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

[bhd]

Hi, I’m Brandon and a month ago I learned the symptoms I’ve been experiencing for nearly two years is MAV. I’m hoping this community can support me through this and even help me possibly find my solution!

This started in April of 2018 after I got back from a music festival. I noticed I felt dizzy, almost drunk, a few days after the party was over. I assumed I was just tired and thought nothing of it and eventually it went away. Until December 2019 I would have on and off periods where I felt ‘off’ and it was definitely concerning, but it wasn’t disabling. During the period between my first attack in 2018 and last December I got kicked around by my GP to different ENTs who told me the Epley maneuver, stress management, and meclizine would make these weird periods of vertigo eventually go away for good. Right after Christmas I got my first severe attack and knew something was definitely wrong. My GP referred me to a neurologist and in January I got to see one who explained to me these attacks I’ve been experiencing all this time is MAV.

My attacks have no trigger or warning, usually start between 6-8pm, happen every 1-3 days, and don’t go away until I fall asleep. My symptoms during attacks are horrible: disabling vertigo, feels like I’m walking in a bounce house, absolute confusion, muddy vision, severe nausea, difficulty hearing, crippling anxiety, and exhaustion. I can go from perfectly fine to a non-functioning human in the span of minutes and its terrifying. I have to stay awake and ride through the attack until I’m so exhausted I fall asleep sitting up because lying down and closing my eyes make symptoms worse.

I’ve been on B2 and Magnesium Oxide supplements for the past month. I’ve tried nortriptyline for the past month and got up to 30mg, but saw no improvement. My neurologist is moving me to venlafaxine next week to see if that helps. I’ve spoken to her about propranolol and triptans, but she doesn’t want to introduce too much at once. I’m praying the solution comes soon because every day it seems to get worse.

I used to love my life, but now find myself depressed. Between work, traveling, music festivals, road trips, exercising, and Disneyland adventures I kept myself extremely active. I was the life of the party and the most spontaneous person around. Now, I can’t bring myself to leave my room because at any time I might become suddenly incapacitated. I’m trying to stay positive but it’s incredibly hard when I’m in my 20s, the prime years of my life, and I’m spending it bed-ridden. Everything happened so suddenly and I’m still trying to process this new reality. I booked my dream trip to Europe for this summer right before these severe attacks began and I’m devastated I might not be able to go. I want to believe that one day I’ll be symptom free, but right now it’s extremely hard to see the light at the end of the tunnel.

I try to look at the bright side of things. I’m extremely lucky my job’s flexibility lets me work from home on bad days. I’m beyond grateful that I have solid health insurance, the financial means to search for a solution, and an amazingly supportive neurologist. Lastly, finding this community has been a godsend and I find comfort in knowing I’m not alone.

A few questions for you guys:

• How did you go about explaining this to your friends and family?
• How did you inform your boss and employer that sometimes you might be unable to do anything because of this?
• Are there any other medications I should bring up to my neurologist?
• My neurologist said triptans can only be taken 2-3 times per week at first sign of symptoms, but it seems like some of you are taking it daily. How did you manage to get approval to do that?
• Have you tried abortive medication you take during an attack that worked? What was it?

Thank You and I hope you’re feeling better!

[flutters]

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.

Emily

[Diana21]

Hi Brandon. I’m sorry you have to be welcomed to this community but from the bottom of my heart I can tell you that you’ve found your people .

In my case I get migraine headaches and the vestibular part as well. In my experience and according to most triptans don’t help much for the dizziness, they are very good for the headache part tho, your dr is right about only taking them 1-3 times a week because they can create rebound headaches and trust me those are not fun.

I’ve been on venlafaxine finge August last year and I’m doing great on it but one thing to keep in mind is not lose hope if it doesn’t do the same for you …I know how frustrating it can be when you hear wonders about one med and then it doesn’t work for you, it happened to me with nortriptyline.

You’ll see the phrase “it gets better” here at lot and although at the beginning it can feel impossible and cruel it definitely does …not only because eventually you’ll find your med but because you’ll learn to know the condition and what to expect …the beginning was the worst for me because of the unknown, i had bad anxiety and panic because of MAV and if you search my past posts you can tell I was in a very dark and desperate place but now even on those bad (like today) I don’t feel as anxious anymore because I’ve learned what to expect and it’s not such a shock or surprise anymore

I really hope venlafaxine works for you or that you find your med soon, personally i can tell you that this site is one of the best things that happened to me and I don’t know where I would be without these people so take advantage of them, vent and rant all you want and ask as many questions …you’ll feel the support without any judgement.

