Trying to find right doctor - Status Migrainosus

I am on day 152 of a ongoing migraine. All the doctors have said is that it is a status migrainosus. We have done several nerve blocks which have not worked. I continue to do Botox, Aimovig, preventative meds, and abortive meds. Nothing is helping. In the hospital, they did a CT, MRI/MRA/MRV, and a spinal tap. They gave me several different migraine cocktails - none of them worked. They gave me Toradol which I told them I had been given several times and it did not… read more

Does your eye droop during migraines?

Has anyone ever had this happen to their eye with a migraine? Sometimes it’s so bad I can’t hardly see. Always the same eye. It comes and goes. Happens whenever I drive for more than 15 minutes (which triggers a migraine) or whenever the migraines at home cross a pain level of about 7. Sunglasses don’t help. The neurologist said it’s not a stroke, that it’s a nerve issue. It’s not a muscle weakness, I can force my eyes open if I try hard. My optometrist is fascinated by it.… read more

Have you been to AZ Mayo for migraine treatment?

Has anyone here had experience traveling for care from AZ Mayo Clinic? I’m waiting to hear back from them after being referred and am wondering what other people’s experiences have been like...how long you stayed...how often you go back...etc.

Have any of you in the New England area found a headache specialist who you would recommend?

I have a neurologist, pain management doc, ENT, councilor and my pcp. I feel like if I could find a headache clinic /specialist, I may have better luck. I have intractable migraines 24/7 for about two years.

At one given time, how many days has your migraines last for?

I haven't had this many issues with my migraines in a while. I'm going on day 4 with having a migraine headache off and on. I feel pain at my temples, behind my eyes, top of my head and the back too. My neck and shoulders are killing me now. I know this is not normal, right? And the worse part is I called my doctor the Tuesday before Christmas to ask for refills on my meds. And no one ever return my call until yesterday at 3:30. The nurse said that my… read more

Aimovig

My Neuro team wants me to start this . So I singed up for the 3 month trial. I am cleared by the maker and will be receiving it soon. I will keep everyone updated with progress.

Has anyone heard of MigraineX?

"MigraineX, clinically proven to prevent travel and weather related migraine symptoms before they start" They are some sort of ear plug, you can also download an app that tells you when the the air pressure is going to change. I just stumbled upon them while ordering a migraine ice hat. They are not expensive, about $12.00, but it seems that it could be one of those, "if it sounds to good to be true" items.

I'm interested if feedback, both positive and negative.

Wondering if anyone else is a long term user of imitrex/sumatriptan & have retinal vein occlusion?

I guess most of us have our share of worrying about side effects of the migraine meds we take but some of those side effects are more serious than others. I've kind of come to terms that I'm somewhat spacey, forgetful and "lose" my words for example. It's a trade off for a reduction in pain and frequency of migraines. But earlier this year I was diagnosed with retinal vein occlusion (blood clot in the eye)… read more

Has anyone participated in a Migraine clinical trial and if so what was your experience like?

What treatments are available for cluster headaches apart from verapamil

Hello lovely peeps, I have been having difficulties in regards to my cluster headaches, Imigram injections are good but they are not always working. I knwo that the neurologist said about oxygen therapy but my gP refused to give me any saying that i have to go to AandE for a trial. I'm not happy going into AandE for a cluster headache that could leave me hospitalized under the mental health act and i might bump into patients and friends and… read more