Everything's Bigger in Texas

Back at the end of March, Mom and I road-tripped out to Dallas to visit Anodyne Headache and Pain Clinic. I came across Dr. Kruzs while researching out of the box pain management treatments. He has been published on many headache websites, is on multiple headache and pain management boards, and has published research on using Ketamine and Lidocaine infusions for chronic pain. No one in Alabama is using these medications for treatments, so we figured, why not?

We drove the 9.5 hours to Dallas and stayed for our entire Spring Break. I met Dr. Kruzs on Monday. He took one look at my files and list of medications and treatments I have tried and said he had some things to try. I was immediately hooked up to an IV with a Ketamine drip and Propofol as a sedative. Honestly, I got some good sleep, thanks to the Propofol, but didn't have any pain relief. Tuesday he upped the Ketamine dosage and then used Propofol and Versed to knock me out. Goodness at the Versed. I was out in seconds. Wednesday I was in the middle of a severe migraine. Level 10 (on a 1-10 pain scale), nausea, vomiting, the works. Of course, that was the day I was scheduled for an EEG. Needless to say, it came out abnormal. (Surprised?) So after tests, I was hooked back up to an IV and this time he added Lidocaine to the Ketamine. I was also given Nubain for the pain and finally had some relief. Of course, they knocked me out again. Dosage was upped and by Friday I could hardly go to the bathroom by myself. Unfortunately, pain level wasn't any better.

So...what did I get from this trip?

• I found out that I am deficient in several vitamins: D2, D3, DHEA, B12, Zinc. I'll be adding supplements for these.
• Lidocaine and Ketamine were not something that was beneficial at this point. However, Ketamine nasal spray works for migraine pain.
• Nubain injections are efficient for migraine pain. These I can do at home.
• Baclofen is a strong muscle relaxer and helps for the neck and shoulder pain that triggers some of my migraines. We added this to my daily meds. 

Although it wasn't the "miracle" so many had hoped for, we did return with some things to try. I have found that B12 has been helpful for daily energy. The others I will keep trying and hope that the benefits will be helpful.

A Season for Everything

The past 2 months have led me to an excruciating, hopeless place. Although so much has come out of the last two months, I feel like to understand where I am at this point, I need to start back in March.

Early March I was back in a bad cycle. Multiple ER visits, asking to be admitted to the hospital, no one could/would admit me. Asking for help from any doctor, and getting nothing. It's a hopeless feeling when you go to people who are trained to help you and they can't...or won't due to new guidelines.

Then March 19th happened. I left school on a Thursday afternoon, going to my parents' house. I had a migraine all day, although just a normal one - level 7 or so (out of 10). No weird symptoms. I remember driving down Shades Crest Road. Overlooking the valley and noticing that all the Cherry Blossom trees had bloomed. As I came to the beginning of the decent of Shades Crest, I would have turned right to head to my parents. Instead, at some point I lost consciousness, drove through the Shades Crest/150 intersection, and turned left into a parking lot, where I attempted to stop, but ended up hitting a parked car. An off duty fireman witnessed the wreck and found me in an active seizure in my car. He busted out the back window, put my vehicle in park, and pulled me from the vehicle. A nurse also witnessed the event.

I woke up in the ambulance. Confused, dazed, strapped down with a neck collar on. I could hear the medic calling out my status, hearing the sirens, and thinking that they were making a big deal out of this. Nothing was wrong with me.

Back to the ER I went. CT scan was normal. I had an UTI, and apparently those can do some weird things, but didn't explain this. The ER doctor was kind. He didn't want to diagnose me with a seizure because they didn't see it. You lose your license for 6 months if you have a seizure. He simply diagnosed me with a seizure type event. I could not be alone and could not drive for 2 weeks. Moving back with your parents and losing all independence is a hard thing when you've lived by yourself for 7 years.

Could this hold the key to what is wrong with my brain? Everyone seems to think so, but no one knows what it means.

Perceptions

"Don't judge a book by its cover."
"Walk a mile in their shoes."
"Judge not, or you too will be judged."
"When you judge another, you don't define them, you define yourself."

We know it. We know somewhere deep inside that it's wrong to judge, but how much do we really judge others based on lack of information?

I have had some great doctors. Doctors that truly took on their oath to help and heal. Doctors that have hugged me, held my hand, handed me boxes of tissue, listened, researched, and cared.

I've also had some doctors that took that doctorate degree and held it high above them like a neon sign of know it all jackassness.

It's hard with a chronic condition to see doctors that don't know my case. They judge. They have to make judgments to provide you with appropriate care. I get that. They see "chronic" and my list of meds and automatically assume. Assume I'm looking for narcotics. Assume I haven't done all the right things and that I've caused it myself. Tell me my primary doctor is wrong for what medications I take. Tell me I'm causing my own pain.

