Friday, December 19, 2008

QEEG - Quantitative EEG

To begin Low Energy Neurofeedback System therapy (otherwise known as LENS) I've been going down to RI once a week for the last two or so months to begin my neurofeedback.

One of the first meetings was to take my brain map to get an idea of where my brain isn't "normal." It's called a Quantitative EEG. They put a swimmers cap on me with tons of electrodes attached and 'injected' goopy gel into the holes where the electrodes are. The gel is supposed to aid the conduction of your brain waves to be read from your scalp. These maps are utilized in many different disease states - depression, epilepsy, migraines, ADHD, mTBI - and are pretty complex. They can be taken while you're doing a project, like talking or reading or math problems; they took mine while I was to sit there with my eyes closed and told not think of anything for 12-13 minutes.

There are several brainwaves that are always present under that skull of yours. Depending on what you're doing or if you're injured their are different ratios of those waves present. But it takes someone really educated in the mapping to interpret them (for example: ADHD kids will show too many delta waves, increased theta waves, decreased alpha and no significant change in beta waves all in the prefrontal and frontal lobe area... I'm not sure if they have to be doing something or just sitting there for that combination).

The waves are given names in groups of different frequencies. Delta are generally the waves 1 Hz to 4 or 5 Hz. Beta waves are the higher frequencies - 12 Hz to 25 Hz. High Beta include faster waves to 30 Hz. The program they use to measure all your frequencies that are present at the same time sorts them and creates colorful 2-D pictures to give you an idea of where it picked up how many, what amplitude, and by each frequency (1 Hz - 50 Hz) and by the clusters of frequencies that would make up each kind of wave.

This is an example of one of my faster waves in the Beta range:


It really doesn't tell you anything except there is more in the back right of my head than the front. The real information starts to come when they take this data and create more 2-D graphs after comparing your info to those of people in your age range and gender that are "normal" or "healthy" or people with no injuries or problems. If you are "normal" and just like everyone else like you should be - you will have a completely green brain!!


My alpha waves are perfect!!

The scale on the bottom is a standard deviation scale - based on a general bell curve I believe. So Green is normal... and Blue would be very low, Red is WAY WAY WAY too much!!

So this is where the cool part comes for people like me - who were starting to think they're a hypochondriac because nothing is showing up anywhere. MRI, CAT scan, whatever - nothing is wrong with you. Well I got hit in the head and things just aren't right... but there's nothing to show it.

Here's one of my higher frequency (28 Hz) waves after being compared to normal people - can you tell where I was hit? Can you see where my migraine was the day I had the map done? THIS IS SO VALIDATING!!!




And then when grouped into High Beta (25 - 30 Hz) it's an average, but still very clear to me!!



Sooooooo cool. It's pretty much used as a diagnostic. And guess what - I got hit in the head and my brain waves changed.

People with mTBI generally have WAY too much delta (the slowest waves, present when you're at your deepest sleep) and WAY too much beta waves (the fastest waves, present in anxiety and panic attacks) that can be seen where their injury occurred.

This... THIS is a mechanism. This is why my vision in my left eye has been ridiculous, this is why I'm just not the same, this is why I get easily over stimulated, this is why I can't think correctly all the time, this is why I've had to relearn everything in my life, this is why my personality has changed, this is why my sleep schedule is screwed around, this is why something actually happened when I was hit. This is what's wrong and where we can begin to see where I can benefit from LENS therapy. Which I'll talk about next...

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!

Saturday, December 6, 2008

Impact of a Stroke

My grandparents on my mother's side have been there for me throughout the past decade of ups and downs. This past year especially.

My grandmother has always been a spitfire woman. My grandfather is absolutely the love of my life. At 83 and 87 years old, they celebrated their 64th (yes, sixty-fourth) wedding anniversary on November 18th. They are often up and about, still driving, and don't take more than a multivitamin. My grandfather would tell you - at his yearly checkup everything came in clear as day; cholesterol is perfect!

