In case I forget.

Eight Hours A Day
March 18, 2007, 10:43 pm
Filed under: Brain Bits, Counselor A, Dr. Hypnotist, Dr. PCP, Mental Health, RX

That is how much “they” recommend a person sleep for a healthy life. But if that is turned on its head and you are only able to be awake eight hours a day, let me tell you, it isn’t healthy. I’m sleeping about 10 hours a night. Then after being up about three or four hours I go down for a four hour nap. Then I’m up for a few hours and down again for a nap for a few hours. I’m sleeping about 18 hours a day! I’ve tracked it back and I think this started not long after I began taking this Cymbalta. I had read the manufacterer’s website and they mention “sleepy” as a rare side effect. But I’ve also read some user review websites and extreme somnolence is sited as a not so rare side effect. It is really making my life very hard. So I have decided to go off this drug. I started at 30mg a day for a week and then up to 60mg a day. I don’t have any 30mg left and since I just saw my PCP last week I don’t want to go back to him about this. I’m just going to stop taking it tomorrow and see how I do for a week or so. If I have a problem I’ll go see my PCP. I’m not due to see him again until early May. I know that going cold turkey off an antidepressant is not recommended but I’ve only been taking it about six weeks and I’m not taking a high dose. I have to be able to be awake more than four hours at a time!

On the other front, I’ve talked with Counselor A about hypnotism. I’ve asked her if she has any experience with it helping with depression and PTSD. She said that she personally has know a couple of clients who have found some use for it and has a friend who has found it very useful. I asked her to ask around for a referral and she sent me to a psychologist who uses it as a tool in his practice. So I went last Friday to see Dr. Hypnotist. We clicked well. We talked for about an hour and a half. He isn’t at all weird and he isn’t promising that I’ll wake up all Pollyanna. I’m going to meet with him tomorrow and see how we do together. I’m very interested in this approach because so much of what my Counselor A talks about as a primary symptom of her labeling me with PTSD is the “white noise” in my head about the accident. I’m hopeful that hypnotism night be able to calm some of that. I sure as hell don’t want to take another pill. For anything. It’s a good bit woo woo for me. I’m not an alternative medicine type at all but I figure hell it can’t hurt. Anything but my unemployed pocket book. My insurance covers damned near everything in the world, but not hypnosis. If it helps it is certainly worth the money.

Keep your fingers crossed for me. I’ve read so many things about stopping Cymbalta being a horrific experience. Most of the people who talk about that have been on it for a long time. So I’m hoping that six weeks won’t be a big deal. And lets also hope that my hypnotism scheme bears some calming brain fruit!


Self Pity are two four letter words
March 14, 2007, 11:42 pm
Filed under: Brain Bits, Fear

I’m trying to remember the last time a movie made me cry so hard I had to pause it so I could wipe up the tears. I just watched Baghdad ER. Holy shit. I don’t have a yes or no on if we should be in this war, and I don’t know what is right and what is wrong. But these soldiers oh my God these soldiers.

I was talking with a psychologist a couple of weeks ago about PTSD. He made a reference to a couple of previous clients he had worked with. One had been raped and beaten, left for dead. Another had been kidnapped and tortured. He equated my experience, my fear, my anger, my mental white noise, oh did I say my fear?, my constant dreaming, my depression, my inability to come to grasp with my brain being hurt, my total grief, with their problems as an attempt to correlate the experiences that can cause PTSD. I said to him, “But these people have been through truly horrific experiences!”. He said, “But you have, too.”

I don’t see it. Like these soldiers in this movie, those two clients were brutalized, they were attacked, they were permanently injured in body and mind through no fault of their own. When I write it like that of course, it’s me. The theme I keep coming back to, the words that come forth when I’m at a loss to voice my pain, are always: I didn’t do anything wrong. Just typing those words makes me cry. I DIDN’T DO ANYTHING WRONG. I wasn’t speeding, I didn’t run a red light. My car was in perfect running order. I wasn’t drunk, I wasn’t stoned. I wasn’t talking on my cell phone, I didn’t have the radio up so loud that I couldn’t hear what was going on in traffic around me.

All I know is that one minute I was at a mall dumping the trash off the tray where I had eaten a light supper and the next minute I was looking up into my husband’s face, asking him who he was. “Are you Husband?”

