Wednesday, October 28, 2015

Mind Change Day 28: Taking Meds

Like many back injuries and other sources of chronic pain, Post-concussive Syndrome (PCS) has little or no structural component. Yes, there are areas of the brain that light up differently on a PET scan, especially in the white matter (corpus callosum) where diffuse axonal injury similar to Shaken Baby Syndrome can range from mild and self-healing to moderate or severe with varying levels of permanence depending on age and other factors (see an explanation here).

But most concussions do not involve a permanent structural injury that can be detected by anything but the most precise PET scans; most neurological exams are fairly normal. The non-structural brain changes have been found or theorized to involve cerebral blood flow, metabolism and neural activation (see here) but working backward from the effects of stimulants, also likely involves neurotransmitters. Like my son's pediatrician said when prescribing ADHD meds to him for the first time in order to keep him from hopping into the street impulsively, "if they work, we have our diagnosis." So if increasing the amount of dopamine (and serotonin and norepinephrine) significantly lowers PCS symptoms, then there must be a neurochemical imbalance causing at least some PCS symptoms, right?

Well, no. Not necessarily. While there's a "rule of thumb" that stimulants make hyper kids calm and calm kids hyper (and there is some truth to this in terms of hyperactivity), focused attention is different, and most people will have a positive response to attention with stimulants like Adderall; that's why they're sold illegally at colleges. They not only keep you up but help you lock things into your long-term memory more easily than without.

So the brain boost they give may not be related to a dopamine deficit, and in fact that's not measured (or easily measurable) prior to being considered for a stimulant trial. It may just be a general brain-boost-for-all that those with PCS are particularly desperate for.

Which is fine, in theory, but problems specific to taking with taking them for PCS are that they both reinforce the mindset that "I have something physically wrong with me that I need medication to fix" (more on this below) and they cause changes to the brain themselves that might cause attention problems if you take stimulants for an extended period and then stop (see here). This goes beyond withdrawal and the problem of tolerance and into changing brain chemistry that was possibly better off before the meds, or just needed more time to adjust itself. Most stimulants have a rare side effect of causing sudden cardiac death, and using them for any purpose other than ADHD is considered "off-label," meaning some insurances won't reimburse the med cost and there's little research on their use after traumatic brain injury.

All that said, the pull to use stimulants to clear the PCS mental fog is strong. They make such a substantial difference in my productivity, my mood, my concentration, my error rate, even my proneness to making dangerous moves when I'm driving (or say, last night when I lit a kitchen fire long after they'd worn off), that anyone who knows me well can tell if I've forgotten to take them. My husband has been known to go back three times in a day to bug the pharmacist to get whatever approval is needed to fill the script because things will collapse at home over his next 3 or 4 day shift rotation if I'm not on meds.

When research is done, it shows their effects are--as I've experienced--substantial. Night and day, even, making me wonder if multiple concussions can actually cause am ADHD-like condition (here). And I'm not the only one. My posts on this issue are my most popular, and there's not a lot out there from actual experts. 

So I'll share a couple of articles that explain a little more***

B. Johansson , A.-P. Wentzel , P. Andréll , C. Mannheimer , L. Rönnbäck
Brain Injury 
Vol. 29, Iss. 6, 2015

Michael G. Tramontana , Ronald L. Cowan , David Zald , Jonathan W. Prokop , Oscar Guillamondegui
Brain Injury 
Vol. 28, Iss. 11, 2014


And then I'll say that I think this "off-label" use of stimulants should be much more widely studied so more individualized recommendations can be made by physicians, and more informed decisions by patients who want to make good long-term decisions for their health at the same time they're desperate for relief and one or more TBI's make it especially difficult to balance all the risks and benefits well. Kind of like taking strong pain meds for severe and chronic pain. 

Is there an alternative treatment that doesn't involve meds? If so, it might be something like the DOCC Program I'm writing about this month, focused on retraining neural circuits. Treatment of any condition with both mind and body components (called neurophysiological syndrome in the Back in Control program) has shown that a psychological approach for chronic pain is much less effective if the patient believes there's a medical solution possible. 

My experience is that stimulants are not a solution, but they are a very effective treatment. Ideally, one could "unlink" the belief that PCS is solely a medical problem from the fact that meds are making it better, but I'm not sure that's possible. More and more I think I need to take an extended med vacation to build up my inherent cognitive skills, and convince the balking parts of the brain that I'm fine. Just as someone could probably not finish this program if they were still on increasing doses of pain meds, I'm not sure you can do it on increasing doses of stimulants either.

We'll see. After the holidays ;). 

Love, Lisa

***if you can't get these articles at your library, email me and I'll get you a copy from mine. 


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