Modern Migraine Mama

Journey to Botox

For over half my life I have lived with this disease. My first memory of having head pain was at 8 years old. It wasn’t until, 1998, when I was 18 years old that I was official diagnosed with migraine. Like so many stories that I have read, this disease was not taken seriously by medical profession. It was brushed off as “stress” and I was put on a regiment of antidepressants and anxiety medication.

I am now forty years old, and during my journey with this disease, I have tried just about everything to manage my attack. In 2014, at the age of thirty-four; my disease went from a diagnosis of “episodic” to “chronic”. The year 2014 marks the time when I was involved in a minor fender bender, which set off a series of cervical spine surgeries. I went from being a vivacious, enthusiastic, go-getter–with an extremely active lifestyle , working full time in a career that I was passionate about and finishing up my degree for my Doctoral program.

At the beginning of this “Chronic Migraine” journey, I was living in constant excruciating daily pain. I can only describe this pain as feeling like I had gasoline burning in my head, neck and upper back 24/7. The pain crippled me; causing me unable to leave bed for days on end. The “go, go, go” life that I had once had came to a screeching halt. I became deeply depressed. It was during this time that I was forced to take a break from my career and educational endeavors to focus on solely on my health.

If one word was used to describe this season of my life it would be DESPERATE! It was during this time that I was introduced to the notion of a multidisciplinarian approach to my disease including western and eastern medicine. The therapies that tried were biofeedback training, cognitive behavioral therapy, acupuncture, massage therapy, physical therapy, taking a regiment of Chinese herbs, vitamins, and meditation—and this was all done IN addition to being on the Russian roulette of the “standard” western medical protocol for this disease–this was comprised of the trial of MULTIPLE medications, nerve blocks, ultrasound guided nerve blocks and trigger point injections, occipital nerve blocks, medial branch blocks, and three cervical spine surgeries, including an occipital nerve decompression procedure. I was put through the wringer of western and eastern medical treatments for Chronic Migraine. My Neurologist, who by the way was an ABSOLUTE GEM; was left wringing his hands as to what else I could possible try to obtain a level of control of this disease. He and I discussed many different options including being put on the waiting list at the Mayo Clinic and a variety of a Headache Specialist across the Western half of the United States. My doctor wanted me DESPERATELY to try Botox but, unfortunately, my insurance at the time REFUSED to cover Botox. So, it appeared we were at an in pass–I had basically decided that this was going to be the rest of my life.

Here we are at present time–I have endured countless rounds of fertility treatments that ultimately led to IVF (In Vitro Fertilization) which, blessed me with a beautiful son. Additionally, I was doubly blessed with; a Headache Specialist who was willing to try ANYTHING to help to get my attacks manageable. During the past 3 years, I have tried a 10 day hospital in-patient program for Chronic Migraine; been on several new medication protocols and have tried a variety of treatment options. BUT the BIGGEST blessing of them all–my new insurance COVERS Botox.

So here I am, eleven rounds of Botox under my belt and there have been many things I have learned over the past two years. So here is my list of things that I WISHED I had known

Things That I Wished I had Known About Botox for Migraine

• Get Out Your Boxing Gloves: Be prepared for a fight with your insurance company– Just because your Doctor signs off on Botox DOES NOT mean its a done deal. I spent countless hours on the phone with insurance. Including several DENIAL letters, of which, I was forced to provide documentation (medical records), a personal statement and other documentation submitted to the insurance company. I wish I could say this was an isolated experience–but this is something that I have had to fight EVERY TIME I am scheduled for Botox. Sometimes, this process will take WEEKS or even MONTHS, which inevitably delays Botox.

• Botox Does Not Have the Same Efficacy Every Time.- I learned this the hard way. After receiving a full 4 rounds of Botox (all of which helped to some degree), I received a round of Botox that WAS NOT as effective. At week 6, my doctor (who had been administering nerve blocks to help with the pain), requested blood work, which included a Botox antibody test–to ensure that I was not becoming immune to that particular Botox strand. (which can back negative by the way). It took approximately 8 weeks before I begin to notice any changes in the intensity of attacks. BUT, overall, this round of Botox DID not work as well. Being of an inquisitive nature, I asked my doctor WHY it had not been as effective as previous treatments. His conclusion was that perhaps the medication when shipped in a COLD environment could have been exposed to some warmer temperature, which could have disrupted the molecular composition of the medication. Apparently Botox, is incredibly sensitive to temperature changes. Somy recommendation is if you have noticed that your medication was not kept quite as cold as you think is appropriate; to contact your pharmacy and see if they are willing to reship the product (JUST A SUGGESTION)!