I love my grandparents. When I worked weekends for a few years, I called them every Sunday morning for some small talk before it got busy. Every holiday or anniversary, every birthday or every picture they sent me, I would send them a card or a thank you note. Both things I haven't been able to do in over a year - it's been too overwhelming or too much.

I am fortunate to have them close by, so when I started therapy in RI, I was leaving my mother's car at their house and my gram would pick me up at the T when I needed to drive down for a few days. Since July, I had been lucky to start seeing them a lot as I would get my attention and processing therapy or whatnot.

My grandmother has never been very tactful. She means well, but she surely lacks tact. I've had to ignore some of her comments and remind myself she means well. Such as "If you just went back to work, you wouldn't have to play all these stupid games that aren't getting you anywhere and you'd be just fine," or "you start to wonder how far 'support' goes until you're just plain babying someone..."

And it's OK, I know she just doesn't get it. I know I don't get it sometimes. I know that a lot of people just don't understand. I know there are instances where people have concussions and they are, indeed, perfectly fine. But I know more than ever, there are cases where that bump in the head isn't just a bump in the head and there are serious things wrong. I know because I'm sure I've been bumped in the head before and was fine. I know because this particular bump in my head was more serious and definitely changed my entire life and future.

Throughout all of this, accepting that she and others do not understand, I have never once wished they would. I have never wanted anyone to actually "get it," and the day I walked into the hospital and saw my grandmother absolutely beside herself because she "got it," I could only relive the dispair I had felt a year ago after my accident.



The Friday before Thanksgiving, my grandmother had a stroke. She's doing OK. She looks great - really great - fantastic actually. And she hates hearing it. As I do.

She gets it. And when she sees me when I visit, she just cries and says sorry - which causes me to cry and not be able to say anything except "it'll be OK, it comes back..." She asked me "how have you done this for a year, this is just so frustrating, how do people do this and not just want to quit?"

She can't do a lot of things she used to right now. She is beside herself as she tells doctors that she can't mechanically write, the words are just scribble - I got my love of writing from her, I got my verbose and often superfluous nature from my gram. She was going through old stories she's written - and she can read, and she's shocked she can still read when she can't write. She's also shocked she was able to do so much before. She gets it.

When I went in to visit, I brought my favorite photograph of her and my grandaddy from a few years ago to have at her bedside. I also brought some playing cards because she loves solitaire. Lastly, I brought her a 'word search' book. She loved the photograph - as it connected her to people who care about her. The cards and word finds - just made her discover some new things that are harder than they were before.

She speaks very slowly and is processing things even more slowly. On Thanksgiving, I watched as my family talked so normal to her and she pretended to listen, but her response just showed it was too fast for her to understand. I slowed my speech for her to answer her when she asked if she had just stayed at home and not gone to the hospital if she would have been worse. And she got it, she understood. She's still bright, just different. She gets it.

That day in the rehab nursing home, as the family was around she was telling us about her decision to be DNR. She was asked if she understood that it meant "do not resuscitate?" Her response was that she absolutely did and she doesn't want to live if she has another stroke. I don't think she will, most strokes that actually become a DNR decision happen one after the other, and their clots are just firing all over the place. But I don't think she'll have a life threatening one. And if another one happened, she just might become a little more disabled... this woman could probably still run circles around you and I. But the point is that the loss of who she used to be has had her thinking about dying. Her brain injury from the stroke has completely taken the life-loving spirit out of her. She gets it.

Finally, touching on personality changes that happen to those brain injured, some people, like me, get angry and resentful. However, my grandmother's clot was in the area of the brain that "controlled inhibitions." She went from being a stickler to saying outlandish, hysterical things! My father said, "Holy smokes! She is not herself, she's practically ready to run Saturday Night Live!!"

As comical as that is, it still breaks my heart. It had frustrated me that she didn't understand before, but I would go through it all again - the pain, the sleepless nights, the frustration, the anger, the loss, the fear, the unknown, the desperation, and all the struggling through this recovery - I would do it all over again if she never had to know. If she never had to really understand what I was going through I would experience it all over. Watching someone you love go through this, for me it resonates so profoundly because I've been through it. I get it.