Good news: ADD not NVLD

I got the final report back from the neuropsych testing. I found it pretty interesting. The results were substantially different from last time. They did find that I do still have ADD, that is consistent. But all the non-verbal test scores had gone way up. They explained that my abilities aren't as high as the test scores indicate although higher than the original scores indicated. My familiarity with testing made most of my scores go up. Also, I was moderately depressed at the time of the first testing. The areas that I was weakest in, the visuospatial abilities, became even weaker when I was depressed.

The components of the testing that indicated attentional difficulties however, I continued to have problems with. I knew that, one third of the way through the testing, Dr. B told me that she was almost positive that ADD would be a constant diagnosis. If I were NVLD, even with my testing experience and lack of current depression, I would still falter, same as I did with the attentional and planning components.

I am so happy to hear this. The research about "success" in adult life with NVLD is pretty bleak. I felt like I needed to know so that I could learn how to compensate for it.

The best advice I've gotten so far has been Dr. W's suggestion to go on Strattera rather than the stimulant medications. She says it is best for ADD without hyperactivity and also works very well in people who are weakest in non-verbal areas. I'm noticing consistently subtle changes every day. If I don't want to read anymore, if I don't want to lie in bed anymore, I can think about it, stop doing it and get up. It may sound weird, but I had immense difficulties doing so before. For 27 years, I would get into almost a trance state with books, tv, computer browsing and NOT be able to shake it even when I wanted to. It's something that I've even talked about in therapy because it was impairing my ability to manage my life and it isn't an obvious ADD sign. Lately though, I've been able to just stop, think about what I want to do and put down my book and do it. Phenomenal. I don't know why my psychiatrist had been so reluctant to try it. I'd brought it up a few times before; I really had to push it this time and emphasive the irritability that Adderal gave.

One more thing that Dr. W said was that my social skills difficulties as a kid were all ADD related. She said that because I've grown out of them in my twenties. In fact, and I want to do some research to see if this is true, Dr. W said that people with ADD mature about 30% slower than people without it. So in a lot of ways I'm like a 19 year old. Not in terms of my drinking or stupid decisions, but in terms of taking control of my life, figuring out what I want to do, social skillwise and personal empowerment. I don't really think of myself as a 19 year old, but in a lot of ways, I've only recently, in the past year or so, felt myself to be more like other people in terms of social abilities, knowing what I want to do and how to arrange my life the way I want.

Boundaries

When I went a week or so ago to be retested for ADD/NVLD, the neuropsychologist who tested me introduced herself as Dr. X. It felt very strange. The one who had tested me in college I also called Dr. W, but that didn't feel weird. Some of it I think is the age difference. Dr. W is 20+ years older than me; I met her when I was younger and she is an expert in her field. Dr. X is my age, could be a little older or a little younger.

I've spent several years doing psychology research since I graduated college and didn't call anybody except for two particular individuals by their title "Dr." and even then we'd often go by first names. It made me feel uncomfortable. I felt as if she were demarkating the differences between us with the title. Part of it is I am not comfortable in the patient role; I want to feel a working partnership between equals and my expertise to be respected. At the same time, I acknowledge that she is more of an expert in this area than I am. I just felt as if the title made the relationship hierarchical rather than, hmm, I'm not sure what the word is. Rather than non-hierarchical? Rather than a relationship between equals I guess. I felt as if we were unequal partners.

How much of this is guided by physical appearances I don't know. Dr. W inspires confidence. She has visible markings that separate her from me. We're not peers in any sense. Her "bedside," I guess "chairside" manner is better. She's a little warmer, D. X was a little more New Englandy. As part of it, I think that some of it is Dr. W's greater experience and knowledge allows her to focus more on her interactions with her patients and less on what she is doing. Dr. X is still more task oriented.

I'm going to keep a lot of this in mind when I have patients independently. I'm not sure how I'll use it, but I know it will be important.

Strattera

This is not a product placement, I promise. I don't do those. I've just been thinking a lot about taking Strattera.

I started Strattera on Wednesday. It's a selective norepinephrine reuptake inhibitor and is the only non-stimulant medication approved for ADD/ADHD (other non-stimulant drugs are prescribed off label). Over the past 9 years, I have worked my way through all the different permutations of Ritalin (ritalin, metadate, concerta), Adderal and Dexedrine. None have worked particularly well for me; I'm very sensitive. For adderal, most people use 20 or 30 mg over the course of a day; I use 2.5 mg - 5 mg over a day.

