Refractory Migraines Complicated by New Chronic Pain

By willow2020

2 min read

My migraines were “formally” diagnosed in my mid-thirties, but I’ve had “headaches” since my early 20’s that we’re debilitating and likely migraines-undiagnosed. My migraines were controlled with preventative medication for the first 10 years or so whereas I rarely took “rescue” meds such as Maxalt. Then about 2yrs ago my migraines started to become “refractory”, almost DAILY and they would not respond to ANY medication at all! I tried almost every prescription RX available. Started Botox, and Ajovy. I was using so many Triptans (my “rescue” medication for my almost daily migraines that I ended up with “medication-over-use migraines!!) So not much improvement. My 2nd dose of Botox (which I receive every 3 months) I responded great! Literally no migraine for almost 3 months.

Increased pain

At this time, I started having increasing neck pain and left arm pain with weakness. So, to complicate things, I was also having to take narcotic pain medication for the neck and arm pain which also caused the medication over-use problem. Unfortunately, there was nothing else I could do. I had been going to the gym swimming and walking on the treadmill (at a 15% grade) for a few years, at least 3-4 days per week. I have always been healthy. I didn’t even have a need for a Primary Care Physician!

Struggling to stay on treatment

It has now been about 2 years, I am still receiving Botox, Emgality and I do not take any triptans except VERY rarely when I have already taken the Ubrelvy that I can take for migraine without getting rebound HA. I have now had a rotator cuff surgery and probably have Neurogenic Thoracic Outlet Syndrome that has taken all this time to get diagnosed but I have to wait to get “formal” testing and diagnosis out of state until I have recovered from rotator cuff surgery. My Neurologist/Headache Specialist will not give me any more Botox because I am on narcotic pain medication (that I have to take for the pain from surgery and numbness/pain of NTOS!!).

Frustrated with doctors

I am in so much pain and still having migraines almost daily. I am frustrated that my doctor does not understand I would LOVE to discontinue my pain medication if I could. I would LOVE to have my life back. I would like to be able to get back to the gym-it’s been months since I’ve been able to go! I am depressed and losing hope my life will ever be “normal” again. My loved ones are tired of listening and seeing me in pain and crying. I have a fairly strong faith in God but I’m losing sight of my God.

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Holly Harding Moderator & Contributor
<inline-mention username="willow2020" user-id="3912181"/> -Thank you so much for your honesty here. You are not alone in this. I'm so sorry you are in such pain. The journey you have been on is complex and long and you have truly persevered in looking for answers and relief. I admit to being a bit confused by your doctor disallowing the continuance of Botox due to the concurrent use of narcotics. These two treatments are not generally contraindicated, unless it is a situation unique to you somehow. Did the Botox give you relief for your migraine condition? You said your doctor is a headache specialist? Is s/he a migraine specialist? If you are truly frustrated with your doctor, perhaps it's time for a change? https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists In terms of support, if you are feeling that your friends and family are not able to provide you with the compassion and understanding you need and deserve, there are a few options. First, it may help if they can better understand what you're up against. It's certainly not on you to take on the responsibility of educating them on migraine, but if you think it may help to pass along a few articles on the topic of migraine to help them see that you are one of 37 million others who are experiencing the same daily reality, the 7th leading cause of disability, etc, perhaps they will be able to be more compassionate about what you face each day. We can pass along some articles for you to forward, if that would be of help. Second, please know we are here for you and you've found a community of people who are living a similar reality to yours. We have a facebook page that is quite lively with community members in addition to this site who can help remind you that you are not alone in this. But also, if you're needing to strengthen your support network, please have a look at this link as well: https://migraine.com/living-migraine/turn-corner-when-feeling-down We are here for you in this and as you move through it. Please keep in touch and let us know how we can best support you. Thinking of you. Warmly, Holly (migraine.com team).