, when it quit working, why did you get taken off of it? Why didn’t you dose get increased?” My answer was, “I asked that, too, and was told that when an AED quits working that you just have to stop it, that it will never work for you again.” His response was a look that said “What the fuck???” and he said “Your dose should have been doubled when it stopped working. You should not have been taken off Lamictal.” I told him that I agreed, and that I wanted to go back on Lamictal if only for the great side effects (spontaneous weight loss and randy like a teenager). He laughed, commiserated with my husband about the things husbands have to do for their wives, and confirmed that yes he intention is to take me up to double the dose I was on when I stopped. I almost kissed the man.

Next, the MRI. I imagine one of the reasons doctors become niche specialists is because of the cool toys they get. I had my MRI films with me and he reviewed them but ordered another brain MRI. He apparently has the biggest, baddest magnet in the south at his disposal and is very proud of that. He said he wants a better resolution and contrast. I don’t mind this at all, and am happy to cooperate willingly with a doctor who is willing to not disregard what I tell him about my experiences, to give me a lot of information without me having to drag it out of him, and to have the guts to tell me when he thinks something has been done wrong. Five big stars for Dr. Neuro B. Minus 6 for Dr. Neuro A.

He also volunteered that while my particular symptomolgy is “rare”, that it isn’t unheard of, that there are reported cases, and that he’s had experience with intractable belching as a manifestation of seizures. Remember, Dr. Neuro A at first said that mine was the first ever recorded case and later said that yes there had been ONE case reported, and that that patient had been put in a mental hospital for 20 years.

When I asked Dr. Neuro B about the video EEG, which is what Dr. Neuro A had originally wanted me to go to the TxCompEpiProg for, he said there is no need for that sort of thing. He said my regular EEG clearly showed all that was needed to make a definitive diagnosis, and that we would only consider a video EEG is the meds didn’t work and we had to consider surgery as an option. He said that was “way down the road”.

So – this is the point where my life has come to. The best day I’ve had in months was the day I got diagnosed as an Epileptic.

And I would be remiss if I didn’t express my deep appreciation and love for my husband and his support. He is totally committed to seeing me through this entire ordeal. He took the day off from work yesterday to go to this appointment with me. He calmed me when I was so nervous in the car on the way over that I almost puked. He held my hand through it all, made sure all the right questions got asked, reinforced my impressions and opinions about how everything was handled, and has just flat out loved me like crazy for 15 years. Thank you, dear husband. Thank you.

Lamictal???? WORK YOUR MAGIC!!



Tomorrow…it’s only a day away
August 13, 2006, 9:35 pm
Filed under: Texas Comprehensive Epilepsy Program

Yes, I’m feeling very show-tuney today. My next selection will be from Mutiny on The Bounty.

This is what it felt like to wait for Christmas when I was a kid. You started thinking about it on Halloween, then by Thanksgiving you were snooping in the attic and the Forbidden Top Shelf of Mother’s Closet for the white pleather knee high go-go boots that you were gonna DIE if they didn’t get you for Christmas.*

MRI films? Check.

Referral form? Check.

EEG report? Check.

Meds list? Check.

Printout of Seizure Toteboard? Check.

Irrational hope that Something Good Will Happen at TxCompEpiProg? Check.

*I did indeed snoop out the go-go boots. Then I got caught. And they held them for punishment until February. That’s a looooong time to go without go-go boots when you KNOW they’re there, being held hostage. 



One Week More To Wait
August 7, 2006, 10:40 pm
Filed under: Fear, Mental Health, Neuro, Texas Comprehensive Epilepsy Program

The focus now is on not pinning too much on FINALLY getting to the TxCompEpiProg appointment. It’s just another doctor, who will just order more tests, that may but more likely may not answer any questions.

Realistic Best Case: More drugs that might make me disassemble, might make me nuts, rather, might make me MORE nuts. The best part of the realistic best case? They might might might might…..help. 

MiddleOfTheRoadButStilllPrettyFreakingHorrific Case: “Now this cranial saw won’t hurt a bit, we promise!” 

WhoTheHellKnowsHowRealistic Worst Case: I’m stuck right where I am, slowlyslowlyslowly getting worse, no one can figure out what’s wrong or why it’s happening. I am shuffled from here to there and subjected to the scrutiny of more and more brains, who’s collective years of college would, if piled upon one another, actually crush the earth like an armadillo on highway 71, but still find no help. I grow to like the color of the rubber on the walls of my room, and I forget what the texture of food is like that has to be cut with a knife. Or, one day I can’t stop the burping and I can’t get air and I. die.

