Tuesday, November 03, 2009

I Thought It Was All My Fault (Reflections on the Past 6 Weeks)

The past 6 weeks have changed everything. Maybe it is more accurate to say that the past 6 weeks have made me realize and really SEE how everything has already changed. To take us back a little further, I was diagnosed by my headache doctor with Adult A.D.D. about 4 months ago. The idea that I had this disorder was secondary to what he was trying to accomplish in my treatment. He and his "boss," a renowned headache specialist in the Chicago area named Lawrence Robbins (I recommend their practice to any who are suffering beyond what their local doc can comprehend!), have done research on treating certain migraine patients with stimulant drugs. Without boring everyone to death with all their medical findings (although I can share if anyone is interested), they have found that patients who historically have not responded enough or at all to traditional, everyday preventative medication (some of the commonly-used ones include blood pressure meds and anti-seizure meds ... also sometimes anti-depressants) often get relief from taking a moderate dose of a stimulant. A stimulant is something like Ritalin or Adderall, which are drugs commonly used to treat children and adults with ADD or ADHD.

Well, part of the reason I went to these doctors was because they are constantly doing new studies like this and updating their research. So I have always gone to my appointments with an open mind, ready and willing to try just about anything that will alleviate the frequency and intensity of my painful migraine episodes. When the doctor suggested treatment with Adderall, I was like, sure! cool! And I don't live under a rock you know; I have heard that college kids abuse these drugs to get better grades, because part of what they do is help one concentrate for a long period of time. Personally, I am unclear how these medications help someone that does NOT have the condition (it seems to be it would be different than in someone who IS suffering from the mixed up chemicals of HAVING it). But I recall thinking, hey, I can use all the help I can get with studying and school!

Here's the thing. And it's actually very sad to me. I have always done well in school. I never had the Hyperactivity thing going on, and indeed, that is not part of my Adult diagnosis. I only suffer from the attention thing. Anyway, all my life I got outstanding grades, I mean, better than average. I got thisclose to a perfect score on my ACT test in high school, and I was always kicking ass at those standardized tests they gave periodically. I made friends easily, at least back when there was a social structure to be found in school and sports (now is more difficult, but that's for another post). I did not display any behavior problems, although I have come to believe very strongly that my lack of acting out was more a trained fear of rage and retribution born of my father's parenting. But that's also another post.

The bottom line is that as a kid, I either did not have ADD or, more likely, I did not display it in the most common ways. Or my intelligence masked the trouble I was having. You know, I was smart enough to do very well without studying in any organized manner; I remember that. When I got to college and studying was pretty much required no matter how intelligent one was, I really suffered. I almost flunked out my first two years! Meanwhile, people who had not done particularly well in lower grades were acing college, because they had carefully honed their study skills. I remember being around 19, sitting in my bedroom with piles of notes and reading to go over for exams. I would read MAYBE a page of something, and then I would be compelled to fiddle with my radio station, to suddenly switch and read a magazine article that was lying nearby, or to re-arrange my book shelf. Now, I know that every one of us procrastinates at tasks sometimes, especially when those tasks are not particularly interesting or "fun" to us. But my lack of focus was crippling, and I didn't understand that it could be different. As is my way with so many things, I just beat myself up and berated myself: Why can't you pay attention?! Why can't you finish reading like the smarter kids do!? How are you going to get a better grade on this test!? I truly have always believed that I was just lazy. I believed that when I didn't finish the things I wanted to do, or didn't reach the goals I set for myself, it had to be because I'm just un-disciplined, lazy, too focused on "just having fun" or partying (in college). It never even came CLOSE to crossing my mind that this was not my fault. It never even entered my peripheral thinking that maybe doing "better" WAS possible but that it would take TREATMENT. All my life I had been a pretty "good" kid, a good student, no trouble, no failing out, no detentions (well, hardly any), etc. People assume that when a kid like that gets into trouble with jobs or homework or whatever, it must be that they aren't applying themselves, right? And, as my diagnosis suggests, these problems started to affect me most strongly after the age of 18. So I had grown up without being diagnosed with any problem. I think people figure any issues with attention or other mental/emotional stuff are pretty much "discovered" by that time, with a few exceptions.

