On going migraine for 5 months. I'm Desperate

I'm so sorry this is going on. It's good that you are seeking the treatment of further specialists. I hope they can find some answers for you. You mentioned some of the preventatives you have tried. By chance, have you tried botox? You talked about jaw/tooth pain, which made me think of TMJ issues and grinding at night. A visit to your dentist could get you more information on that, as they can figure out if you grind by looking at your teeth. They can fit you with a splint that you wear at night that will help alleviate some of the grinding (although I still try to grind even with mine.) Botox helps me to grind less, I feel like, and alleviates some of my jaw pain in those weeks when it's fresh.

You also mentioned light sensitivity. Have you checked the lights/screens in your house to make sure they are as friendly as possible to someone who is light sensitive? One of my neuro-opthamologists recommends only incandescent bulbs for people who are photophobic as they emit the least amount of flicker. In terms of screens, I haven't found a good work-around for TV/video games/movies, so I had to give those up. For computers, they have a wide variety of screens for light sensitivity, including filters you can attach over the screen you already have, LED screens where you can turn down the blue, and for extremely light sensitive people who cannot tolerate any light or flicker, an e-ink screen made by Dasung called Paperlike.

Chronic migraine can look like separte attacks, but it can also during bad periods look like one long attack. My neurologist likes to describe it by saying whatever happened in your brain the week before affects what will happen this week. So if you had constant migraines last week, your brain is pissed off and super sensitized to everything... very prone to falling back into that pattern. It's important to break out of the pattern. (Which always super frustrates me when she saysthat to me and I'm in the middle of a months-long attack.)

-Did anything happen prior to this attack coming on? Car accident? Hit your head? Anything even months before? Has your doctor done any testing/imaging?

-Have you checked out information on migraine elimination diets to see if what you are eating every day could contain migraine triggers? When I first randomly got sick like you (and my onset was very much like yours--sudden and day after day of migraines), I didn't realize the foods I had always eaten were now something my changed body was oversensitized to.

-Another thing you might ask your neurologist about is infusions. You can get a bunch of different things in an infusion, so you'd have to talk to your doctor, but for some people they are another option for stopping migraines that don't stop the usual way.

I understand your feelings I have had a constant Migraine for Years & have tried nearly everything even Botox so now I know it can get very depressing because the Pain never goes away, I take Vicodin, Soma & Xanax, Vicodin helps with the pain, Soma helps with the neck stiffness & pain & the Xanax helps with the Anxiety. None of these make all the pain go totally away but the help!! Good Luck 7 Semper Fidelis!!!

Yup, infusion is an IV drip. They can give you all sorts of different meds that your brain may respond to if it didn't respond to first line migraine meds like triptans. Infusion is not the first thing one does for migraine, but it's super helpful if you can't get rid of them by triptans and other easier means. They have helped end some of my months-long migraines.

Alcohol is a very common/potent migraine trigger. Not sure what one eats at a British barbeque, but virtually every food we commonly eat at a US barbeque except maybe corn would be a trigger for me. I might suggest looking over Kerrie Smyre's migraine elimination diet list and see if there are foods on there you are eating?

https://migraine.com/blog/elimination-diet-foods-to-eat-foods-to-avoid/

One thing to consider is that you may have been able to eat a food your entire life, but it can become a trigger. And, I know this list looks super scary and restrictive, but if you've had a five month headache and nothing else is working, it might be worth it to try sticking to a restricted diet for a month and see if that changes your headache pattern.

And (I know this is hard) if you can't pin down anything that happened right around that time, you might need to start looking for what is happening day after day that is continuing to re-trigger you. Even if you did eat something that day, it's probably not what is making you sick five months later. Have they done an MRI or lumbar puncture or anything to rule out other causes that could explain sudden onset? (mine was sudden onset and wound up being a CSF leak, but it took them three years to order the test that caught it). I would suggest requesting all standard testing to rule everything out. I would also examine my lifestyle, eating, environment, everything, for things that could be irritating my brain. Be very observant about when you feel better, when you feel worse.

Caffeine is a problem for a lot of people with migraine. Your brain super loves it because it shrinks your blood vessels while you're on it, but then the moment it wears off, you go into withdrawal, which in anyone with a migraine brain can equal insta-migraine. My neurologist recommends no more than one small caffeinated beverage per day. I can't even tolerate that fluctuation, so I drink peppermint tea.

It was about three months before I went to the ER.
I also had a CAT scan prior to the spinal tap. Plus many blood tests which showed nothing.
The Dr said my meningitis was caused by a sinus infection left untreated in addition to an untreated UTI. Sounds odd, I know. That’s one thing that was never completed-a urine test.
If all else fails, get a spinal tap. The neurologist kinda laughed when he said it would give me a headache. Good luck to you !