Tuesday, March 6, 2012

Medication Exploration

One of the many many perks of living with Tourette Syndrome is the copious amounts of medications that doctors want you to try. I have severe reactions to medications, if there is a side effect listed I will get it. Oh? Only 5% of people on this medication get that random, totally unheard of side effect? Don’t worry, I’ll get it. I have tried many medications, all to no avail.

When I was originally diagnosed – with Chronic Tic Disorder – they put me on Tenex, which is a anti-hypertensive (blood pressure medication). They did this because I was also on anti-anxiety medication at the time and anything else they prescribed me would interfere with the medication. I stayed on Tenex for a few months, no bad side effects, but no improvements and so the next time I went to the doctor they sent me to a psychiatrist to try and work around the anti-anxiety medications and find a solution for my tics.

There is a reason I dislike and distrust doctors, and that man was the catalyst. He completely blew off anything the doctors had said about my Tourette’s, decided my tics were a manifestation of severe anxiety and instructed me to double the dose of anti-anxiety meds I was on. In addition to that, every time I saw him I had to get on a scale so he could “document how the medication was affecting me”. Um… the pills are making me fat… do you really need documentation of that? In 6 months of anti-anxiety pills I gained 50 pounds.

As if that weren’t enough to send me running for the hills, every time I saw him we had the following conversation:

          Doctor: “So, do you have a boyfriend?”
          Me: “No.”
          Doctor: “Have you ever had a boyfriend?”
          Me: “No.”
          Doctor: “Why do you think that is?”
          Me: “…”

I saw him a total of three times.

After I got myself off of the anti-anxiety meds it opened a whole new world of poisons medications to try. They put me on Clonidine next, another anti-hypertensive, this time in a snazzy patch-form. I told nosy people that I was trying to quit smoking. That lasted a month or so until my next visit when the tech became very alarmed at all of the red spots on my shoulders and chest from where I had put the patches. Oops. It took weeks after getting off the medication for the spots to all completely fade and months until I could go out in the sun without getting white spots all over from where the patches had been.

Next, we tried some anti-psychotics. Orap did nothing except make me gain more weight and Risperdal knocked me out on the couch for 48-hours with the worst migraine I have ever had. The Risperdal was the last straw. I think I took 2 pills total (maybe totaling a milligram of the medication) before I refused to take anything else. They continued bouncing me around to some other doctors before put my foot down and refused to talk to doctors as well.

Until this past year.

Somebody asked me in a recent presentation I gave, what made me decide to pursue receiving a service dog. It was the same thing that prompted me to get under a doctor’s care again for the first time in four years. Plain and simple, I hurt myself. Badly. In June 2011, I had a monstrous tic attack that wouldn’t have been so bad, had I not bashed my head into an end table near the couch. I saw stars, literally. I live by myself (for a lot of Tourette’s-related reasons) and the only person staying in Spokane over the summer that I would have felt comfortable calling up at 10:30 at night to take me to the ER was out of town that week. I had a complete hysterical meltdown for about an hour, looked up concussion symptoms on the internet, took a shower (and all of my medication) and passed out. Not the smartest move.

Now, of course I can admit that what I did was stupid and dangerous. I had a full-blown concussion; my only-saving grace was that I didn’t lose consciousness. Dilated pupils? Check. Dizziness? Check. Nausea? Check. Confusion? Check. Splitting head-ache? Check. Like I said, probably not the best move for me to self-medicate and go to sleep. I had concussion-like symptoms for probably a month after; severe aphasia (inability to recall words), general confusion (stuff like putting my keys or cell phone somewhere and then promptly forgetting where they were), a chronic, month-long migraine coupled with severe light-sensitivity, and dizziness that endured about a week after the concussion.

Once I had a brain that was somewhat functional again I was scared. And rightly so. Not only had I acted completely idiotically in regards to my own health, but there was a good chance of that happening again. And there was a good chance it could happen somewhere in public. And what was I supposed to do when I suddenly began head-banging so bad I couldn’t walk straight making me look intoxicated, when I knocked myself to the ground at school and concussed myself, or when I started smashing my fists into my forehead for no apparent reason. I’d be in serious trouble if I did that in public. I’ve heard stories of people being forcibly removed from places for tics less drastic than that and I was scared that if I hurt myself in public I wouldn’t have the ability to explain that I needed help. Or that tics that aren’t that severe might look really bad and I would end up in a situation trying to convince somebody I was fine and didn’t need medical help (some of my tics look like – to somebody without much experience in neurological disorders – that I am about to seize, or am having a seizure).

The dog will assist in these situations, but I was also curious what a doctor who specialized in Tourette Syndrome might have to say about medication options that could decrease the likelihood of instances like I just described happening.

