As part of the recent blow-up over one of Anita’s streams, a number of people have asked why she doesn’t take medication to make her tics go away. While it seems like an obvious question, it oversimplifies what is actually a very complicated topic. It also misses what, to me, is a vitally important point:
Mandating the course of another’s medical treatment in a public forum completely undermines the fact that medical treatment is, first and foremost, a personal decision.
Any medical treatment should begin with a conversation between doctor and patient. The doctor is there to inform the patient about the treatments available and to give them their own opinion about which one they think would be the best course of action for the patient, given their knowledge of them and their condition. The patient is there because it is ultimately their choice which treatment to pursue, and most importantly, whether to pursue treatment at all.
That last part is not always obvious when viewed from an outside perspective, but it is critical to this discussion. I’ll give two examples:
When my mother was diagnosed with non-Hodgkins B-Cell Lymphoma, the doctors described the treatments they were willing to pursue and told her that her best course of action was an aggressive series of gamma knife sessions. The tumor was distributed throughout her brain and constituted more than a third of the mass of her brain tissue. The gamma knife therapy would’ve killed the tumor, but even the doctors had to admit that she would’ve stopped being herself very early on in the sequence and that by the end she wouldn’t regain consciousness. To their dismay, she refused treatment. The tumor killed her shortly after, but she retained her humor and her zest for life up until the end.
When my wife was diagnosed with a brain tumor, she was presented with a slightly different course of treatment: surgery followed by gamma knife to kill any remaining cells. Her tumor was more centralized and could be removed with surgery, and gamma knife therapy had come a long way in the twenty intervening years. My wife agreed to the treatment and came through with flying colors. She still retains her humor and zest for life, though the tumor cost her her vision in one eye.
Both made the right decision for them. Medical treatment is, and should remain, a personal decision.
While both of my examples were surgical rather than pharmaceutical, the same logic applies when it comes to medication. There is a common misconception that medications are like a silver bullet: take a pill, the condition goes away. But even someone who has never taken anything more than an aspirin for a headache knows this is never really the case. Take the aspirin, the headache improves, but might not actually stop. Take two aspirins and the headache is markedly better, but your stomach might start to hurt. Start taking them regularly and you bruise more easily and cuts take longer to stop bleeding. The effects of medication, even over-the-counter medication like aspirin, are rarely straightforward.
The same is true of medications used to treat Tourette’s Syndrome. Only a handful have been specifically tested and approved for treating tics. The majority of them were actually designed for something else entirely and just happen to reduce tics as well. So when medications are used to reduce tics, even the ones specifically approved for that purpose, there’s almost always a burden of other effects that must be taken into account.
One family of medications that can be used to treat TS are central alpha-adrenoceptor-stimulating agents like Clonidine and Tenex. These were developed as treatments for hypertension – high blood pressure – but are also effective at reducing tics in some Tourette’s Syndrome patients. The therapeutic doses are similar enough that in some cases they can be used to treat both tics and hypertension simultaneously. Win-win, right?
Sort of…
There’s one small detail missing, of course: “Therapeutic dose” refers to the point at which a patient begins to see relief of symptoms. It doesn’t mean “cured”. It doesn’t mean complete relief of symptoms. It means there’s a notable effect. That effect must then be tuned, often over the course of weeks to months, to arrive at the correct dose to get the desired amount of relief for each individual patient.
During this time the relief of symptoms must be weighed against the impact from other effects of the medication. In the case of Clonidine, while the tics may be improving the patient’s blood pressure will decrease. Increase the dose to further reduce tics, the patient’s blood pressure will continue to drop. There is a practical limit here that should be obvious, but I’ll state it anyway: Drop your blood pressure enough and it’s hard to stay awake. Keep going and you slip into a coma. Keep going from there and the patient dies.
Other families of medications have different effects that must be taken into account. Not one of them reduces tics without other potential effects. Not one.
Up until recently I didn’t take medication for my tics. If it hadn’t been for two tics in particular, I probably never would have. I don’t see my TS as something I need to fix because I don’t consider myself to be broken. It’s just part of who I am. I know that’s not true of everyone with TS, but it’s true for me. Things would’ve stayed that way if my tics had not begun to injure me.
Several years ago I had a tic that was tearing up the ligaments in my shoulders. I asked my doctor what my options were and she presented me with a couple of courses of action: Do nothing and the tic would eventually tear things badly enough to result in permanent injury. Medicate and deal with the other effects of the medication. I chose to try medication. I was already borderline hypertensive, so my doctor started me on a very low dose of Clonidine. It didn’t stop my tics. It didn’t even reduce their frequency or variety. But it reduced the speed of the shoulder tics enough that I had a chance to heal. And for the first time in years my blood pressure settled into the mid-range of healthy.
A few years later I had a head jerking tic that was tearing up my neck. Similar conversation, similar results. We increased my dose of Clonidine and I went to physical therapy to try to strengthen my neck before permanent damage was done. I was too late to stop the permanent damage, but the PT exercises kept things from getting worse. Eventually the tic faded and new ones took its place.
My blood pressure is great now, but I’m fatigued practically all the time. On those weekends when I don’t have a to-do list as long as my arm, I fall asleep in the middle of the day and wake up hours later, still tired. On weekdays I press through as best as I can, but I’m stumbling by the time I go to bed.
I still tic.
Sure, I could increase the dose again, but the additional fatigue might be severe enough to keep me from working. Sure, I could switch to another family of medications. But then I’d have to balance the benefits against a whole new list of additional effects and might not wind up any better off. For me, it’s just not worth it. My tics aren’t injuring me, so I don’t really see the point. If it wasn’t for the hypertension, I’d go off the medication entirely.
There are no magic bullets here. There is no off-switch for TS any more than there’s an off-switch for hypertension or for a brain tumor. When I went to my doctor, it was because my tics were causing me physical harm. That harm was what I wanted to address, not the tics themselves. We discussed it, we chose a course of treatment, and that treatment means my shoulders still work and my neck still works after a fashion, though I’ll never be able to look up again without pain. I made the right decision for me and have no regrets about making it.
But I would never presume to make that choice for anyone else. It’s not mine to make.
A Ticcing Life 