Pity. These soldiers. My God, how selfish, how totally obscene is it for me to think a little brain injury, a few broken bones, a lifetime of seizures, a lifetime of fear and white noise in my head, in any way at all compares to these soldiers who have volunteered to serve in MY military, be the war right or wrong. I don’t see it. When you make a list I see the correlation. But when you look into their eyes, I think I’m worthless for anything other than abiding gratitude that I left that hospital with all my limbs, all my organs still attached. I’ll never be right. My brain will never work the same way. My knees will never work right again. My shoulder will always hurt. My pelvis will always get stiff. My wrist will develop arthritis and one day I’ll start to loose use of it in tiny ways. But my God. Oh my God, these soldiers.

The “S” Word
January 28, 2007, 7:45 pm
Filed under: Brain Bits, Counselor A, Dr. Neuro B, Fear, RX, Seizure

On the Counselor A front: She is saying thing like “PTSD”, Grief, Wheelchair. I am starting to look for a job but I’m very afraid because even if I can hide the burping through the hiring process, what happens when I have a 90% day? At my prior job is wasn’t such a big deal because they knew me and went through the process with me, the watched me through the gastro studies, through the brain scans. They saw me the day I was told I am having seizures. They watched me loose bits of myself on Keppra and Trileptal.  But a new job? The first day I can’t control the burping what do I say? Oh don’t worry I’m just having hundreds of epileptic seizures. No problem. Yeah that will go over great. I have some leads at good non-profits but I’m just dreading the whole process. Maybe I should have paid more attention to my mother’s advice. Marry a rich man.

On the Dr. Neuro B front: I saw him last week. The Husband couldn’t go with me and that was pretty stressful. I had a list of questions written down and I went through it with him. We talked about the burping – it has reduced in intensity but only a little in frequency. He continued with his previous plan of increasing the dosage but he ramped it up. From 400mg to 500mg. For only three weeks instead of three months. Then up to 600mg. Come back in three months. Then if no resolution keep pushing it some more. Before he had said that 1000mg is about the upper limit. He asked if I’ve had any side effects and I said no. He asked again (apparently he was surprised by that or just REALLY double checking) and again I said no so up we go on the dosage.

I told him that both my Dr. PCP and my Counselor A both think I am experiencing this thing which I can annoyingly not pronounce, Dysthymia. They’ve both suggested an anti-depression med. Wellbutrin. So I asked Dr. Neuro A and both he and the resident in the room just cracked up. Seriously.  No, No, No they said. They asked me if I knew why? I said….side effects? In unison they said No. Seizures! Apparently Wellutrin can cause people with epilepsy to have more seizures and worse seizures. He suggested Cymbalta. He said it is the SSNI that works best with people who have epilepsy. Then he said that depression is  very common with epilepsy – approximately 30%.

Then the scary part happened. He went back to talking about the dosage escalation. He said that since I had failed (why do they call it that – makes it sound like I did something wrong) on a few different anti-seizures drugs that he would push the dosage up for a while longer and if it isn’t getting me to 100% no seizures I will have to “be hospitalized”. I said, whatever for? He said for a video EEG. I’ve heard of that so it’s not so scary. He said depending upon what he can learn from that he will begin talking about surgery. I made it clear that I have a negative opinion about brain surgery. He said another possibility is a Vagus Nerve Stimulator.  This doesn’t scare me as much as brain surgery but it still doesn’t thrill me. I’ve read a bit about them and understand that they can have permanent impact on various nerves that run down through your neck, and some other not pleasant problems. I think I might prefer to just take more and more and more drugs than have anybody cut me open for any reason. But I know that’s not realistic. I remind myself that my Dad had brain surgery (to remove cancer) and that it was truly no big deal. He had some short term memory impact but hell, I already have that. Still, it’s my brain.

I asked him where the anomoly he saw on the epilepsy protocol mri is. He pointed to a place on his head a little bit behind his left ear and about 10:30 looking from behind. I asked how deep and he said “pretty deep” but he also held his fingers together and said it’s really really small, about 1/4 inch big. So trying not to freak out. Deep brain surgery. C’mon Lamictal. Work for me.

“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”.

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.

But I was THINKING the correct word!
September 17, 2006, 12:31 am
Filed under: Brain Bits, Memory

And….here come the cognitive side effects again. The last post I wrote? I proofed it four times. It wasn’t until the fifth read that I saw I had written “that that” instead of “thigh that” and “is is instead” rather than “it is instead” and a couple of other such mistakes that I can’t even remember now (yeah, there goes the short term memory).

Now, if I would start thinking food looks GROSS and get horny like a lizard, I’ll have some side effects that I LIKE.