In case I forget.

How high can she go?
May 21, 2007, 12:27 am
Filed under: Dr. Neuro A, Fear, Mental Health, Neuro, RX, Seizure

As of today, she can go to 800mg.

At 700mg, things were not good. At 600mg the seizures had dropped so much that some days I actually forgot I have them. When I saw Dr. Neuro A he was pleased by this but since I am still having them he said to continue to up the dosage. He said that since so much progress had occurred that we didn’t need to talk about hospitalizing me. This made me VERY happy. I joked with him that it  might not be the drug but rather since the last time I saw him when he talked about hospitals and surgery that maybe he had just scared the crap out of me and that made the seizures better. He laughed and said he doubted that because he had just come from a guy in another exam room whom he TRIED to scare the crap out of because the guy won’t quit drinking and won’t accept that his seizures keep getting worse because of that. He said he doesn’t think he’s so good at scaring the crap out of people.

So he raised me to 700mg and it almost immediately started getting worse. Now, four weeks in, it’s getting pretty bad again. The strength and the frequency have increased a lot. He said that if the seizures hadn’t gone away in a month to up it to 800mg. So I did that starting today. I can’t tell you how badly I need 800mg to work. If it doesn’t, I know that when I see him in two months that he will want to put me in the hospital. It isn’t that I’m afraid of a 48 hour EEG. It’s that I’m afraid that when it’s done he’ll say “Hey lets talk about cutting your brain open!” or maybe even worse, honestly, he’ll say “Hey I don’t know what the hell to do at this point and I think you’re just never going to get better, and probably will continue to get worse. Have a nice day!”

I’ve started back at work part time and in about six weeks I’ll start full time. I swear. If all this had to happen I wish it could have happened during the six months I wasn’t working. That’s all I need. To have to go into the hospital and maybe have brain surgery right after I start a new job. “Hi. I’m so happy to be working here! Now I’m going to take a couple of months off to let some guy diddle around in my temporal lobe. See ya! But save my desk, OK?”

Here’s to 800mg. All my fingers and toes are crossed.


Avoidance Is A Skill
December 22, 2006, 2:00 am
Filed under: Counselor A, Dr. Neuro B, Memory, Neuro

Yes, it is. One I have perfected! Every time I turn on my computer I see the little icon up there for this blog. And I think – I need to write there. I need to get this stuff down. You know. In case I forget? But I have been avoiding. Because it’s easy to when I’m not in a crisis, when my every waking moment isn’t spent with my head in this thing.

It hasn’t been so terribly bad the last few weeks. I’m still at Lamictal at 400mg a day. Some days seem better. Some days are very bad. The bad ones are the worst I think but then I think the good ones are the worst. The bad ones, because I feel like nothing is ever actually going to work. I feel like the whole last year plus has been one big circle of useless stress, pain, and terror that will just keep circling around and around until I decide none of it is worth fighting anymore. And the good days? They almost seem like false hope. Because every good day seems like a lie. With every good day, in the back of my mind, I am thinking, it’s just a tease. Maybe not tomorrow, and maybe not the next day, but surely the one after that will again leave me gasping for air because the burping won’t stop.

I’m about two weeks out from going back to Dr. Neuro B. I know he will up the Lamictal again, this time to 500mg. I have as much faith that it will work as I do that there will be peace in the Middle East. Baaaaah.

The one good thing going on is the new counselor I mentioned earlier. We’ll call her Counselor A. Because the three that I tried earlier this year were so horrible they don’t deserve their own letters. I’ve seen Counselor A about six times now. She is kind, empathetic, and patient. She does not presume to know what I am going through, but is interested in listening and learning. She doesn’t seem to feel like she must push me to a solution, but rather is willing to simply be there in the room with me. I told her the first time we met that I wasn’t even there for any specific reason. I told her that I know that most people go to a counselor with a goal. I want to figure out if I should leave my husband. I can’t find happiness in my job. I hate myself. That sort of thing. But I explained to her that really, I just need someone I can whine to. Yes, I have my husband. He will listen to anything I need to say but in the end, he will try to fix it and of course he can’t. So then he’ll start to feel bad because he feels that he can’t help me. Yes I have dear friends who I can talk to. One in particular is open to all of my needs and asks nothing in return because she is just that kind of soul. But there are only so many times you can cry to a friend about the same thing without feeling that you are a broken record of self pity and imposition. I tell Counselor A this and she smiles, she understands.

Now don’t get me wrong. She does try to isolate specific stressors and give me suggestions on how to approach them, asks me to consider things. For example, we talk a lot about the fear and sometimes panic that I experience trying to drive on freeways. They never ever ever bothered me before the accident. And the accident didn’t happen on a freeway. But the danger is so real, the speed is so out of control, the vehicles are so big, and the drivers are so aggressive. Even though I don’t consciously remember the accident I know my lizard brain does. When an 18-wheeler is coming at you at 80 mph, determined to be in the lane you happen to be in, and your lizard brain remembers what it felt like and sounded like to be crushed in a small metal box, to be torn apart, to have your bones broken, and your mind shut down, your lizard brain reacts when your conscience brain wouldn’t normally. The instant flush of adrenalin . Palms sweat. Heart races. Ears ring. Breaths become short and fast. It’s panic. And the truth is, it is more dangerous than the 18-wheeler.

