I Miss Botox


I miss Botox, but not because of its magical way to erase wrinkles. Rather it has been the best preventative treatment I’ve ever tried for migraines.

The first time I had Botox was probably 14 years ago. It was finally becoming a recognized migraine treatment, one that insurances would pay for. Back then it was only a small amount injected just in the forehead. I had several treatments but saw no visible improvements. I had already exhausted most traditional treatments for migraines with either little impact or horrible side effects. My doctors have often called me a special case because I don’t respond to Triptans, which is the family of medicines used to treat migraines. I’ve tried them all. Either they had no effect or made me feel worse. Triptans are rescue medications taken at the onset of a migraine. My rescue meds for years weren’t Triptans but narcotics and muscle relaxers, which eventually made things worse. So my doctors started focusing on preventatives, which can actually decrease the number and intensity of migraines.

I tried a lot of preventatives. Everything from anti-seizure meds to medications for high blood pressure (it’s believed that these meds can prevent the constriction of blood vessels and therefore pain). Nothing helped, and I couldn’t deal with the side effects of lethargy and nausea.

I tried physical therapy, nerve block shots, chiropractors and acupuncture. So many years later, Botox came back around. Now Botox is a common preventative. There are even ads on TV recommending Botox for migraines! A lot changed since my first treatment. The dosage is greater, and there are multiple injection sites: forehead, temples, neck and shoulders. There were probably about 40 separate injection sites. It’s not painful. It’s a small prick. Initially, I didn’t think it would help. I didn’t see much improvement at first (I keep a headache journal that tracks when I have headaches and the severity). What I did see was that the Botox made my left eye kind of droopy. After all, Botox does paralyze the muscle. The Botox wasn’t injected for cosmetic reasons so my neurologist wasn’t going for aesthetics. It did improve, and as I got more treatments my eye seemed to get used to it.

After about six months (two treatments), it was starting to work. I wasn’t pain free, but the number and intensity of the migraines improved. I still had headaches about half the days of the month. This was a decrease from 20 to 30 days. So that was a success.

However, it’s now been nine months since my last treatment. The insurance I currently have does not cover Botox. In fact, it won’t cover much of anything. I made the choice to change insurance to reduce the premium cost, but of course you get what you pay for, which in this case, isn’t much.

I don’t mean for this to turn into a rant on healthcare, but I’m literally sick by the fact that as a tax paying, hard working person, I can’t get access to treatments that would dramatically improve the quality of my life. I don’t have any answers. I just don’t understand why it’s so hard for sick people to get help.

What may surprise you is that the insurance that paid for the Botox was a plan I found through the Healthcare Marketplace. The plan that denies everything is through my employer. Yes, the premiums were more but the coverage better. I remember a time not so long ago where I had phenomenal coverage. But that’s in the past. Employers are doing all they can to reduce benefit costs while insurance companies simply deny coverage. Healthcare is a for profit business in this country. If you need any proof of that, turn on your TV and wait for the numerous pharmaceutical commercials.

I’m not alone in my struggle to get access to the meds I need. This country is currently in a tailspin over the EpiPen price increase. I happened to read a good article on this, which basically called out the fact that Mylan has a monopoly on this type of treatment and because of government regulation can charge what it wants; the price is not set by the market.

Again, I don’t have any answers. I’m not an expert. I’ve always had insurance and paid my fair share. I just miss the Botox. And more importantly the relief it provided.


An Honest Conversation about Migraines


On the outside, I don’t look like I have a chronic disease. But I am fighting a disease – one that doesn’t leave me with scars or a tremor or limp. I walk around probably 90 percent of the time in pain. I try very hard for it not to impact my life, but that’s simply impossible. I’ve learned how to manage it and deal with it. After 13 years, it kind of becomes part of your life. That’s what migraines do to you. They become this uninvited guest, much worse than your rowdy neighbor or weird uncle. They infiltrate your life and make it all about them. They don’t want you to be able to work or go for a walk or even sit in a room with light.

Before my first migraine, I never even got headaches. I was someone who was well and active. Pain wasn’t something I thought about, at least not my own. But my mom did have bad headaches, and I believe they would now be categorized as migraines. I’m not sure if anyone knew what they were in the ‘80s and ‘90s. Migraines are often hereditary and that could be one reason I have them. Another thing I’ve always found interesting (although my physicians have never seemed to think there was a connection) was that the migraines started around the same time I was first diagnosed with ovarian cancer. Often, migraines are tied to hormonal changes, and this was definitely the beginning of major hormonal changes in my body.

So I can’t really answer the questions of why. Most doctors cannot. Migraines have been studied, and there are lots of drugs on the market. But I don’t think it’s something that most neurologists or pharmaceutical companies are really researching. I have some theories on this: migraines are more often a woman’s disease, there are more serious neurological diseases like MS or Parkinson’s or simply there’s no money in it. I’m not an expert on any of this; it’s simply an opinion.

I am an expert on living with chronic pain. Not because I want to be. I’ve had to adapt. It’s the only way I’ve been able to survive. I could probably be in bed most every day from a migraine. But what kind of life would that be? I could also be strung out on opioids. There’s a lot of talk about opioid addiction in the U.S. right now, reignited again in the media by the death of Prince. The number of overdoses has skyrocketed. It’s become an epidemic. Everyone wants someone to blame. For over 10 years, I had a prescription for an opioid to combat my pain. I never tried to acquire meds in any illegal manner either on the black market or by doctor shopping. I did not take the meds every day, but I took them several times a week, depending on my pain levels. They helped, but I became tolerant to them and needed to take more just to get some relief.

But I knew these meds were not helping me. They were making things worse and giving me many other side effects. So I took myself off the meds. For the first three or four months, I felt horrible. I went through withdrawals, which included sleeplessness, night sweats and lots of nausea. After about a year of being off the meds, I began to feel “normal.”

I still take medicines for my headaches but no opioids. And I won’t ever take them again unless it’s for a very short term due to a procedure or surgery.

I’ve been through a lot with my migraines. I never know what the day will bring. One of my biggest triggers is cold fronts or rain, which of course I have no control over! I’m thankful to have a great physician who is adamant about helping me find relief. I’m going to keep writing about migraines and all the different things I’ve tried. It’s a topic that needs to be addressed. It shouldn’t be something people try to hide. If you’ve never had a migraine, and that’s the majority, you wouldn’t understand that it’s much more than a headache. Migraines have become part of my life whether I like it or not. And since I have the ability to express myself with words, I wanted to write about the toil they have taken on my life. It’s not just the pain; it’s all the things I’ve missed. It’s forced me at times to be a bystander to my own life. That’s not okay with me.

I wanted to start a conversation. I want to say that I have migraines, but they don’t define me. If migraines have affected you or someone you love, please share this message and how you’ve learned how to live with pain.