Seven Days. I think I’ll go play some Ronnie Wood.



In case I can’t breath
July 29, 2006, 9:34 pm
Filed under: Fear, Husband, RX, Seizure, Texas Comprehensive Epilepsy Program, WordPress

Ha! I just pulled up WordPress* and went to sign on. The title of this post? That’s what I typed for my user name. Hm. Guess there’s no question about what I’ll write about tonight.

I’ve stopped taking the Trileptal. Been on it about 10 days. Increased dose a day or so ago. Except for this past Wednesday, the burping has been a lot worse and getting stronger every day. Yesterday, my husband walked up and asked me a question. I was burping at the time, and he has to stand and wait for me to answer him. But then he had to stand some more. And then I started gasping between burp groupings, and I really started to get very scared.

He did too, I think. He stood there looking at me, knowing there was nothing he could do.

Finally, it stopped and I could get air in. I was able to answer his question.

His reply was, “Stop taking this medicine.”

Mine was, “Yeah.”

Today hasn’t been bad. Thankfully. I’m a good 40 hours without it, and I’m hoping to return quickly to what has pathetically become “normal”, which means about 20-35% burping, all day, every day. I was very very afraid that I would start degenerating cognitively again. I am relieved that I won’t be finding out.

Two weeks til’ TxCompEpiProg. Counting, who me? The nanoseconds.

*See? Still conforming! I want more points.



Down with Keppra; Up with Trileptal!

Tomorrow I double the Trileptal dosage. So far, it’s been very similar to my experience with the Keppra. I’m very afraid – so scared that two weeks from now I’ll be disassembling again.

This is what happened with the Keppra:

I had hit a wall on Lamictal. It had quit working. The burping had returned quickly to its prior frequency, so Dr. Neuro A said to start taking Keppra and come down off the Lamictal. Did that. Two weeks later, upped the Keppra.

The burping had never responded to the Keppra, and I had experienced a sudden increase in cognitive problems that I already had (I’ve listed them before – most of them have to do with words and visual processing) noticed since the accident. When I increased the Keppra, within a matter of 4-5 days I really degenerated.

The burping was worse than ever before. It was almost constant meaning that a literal 99% of my day was saturated with burping, often long, extremely strong series that made it impossible for me to get air in, and a few times actually caused me to vomit. I couldn’t think straight. I couldn’t remember 5 minutes ago or three days ago. I couldn’t follow a conversation, or remember an appointment. I was losing words left and right. I had become disorganized.

And I experienced three totally new problems: I was getting lost while driving, and I physically couldn’t get words to come out of my mouth. I had the word, but I couldn’t get my voice to push the sound out of my lips. Also, I began having bizarre nerve experiences in two ways. First, random, occasional shocks that were only a second in duration. They felt like an electric needle was being jabbed into me. Very fast, very strong. Usually on my right calf or arm, sometimes on my left leg. Next, on my right upper thigh there is a patch of skin about the size of my hand that, since 1985, has been dead to touch on the surface as the result of damage during surgery to remove my gallbladder. But suddenly it had come alive with sensation. Burning, itching sensation that wouldn’t stop. I scratched it red over and over.

I was totally terrified. Bits and pieces of my brain were going away. I couldn’t make a decision. I couldn’t understand instructions. It reached a crisis point. I met with Dr. Neuro A who did a number of things. She a) took me off the Keppra over a week’s time, said wait two weeks and “if you’re still burping” start taking Trileptal and come back in 8 weeks. b) referred me to the Texas Comprehensive Epilepsy Program at UT Med and Hermann. c) wrote a script for a variety of vitamin b related blood tests, and d) sent me on my way with no guidance or support, dumping me on my Dr. PCP as an easy out.

You see, I was falling apart in her office. I was in tears. I was holding the script for the blood tests in one hand and the paper with the TxCompEpiProg info in the other, crying, utterly unable to figure out what to do. We had just discussed everything I just typed here and she sat there looking at me in my disassembled state. She asked “Why do you look so distressed?” If I hadn’t been so close to just folding up I would have laughed hysterically. My response was “Because I am very distressed!” There was more. We’ll leave it at, it ended badly.

So here I am, ready to up the Trileptal dose. Let’s all watch closely boys and girls, and see if I go away again.