Driving on a freeway in Houston is sort of like facing a pack of wild dogs. If they can smell your fear, you’re doomed. So we talk about that sort of thing and she gives me suggestions. Her strongest one, the one I am considering, is that I take a Xanax or two and purposely head out to the freeway. Freeway driving presents a particular problem when you are trying to use a desensitization tactic. I mean, really, you’re either out there or you’re not. So the theory is that if I can do it with the Xanax, that I might be able to train my brain to think it can do it without it. But I hate the Xanax. It is a total crutch, an admission of weakness. But I’m thinking about it.

“So how long does it take for most people to get pissed at you?”
October 31, 2006, 11:37 pm
Filed under: Brain Bits, Dr. NeuroPsych A, Neuro

Today I had an interesting experience. I failed a test. Not something I’m used to doing. Oh yeah, sure, Dr. NeuroPsych A said I didn’t fail, that it’s not a pass/fail test but HEY I know what only getting 50% right means. It means I FAILED. Did not. Did so. Did not. Did so.

I took three neuropsych tests today. The first was the Trail Making Test. Apparently, I can draw lines OK.

The second was the Stroop. I did OK on the first part because blue means blue and green means green. On the second part, I slowed down like car with a clogged fuel pump. Green does not mean green. It could mean tan, or red, or freaking blue for chocolate’s sake. Dr. NeuroPsych A said I did OK but in my experience, 65% isn’t OK. It’s not even a “C”. Below average is not something I am comfortable with.

The third is when I hit it out of the park. The Wisconsin Card Sorting Test SUCKS. I got the first set no problem. The second set took me a while. After the third incontrovertible “INCORRECT” I said, “So how long does it take for most people to get pissed off at you?”. The third set was even worse, and by the fourth set I just gave up trying to figure out exactly how the tester was fucking with me and just went with color because everything else I tried didn’t work. So I came in at about 50% on that one.

The last time I failed a test was in 4th grade and that doesn’t freaking count, right?? What a frustrating day. I’m trying to look at this as progress – we now have some level of documentation that shows exactly where my shiny new neurological deficits are. And I guess that’s good, right? You can’t fix something if you don’t know what’s wrong, eh?

None the less, very frustrating. Dr. NeuroPsych A asked me if I wanted to throw something at the tester. I was very gracious and said “He didn’t design the test”. What she doesn’t know is that I came home and stuck pins in the voodoo doll with the new name of “TESTER”.

Yeah I’m still here.
October 25, 2006, 11:06 pm
Filed under: Dr. NeuroPsych A, Memory, Neuro, RX

I know you all thought I had moved to Costa Rica, changed my name to Juanita, and started selling bananas at the docks but no, I’m still here.

I’ve seen Dr. NeuroPsych A a couple of more times. Last time we talked about neuropsych testing and I questioned what the point is. I know what is different about my cognitive/visual/etc skills now -v- pre-brain injury so I don’t see the need for my insurance company to pay $1,500 dollars so I can be told I have verbal problems, memory problems, comprehension problems, visual processing problems…

Dr. NeuroPsych A brought a bunch of dice to our last meeting. The dice were multi-sided like D&D dice. We played a game where she rolled the dice. One die had a big number on it and I was supposed to figure out how to add and subtract the numbers on the other dice to reach the big number. She demonstrated and could do it almost without thinking. I tried four times and, had I been a six year old, I would have thrown the dice at her out of frustration. Instead I just tried and tried and couldn’t do a single one. Not even close. It was like reading Sanskrit.

The burping has really improved over the last few weeks – I’m down in the 15-10% range most days. The last two days have been in the 25% and heavy range so that’s worrying. After my experience with Lamictal earlier this year when it quit working I am hypersensitive to its ongoing effectiveness. I don’t know where I’ll turn if it quits working again. Scary stuff.

Thanks to the two folks who have sent emails checking in on me.  Mainly just trying to be patient until my next appointment with Dr. Neuro B in the middle of November.

Thinking about rebuilding
October 13, 2006, 11:29 pm
Filed under: Brain Bits, Dr. NeuroPsych A, Memory, Neuro

A report on Dr. NeuroPsych A.

A pretty darned positive experience. A striking physical environment, which I might tell you about later. For now, just imagine piles of papers and magazines and file cabinets. And bright colors. Like yellow. We talked for about two hours. It was a focused, good exchange of information.

She is of the school that believes the brain can regenerate connections that are damaged because of various events, including traumatic brain injuries. She’s been at it for many decades and I liked her. We’ll talk next week about neuropsych testing. It’s something I’ve been asked by many doctors, etc., since the accident but no one has said “do this”. I’ll talk with Dr. PCP about it before I do anything of course.

The most surprising and exciting thing about my time with her was when she said, “When you see Dr. Neuro B in November, please ask them for a release form so they will send me their records on you.”

