Latest Migraine Treatment

Dr. Charles Weinstein

This is my neurologist, Dr. Charles Weinstein (a very old picture of him) from Neurological Consultants of Kansas City. He's a nice guy. Great bedside manner. And I think he knows headaches. I went to him because a friend's mom had a great experience with him and the treatment of her migraines. According to my primary care physician, Dr. Weinstein was treating me with the standard, research-based medical treatment. When one didn't work, we'd try another. Well, I've been going to Dr. Weinstein for a year and I am basically the same, if not worse, than I was a year ago. Today I was prepared to advocate for myself due to the intensity of my pain and say that this is not acceptable. I was prepared to inform him that I am considering a second opinion so I need to know from him what other treatment options he will consider. I was nervous about this even though I don't know why. I'm in charge of my care, but for some reason it took lots of guts and prayer to work up the emotional energy for this appointment. Turns out I didn't need it. God answered my prayers, because Dr. Weinstein brought up on his own how I am not getting better.  Then he said:

Have we talked about going to a headache center? I think it might be a reasonable thing to do.

Dr. Joel Saper

He talked about several headache centers across the US, but unfortunately there are none in the midwest. He eventually recommended the Michigan Headache and Neurological Institute, run by Dr. Joel Saper, who was the first person to establish a dedicated headache treatment center. Dr. Weinstein went on to tell me....

everybody they see is just like you, chronic daily headache, resistant to everything. It's a very comprehensive program. They have an inpatient headache unit. They work very diligently to come up with something that works better for you than what I'm doing. I mean, we've tried this, we've tried that, we've tried various things, we're not making any progress. And I think it would be a good thing to do. I think it would be a place that can offer you something that I can't.


They approach the psychological aspects of chronic pain, the effects of stress on headache and pain, diet, biofeedback. It's not just 'oh here take this drug and keep your calendar', it is a multi-specialty approach to treating this.


It's a very well-oiled machine. They're very efficient.


Dr. Weinstein said he would make the initial referral to MHNI and they would contact me to discuss the program and treatment costs and insurance. I left my neurologist appointment at 11:00 AM and at 3:45 MHNI had already called me. And they were ready to set up my appointment next week! Oh my. I need more time. I had talked to my husband briefly about what the neurologist had said, but gosh, we hadn't even talked about traveling and I needed way more processing time.

What I learned from that phone call was that everyone comes in for a full day appointment/evaluation, with all previous medical records. The doctor(s) will meet with you, do tests, and I will meet with a psychologist. Then by the end of the day they will confirm their findings and tell me their plan of treatment and recommendations, whether that is outpatient or inpatient. And I go from there.

At this point I've decided to give myself a day or two to process all of this and wait for some informational brochures in the mail. We are seriously considering setting up an appointment at the end of November, but we will see what works best for my situation. God's timing is perfect in all of this and I am so grateful.

A Hug Does A Heart Good

When our friends are sick, we care about them and hope that they will feel better soon. So that's what we tell them. But when you live in chronic pain, after failing traditional medical treatment, as well as alternative treatments, it's hard to accept the phrase, "I hope you feel better soon," from well-meaning friends. I used to feel frustration when hearing this phrase, even though I knew my friends cared, and were well-meaning, but I now appreciate them for reaching out to me in the best way they know how to. But, my reality is, I likely won't feel better soon. And it does not make me feel encouraged to hear that phrase.

So, what should you say to someone who is in chronic pain? The best thing, for me, is to sincerely ask how I am doing, as opposed to an obligatory "how are you?". The most meaningful and encouraging thing to me is to hear that you care, and to show me that by saying, "I'm sorry you are in pain", or "I'm sorry you're living with this", or "I am thinking about you", or "I will be praying for you and God's healing".

I don't remember a lot of things, thanks to the side effect of one of my migraine drugs, but one memory I do have is of my thoughtful brother-in-law reaching out to me, embracing me in a hug, and genuinely saying, "I'm sorry you're having such bad headaches", at a random moment at a social event. That moment still brings tears to my eyes.

A hug always does a heart good anyway, doesn't it?

Photo by clover_1 / BY-NC 2.0 CC

Motivating Music

From thissongissick

Living in chronic pain has been bad for my workout habits. Why?

1. You're in pain, so you might not feel like going to the gym.

2. Exercising sometimes exacerbates the pain and you don't feel like inducing a headache.

3. Chronic pain causes exhaustion, so you may just feel tired and think you have no energy to exercise.

Because of these reasons, I have become mostly a donating member of my gym, except for the occasional yoga class. Now that I've had some slight relief, I need to get my rear back in gear. I saw this music group on Jay Leno the other night and couldn't stop laughing. They're pretty silly (and slightly inappropriate?). But it reminded me of how important it is (for me, at least) to have fun, upbeat music that motivates me when working out. I might just have to add this song to my playlist.


Warning: I would not recommend opening the video with young children around due to some inappropriate lyrics. (hey, at least I spared you the music video, which was super inappropriate and uncomfortable.)


Click: Sexy and I Know It on youtube


*PS: I'm disappointed I can't embed this youtube video on blogger!! Sorry!

Drugs, Drugs, Drugs.

Photo by emagineart / by 2.0 CC

In my journey to get rid of my chronic migraine headache, I have tried many treatments. I wish that permanent relief would have come with natural methods, but that doesn't seem to have been the case. That doesn't mean I won't try them again in the future, but for now my main line of defense is with drugs and Botox. Five weeks ago I received Botox to treat the migraine, which is FDA approved for chronic migraine sufferers who have failed traditional medical treatment. It appears to be providing a slight positive effect.

I saw my neurologist today and he wanted to start me on another drug. I think this is the 9th one to try. I'm still on one, but all the others have failed to make a significant difference. I hate being on drugs. Putting chemicals into my body to make things right makes me feel uneasy. And I hate the side effects. And I don't even know the long-term side effects. If Botox is my miracle treatment, what are the long-term effects of injecting that stuff in my head every 3 months of my life? One thing's for sure, while everyone else's face is full of wrinkles and creases in the nursing home, my skin will be smooth and youthful.

Something I have learned through this journey is that I am in charge of my treatment. As much as I hate the drugs, it's my choice to take them or not. Just like it's my choice what doctor I go to and what treatment I decide to embark on. So as much as I hate the idea of having to take the drugs to make me feel better, I hate not feeling well more. I hate being in chronic pain worse. So right now I choose to take the pills. I choose to be well. And part of that means taking the drugs. What do they say, 9th time's a charm?