Gratefully, I have only encountered a handful of those second kind of doctors, but when you do, it feels as though you're being kicked while you're down. If I go to an urgent care facility or the emergency room, I'm not just being flip. I live in a daily pain level of a 6/7. When I start to hit an 8/9, and can't control it at home, I'm looking for help. Real help. Like I can't lay in bed anymore with this pain help.

All this to say, I ask that next time you meet someone and make an automatic judgement based on their health, take a minute and consider the part you don't know...their journey that is only within their own life...the experiences only they know. Because, honestly, if you don't, you might end up on their shit list.

Advice: Solicited or Unsolicited

When I came across this clip art treasure, it was perfect! I can't tell you how many times people tell me what they do, what their sister does, or about their great aunt's cousin who got knocked up and cured her migraines.

I realize that in these instances, people are genuinely trying to help...for the most part. (Except for the person who said if they had to live like me, they'd just slit their wrists. But sayeth the naysayers.)

I'm on Facebook. I've seen the picture of the girl with her hands/feet in the sink and an ice pack on her neck. I've read the disgusting green smoothie one. Yes, I am familiar with essential oils, and, no, your "morphine bomb" is nothing like morphine. False advertising. The new one is the salt thing. Basically all ways to cure migraines.

I'm not saying these things can't be beneficial to someone, but I'm too far down that path for those to help. Plus, the word CURE bothers me. Migraines are a neurological disease. Scientists have actually identified the gene that holds the migraine disease. It is not curable, but it is treatable, which is where my journey continues.

My Story

My journey with migraines started when I was 8 years old. I was in the 3rd grade with Ms. Looney. (She got married, but Looney is such a great name, I can’t remember what her married name was.) My brother and I carpooled to school with neighbors. It happened to be one of the days my mom was late coming home and we got home before she did.

I can remember sitting on the front steps at our house, waiting on my mom to get home, with my head in my hands in tears. I remember how much it hurt and then I remember throwing up…rectangular pizza from school lunch. (Now that may not mean anything to you, but know that I’m a teacher, so I get to revisit this pizza on a frequent basis and it still makes me sick to my stomach.)

Fast forward to college years, where they became more frequent, but still manageable. When I began working (coincidentally) is when they began to ramp up. They still weren't to a point where it wasn't manageable until 2008.

In 2008, I saw my first neurologist. The famous Dr. Ford with the Ford Headache Clinic. Dr. Ford was a friend of the family and took me on as his favorite patient. I wanted to learn about my condition, and he wanted to share what he knew. He was wonderful for two years. At that point his regimen he knew did not work for me anymore as my migraines grew in frequency and intensity.

My second neuro was Dr. King. He was young, was using Botox (brand new at the time), and progressive. I knew this was going to work. He started me on basic migraine prevention medications – none of which helped or improved my “headache free” days. I went on to try Botox, which did wonders cosmetically (even though it took away my teacher look), but didn’t help the migraines. At this point I was chronic. I experienced more headache/migraine days than I did pain free days. Which is where Dr. King admitted defeat, said he could not help me anymore, and sent me to pain management.

Pain management was a joke. I wanted to fix the underlying problem. They wanted me to take meds and get nerve blocks and trigger point injections and Botox (because their doctor was so much better than my last one). So, being a good patient (and desperation) led me to an occipital nerve block on both sides of my head, trigger point injections in my shoulders, and another round of Botox. None of which worked.

Before I continue, let me explain Botox procedures for chronic migraines. I do this because I always hear, “I wish insurance would cover Botox for me!” Botox for migraines is a set of 31 injections in your head, neck, and shoulders. In fact, here’s a nice picture for visual learners:

Don’t ever tell me you wish you had migraines so that you can get Botox. I may throat punch you. I went through 4 rounds of this procedure. P.S. They don’t give you anything to take before this to calm you down. You just get to be awake and have needles with poison shoved into your head.

(Steps off Botox soapbox.)

In June of 2012, I had my last pain free day to date. Why can I remember this? It was my last moment of freedom from this disease.

Then came neuro #3. He met with me, looked over all of the treatments and medications that I've tried and said he couldn't help me. Referred "people like me" to Emory University in Atlanta.

Emory took one look at my list, told me I couldn't be helped and then referred me to Michigan Headache and Neurological Institute.

Michigan told me that I had to wean off my medications before coming up there and that my insurance would only cover 3 days inpatient. My wonderful doctor said she'd never ask me to come off of everything at once and would actually put me in the hospital to come off of them all. So what can they do in 3 days? I'm not so sure, so that's out of the picture for now.

I have several reasons I’m ready to share my story, and the nitty-gritty details of it.
1. I want you to understand what this neurological disease is.
2. I hope that one person can use my experience to help them.
3. I want to raise awareness for chronic migraines.
4. I want you to know that if you experience chronic pain that you are not alone.

So as I end my lengthy explanation of my journey to where I am today, I plan on sharing my story (in more detail), my experiences with health care providers and medications, and ultimately lead you to an understanding that this is truly a debilitating disease.