What Do You Do?

By stacyaw

1 min read

I remember having “headaches” in kindergarten...going to the nurse in every grade and getting the standard aspirin and laying down.
Now that I’m about to turn 50 and have tried at least 50 or more medications from my primary care provider and a few from my neurologist, nothing has actually worked.

My future with migraine

What do you do? I’ve been on long-term disability for 11 years, I now worry about my future. Will I ever get a break from 15-20 a month? Will I be in a care home at 65 with no money and no one to look after me (only parents, sister and niece)? It’s a scary place that migraines have put me and I don’t know if I can recover.

Seeking relief

None of the new migraine medications actually have worked perfectly for me. If the financial assistance is only for a year, then the drugs are not covered by my insurance, costing $1,000! That’s it migraines are costly when trying new medications either to your pocket or your well-being. Some drugs have taken me on a rollercoaster.

Share my own story

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Nancy Harris Bonk Moderator
Hi <inline-mention username="stacyaw" user-id="3723445"/>, Thank you for sharing your thoughts with us. You're not alone in feeling frustrated and exhausting trying to find an answer for migraine disease. Like you, I've tried over 50 medications, complementary therapies, supplements and more to tackle migraine. Let me she what information I can share with you from my experiences. The best thing I've ever done is to see an expert doctor (now on my 6th due to moves and what not) who is certified in headache medicine. This is not the same as being certified in neurology, as not all neurologists have this extra certification. These expert doctors can make a huge impact in our treatment, I know they have for me. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A doctor (who may not be a neurologist) who is certified in headache medicine is a true expert. I know how exhausting it is to seek out help from a new doctor. Going over our story, time and time again feels moot at times - we've been brushed off so many times. But I firmly believe these expert doctors can make a difference. Let me share these articles with you on how these doctors are different and how to find one; <a href='https://migraine.com/blog/really-find-headache-specialist' target='_blank'>https://migraine.com/blog/really-find-headache-specialist/</a> <a href='https://migraine.com/blog/seeing-a-board-certified-headache-specialist' target='_blank'>https://migraine.com/blog/seeing-a-board-certified-headache-specialist/</a> <a href='https://migraine.com/living-migraine/change-thoughts-new-care' target='_blank'>https://migraine.com/living-migraine/change-thoughts-new-care/</a> We don't currently have a cure for migraine disease - it's something that's managed. Prevention medications work to help prevent, not cure, a migraine attack. And even with a good prevention regime, we may still get breakthrough attacks. A good management plan includes trigger identification and avoidance, prevention strategies, lifestyle modifications and acute treatment to name a few. That's a lot and can be overwhelming, but we're here for you! Here is a great link with more management articles; <a href='https://migraine.com/insiders-guide-managing-migraine' target='_blank'>https://migraine.com/insiders-guide-managing-migraine</a>. I hear you on the cost of some medications - it's ridiculous. In my opinion, our entire health care system needs overhauling!! I look forward to hearing more from you and I'm here to answer any questions you may have. Wishing you a low pain day, Nancy Harris Bonk, Patient Advocate/Moderator 
1. Nancy Harris Bonk Moderator
 Hi again <inline-mention username="stacyaw" user-id="3723445"/>! I forgot to share my migraine management plan with you. I've been getting Botox since 8/16 with pretty good results. I also use Cefaly (for prevention) and Nerivio (to stop an attack) along with trigger avoidance and lifestyle modifications. Here are the links for the devices; <a href='https://migraine.com/blog/cefaly-migraineurs-review' target='_blank'>https://migraine.com/blog/cefaly-migraineurs-review</a> and <a href='https://migraine.com/nerivio' target='_blank'>https://migraine.com/nerivio</a>. This is after trying over 75 medications over the years. I was very hesitant to try Botox but am very happy I did. I also wanted to let you know it can take three, four sometimes more rounds of Botox before we see improvement. Botox isn't a cure, but works to prevent attacks. Nancy Harris Bonk, Patient Advocate/Moderator
Amanda Workman Moderator & Contributor
<inline-mention username="stacyaw" user-id="3723445"/> I hope this finds you on a migraine free day. I am so sorry that you have been dealing with these migraines for so long. I can only imagine the impact this has had one you. Affording medications can most definitely be a challenge, an upsetting challenge. About a year ago, I saw ads for a company called Cove. They offer various medications for migraine. We have an article about them. I wrote the article after trying them and I still use them today. https://migraine.com/living-migraine/withcove Managing insurance can get tricky. You may be able to have your doctor do a prior authorization for new medication since you have tried all the traditional medications. I hope you know you are not alone; our little family is glad to have you. - Amanda (Migraine Team)