Ack! Tick tick tick tick

We have a friend of ours that has Tourette syndrome.  Not the more rare but highly publicized version that causes people to curse randomly, but the more common kind that just causes nervous ticks such as random movements or noises.  Why am I mentioning this?  Because at this moment I am sympathizing with that person in a rather unique way.  The medicine I am on sometimes causes me to have a sort of nervous tick.  My tick involves my tongue, I am either constantly rubbing the roof of my mouth or creating a sort of vacuum that causes my mouth to collect saliva.  Over time (a day or so) it will cause the beginning of a sore on my tongue.

I think the most frustrating thing for is that I know am doing it.  I know what will happen if I don't stop and yet somehow I am unable to control it.  I want to say to myself, "Just Stop!"  I feel like it should be that easy and yet I can't explain why its not.  I can force my tongue to relax and perhaps not do it for a moment but it feels like I'm going to choke.  Its like I've become acutely aware of my own swallowing and now I'm so conscious of it I'm screwing it up. Its just so frustrating not to have your body respond to your commands.  Overall though it is a little humbling because its just a glimpse of what other people with more severe neurological disorders go through.

ADHD

As you may or may not know I have ADHD.  I was diagnosed as kid and prescribed Ritalin.  I took it for a little while but I never liked the way it made me feel and my parents were never very consistent about making sure I took it.  After a few months they just stopped filling the Rx.  It almost felt like a fad.  Fast forward to today, or rather a few years ago.  I, much like my wife, am not very fond of taking medications.  The idea of being "tied" to something was very unappealing.  I imagined myself as a diabetic during the zombie apocalypse at the mercy of either brain eating zombies or insulin.  I didn't like the idea of being dependent on things.

One day after some conversation my wife made some very good points.  I never really thought of things being bad, but I didn't really have anything to compare it to.  In a way I was ignorant to the possibility of what could be.  What if things could be better?  A few doctor visits later I had an Rx for Stratera.  The doctor chose Stratera mainly because it's the only ADHD medication that is not a narcotic.

The first problem I had with Stratera was that it made me sort of nauseous, but I managed to work around that.  It did have an effect on my behavior but other people noticed the change long before I could perceive a difference.  I chose not to tell anyone that I was taking the medicine.  I wanted any observations made to be unbiased.  People were very used to me being excitable and hyper and the change in behavior was perceived as extreme.  Often times people thought that I was sad.  I tried to stay with the Stratera for as long as I could but in the end some very unusual side effects caused my doctor to discontinue the Stratera and prescribe Aderall XR.

Aderall was a huge difference from Stratera.  The nausea was gone and my attitude was not perceived as being sad or depressed.  I had some mania the very first time I took it which lead to non stop multi-day cleaning spree on my part, but afterwards the side effects subsided to random bad cases of dry mouth.  With the dry mouth sometimes came the habit of constantly rubbing my tongue against the roof of my mouth.  In retrospect it seems more like a tick.  When the problem persisted I would develop a sore in the middle of my tongue.  Usually just stopping the medication for 1 to 2 days would let my tongue heal and then I would continue without problem.  Later I had some issues with teeth grinding at night but it was nothing a night time retainer couldn't fix.

My job situation has been "odd" to say the least for almost the last year.  About 3 months after being at the clients it seemed like after more than a year of working just fine my medicine wasn't as effective.  I mentioned it a few times when I got my refills and the doctor offered to up my dosage.  I decided not to change anything for a while and see if  I could work on things from my end.  At one point I even wondered if the changes weren't due to a change in my Rx from name brand to a generic.  Finally after a few months I decided to talk to the doctor about changing my dose.

When I spoke to the doctor she mentioned a new drug called Vyvanse that many of her patients had been changing to.  After some discussion I decided to try it.  The first Rx was OK but it seemed very underpowered.  After some discussion she decided to change to a higher dosage twice a day.  After the dosage change I could definitely tell a difference.  The problem however was that the side effects seemed much more severe.  With Vyvanse I seemed to have wet mouth.  I find myself constantly carrying a mouthful of spit. Also that nervous tick with my tongue returned with a vengeance.

It got to the point that I couldn't take 2 pills a day for more than 2 or 3 days at a time before my symptoms caused me to either stop or only take one pill.  It also took me a while to realize but even with the full dose I still had this sense of apathy.  I think perhaps the problem I am having right now is one that the medicine can't help.  I wonder if its not just as effective as its always been, and its just that the issues I am having are interfering.

The side effects I am having make me think I'm taking too much.  I have figured out that I have to be careful what other medicines I take with it.  I have particularly bad allergies and I have found that if I am taking even just one pill in addition to allergy medicine the side effects can be worse faster.  Recently while doing a search for something I came across this article on Vyvanse.  Here is a small excerpt that caught my attention:

Do not stop taking lisdexamfetamine without talking to your doctor, especially if you have overused the medication. Your doctor will probably decrease your dose gradually and monitor you carefully during this time. You may develop severe depression and extreme tiredness if you suddenly stop taking lisdexamfetamine after overusing it.

