This August I spent five days in an intensive headache program at a headache clinic. It was my first time participating in an intensive program, and I had placed a lot of hope in the clinic. It took months and months to finally be scheduled and, to find an opening. I even made the difficult decision to miss my cousin’s wedding because there wasn’t another opening for months. The clinic was an experience I won’t forget; there were aspects I thought were extremely helpful and others that I didn’t care for. I left the clinic with a lot more information and tools to manage my migraines.
I learned that individuals with migraine have a more sensitive nervous system. This means that I am hypersensitive to my environment, including weather changes, lights, sounds, and scents. This sensitivity also includes a hyperawareness to any emotional stress or tension in my environment. Migraine sufferers are misperceived as being more stressed than those without migraine, or managing stress ineffectively. Instead a migraine episode is a migraineurs’ body’s response to the stressors that come with being human.
People who have chronic migraine are often extremely empathetic- something I’ve always known about myself but until now I didn’t realize that this could also be considered not just my greatest strength but also my greatest weakness. I internalize stress and conflict in my environment and have a deep desire to “fix” whatever problems my loved one is experiencing. It is important that I learn to control my empathetic tendencies so I can increase my migraine threshold.
People who suffer chronic migraine obviously have a low threshold to migraine. The clinic’s main objective is to give the patient the tools to increase their migraine threshold. This means putting the odds in my favor. I will always have migraine; I can’t control that. However I can control what I am eating, the exercise I get, to a degree my stress level and how I process stress, the attitude I take about my condition, and other contributing factors. Along with the correct abortive and preventatives medications and treatments, my threshold is increasing and I saw an improvement. When I left the clinic they said I had moved from chronic migraine (15 or more headache days a month) to episodic (less than 15 headache days a month). Ultimately, the clinic helped me accept that this is my reality and to make the best of it I need to be proactive with my lifestyle.
At the clinic my doctors and I came up with a diet to follow through with, as well as a regular (light) exercise routine. Sleep isn’t usually an issue for me because I sleep on a pretty consistent schedule, but maintaining regular sleep is important. My doctors and I also tried several treatments to break my migraine cycle. Some of these treatments included Toradol and Phenergan IV’s, nerve blocks, lidocaine injections, massage therapy, and biofeedback. My boyfriend, who was by my side throughout the entire clinic stay, and I met with a group of other migraine sufferers and their support system. It became clear quickly that all of our struggles are unanimous; this was strangely a great comfort to both of us. You are never alone, regardless of the battle you are fighting. I am lucky to have a strong support system, but for those of you, whose family or friends don’t understand, there are growing online communities and support groups. Before I left the clinic my doctors and I adjusted some of my medications, adding some and eliminating others. I was instructed to really get down what medications are most effective for each level of migraine pain, to know my body and what works best for me.
The clinic was valuable and helped me to create some lifestyle changes to maintain fewer migraine days per month but honestly, a lot of aspects of the clinic were disappointing. I left with distrust towards some of the doctors and even felt that parts of the program were falsely advertised. I am really disappointed with the follow up care I've received as an intensive patient. Considering there were only two other women in my group and the clinic only does an intensive program once a month, I expected to be a priority patient. Instead a lot of things have gone wrong, from incorrectly entered insurance claims, not returning calls and portal messages, filling medications, dropping the ball on follow up care and scheduling discharge consults.
As dissatisfied as I was with some aspects, I took into account that I had very high expectations and had waited a long time and placed a lot of hope in this clinic. As a chronic illness patient, I think it is imperative to advocate for yourself. So I did just that, I expressed my disappointments with my doctors and they worked with me to meet some of my expectations. I wanted to share the not so great side though, because I don’t want other migraine patients to feel hopeless after a program if it wasn’t everything they hoped it would be. There are other programs, different doctors, new procedures and drugs constantly being researched, so never give up on advocating for yourself and trust your gut instinct if something is rubbing you the wrong way.
It's only been two months since the clinic and to feel like I've backtracked in my progress to the low I was in prior to the clinic is honestly devastating and extremely scary. I'm sure my anger is justified in many ways with the clinic but also exists because I didn't get the desired long lasting results the clinic is known for producing. I really struggled with what to write for this blog because I wanted to share my experience at the headache clinics intensive program, which truly was beneficial; but I also didn't want to lie and say everything is perfect and where I wanted it to be, when that isn't the reality.
The reality is I am still struggling with my migraines a lot and I am doing my best to make changes but they are very slow changes. I've lost a lot of my progress and for the last three weeks I have had a migraine almost daily. So I've been really sick and have struggled to keep up with my commitments, like writing this blog. After careful consideration from my doctor, I started my second round of steroids today. I received Botox on Monday, September 28th and by that Thursday was still having daily headaches so to try and break this cycle, and to avoid overuse/rebound migraines, my doctor decided on another round of steroids.
The last weeks of the three months between each Botox injection are always the most difficult weeks for me. After receiving Botox six times (every three months as I mentioned) I can say that it's not "the cure" for me that it is for other migrainuers. However it does decrease the severity and frequency of my migraines. I can't imagine not having Botox to help manage my migraines and I will continue to use Botox as a preventative. My doctors are even working with my insurance to approve getting Botox injections more than every three months so it doesn't set me back into a cycle each time.
It made me really sad when I went in for Botox and my nurse said it was the first time in the over two years since I've been seen there that I walked in looking lively and happy instead of miserably sick. It was really a sweet sentiment, but it kind of killed me because I felt the same as I have every other time, maybe even worse because I lost progress this time. It convinced me that I've just gotten better at faking feeling healthy, and smiling even when I’m in pain.
Divalproex, the preventative I have been on for the last four months seemed to be responsible for a serious decrease in migraine days. In the last few weeks I (and others) have noticed a dramatic loss in hair; I am constantly shedding like a dog, producing balls of hair when I brush or shower. I've also gained weight on Divalproex and my doctors confirmed that is a common side effect. Despite following the Mediterranean Diet, and eating the healthiest I probably ever have in my life, I am gaining weight. The most frustrating part is prior to my migraines becoming debilitating, I was a very fit and active girl. I danced, ran, swam, did hot yoga, played soccer, biked, hiked, etc. I have never struggled with weight until I was on handfuls of prescription drugs; I never had any of these problems until I had to start treating my migraines. (Makes me wonder if the treatments are really helping in the long run- but that's maybe a topic for another blog post) Honestly both hair loss and weight gain are more desirable than nearly daily migraines but it is definitely not worth it to take a drug that causes adverse side effects and decreases in effectiveness. My doctors recommended going on another prescription (that costs more than $100 every 14 days) and a supplement to treat the side effects of the Divalproex. I’m not super excited to add more drugs to my inventory, but I think it important to give my doctors’ recommendation a fair chance.
As I've been sicker, it's been back to the endless days in bed with ice, darkness, my puke bucket, and silence. Secluded from everyone and everything going on. Now more than ever I wish I was a healthy 23-year-old girl that could go out with my friends and be starting my career like everyone else. It’s really discouraging to have lost progress, and feeling like I’m back at square one but I work to find the positive in everyday. One thing that has been helpful is doing something I enjoy each day, even if it’s just a walk, some yoga, making art, or reading for pleasure. I have found enjoyment in exploring my new diet, and learning new recipes that fit within the restraints. I remain hopeful that I have the knowledge and tools to handle my migraines.
Wishing all my migraineurs a pain free day! Be Well!
Olivia Rehberger (LivDelReh)