Medication Change

Posted: August 20, 2014 in ADHD - mine

About four months ago, I switched from my first med – Adderall 10Mg – to extended release. Right from the beginning, I didn’t think it was being as effective. It did seem to last longer, but there were little cracks here and there.

Mostly, it would be when something happened unexpectedly – I would drop a cup or miss an appointment. My immediate “go to” when I’m not medicated is “what is wrong with me?” When I’m taking meds, it’s a lot easier to just take it as “something I need to work on” rather than an indictment of my personality and abilities.

About 4 weeks ago, I switched to a higher dose of the extended release. That worked a lot better. My doctor and I had agreed on a 3 week trial. I called this morning to refill the prescription and was a little bit surprised. I thought I was taking 15Mg XR, but their notes said 25Mg XR. So, I refilled it for 25.

This whole thing is only being logged in the interest of sharing information with other folks who are reading the blog. One thing I’ve heard a lot is that you often have to try different medications, doses and schedules before you get it right. So, I just want to encourage anyone who’s on the fence about changing to not be afraid of it.

But, I realize that my decision was easy: I was only changing doses, not medications. I got very lucky that Adderall (our first attempt) worked for me and that I am just adjusting doses. Make sure you look into side effects, transitions, and learn as much as you can before you make any changes like this. You should trust your doctor, but you need to be educated as well. They can’t think of everything and they can’t know every last thing about you, so make sure you keep up your side of the bargain too.

Here’s a link to my performance at the 2014 ADDA Talent Show. Below are some notes about my process in getting there and various other ramblings. (It is a blog, after all!)

I’d sent out an early recording of the song to a handful of people I trust and I want to thank them for listening and giving me feedback. It was a really bad mix, but the point came across. My favorite comment came from Matt (I think): “this will really work well live”. ‘Nuff said.

How I Devised This  Year’s Show

Last year, I did my first performance at the ADDA 2013 Talent Show. I merged my “I Am Not Distracted…” performance with my song “Wonder Drug” and came up with something that worked pretty well.

I wanted to make it memorable, so I used my Halloween tie-dye body suit and my Five Miles More fedora as attention grabbers. It worked. Now, I can introduce myself as “the guy in the tie-dye tights” and people nod. Some of them take a step back but that’s OK.

Here’s a link if you’re interested: http://youtu.be/cj9fj8S7mBM?list=UUztsSmF64r24z0xwobAjN9w

This year, I set a more difficult task for myself: could I get the audience up on its feet and singing along with me? Actually, it wasn’t much of a risk – this is such a great group of people. I feel safe trying new things with them. And they didn’t let me down!

My Writing Process (in case you’re interested)

I started the process by coming up with a simple chorus. Something short, meaningful, and with a simple melody. “I feel alive, I’m with my Tribe” came up. I tried a dozen different melodies, tempos, and chord progressions and finally settled on one.

Then came the lyrics. I imagined myself on Friday night. We would have been at the end of the first full day of the conference. People would (hopefully!) be feeling those feelings I felt last year – “wow, I’m around people who ‘get’ me!” So, I put those things in the lyrics.

Then, guessing that some people might feel uncomfortable up and singing in a crowd, I added a last verse that acknowledge that.

Addition of the Executive Function Character

But, I didn’t want it to just be a song. So, I crafted a front end. I knew that I wanted to make reference to the tie-dye guy last year. It would be a chuckle to the folks who were in Detroit and a different kind of chuckle for new folks. (I like those multi-interpretative messages.) I also wanted to reflect a theme of the conference and make references to some of the sessions I’d been to.

That all came together when I saw how much emphasis was being put on the notions of “normal” and “abnormal”, or “knowing”, or “diversity”. I love these themes – they are what kept me in philosophy and theology and psychology.

So, I decided to go on stage as “Your Missing Executive Function” and explain that the EF is not really “missing” but it is “different”. That we don’t have to be “fixed” so we can be “normal”. That isn;t the goal at all.