[Janb]

Hi Brandon
Welcome to the MAV community! I am sorry that you are struggling with MAV - the positive thing is that it has been diagnosed as it takes some people years to get a diagnosis. I was one of the lucky ones as I managed to find my way to one of the top Neuro-otologists in the UK in the first 3 months of being ill. This was mainly through my own persistence at trying to work out what was wrong and seeking out the right professionals and luckily I saw a Physio who specialises in the Epley Manoeuvre who told me I didn’t have ear crystals and needed to see a neurologist.
My friends and family could see that I was not well at all , but not many of them have understood what MAV is and how horrible the symptoms are, apart from my close family. I have a sister-in-law who has ear and balance issues and she recommended her Neuro-otologist Dr Surenthiran and luckily I was able to see him.
My employer was very good - I have worked with them for 13 years and was able to take 5 months sick leave on full pay. I could not have worked during that period.
I was prescribed Pizotifen and Dr S’s 6 Cs diet and that has worked for me - not many Neuro’s prescribe Pizotifen as far as I can tell. I am currently reducing the Pizotifen and am down from 4 per day to 2 per day and hoping to manage on one per day starting today. Fingers crossed!
I was told to take Migraleve if I needed to and did to start with, but haven’t taken it for the last year. I do take paracetamol and ibuprofen for a back problem but only at night so that I can get some sleep - I need to go to a physio / osteopath or chiro again!

I hope this helps - NB I am working and driving again plus am able to swim and walk etc for exercise which is something I didn’t envisage doing when it all kicked off in 2018. It has felt like a long haul and I still have tinnitus 24/7 but as long as I am not dizzy I can cope!

[Kara]

I’m still fairly new to all of this myself but I promise you are going to find so much good information on this site and everyone is so kind and helpful.

I’ve noticed it’s very hard for people to understand at first. I heard a lot of “oh yeah I get dizzy when I stand up for a few seconds and it goes away” or other nonsense like that. But the more you can inform them with actual literature I feel like the more people understand. I know @Onandon03 has shared so much great info that I’ve passed along to family memebers that are baffled by this whole situation.

I have sumatriptan for migraines as an abortive. But that’s for when I have actual pain migraines and have not noticed any improvement in dizziness when I need to take it. I have noticed slight improvement in my symptoms since starting nortriptyline. Still very dizzy but a lot of the weird symptoms are almost completely gone. I’m currently at 75mg. The jump from 60 to 75 has been a bit rough but I think the side effects will subside in a few days.

Wish you the best in your journey to feeling better!

[daisylight]

@flutters

you

Hi Brandon- I’ve been dealing with MAV since September of 2019. I try not to get into detail about the condition. I find it easier to tell people that I have “vertigo”, which is something everyone understands. Best of luck to you.

[Renee]

Hi Brandon,

Welcome to the forum of knowledge and support. I haven’t been dealing with MAV for long (since August of 2019), but don’t lose hope. You’ll find a solution that’ll help you manage.

I was the same as you, my attacks were daily, pretty much constant. Being tossed around from Doctor to Doctor. Finally found a neurologist who’s listened and helped me find a combination of meds/supplements/diet that has vastly improved my condition. Sure, there are bad days, thankfully not as severe anymore, but most of them I can function and even dare I say “live” with.

Once you find your triggers, get the proper treatment that’s right for you, and adjust your lifestyle, you’ll most likely be back to your normal self. I, like you, would be the life of the party. I obviously had to stop because I couldn’t even walk straight. Now I’m back to going out, partying, attending loud sporting events, feeling normal most days.

It’s a marathon. Sometimes friends and family will understand and support you, sometimes they won’t because they just don’t get it (like mine). Hang in there. There’s loads of information on here. Just use the search if you can’t find what you’re looking for.

[ander454]

Hi Brandon, how are you getting on now?

I would suggest not switching medication until a proper trial of 3 months on a therapeutic dose. I’m on my forth med (Amitriptyline) and I tolerate it pretty well.

In my opinion, its best to take on MAV with a parallel treatment approach. You can generally only take 1 drug at a time, which means you need to work on other areas while you wait for the drug to work. Here is my current parallel regimen (listed from most effective to least effective)

1. Amitriptyline 20mg
2. Cefaly (preventative mode 20min per day)
3. Migraine diet, not as strict as I used to be, but still important to eat well.
4. Exercise 40min per day, heart rate between 120 and 140bpm.
5. Sumatriptan + 2 x 325mg Aspirin for accute attacks. Its not a perfect abort, takes everything down a notch.
6. 1 baby asprin per day.

And I plan to add Emgality (CGRP) any day now - this particular drug can be taken with Ami and I hope its the final nail in the coffin, as I’m nearing 90-100% depending on the day.

MAV can be a real stubborn jerk, so be patient and work on all the basic things for migraine. You will see progress, but it may be darn slow.

Erik