(I'm changing the font color so you don't get too bored!). I want to create an interlude here and say that I do NOT blame my parents or even my teachers. I certainly don't blame my friends. I DO, however, blame the almost-countless doctors I have seen for various reasons since I was 18. Because get this: not ONE doctor, be it a family physician or a neurologist or a (hello) psychiatrist - all of whom I have seen multiples of! - EVER even ASKED me about these symptoms or the possibility of having this. I mean, what did they effin' THINK was wrong?! I complained routinely of being unable to concentrate, feeling bored even while doing things that I really love, and so many little details that were beginning to chip away at the quality of my life and my personality. And guess what they came up with? Depression. I was diagnosed with Depression at age 19 and have carried that sad label in the back of my mind ever since.

Actually, it was just that one doctor, that one day when I was 19 years old, who made the diagnosis. After that, I would simply repeat what he had said and found to other doctors, who would then treat me accordingly. No one questioned it. No one really did anything. Now, let me say here that I HAVE been depressed and probably was very depressed at the time of that diagnosis. I suffered the loss of my first love somewhere around my 20th birthday (so things were going downhill already), my family broke up (divorce and all of that) soon after, and I was going through a lonely time wherein all my friends had moved away to colleges in other cities. I surely won't describe all the times I have despaired since then, but yes, I think it is/was accurate to diagnose me with some kind of Depression. The seemingly-best fit in my opinion was when the therapist who treated me the longest said that I suffer from Dysthymia. In my lay-woman's terms, that means a generally-low feeling and mood that is present most of the time. It's in contrast to those who suffer more cyclical and severe swings toward Depression, even feeling suicidal. I'm not a doctor, so I won't try to define these things here. Suffice to say that yes, I've been depressed, but I think the Depression was a SYMPTOM of something else, rather than a cause.

So what does all this mean for the here and now? Well, many things are happening! As I've said, the past 6 weeks have brought unprecedented improvement in my migraines! Last week I had a pretty bad setback, but I have already bounced back from that. My doc helped me put a few things in place to try and nip that kind of headache in the bud if/when it comes again. Let's hope and pray! After being on a low dose of Adderall for the first 8 weeks, the doctor raised me another 10 mg. I have to tell you, THAT VERY DAY, I felt better. And when I say BETTER, the word encompasses so many things that I had forgotten even needed improvement!!!

As far as the migraines go, WOW. In combination with my other medications (it has taken years and obviously many drs to get the right mix), this additional med seems to have worked miracles, truly. I generally hate the idea of and shrink away from decorating ANY drug with MIRACLE status. I mean, isn't that what drug and diet pill companies are constantly trying to do with our minds? It's always a new, miracle, cure-all pill that's being marketed to us, and I really hate that shit. I have had my share of doctors who are clearly "in the pocket" of drug companies and not treating me with my best interests at the forefront. And I hate when I'm online and constantly being offered pills for everything from penis enlargement (yes, me) to weight-loss to yes, A.D.D. So I want to make it clear that I have experienced enough to KNOW FOR SURE that every individual is different and thus responds differently to medications and combinations of them and doses. Please don't take this blog post as my "advertising" my new drug. Rather, I'm sharing what has worked for ME personally and I continue to see my doc once a month to control and maintain what is happening.

All that being said, let's get (finally) to the Good Stuff! I cannot effing BELIEVE it took this long for someone to save me, help me, find OUT for God's sake what I have suffered from, that I'm struggling so hard against A.D.D., and it didn't have to be that way. It makes me so sad. I know I haven't told you the whole basis for my doctor's diagnosis nor all the ways that I suffered, but trust me, it's legit. Another time, I'll post about the craziness of living with un-treated ADD. And it WAS crazy! I have kept so many things to myself, thinking more and more that I was just "weird" and yes, "lazy" and had so many odd idiosyncrasies. Well, I might be weird, but at least now I'm happy and productive and weird :)

So it is looking like we have these migraines "on the run," as my doctor likes to say. Apparently, it is most common for women who suffer these headaches to suffer most severely between the ages of 28 and Menopause. He believes that, unfortunately, we are in the thick of my suffering now, but obviously, what better time for us to find things that really work? As I've shared here before, I have been taking an average of 2 Imitrex tablets (50 mg each) PER DAY for about a year now. Those of you who are in the medical or pharmaceutical field, or if you have migraines too, KNOW this is outrageously excessive. It's expensive, it's hard on the cardiovascular system, and I mean, taking that much of anything that is meant to be used SO much less, is just bad. I am fortunate in that I'm still young enough to "get away" with this for now (at least, my last two doctors have been in agreement about that). But one cannot stay with such a plan forever, that is for sure. So imagine my delight at counting the days in the past month when my head pain was so far gone that I did not have to take ANY Imitrex!!!! There were 7 days! Doesn't sound like much maybe, and they were not 7 days in a row (my poor doctor's face fell when I informed him of that fact) ... but nevertheless, it is an amazing improvement. We just "tweaked" the dose of one of my other everday meds, so over the next month we are hoping for even better results in the headache department. I am so excited! I have so much hope! These are feelings that I have not genuinely felt about any migraine treatment in YEARS. This alone has literally changed my life.