Enter Topamax. A anti-convulsant; a medication for seizures. Also affectionally called Dopeymax. Which causes a side-effect that my neurologist referred to as a “Topa-dopa” or the “Topa-coma”. Kinda starts sending up red flags. But I tried it. The neurologist assured me that only about 5% of people get that side effect. Two-weeks into taking the medication I began to forget things, where I had put my cell phone, errands I needed to run, etc. After 3-weeks, not only was I experiencing aphasia, I began to substitute similar words in for words I had suddenly forgotten. I was calling a “horse” a “dog”.  I was calling my students by the wrong names and couldn't carry on a simple conversation without getting my words jumbled up.  I was making mistakes at work, forgetting words and phrases I need to use while tutoring. And then I began dropping syllables out of words; 3-syllable words became 2-syllable words. I’d start a word and never finish it while talking. I was stupid.

I stopped talking the pills within a month and on my next visit to the neurologist he suggested I try Keppra, another anti-convulsant. This one he said, showed promise in studies that one doctor had done. Once he started telling me about the studies though, I was a little skeptical; there were only two studies done on this medication in use for tic disorders – one study was not so successful, one kind of was – and there were less than 40 participants in both studies combined. The medication was so new for trying to treat Tourette Syndrome, that there were no dosage recommendations. Just to take the same dose an adult with epilepsy would take. It’s well tolerated though, the neurologist told me. A week on Keppra and I was so dizzy I would almost be falling over while walking and I was so nauseous I didn’t want to eat. Every time I increased the dosage, trying to get to 1000mg, I would feel sick for a week. When I got to 750mg though, that never-ending nausea didn’t go away. I was so tired that I would hit snooze for an hour some mornings trying to wake up. I couldn’t do it anymore; and the fact that my tics were as present as ever didn’t really help matters. I got off the medication about a month ago and I am finally, as late as this past week, feeling close to my old self.

I cleaned my apartment this weekend after having multiple weekends in a row where just going to the grocery store or to dinner with a friend would wipe me out. I cooked – something I love to do, but haven’t in a while – a lot of meals to get me through the week and I really got busy crocheting. A month after stopping medication I finally feel like it is completely out of my system. My head feels less fuzzy and I am able to wake up in the mornings somewhat rested, as opposed to passing out at 9 o’clock at night, waking up at 7, and feeling like I didn’t get any sleep.

I’ve always cautioned my family that I would rather tic and be clear headed than be on medication that made me fuzzy and drowsy, even if it helped my tics. Thankfully, I have never been in a situation where I have had to choose between the two. People who aren’t really on board with the service dog (or service dogs for anybody for that matter) ask things like, why don’t you just take medication to fix it?  Or why don’t people with mobility problems just use a cane instead of a dog? Even if they told me that medication xyz would “fix” my Tourette’s; I would be hesitant to try it. There is a medication that is used to treat Huntington’s Chorea that is currently being explored with uses in tic disorders caused by other medications and Tourette Syndrome. I am not going to try it though – the medication decreases production of seratonin and dopamine in the brain and has a very high rate of depression and suicide on the medication. I know what it is like to be depressed; and I am not willing to risk causing depression on the chance that this medication would work. It isn’t worth it to me.  Continuing to put medication after medication into my body and subjecting myself to months worth of side effects isn't worth it.

The problem with our society is that we view disabilities as something that needs “fixing”. That because you don’t fit the societal definition of “normal” you need to adapt to fit in. I’m not saying that everybody has to change their way of doing things to fit mine; or even that people should do anything to make life easier for me. But you do have to accept me; disability and all. You don’t get to discriminate against me because I have a disability and you don’t. I have a right to the same things as any other able-bodied person. Just because I’m disruptive in a restaurant, doesn’t mean I can be seated away from the rest of the customers. I don’t have to sit in handicapped seating at a movie theater; I have a right to sit with everybody else and tic. Legally, they have to accommodate my future service dog on an airplane, even though it’s going to be a big dog. That isn’t getting special treatment; that’s adapting the way things are done so I can do the same things a neurotypical person can do. If you don’t have to change your life to fit everyone else’s simply because you had the good fortune of being born with a brain and body that worked, then I shouldn’t have to either. A service dog is not a last resort. I am within my right to decline anymore medical treatment in lieu of a service dog. That would have been my right 5 medications ago. The only medical condition in which a doctor has to approve a service dog (which is very different than an Emotional Support animal) is visual impairment; there is a degree to which you need to be affected after medical treatment to qualify you for a service dog. It is the only disability that you have to have already turned to medical treatment to fix before qualifying for a service dog.  Thankfully, the way the laws are written now, nobody can tell me it isn't within my right to get a dog because I'm not "disabled enough" or because I should have exhausted all medication options and surgeries first.  Nobody can tell me to put anymore medication in my body, and my right to go out into public ticcing and with a service dog is not contingent upon my medications. 

I don’t need "fixing" anymore than you do.

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