Hi, I'm Brandon and I just found out I have MAV

Hi Brandon,

That’s a lot to unpack.

Yes, it does sound like MAV. This whole community gets you. We understand.

We’re always sorry to meet new MAVericks because we know you’re suffering. But we are always glad you found us.

Unfortunately, you’re the demographic that has the hardest time with MAV initially - young male. You’re probably not feeling worse than most of us did in the beginning, but the young guys have a harder time adjusting emotionally. You’ll get there. Life will get better. MAV sucks but you’ll learn to thrive just the same.

Count yourself very lucky to have a neurologist who not only knows what MAV is but also knows how to treat it. Nori is a first line drug and an often successful one. But it takes time. A trial at an effective dose needs to be 6-8 weeks to see if the drug will work for you. For nearly all MAV drugs in any class it usually makes things a lot worse for a week or two every time you titrate up to a new dose. We’re a med sensitive group which means we have to titrate up slowly, sometimes much more slowly than the neurologist recommends. Our motto is the opposite of what you want, low and slow. There is much wisdom there. MAV forces you to learn patience.

If nori fails, venlafaxine is another great choice. A lot of us have success with that drug. Understand though that all of these drugs - tricyclic anti-depressants like nori, SNRI like venlafaxine, beta blockers like propranolol, and a handful of others - are strong. Most are psychoactive and all have some measure of side effects. It takes patience and a lot of trial and error to find the right combination for you. Unfortunately, there is no quick fix, no cure and you’ll likely have some measure of symptoms from now on. We’re wired differently than other people.

Start thinking in terms of trigger management, raising your thresholds and learning patience and self care. You will feel better. Most of us get to feeling 80-95% of normal most of the time, but it can take months or years. MAV is a lot like recovering from a closed head trauma.

To explain MAV to friends and family, I ask them to come to neurology appointments with me. I also ask them to read the VEDA Vestibular Migraine page and our Survival Guide. [Vestibular Migraine Survival Guide 2014]

Check out our Big Med Poll in the wiki, though it sounds like your neurologist is already knowledgeable. Trust them. Your diagnosis is correct. The course you’ve been prescribed is appropriate. I know you’re doubting it. The sooner you can accept it the better for your emotional health. That said, start seeing a therapist that deals with chronic illness. It’s as necessary as meds.

Triptans and really all rescue drugs, must not be taken more than twice a day or more than two days in a week. There are exceptions like meclizine and compazine. The pain killers (NSAIDS) and abortives like triptans and ergots must be strictly limited because not only are they very powerful and potentially dangerous but also contribute to rebound or medication overuse headaches which are actually worse than the migraines themselves. Most of us get used to using nothing by way of rescue meds. I use them rarely. When I do, my rescue meds are Fioricet, Compazine, Amitriptyline (nori’s cousin), Meclizine and Compazine. I’m careful. I follow the rules. I know whereof I speak when it comes to rebound headache.

It does get better. The early days are terrifying. It gets so much easier. Read our wikis. Learn the lifestyle modifications. Learn to take control and manage your condition. I just got home from a concert. I needed no rescue drugs. It gets better. You will feel better. I promise.

Welcome to the family. :heart:

Emily

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