Wednesday, May 25, 2005

Neurological Dominos: Who Needs Psychiatrists Anyway?

Simplifying Diagnosis

If you suffer from neurological disabilities or ailments, chances are you've had a hard time getting diagnosed or isolating the trouble areas. The problem is that the neurological mind can be like a very complicated sequence of dominoes. Set one domino in motion and soon several branches come crashing down. It is hard to sort out which domino caused what when they're all jumbled together.

The Problem: Things Can Get Complicated

In my case, I received different diagnoses from multiple doctors over the years. I suspect your experience has been similar. Sometimes I wondered if they diagnosed me depending on their pet neurosis1, and other times I wondered if their diagnoses differed because I was emphasizing different problems2. For example, one doctor would ask me constantly if I had delusions of grandeur. Apparently he was convinced I was bipolar even though I wasn't. Maybe it was my Napoleon hat that prompted him...

Other times, when my ADD was a pain in the butt, I would charge into the doctor's office, virtually whip my brain out onto the table and say, "Fix it!" Sometimes the ticking was the issue irritating me most. If I thought I could yank out my neural network right in the office and have the doc bang on it a bit to get results I would have been sorely tempted. It wouldn't surprise me that the diagnosis I received then would be tic centric. If depression was the current culprit, I tended to stay home listening to angry, gothic music in the dark. No, I'm just teasing. I do listen to ethereal darkwave, but only if I'm wearing bright happy colors. Cross my heart. Still, I've had enough lousy experiences with doctor's and their pet neuroses that I have tended to shy away from seeing them over the years. Let's face it. They haven't helped me. In fact, I tic like a Mexican Jumping Bean when I'm tired or stressed because the meds they gave me broke my mind thirteen years ago. After the last three weeks of insane motor tic disfunction with uncontrollable vocal tics I would say I haven't gotten any better.

Since this blog is about finding humor in my disabilities while searching for solutions, I'll share the following with you to illustrate that point:
My family tries very hard to respect me and not laugh when I vocal tic. They know I find the experience excruciatingly embarrassing. Usually, my vocal tics are nonsense sounds that can be ignored, but sometimes they are downright silly and cause my family to giggle a bit. However, nothing could have kept a smile off their faces when I proclaimed "Monkey!" in the middle of dinner a few weeks ago. Not sure where that one came from. I don't usually enunciate actual words. Even I had a laugh over that one. For days my six year old hovered around me while I vocally ticked hoping I would say it again. Thankfully, I disappointed her.

What To Do About It

So how does one go about narrowing the problem down? Observation, observation, observation. Jot down notes in your PDA3. Get a pad of paper and a pen and take notes. Have a daily discourse about the problem and the symptoms surrounding it with your significant other. Hopefully that's not your dog, Booboo. You'll need a flesh and blood individual who has the patience and interest to help you map your particular problem out. If you must go online to find this helpmeet try to stick to relevant forums and stay away from IRC chat rooms.

"Can anybody help me? I've got a problem," you trustingly type.
"RTFM, luser!" replies D4rk5†a1n
"RTFM?" you timidly ask.
D4rk5†a1n slaps you with a large manual
"ROFLACMEO" offers Carnivoyeur
You have just been booted from #31337w4r3z: Get a life!
(The cursor blinks at you mockingly

But I digress. Did you notice above that I tend to tic when I'm tired or stressed? Well, I happen to suffer from a triple whammy of Sleepless Psychasthenia: Insomnia, Sleep Apnea, and Light Sleeping. In essence I have a hard time wanting to go to sleep, falling asleep, and staying asleep. I get by on 3-4 hours of good sleep a night, thanks to the aid of a CPAP - a breathing apparatus that keeps my throat from collapsing by forcing air through a face mask. What this means is that I'm one tired puppy most of the time. Consequently, I tic a lot. And since I'm only stressed when I haven't been sleeping well, sleep, therefor, is the domino that is setting the tics in motion.

Once Identified, the Solution is Obvious

If this is so obvious, why didn't I solve this before? Because identifying the problem isn't the same thing as knowing it's solution. It is easy to fall into a rut and difficult to rethink our problems in new ways. Also, it is hard to recognize the major cause when you have so many symptoms. I have realized for years that sleep needs to happen in order for me to have maximum control over my AD/HD, ticking, and depression. The trouble is that I'm a raving insomniac who has to don a face covering apparatus in order to breathe at night - sort of like Darth Vader. My journey to the dark side is complete when I awake all fresh and grumpy. Is it any wonder why I think of other things to do when it's time to go to bed? However, all is not lost. Knowing is half the battle. The other half may be like going uphill through a gauntlet of archers, but once you have identified one of the key dominos you are able to improve your life.

For my solution I started taking melatonin4 again. It didn't work for me in the past because I would either take it too early and fight through it to finish my work, take it too late and have a hard time waking up, or forget to take it at all. But I'm tired enough of being tired to want to make it work this time, and frankly I don't know what else to do. Sleep medication like Ambien is rife with dangers for me. Remind me to detail my hallucinogenic night on Ambien some time. My love for modern medicine is paled only by my love for eye surgery without sedation. At any rate, already I have pushed my bedtime back and increased my sleep time to about six hours. And I haven't been ticking as much as a result. Eventually, I won't need the melatonin anymore. At least that's the goal. Make some goals of your own and share your results.

Coping Strategies:

1) If you are trying to find a solution to your troubles, nothing can derail that process faster than meeting with a doctor or psychologist who has a pet psychosis. They see everything in terms of this psychosis. This can also work in reverse. For instance, there are those who don't believe that AD/HD is a real condition. So these doctors will try to interpret your symptoms with this filtered bias. This is why getting a second opinion is so very crucial before embracing a diagnosis and beginning medication for it. If only I had done that thirteen years ago I may have not ever taken Zoloft and Desoxyn and would most likely have never developed Chronic Motor Tic Disorder.

2) In the beginning what irritated me most was what I went to see the doctor about. After a few years of useless treatments and no progress I began to make a list of all my ailments and diagnoses. This was the smartest thing I could have done as it helped me quickly identify what were the most important problems to address. This would explain why my 30's have been so much more productive than my 20's even dreamed of being. I identified my sleep apnea as the greatest problem. Having my deviated septum corrected and getting a CPAP transformed my life. Well, that's a bit dramatic. It wasn't like night to day. It was more like night to dawn, but at least I can see where I'm going now.

3) How could I ever survive without loud, annoying PDAs beeping at me all day long? I wouldn't remember a blessed thing, that's for sure. I faithfully organize my To Do list and go over the next day's appointments every night before I go to bed. This is how I reign my AD/HD in.. I highly recommend the Zire72. Since it plays MP3s it has a much louder speaker than other PDAs. This makes for piercing alarms that I can hear all over my home. In addition, I sync my calendar with my iPod so that it beeps at me too in case I am away from my Zire72.

4) When trying alternative medicines, don't naively assume that "natural" means "safe". After all, every Spring elm trees try to kill me and cottonwood trees try to put me in the hospital, figuratively speaking of course. Unless Elm Ents are mischieviously shaking their pollen rich branches outside my bedroom window while I sleep. I suppose that's possible. At any rate, alternative medicine can come with some similarly tall tales so experiment cautiously. In this case, melatonin seemed to work for me as long as I used it properly and wisely. I do not intend to stay on it for long - just long enough to develop a new sleeping schedule.