The goal – and I heard this repeated in one way or another in many keynotes and sessions – is to be the most Authentic You that you can be. Shades of Kierkegaard and Gabriel Marcel! (See how I subtly work religion into there…?)

But, I had to recognize the pain and problems ADD/ADHD brings with it as well, so I had EF add some words of apology for the problems he brings with him.

Performing The Piece

I asked Dean Solden to introduced me as “a special appearance by your missing Executive Function”. That got a chuckle and I felt like I was on my way. My timing was sloppy at a couple of points, but by the time I got the song, it felt like things were going well.

Dean had invited several of the other performers to back him up vocally on the opening song “Medicate!” and I asked them to play percussion for me during “I’m With My Tribe”. They came on stage and were just great about it.

The Moment of Truth for me was “can I get them all to stand up?”

I was pretty sure that if they went with me that far, they would sing, so the Moment of Truth shifted from “will they sing?” to “will they stand up?” They did and things went great from there.

The Amazing Audience

What an amazing treat it is to be in front of a group like that. I think that any performer knows the audience is a huge part of the show. They can lift you up and keep you going or they can leave you high and dry, trying to figure out what you did wrong.

This audience is the most supportive and gracious I could imagine. And I really feel I owe it to them to put as much effort as I can in writing and polishing the material.

And if anyone reading this is considering jumping in next year and doing a piece at the Talent Show, I want to encourage you. Do it! Do it! Do it!

Tomorrow night at about this time, I’ll be giving my first webinar for ADDA. It’s very exciting but I’m doing a good job of keeping myself together for it.

The performance-and-discussion “Who Am I Living With?!?!” has really grown since the first time I did it at Crazy Wisdom (last October already!). The generous participation of so many individuals (ADD and non-ADD) has really helped me grow this into something helpful and useful.

The webinar will be a little different in that it doesn’t lend itself quite so much to the peer-group discussion format I like. Instead, I’ve rolled up a lot of what folks have said, a lot of what I’ve read, and a lot of what I’ve learned from interviewing people into a presentation format.

It was a great exercise.

In my usual discussions, I bring along all of this content but I keep it as background material. This time, I’ve merged and sifted through what I’ve learned. In that way, this one is more of a sharing of past sessions than active participation.

I’m still hoping to learn a lot in the Q & A at the end to bring forward to future groups.

Alan Brown is the moderator, which is also very exciting for me. His mission is public outreach – getting to the 85%. This is exactly where I think I can be the most useful too, so I’m looking forward to working with him.

During the “Who Am I Living With?!?!” sessions, I ask participants to anonymously submit written questions for us to talk about. Seeing and hearing each other’s questions is a good way to let us know we are not alone – knowing that I am not the only one dealing with a particular problem can be a big relief. It can give you a different perspective on the problem knowing that others are facing it too.

- I have read that those with ADHD tend to marry another with ADHD. If this is true, why might it be so?

- As a non-ADHD partner, how do I learn to relate and understand my ADHD partner’s experience/struggle?

- How do I handle the random energy? And to share a tip; a whiteboard worked for us.

During “Who Am I Living With?!?!” at the 2014 ADDA Conference, I asked participants to anonymously submit written questions for us to talk about.Seeing and hearing each other’s questions is a good way to let us know we are not alone – knowing that I am not the only one dealing with a particular problem can be a big relief. It can give you a different perspective on the problem knowing that others are facing it too.

- What’s the best way to support my partner’s ADD adventure without losing my patience?

- At times, we are unable to communicate with each other due to lack of patience. What can I do to clear my mind and open our channel of sharing and understanding?

- The ADDer always wants forgiveness, patience, understanding etc. How do they ever understand the feelings and ANGER of this rollercoaster cycle & what it does to the non-ADHD partner & how many times we HAVE forgiven and been patient?

- How can we EVER communciate properly when frequently they:

a. deny what they said

b. forgets what they said

c. comes back with “what I meant was…”!!