But the A.D.D. diagnosis/discovery has been an additional change. I feel like I cannot even begin to itemize the ways that my life is different and wonderful these days! The ongoing Migraine Saga had gotten me waaaay down, it's true. And issues with that side dish of Depression have plagued many of my would-be better days. But since beginning treatment for A.D.D., every moment is different! And the beauty of it is, I don't NOTICE every grueling, tedious moment of life (and they don't feel grueling and tedious!). When I went to visit my Godmother last month, she said that she could see the "real" me was back. I asked her when she had noticed that I had changed, or was "gone," not my true self (because many other people in my life made similar observations, that my real self was just GONE over the past year). She thought about it and shared with me that she hadn't even realized I wasn't my self until she saw me "come back." What a wonderful thing to hear! Because that is how I've been feeling! I am enjoying my studies once again. I have gotten good grades and been able to maintain my focus on what I'm learning. I can drive in the car and enjoy a song or a radio station without constantly switching music or stations, even when what had been on was perfectly fine (that's something I used to do incessantly).

It's difficult for me to describe the things that have changed and made me so happy; I am aware of skeptics who are quick to say "THAT isn't A.D.D., that's just (blank)." But I know the facts now. I was sick and had completely lost my joy and my personality. I mean, spending time alone "with" myself, I had even begun to see it. I have lost friends with whom I wanted to stay in touch! I have lost jobs (the struggle in the workplace for someone with adult ADD is unbearable ... another time, I'll write about it), lost relationships, and lost happiness. I'm not saying that ADD is the direct and singular cause for all of this or that the medicine treatment is the cure-all. But I am saying that finding out what was truly going on, and being able to treat it while also treating the migraines that have plagued me for my entire adult life ... Well, THAT has been a beautiful journey.

Finally, I have to share something that will probably cause shock and awe in those of you who know me best. I am LOOKING FORWARD to the next 6 weeks and the holidays!!!! HA HA! If you know me at all, you know me as someone who is always pretty bah-humbug, who always hates everything to do with the winter and snow and cold and Christmas trees and ALLLLL of it. I have often repeated the statement that January 2 is my favorite day of the year! It was true, because it was the farthest we ever are from the holidays. My reasons for being so miserable were many. But this year is going to be so different, and it's much to do with what I've written about here (and a few other lucky breaks that have come my way recently!).

This year, I am up for everything, people! I am gonna hit every single party and event; hopefully few (or NO) migraines will stand in my way! I might even decorate a Christmas tree! I will drink Egg Nog! I will spend time with family! I get to be involved in the MEANING of the season if I choose to do so (and I do!). I am so excited. Who knows what might happen? You might even catch me trudging in my boots through the snow! Or sledding! It's better than being a new person. I am finding ME again.

2 comments:

Girlbert said...

WOW. Powerful post, Tanya. I am so happy for you, so proud of you for sharing, and just so relieved for you. It is really an amazing thing to find the right mix of doctors, guidance, and treatment...

THANK YOU. You are going to help so many by sharing your story. This is why we write. ;-)

XOXO

KaKe said...

Let me start by saying, man I always think I want to write about this and that which would wind up to be long posts like yours...lol.. but as soon as I start I get lazy...lol
2ndly! I'm so happy to hear that you are feeling and doing so much better! You aren't introducing a new drug to me. Its actually my drug of choice lately...you know me the addict. I gave up the other stuff, but still feel the need for speed...no its not prescribed but 2 family members are shhhhh.
It seems that although you felt you had some problems growing up all in all you over came your "laziness" and still did very good with school and what not. I believe in ADD I also feel that some Dr's are to quick to diagnose kids these days. Making some parents less responsible... now not all cases mind you...but thats just my opinion. They say that if you have it as a child you usually grow out of it. Did your doc say that this is something that could possibly diminish after a certain length of treatment? You do seem much happier and ready to take on the world.... gosh do you remember when we first discovered each other some 4-5yrs ago? On your old old blog...I had thought that you were a junkie..lol and asked if you were on the H... but u were just mixing meds to make yourself feel better...look how far you've come! U still on myspace? I think I write more on that blog than on kake.