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Hi, my name is Theresa and I am currently being treated with Botox for my Chronic Intractable Migraine. To give a little background information for those of you that may not know much about migraines, or are just starting out on your own migraine journey here are some facts that are good to know.
I was diagnosed in 2010 with Chronic Migraine. Migraine, or “sinus headaches” as my family called them (which is completely inaccurate by the way!), were so common for my father and most of my sisters that I didn’t realize it was actually normal to NOT have a headache most days of the month. I started my post-diagnosis Migraine journey like most people do, with varying combinations of tricyclic antidepressants and high blood pressure medication. As I said above, these treatments weren’t because I was suffering from depression or high blood pressure; it was because the medications had shown signs of helping others with Migraine. Since these medications have the lowest amount of side effects, it’s usually the first go-to treatment option for many doctors. After numerous medication changes and combos, the side effects outweighed the small amount of help the medications gave me, and I was sent to a bio-feedback clinic. They switched me to a anti-seizure medication, Topamax, and did an extensive elimination diet to figure out what foods may trigger my Migraines.
While the biofeedback and the elimination diet helped some, it didn’t give me any pain free days. It lowered the severity of my head pain when I avoided trigger foods and I could use bio-feedback to calm myself down through some of the more severe pain. Topamax made me lose 40lbs that I really didn’t have to lose in the first place, and impacted my overall cognitive abilities. I was dumber than a rock, trust me my coworkers and husband will attest to that!
I finally convinced my neurologist that I needed to get off of the Topamax. I tried a few other odd medications before I was switched to Lyrica. Lyrica, as some of you may know, is another anti-seizure drug but works in slightly different ways and is also used to treat fibromyalgia, diabetic neuropathy and neuropathic pain due to spinal cord injury. It helped more than any of the other medications but I was still in pain all of the time and the neurological symptoms of Migraine were still too much for me.
So after 5 years of trying pill after pill, I asked my doctor if I could try Botox. I am VERY afraid of needles so for me to actually ask to be injected 31 times I was pretty desperate. Most of you have probably seen the Botox for Migraine commercials on TV but here is some quick info on Botox for Migraine.
In the 90’s, doctors started to realize that a lot of their patients reported that the injections were helping to lessen their migraines in between treatments. In 2010 Botox was approved by the FDA for treatment of Chronic Migraine. There was no real improvement shown in the tests with Botox for tension headache of Episodic Migraine. Doctors don’t know how Botox helps reduce Migraine severity and frequency.
It requires at least 31 injections in the face, head, neck and shoulders. The injection sites are very different than the sites for cosmetic Botox.
Treatment shows the best outcomes when the injections are done 12 weeks apart. Improvement may not be seen until you have three consecutive treatments. For most insurances to cover Botox, including TRICARE Prime, you have to have tried and failed at least three other types of medications before you are eligible to try Botox for Chronic Migraine.
I was lucky to have been switched to a MTF (military treatment facility) when I first started getting my injections. I would just show up to the appointment, they would give me the injections and I would go home. Things changed when my neurologist deployed for three months. I was told the other neurologists in the office couldn’t see me because they were short staffed and would only be treating active duty patients. So I went on the hunt for a civilian provider who would be able to administer the injections. Unfortunately all of this happened 4 weeks before I was supposed to have my next treatment, so time was of the essence.
Eventually I found a doctor who could do the injections, but I learned something very important about civilian doctors and Botox. Technically Botox is NOT covered by Tricare Prime without a lot of paperwork proving that it is medically necessary and you aren’t getting it for cosmetic reasons. When you have a week before your next treatment round, those are not the words you want to hear. Also, most civilian providers will hand you a prescription for the Botox and you have to procure it yourself, which was also information I didn’t know before!
So I hope that my trial and error through all of this will help someone save a lot of time, energy, and phone calls so they can get their treatment faster. Unfortunately, due to the paperwork hurdles, and the fact that the Tricare specialty pharmacy takes a few weeks to fill a Botox prescription, I will be receiving my next Botox treatment very late.
If you are thinking of asking your civilian doctor about trying Botox for Chronic Migraine make sure to have the doctor fill out the required forms and that you call Tricare and/or Express Scripts to find a pharmacy that will fill the prescription.
Personally, Botox has been a game changer. With the treatments, along with the Lyrica and other treatment options I still use, my quality of life has greatly improved. I may still be afraid of needles but every 12 weeks I really do look forward to the injections because they help so much. I am still in pain but there have been a few, brief, shiny moments of being pain free, and that gives me faith that I can get even better. I hope this information was helpful for you. Even though the past 6 plus years have been tough I have learned a lot about myself and that even through the pain I can help many around me. Please reach out to me if you need someone to talk to about your own or a loved ones journey with Migraine. There is a very large Migraine community online that you can reach out to as well. Below are some links that I found very helpful along the way.
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