Migraine headache: What helps you cope?

@courtneyblair @rwinney I don't know where you live, but I am in Tucson, Arizona and have a wonderful pain doctor who also suffers from migraines. If you are in this area, let me know. He was trained at Mayo, but honestly has provided more help than the Mayo docs did in this area.

@ilovedoodie Thank you very much for the thought. I'm alllllll the way over in New York. I'm currently under control with migraines since my last bad bout. I switched from Emgality to Ajovy. 3 shots every 90 days.
Rachel

I have been to neurologist, migraine specialist and I still suffer from terrible migrains daly, evbery day of the month for the last 8 years non stop. I even went to Mayo Clinic and found no help there either. I am at my wits end ond need help, I see floating spots day and night, do not sleep well and have tried Emgality, amovig and even Botox without getting releif. Any help would be great.

@jbarb Im so sorry about your migraines . I cant imagine what they are like . I do have a suggestion when you said about seeing spots have you seen a opthamalogist? I dont know if she /he could advice you but just a suggestion

Hi @jbarb.. I'm so sorry to hear of your migraine struggles. They are miserable and debilitating to deal with. I've gotten relief from botox every 3 months ( but it took 2 rounds to produce). Aimovig and Emgality both did their job but after 8+ months they each became less effective. To that, my neurologist says, then we keep rotating once you build tolerance. I'm now using Ajovy which are 3 needles once every 90 days. I'm back on track...til the next time. Also, my Neuro suggested Cambia, a powdered abortive medicine, mixed with water, taken upon onset of severe migraine. It is a game changer!

My only other advice is about clear diagnosis. I was also diagnosed with occipital neuralgia which led me to greater and lesser occipital nerve blocks in my head which then turned into several radio frequency ablations to kill the nerves.

I also have Small Fiber poly neuropathy. It is whole body but is predominant in my head, neck and shoulders so, that all presents mitigating factors for me.

Some days I don't know if I'm coming or going! Trying to navigate the root of pain and cause can be a challenge. No more injections/RFA's for me as I don't believe they helped my cause and perhaps contributed to permanent nerve damage.

Hoping to have helped you in some small way. May you find answers and relief soon. Be well -
Rachel

My Son has had a migraine for 9 days at 9/10 pain, decreasing at times, after ibuprofen, Tylenol w/codeine and maxalt to 4-6/10 but only briefly. It has now been 2-3/10 for 3 additional days (12 total) after a steroid injection in urgent care day 9. I want to reach out to this community for some advice. I am an RN and have been very concerned about the lack of treatment he has received, feeling they are not taking it seriously. He is not a complainer and never goes to the doctor. From the 4th-9th days he was seen in ER (they did do a CT), urgent care and 2 phone appts. He called Friday (Day 10) to tell them he was out of migraine medicine. They made him a pcp appt for Tuesday for days later which would be day 14 if it continues. They said the doctor would return his call and he was going to ask for a neurology consult and MRA but she never called back on a Friday and never filled the migraine medication. They initially said it’s probably a virus, then said maybe a migraine but no other diagnosis or testing and it’s still present. He has had neck pain for the last few days but is able to put his chin to his chest. He has had no other symptoms except some body aches during the middle which is unclear if it was from laying in bed for a week Please help! We need some answers and someone to listen. Thank you!
Colleen

Hi @cxcolleen, welcome to Mayo Clinic Connect. You may have noticed that I moved your message to this existing discussion about migraine headaches. I did this to connect you with fellow members like @courtneyblair @rwinney @russy and others who also manage migraines.

Colleen, do you feel like the migraine is a symptom of something else neurological going on?

@cxcolleen I'm sorry to hear of your son's migraine status. There are cervicogenic migraines which stem from the neck, among many other kinds. I'm curious his age? Was he given a steroid taper pack or just a one time shot at urgent care? What is the migraine medication he is out of and was it helping? Does he have his own PCP to oversee his care and refer him to a neurologist? It seems like the ball has been dropped at his expense.

@rwinney Hi Rachel, I came across your post while looking for information on Botox for migraines while also suffering from small fiber neuropathy. I just had my first Botox injections yesterday and today I have been leveled with neuropathy pain. The pain is exactly like any random flair up but I’m wondering if it was triggered by the Botox. Did you notice a flair up in the SFN pain after Botox injections? I know it’s been awhile since your post; I’m hoping you are living pain free now!

Robyn

@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?