Migraine headache: What helps you cope?

@boltz7555 Hi Robyn, thank you for reaching out regarding my experience with Botox and SFN. I'm sorry you are experiencing migraines and also dealing with neuropathy. That is no walk in the park.

Since my post, I have been diagnosed with Central Sensitization Syndrome (CSS). CSS is a condition of the nervous system associated with the development and maintenance of chronic pain.The confusing part of this condition is that pain itself can change how brain works, resulting in more pain with less provoking stimuli. Therefore, every time I received Botox injections, hypersensitivity from CSS generated more pain. Mitigating circumstance, such as having SFN, created further confusion about my pain and flares.

Unfortunately, this may not have been much help in answerring your question overall..

Have you consulted with your Neurologist about your flares since receiving Botox? Do you mind describing the flares?

Jump to this post

@rwinney thank you so much for your reply! So sorry to hear about the additional diagnosis.
I did message my neurologist about the flair after Botox but when his MA responded today, she didn’t address it. I’ll ask again. Since the Botox (Tuesday 3/8), I’ve had a pretty bad headache, although I have headaches every day, it did elevate after the injections. I’m pretty certain because of the injections although that seems odd since it’s supposed to help headaches. That evening, the widespread pain elevated pretty significantly. The following day the widespread pain continued. It’s the kind that just buzzes through the whole body, aching, thighs burning, feet and hands tingling and aching. It’s slightly better today although the elevated headache persists. I have SFN and autonomic neuropathy, also fibromyalgia because of the neuropathy. I’ve tried Emgality for headaches and it didn’t touch them. I’m fairly newly diagnosed with neuropathy/fibro (less than 6 months) and we’re still trying to find the best way to treat the symptoms since it’s considered idiopathic. I have an appointment request in with Mayo neurology and have been approved for triage, to get another opinion on treatment ideas. Thanks again for the reply and for hearing me out 🙂

Jump to this post

@boltz7555 No problem, Robyn, I understand it all gets pretty confusing. Based on what you describe, and my personal experience, the best treatment for you is to wind down your nervous system, like explained in CSS video. Nerve medications naturally do help with nerve pain from neuropathy, but honestly the majority of symptom management and control comes from lifestyle change and learning how to calm the fires within both physically and mentally. I learned how to manage my wide range of pain and symptoms at Mayo's Pain Rehab Center (PRC). PRC treats fibro, migraine, neuropathy, POTS, post-COVID, etc...all things that become chronic. I'm not quite sure what being approved for triage, to get other treatment ideas means, but I hope it goes well and you find a positive path forward. You are early in your journey yet, but you are now prepared with addition knowledge, and knowledge is key for self-advocacy. I wish you the best! Will you keep me posted on how you progress in your journey and when you're able to get to Mayo?

Jump to this post

Hi Rachel- This past Tuesday my neurologist has just started me on botox and Qulipta. These were samples. So far I have had only one migraine (yesterday). I have also been approved for UBRELVY. But at $500.00 co-pay for 16 pills that's out of the question. It's way too early to tell what will work best for me as a preventive medication. Will anyone help me describe their experiences with these meds or others?

Jump to this post

Hi Rachel- This past Tuesday my neurologist has just started me on botox and Qulipta. These were samples. So far I have had only one migraine (yesterday). I have also been approved for UBRELVY. But at $500.00 co-pay for 16 pills that's out of the question. It's way too early to tell what will work best for me as a preventive medication. Will anyone help me describe their experiences with these meds or others?

Jump to this post

@merpreb Good Merry, I hope something works out for you and lasts. I had to use discount coupons (savings cards) in the past. Here is info on UBRELVY discounts (in case you haven't already found it):

Good luck!

Jump to this post

Hi Rachel- This past Tuesday my neurologist has just started me on botox and Qulipta. These were samples. So far I have had only one migraine (yesterday). I have also been approved for UBRELVY. But at $500.00 co-pay for 16 pills that's out of the question. It's way too early to tell what will work best for me as a preventive medication. Will anyone help me describe their experiences with these meds or others?

Jump to this post