During “Who Am I Living With?!?!” at the 2014 ADDA Conference, I asked participants to anonymously submit written questions for us to talk about.

Seeing and hearing each other’s questions is a good way to let us know we are not alone – knowing that I am not the only one dealing with a particular problem can be a big relief. It can give you a different perspective on the problem knowing that others are facing it too.

- How do I get my husband out of the T.V. (I mean, he’s addicted – every night, every minute he’s home) to help around the house, like even picking up after himself, putting dishes in the dishwasher, putting away his clothes, tools, etc.?

- How can we have conversations without defenses? to problem solve, short answers, acknowledging that he’s listening to me, hearing my emotions?

- I don’t have ADHD. Why does my partner who has ADHD leave stuff all over the house causing clutter?

- How can I encourage my partner to realize that when you set a meeting time and place, in general no two people show up at exactly the same time, so one needs to wait (hopefully a short time) for the other? It’s not fair that it’s always other people waiting for them (If they arrive before the other, they will routinely take a  walk somewhere else)

- Does intellectual recognition of a problem make a difference?

Rick’s Keynote address was titled “Friendly Fire – How ADHD Advocates Undermine Each Other, The Need to Find Common Cause Amongst Our Many Voices”. I was very interested in this because I am formulating exactly how I understand ADHD. Is it a disability? Is it a gift? Is it a cognitive style?

(I’ve even been playing with the concept that we have it backwards. The real disability is NOT having ADHD. Being trapped in a life that is all about repetition, predictability, and organization. Where security is King, where curiosity is a problem and creativity is a waste of time. Where spending an extra 8 hours at the office is a virtue but clocking out right at 5 so you can go play guitar with your friends is “self-indulgent”.

I’m not suggesting that’s the answer, just giving you a peek into my head.)

Rick made reference to a long-anticipated “summit” some years back at a CHADD conference. Russell Barkley and Ned Hallowell would be sitting opposite each other to talk about their view of ADHD. Now, if you don’t know these names, I’ll give you a quick (and much too broad) introduction: Russell talks about ADHD as a problem, Ned talks about it as a gift.

The audience was expecting a knock-down, drag-out fight between opposing viewpoints. But they didn’t get it. What they got instead was a well-considered discussion between two men who knew that they were talking about the same thing from different points of view.

Rick went on to talk about how the problem of Knowing complicates discussion and can impede progress when dealing with complicated subjects. Taking hard-line positions and defending them to the death leads to competition, belittling and insulting of the other, and keeps us from exploring new areas and possibilities. (OK, that’s my spin on what he said, but I think it’s pretty close.)

This all made sense to me because it’s the same way I’ve learned to understand religions and philosophical systems. If we want to be honest about it, we are trying to describe the unknown and unknowable in language that is finite, that is culturally and historically proscribed and that is limited by human intellect.

Making the religious analogy also helped me understand why neither the “disability ” nor the “gift” model works for me, but the “cognitive style” language does. Now, I do know that both Barkley and Hallowell understand the limits of their language – it’s not just a disability or just a gift – but I find it helpful to use the language that works best for me. So, just as I think of religious systems as being “more or less spiritual” or “more or less ritualistic”, I think of mental styles as “more or less concerned with details” and “more or less concerned with the big picture”. 

There are a lot of other things tied in with these categories and they don’t nearly do justice to the pain and frustration ADHD can cause – or the the excitement and creativity often connected with ADHD – but that’s not my point. My point is to recognize that these categories are approximations and that they exist on a spectrum.

My spectrum is pretty broad, but then I’m working in broad strokes. I want people’s relationships to move in the direction of “better”, I’m not convinced I can get them to “good”, but I can help them move in the right direction. And I don’t care what words we use to talk about that. I’m not going to get tied up in “Knowing” and “Competing” and “Taking Positions”. I don’t think they’re helpful. And neither does Rick Green.

So, I guess I’m in the right place.