Due to the side effects my dosages have been all over the place including some on again off again periods.  As  I mentioned in a previous blog my wife has recently observed what might be described as depression (though I wouldn't say severe).  I have also had more than one bout of what I would call extreme tiredness.  Not to mention about 15lbs of weight gain.  (of course that might have something to do with the cheesecake, oreos, cookies, and popsicles that I have charitably called meals recently)  Still, I wonder if my medicine isn't throwing me out of whack a little.

One more quick excerpt from the article under the serious side effects section:

• believing things that are not true
• feeling unusually suspicious of others

I must admit these two bullets gave me a chuckle. "Believing things that are not true", like the new Knight Rider series that got canceled was an excellent mini-series with great characters and stories that was unfairly canceled before its time?  "Feeling unusually suspicious of others", as opposed to a usual suspicion of other people?  I'm curious exactly how suspicious is unusually suspicious?  As my good friend Fox Mulder used to say, "Trust No One!"

I'm a Maniac Maniac!

Decent song. In all seriousness though, as far as I can tell based on my experience I believe I am in the middle of a manic episode. Nothing has changed that I know of but for whatever reason this particular instance seems just outside of medicinal control. I realized on the way to work today just how long its been since I've really been gripped by this particular feeling.

Mania is an interesting and complicated problem in my opinion. Feelings associated with problems like depression are generally negative. The person feels down, sad, or perhaps just tired. Depression doesn't "feel" good. Mania on the other hand is like a drug. You generally feel good, full of energy. You feel as though you can take on the world, and your mind feels as though its expanded and capable of tackling the mysteries of life. How do you turn away from that? Why would want to?

The downside? It's hard to see at first. The easiest negative to identify is "coming down". Mania like depression an extreme. When you are manic, especially for long periods of time it can make mania seem like a norm. This means when you finally run out of energy (and you will eventually) you return to equilibrium. The problem is equilibrium is still a step down from what you are used to so instead of associating the feeling with a norm it becomes negative. Many times this down step in turn leads to another down step that becomes depression. When you are "coming down" you are no longer manic so it very easy to rationalize that mania is not the problem since you don't feel bad during the actual episode.

With time and experience you begin to realize other negative impacts. Although your mind "feels as though its expanded" nothing you think about ever really seems to come to conclusion. Your thoughts resemble the clique ramblings of hippie pot smokers from tv sitcoms. Your thoughts are significant they just SEEM that way at the time. More energy, sounds great until try to quantify the results of your efforts. How many tasks did you bring to fruition during your episode? Sure I can tackle one hundred tasks for countless hours, but its rare that do very many of them justice.

As I write this I did not sleep last night at all and although I know that I am tired I can not feel it. It's taken me a long time just to recognize whats happening to me as its actually happening. Recognition is half the battle, now what the hell do I do? So far I don't believe that its out of hand, but isn't that what all addicts say? Am I an addict? I felt that rush of energy this morning and I remembered that feeling and how long it seems to have been. I suppose I just have to keep in mind that the higher you climb the farther you fall.

Oh something shiny!

Here's a good example of what its like for me. From what I have read it might be a good example of a lot of people with ADHD. Your average person reads or speaks a sentence in a pretty straight forward manner. For example the sentence: "The quick brown fox jumps right over the lazy dog". Normally you read or speak that sentence without too much thought. Here's and idea of how this sentence plays out for me.

"The quick" quick... its odd that's adverb and a noun, like the quick of your fingernail. People always say it cuts to the quick, I wonder where that comes from. I wonder if its spelled the same way. Do your toes have a quick on them too? Makes me think of that rabbit for Nestle Quick. They should change it from fox to rabbit. "brown fox" dunno but to me foxes should be red like on that movie the Fox and the Hound. I'm a hound dog! "jumps right" as though they could jump left? "over the lazy dog". You know, I know over is a preposition but I thought prepositional phrases were usually three words. I wonder if the adjective lazy changes it at all so its no longer a prepositional phrase. If it doesn't I wonder how many different adjectives you can add before it would change it? Is there a limit?

That probably seems like an exaggeration, but I can say from experience that sometimes the previous paragraph is pretty accurate. Realize that although you are reading it in a linear fashion many of thoughts in between the words of the sentence can happen at once. Often times it almost seems as though the act of reading or speaking is running on a completely different process than thinking allowing them to run in tandem. The problem is that you can quite literally speak without realizing exactly what your saying.