• Botox DOES NOT Mean That You Will Become Attack Free– Please remember I am speaking from a “Chronic Migraine” perspective. Yes the infomercials depict individuals frocling through a field of flowers after receiving a treatment. But, for me, THIS IS NOT THE CASE. Yes, I have noticed decreased neck pain, intensity of attacks and shortened attack time–BUT receiving Botox DOES not mean you will be pain free! (AGAIN, this is JUST my PERSPECTIVE–EVERYONE is different in their response to Botox).

• .It Takes TIME– Buckle up because it will take time for the medication to kick in. For me it can take upwards of 3 weeks after the administration of Botox for evidence of a decrease in attack frequency, duration and intensity. Often times this GRADUALLY takes effect. My best indicator that its taking effect: my eyebrows can’t move like they used to! 🙂

• It (CANNOT) Last as Long as You Would Think- Let me start with this disclaimer: EVERYONE IS DIFFERENT! But my experience with Botox, is when it works, it works WELL. But when it begins to wear off–buckle up its “Attack City”. The other thing is they, and when I say “they” I’m referring to the insurance company, has some sort of algorithm which came up with TWELVE weeks as the magic number for the AVERAGE person to receive their next treatment of Botox. My experience is that my Botox begins to wear off around week ten. Which means I have two weeks of intense attacks —-followed by 2-3 weeks waiting for the medication to began working. So, all together I am looking at approximately 5 weeks of absolute hell. During this time, I hold fast to the hope that it will start working any time; give myself LOTS of grace, rest and self-care. AGAIN, this is MY experience. I will say that I have spoke with other individual with Chronic Migraine and this is their experience as well. Talk with your doctor!

• There is a CHANCE it may NOT Work Your 1st Time–To be honest, this was something that I was 100% unprepared for. NO ONE explained to me that on the AVERAGE, the first or even second time of administration results in little or no difference in attacks. When the medication is presented it is shown the “GOLDEN TICKET” to your treatment plan—it was presented as THE thing that would CHANGE my life. But, I am going to be absolutely authentic with you…..YES it has changed my life—but it took TIME—its been over TWO years since I received my first round of Botox and within the past 6 months is the first time I have seen SIGNIFICANT changes in the frequency, duration and intensity. But you have to remember I started with the daily “gasoline in my head” level pain. So this MAY NOT be the result that YOU experience. I wouldn’t say you need to prepare for the WORST possible scenario, I recommend that you go with an open mind and the expectation that this COULD take some time to elicit results. Remember Rome was NOT built in ONE day—Good things take TIME!

• MOST Insurances WILL NOT Cover Botox any sooner than Twelve Weeks Between Each Session– If you find yourself in the similar place that am; that your botox wears off WAY before twelve weeks. You will find that the majority of insurance companies DO NOT want to pay for you to have Botox and sooner than the magical twelve week number. AGAIN this may work out FANTASTIC for you—but if you are in my situation you need to be prepared to have to wait for the twelve weeks between administering. ONE solution my doctor and I have come up with is to do nerve blocks ever few weeks, especially during the “waiting period”. This seems to help get through the “hump” until the medication begins to set in. TALK WITH YOUR DOCTOR for a PLAN that fits YOUR situation!

• Botox Savings Program--If you do not have insurance that covers Botox–you are IN LUCK–there is a Botox Savings Program which you an enroll in! It is comprised of some basic questions accompanied with some documentation. I did not learn about this program until this year, and feel like it IS NOT widely publicized. Even if you do have insurance and have to pay a RIDICULOUS copay (like me)–this program can help! Take and look!

Final Thoughts and DISCLAIMER

I would like to reiterate that I AM NOT A MEDICAL DOCTOR. This is simply an overview of the issues that I have encountered with Botox. All in all–BOTOX has changed my life. Even for the short window of time that I have lowered pain days when it is working at 100%–I no longer have the “gasoline in the head” type pain and the duration and intensity of attacks has decreased exponentially. Yes I am still classified as someone who lives with “Chronic Migraine”. But now I have found a protocol that WORKS for me. I ENCOURAGE you to discuss with your doctor what treatment plan is best for you. This list was merely a reflection of MY experience living with Chronic Migraine and the treatment options I have tried. AGAIN SPEAK WITH YOU DOCTOR.