All of them make it difficult for me to socialize and talk to people. I feel on edge. Adderal, which has worked the best of all of them, makes me very short tempered and irritable. Dexedrine makes me this bizarre combination of spacy and overly focused and alert. Ritalin made me overly focused and alert.

Strattera so far seems like a miracle. I can sleep and eat on it. I'm not overly irritable (yet). This morning on my way in to school, I remembered to bring in a dermatology book for a friend to look at and my check for the Nursing Honor Society. Two days ago, as I was walking through the kitchen, I stopped and put away some glasses and tidied. Small things, but things that I would never have remembered or noticed to do.

Most people start at 40 mg for a while and then go up to 80, but because I've been so sensitive to the other medications, I was hesitant to do it. We decided to start at 25 mg for 5 days and then go up to 25 mg twice a day.

The geriatric psych drug axiom is to "start low, go slow." It's an axiom that I was eager to follow for this particular drug, although I am at the other end of the age spectrum. One of my friends was on it, and it gave her terrible mood swings-- she ended up throwing things at her gf during a fight. She's now on Adderal without that problem. Other horror stories are easily available on the net, so I've been hesitant. It's also a relatively new drug. The FDA approved it at the end of 2002. I like waiting several years before I put a new medication in my body, then it has a good chance to get recalled before I take it. So it is a little early for me to take it, but I think that I have exhausted the stimulant options and I really would like to have a little extra help.

Today was the first day I took 50 mg. I'm hoping that I won't start experiencing any of the serious side effects. It makes me nervous. As I'm seeing some beneficial effects now at 25 and minimal side effects, should I really go up? I did go up, but am not sure I feel like it was a great idea. Guess I'll find out.

Moods

Yesterday I was down all day. I didn't leave my house until 7 pm, when I was meeting my ex to study. I am realizing quite how upsetting getting retested was for me. There were such mixed feelings. I want to test well. I want to perform really well. But I also want to have a validation that there was a specific reason that I have the challenges I have. Otherwise I fall back into self-criticism, which isn't useful. Will this testing be useful? I hope so. The more I think about it, the more I wish I were diagnosed at a young age. I have some vivid painful memories of teachers telling me to try harder, that I could make it neat, make it pretty, put it together right, and I just couldn't.

There was one particular chemistry teacher I had who pulled me aside after class to ream me out for having turned in messy work. This was work that I had stayed up until two painfully typing (this was before typing was the norm) so it would be readable and I redid the graphs so many times so it would be neat. But it just wasn't able, no matter how many times I tried. I remember leaving class and trying not to cry.

There were other episodes, in other classes. People just don't get that while you can be smart in many ways, it may be beyond their capabilities to figure out how to center something on a page and plan it out. To hear again and again that I wasn't trying, that I could fit in if I wanted to, that they didn't understand why I wouldn't bring papers home, start projects earlier, just do my math homework, etc. You start doubting yourself, you label yourself, it's not healthy. Honestly, it has been really hard. I try, so hard, all the time, and it isn't seen because what I have to try at is what comes naturally to others and what they have to try at, comes easily to me.

So because I was so down yesterday (and let me tell you that job hunting in a tough market is adding to it. Any nurse managers out there looking for someone? Especially someone with a fair amount of experience in thoracic surgery/pulmonary medicine? Drop me a comment.) I called my therapist and made an extra appointment. I've been going every two weeks, but the past couple of weeks I've gone every week. This week I was going to go back to every two weeks, but I don't think it is such a good idea.

LD testing

I got tested today. While I have to go back in a few weeks for the report, it is sounding as if I do have ADD (without the H) and probably NVLD as well. I don't need accomodations in school, most of my visuospatial skills fell within the range of normal or low normal, but my verbal skills are so high that it is a huge discrepancy.
I was nervous doing the testing. I wanted to do well. I also wanted them to find something, so I could stop blaming myself, for being lazy, unmotivated, disorganized, scattered, lost. I could tell on the tests that I had improved in some ways from before. But there were still problems.
One suggestion they have is for me to use a 'cognitive coach.' There's a neuropsychologist who works with a lot of the NVLD kids at the local ivy league school and Dr. D thinks that will be a big help. I am willing to try it. It'll be interesting to read the full report. It's funny, I got tested initially in college, but never really dealt with any of it. Now it's as if I've grown up enough to really figure out what it means to me and how it affects me. 9 years later. How do kids who are diagnosed at age six ever make sense of it? Is it any easier or do they grow up feeling as if there is something wrong with them? I've felt that way a lot, although I'm moving beyond it now.