Another odd little quirk that I have and wonder if it might be typical of other people with ADHD. I have a problem with repetition of patterns. The best example I can think of at the moment would be something like guitar hero. Some songs have a very simple repeated pattern throughout the entire song. While I can master the pattern fairly quickly I can not continue it very long before completely messing it up. However I seem to have far less problems with the more complicated pieces of the songs. It occurred to me what the problem is. If I am doing something in repetition that does not require thought then my mind tends to wander. When that happens my hands get out of sync. I realize guitar hero is just a game and please understand I am using it only as an example. There are many other areas of my life that are affected by this problem.

I keep wondering if my problem is unique to me or indicative of other people with ADHD?

The frustration...

I'm going to share something with you. I have ADHD. Not the fun trendy every kid that doesn't behave must have ADHD, the real one. The reality is its not fun. Unlike some the problem has followed me into adulthood. As a child I loathed taking medicine of any kind, especially anything that was going to change the way I felt. Even into adulthood I have maintained much of my reluctance to rely on medicines. It was only within the past few years that fully began to see and understand the impact it was having not only on my work but my personal life. It was after some problems and a continued period of simply not being able to focus that I considered perhaps things could indeed be better. I spoke to my doctor and his first suggestion was Strattera, mainly because it was a non narcotic. Strattera kind of worked. Everyone else thought I was depressed but outwardly I was calmer. The problem was it had some very nasty side effects. At first I didn't say anything because I wanted to try and give it some time but after a while it became clear I would have to talk to the doctor. After Strattera he prescribed Adderall. Adderall really worked, it made a different kind of impact than Strattera. Adderall is a narcotic though so getting a prescription means a going to the Dr.'s office each month to pick it up. All was going well for me, I had been taking medicine for almost a year. Then one day I get a letter in the mail. My doctor an all the doctors in his group will no longer be prescribing my medication or maintenance pain medication. I called the office to better understand what this meant to me and what my options were. The options I was given was basically a list of Psychologists you can schedule an appointment with. Out of the list of about 10 I was able to find two that would actually take a new client and prescribe medication. The new problem? Neither of them had an appointment available for months on end. I only had so many pills so I inquired what I was supposed to do until then? The responses all boiled down to "Your pretty much screwed then huh." No one would prescribe the medicine without seeing me first to access if I needed it or not. No one seemed to care that there were side effects associated with starting and stopping the medication. I had to make do and I did the best I could. No it wasn't the end of the world or anything but yes it was frustrating and yes it had an impact. So then I meet with a psychologist and I have to admit internally I was offended as she looked at me and asked me all kinds of questions. Its not that mind answering them. I don't. It was that she was attempting to decide whether or not I should have the medicine I have been on for a year or not. She was deciding whether I should have it, something else, or perhaps nothing at all. Even though the determination had already been made that I had ADHD, and a medicine had already been prescribed and was working well. She would make this single determination. In the end I was able to get the prescription again. This time though with an added stipulation. Now I needed to see her for 15 minutes each month to get the next prescription. Not because she could determine so much in 15 minutes, its because then you can bill an office call with all the associated charges. It was a sham but it was the apparent "song and dance" I would have to do. So that is what I have done for many months now, close to a year. A few days ago I get a letter in the mail. My psychologist is no longer practicing, sorry. So I call up the office to find out what I need to do now. Since she has left they have divided her case load. A nurse practitioner that can write scripts and a psychologist are seeing her patients until they find a replacement. What does this mean? Well in order to get my next prescription I need to see the nurse practitioner. Oh but wait she doesn't have an open appointment until a month or so from now. Guess what? I'm almost out of pills again. She doesn't feel right writing the script however without seeing me first. (Notice the pattern) So now I need to meet with a nurse practitioner who will once again review my case and make summary judgement whether or not to continue. Additionally I will just have to suck up any medicine gaps in between. If she doesn't feel comfortable writing the prescription then I have to go and find another psychologist, and wait some more until they make a judgement. The icing on the cake? Even after she agrees to write the prescription I will still need to see someone else yet again once they find a permanent replacement. That person will also have to make a judgement about whether to continue. Why do I feel like the only person that sees this as a big deal? If I had diabetes or some other disease and for whatever reason my doctor changed they wouldn't withhold my medicine until I came in so they could determine if I really had diabetes or not? A diagnosis has been made. Are they free to question it? Sure, but not at the expense of your current treatment. What gives them that right? The right to say I don't trust anyone that has given you a diagnosis so I'm going to act like you you never had one and then I'll decide whats best. Why do I feel like the only person that thinks its insane that it seems easier and cheaper to buy a medicine through some online pharmacy than it is to get it through your own doctor after you have already been diagnosed? Why is this OK damnit! No, despite appearances I'm not raving mad. I am frustrated and indignant. I'm tired of being treated like a drug dealer, or a some easy ticket for some free insurance money. Perhaps the root of my frustration is that I just don't know what to do about it. I basically just have to accept it and go on.