Drugs or No Drugs

Tough Boy:

1) The first place you'll go is to a Neurologist - they're great if you're having problems that need medication.

2) Find a NeuroPSYCHOLOGIST that has worked with brain injuries, head injuries, whiplash/car accidents, concussions. They can't give you drugs but they know more about the cognitive part that many neurologists aren't educated about (but they can give you the referral!!)

3) Can't find one? Visit the Brain Injury Association state directory - give them a call and ask if they know any neuropsychologists in the area that can evaluate you and your brain injury.

4) Ask questions... and if you're on drugs - talk to you pharmacist! They'll go over your medications with you and might know some things you won't get from your doctor!

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My neurologist gets a kick out of seeing me every 4-6 weeks. Why? Because I'm the pharmacist that doesn't want to take drugs.

This isn't entirely true. I know a lot about drugs. I believe they can be an incredible aid towards the quality of life or even extension of someone's life expectancy with certain diseases. I believe they are important and a crucial part of health care - when used correctly and monitored appropriately. Drugs get a bad rap sometimes but I'm a firm believer that they can be pretty extraordinary... again, if used correctly.

The trouble is - even as a pharmacist, especially now that my circadian rhythm is all screwed up, I'm not taking things correctly (same time every day, 2 hours before or after eating dairy, missing several days in a row because I'm sleeping, etc etc). And there are many important little tidbits people just aren't aware of with their medications. Just another reason why it takes six years to get your pharmacy degree, and another reason it's a Doctor of Pharmacy and not an Associates or Bachelors. And why patients should ask any and all questions to their pharmacist to get them involved in their care.

I know a lot about medicine and disease states, which made it very difficult to be the patient when I was at the worst of being sick. The majority of learning about pharmacy is learning mechanisms. There's a mechanism to why your heart isn't pumping efficiently and there's a mechanism to how it can be fixed - and generally there's a drug that performs that very mechanism that will make you feel better or extend your life. But with a brain injury, with everything I had been going through, there wasn't a mechanism. There are symptoms that resemble other disease states, like migraines and dizziness and fatigue, but the why and how wasn't there. The only mechanism - "you have an mTBI, you had a concussion." So until I know what is going wrong, until someone can really give me the mechanism - I haven't been too keen on taking a bunch of their suggestions (however, if I were having seizures I'd be taking those drugs!!).

My neurologist finally talked me into taking a 'triptan' for my migraines. It was like breathing. I'm smart, I've had my 'brain' start coming back slowly, I've been re-learning my mental math, I've been understanding things a little more and a little faster as every month passes, and I've been very slowly seeing parts of my personality come back. I'm just living in this cloud of a constant migraine, sometimes worse than others, sometimes with head pain and sometimes with just insane nausea. If I could just get rid of the cloud, if I could just breathe, I could regain so much of my daily functionality! Taking the Axert that first time, I was like... "wow."

Imagine being in your hot shower, or in a sauna for too long that it's hard to breathe and hard to get much other than heat into your lungs - then you get out and open the door and... ahhhhhhh, breathing. The colder air fills your lungs and your panic decreases and you can think and... ahhhhhh, breathe. I decided that day that the next time I would go to my neurologist I'd say, "yes, give me the Topamax," I know it works for people who have migraines, I know it is known to work, I know I've read the literature, I know that I need to live without the migraines.

I went to my neuropsychologist the next week and he agreed that I'm really smart and I could function better if I could get rid of the migraines. Great, same page! But when I mentioned the Topamax, he was adamant about trying something else first, "don't go on Topamax, you have such a good brain, you have so much potential." Apparently, in his 30 years of experience he has seen that Topamax really does work - but it has some cognitive decline, it has a tendency to make people lose a ton of weight that is really unhealthy for them - and being so young and smart he didn't want me to experience the potential decline, and being tiny already he didn't think I could afford to lose anymore weight (and I completely agree).

He suggested to try biofeedback. The following week, my neurologist was not thrilled that he had talked me out of the Topamax and believes that biofeedback would take way too much time and attention to get results - and I think he's right. However, back at the neuropsychologist, we decided that Neurofeedback, a pretty new practice, might be the answer for me.

In a few more months, if this neurofeedback doesn't help me as much as I need it to in order to start working and having an income again - I'm going to see what drugs would be best for me, and Topamax might be it. But until then, I at least know that this recovery is expected to take a long time as it is, so a few more months of trying something unconventional isn't going to be much of a loss. Just think of all the things I can gain!