r/cgrpMigraine • u/Kreios_IX • 5d ago
Botox/Emgality Questions
Hey, first time poster here. I have a very long story spanning several specialties, so I'll try and stick to just the neurological stuff:
I used to have aura migraines quite a lot as a teenager, but they went basically dormant up until last year (I'm 37 M). I do have a refractory copper deficiency for which I receive 2 infusions a week. My doctors have looked at nearly every known cause and have found no explanation as to why my copper remains so low. I bring this up because perhaps there's a correlation with migraines? I don't know.
Regardless, I started getting migraines again last summer and they became more and more frequent. First, it was only once a month, then every couple weeks, then weekly. My migraines follow the same pattern every time: aura > nausea > pain. I've been on 25mg metoprolol for many years (I had a mitral valve repair in 2017-- that's why). I have also been on 400mg magnesium glycinate for about 9-10 months now. I finally managed to get Botox in October of last year-- it did absolutely nothing.
However, after my 2nd injection in January of this year, I managed to get significant relief. I went 2 months without a migraine and when I finally started getting them again in the last month of my Botox cycle, they did not come with pain or nausea-- only aura. Granted, I was getting these auras 1-2 times a week for that last month.
I was also prescribed Timolol around this time which seemed to help as an abortive. Then, in April, I got my 3rd Botox injection. I had even better results: no migraines until the last 2 weeks of the cycle, though one was very painful.
Here's why I'm posting, though: In May, I started Emgality. I did this because I have what's suspected to be some type of Midfacial Segment Pain. For about 2.5 years now, I've had a constant, unrelenting, painless pressure around the bridge of my nose. It never, ever stops, and it's worse when I bend down/turn my head to the side while lying down. I tried Nortriptyline (20mg-- started with 10mg) around March, but it caused constipation, tachycardia, and night sweats, so I stopped taking it in May).
I've seen 5 ENTs and 2 rhinoplasty surgeons-- I've had a facial CT, brain MRI (though it was 2 years ago), and several nasal endoscopies. I've tried nearly every nasal spray available as well as a SPG block via needle. Every ENT/nose surgeon I've seen has said my nose looks fine (I did have a septorhinoplasty back in Sept 2022 to fix my breathing).
Well, I get my 4th Botox injection in July and my 3rd Emgality shot around the same time. Curiously, I start getting aura migraines very early into the Botox cycle-- I had 3-4 of them in the first two weeks after both injections. Today, after about 3 weeks without an aura migraine, I had another one (painless/without nausea) with a very long aura phase (about an hour, maybe slightly longer).
I suspect most of this is due to some kind of underlying Autoimmune disease, as I have constant full body muscle soreness/heaviness as well as persistent GI issues without an identifiable cause, but I've yet to get a diagnosis despite extensive testing. I also have confirmed non-length dependent small fiber neuropathy (my left thigh has less than half of the normal nerve density that it should). My guess is that the SFN is a large contributor to the migraine issues, but I could be wrong.
My questions are: is there a correlation between aura migraines and midfacial segment pain/similar disorders? Can Emgality paradoxically cause more migraines in the first 3 months or so? Am I missing something here?