I said I would and added, “The records I REALLY want are those from the injury – the transport, ER, surgery, and inpatient records.” She said that of course they’re mine for the asking. But – I told her that the hospitals charge a lot for those records – to patients and attorneys. But if a doctor is treating a patient for the problem the records pertain to, the hospital will fax them directly to that doctor for no charge.

She said, “Great. Let’s see if we can get them.” I signed the release and am excited at the prospect of reading this stuff. Like the pictures that came to me a few months ago that answered so many questions for me, and gave me so much perspective that I couldn’t have gotten any other way, these records hold the truth about a vital event in my life. They are the only source of this information and I am itchy at the thought that I might get them. The best part – I told her I wanted to read them, highlight them, and then have someone explain to me what I don’t understand. She patted my arm and said, “Let’s get them.”

If I Didn’t Need Therapy Before…
October 10, 2006, 11:13 am
Filed under: Brain Bits, Dr. PCP, Mental Health, Neuro

It’s been since July. Not a constant pursuit, but rather, innumerable phone calls, hours spent on my insurance company’s web site, multiple office visits (and a couple of humiliations).

I have a great PCP. We respect one another. He gives me his best, and I work hard at living with and acting on his advice. He gives good advice. In July, after that unfortunate incident on his exam room floor, he – understandably – urged me to immediately start therapy with a good counselor. He took my insurance company’s list of counselors and marked it up with his recommendations.

But if you have any experience with the modern world of third-party-pay-medicine, you know how it goes. Most of the doctors have 6-8 week waits, if they’re accepting new patients at all. Some you never get a call back from and some make you wish you never had. I live in a big city so I had a larger pool to choose from which makes me luckier than a lot of people.

I tried three over a period of a few weeks. I’ve talked about it here before – one took phone calls during the first session, one told me that all I needed to do was let go of my anger at the man who hurt me, the other I saw three times and on the third visit when he witnessed me having a seizure in his office, LAUGHED at me. As you can imagine, I felt a little burned.

So it’s been a number of weeks and I need to try again. I really need to. Yesterday I began the round of phone calls and web-site trolling again. I had originally gone looking for a neuropsychologist but there was only one covered by my insurance and she was closed to new patients. This time I skipped it completely and tried regular therapists again. Tough morning.

In the afternoon, I ran across the name of a doctor I was pretty sure I knew, and had a good feeling about. I called my sister. “Hey, remember when we worked at that answering service?” (This was 25 years ago – our first jobs.) She remembered and I said, “Remember Dr. XXX?” and she did remember him – the same way I did. So this is a notice to all doctors and therapists: if you’re an asshole to your answering service operators, they WILL remember many years later when they possibly become your patient, or when they are advising friends on which professionals to see. They will ALSO remember you is you’re a kind, courteous, decent human being. My sister and I both remember Dr. XXX as being just that. She said, “I always had a warm fuzzy feeling about him.” I remember also that his patients were always under control, even when they were in crisis, and I always thought that this had a lot to do with his manner. He returned urgent calls promptly. He was kind when we spoke with him – even at four in the morning. His patients trusted that he would be there for them, and they respected his time.

So I called. This is funny – I got his answering service. Ha! I left a message asking for a new patient appointment. He personally called me back in 3 minutes. Instead of taking my insurance info and setting an appointment he talked to me for about 15 minutes, asking very personal and pointed questions but in the kindest and most patient was possible. The point was that he didn’t want to waste my time by seeing me without knowing if he might be able to help me. He DID end up helping me even though he said he didn’t think he would be the appropriate counselor for me.

He urged me to seek a neuropsychologist and gave me two names. I explained the insurance issues and he told me to talk with them about it anyway – he bet they could work something out. He was the Dr. XXX my sister and I remembered.

I called the first neuropsych. He is booked through January except for “emergencies”. I called the second. Her assistant took the call and I asked about new patient appointments. She asked me told hold and – get this – the doctor came on the line. I told her that Dr. XXX had referred me, and she started to ask the same questions he had asked. We talked about the out-of-network problem. She said told me that she wanted to see me, that Dr. XXX is someone she trusts and that if he told me to call her that she would make it happen. We talked a lot about money and you know, we’ve got that worked out. She THEN told me that she needed to call another patient and ask if they would move their appointment because she always tries to see Dr. XXX’s patients immediately. I said, I’m not his patient – he only talked with me on the phone. She said that didn’t matter, she had that much respect for him. I told her that I’m not in crisis, that it isn’t an emergency. She chuckled and said if it were an emergency she would be sending me to an ER.

So I’m seeing her today. She is a specialist in helping people with brain injuries. She knows of my neurologist and, I found out after doing some more interneting that she’s director of a private clinic that she started 35 years ago.

The moral of this story is that everything you do in your life could, sometimes years later, effect what you do in your future. My job 25 years ago led me to remember Dr. XXX. His kindness made me remember him all these years later. And maybe his kindness has led me now to someone I can go to for help. I’m not in a really bad place but I’m not in a really good one, either. It’s been a really tough two years and the last six months have been worse than all the broken bones.

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.