I have to be a Best Man on June 13th

I am so anxious about this…it’s my best friend’s wedding, and I wish more than anything this could have happened before I was stricken with this life-ruining MAV. Not only am I nervous about standing up and giving the speech, but I’m dreading having to stand up in front of a 100+ person congregation for a prolonged period of time as the actual ceremony takes place. One of my absolute worst symptoms is the rocking/swaying sensation I get while standing, so I can’t imagine how horrible it will be having to stand in front of so many people for a prolonged period of time. It’s gotten so bad that I’m terrified I’ll end up in a wheelchair eventually. Fortunately, I’ve never actually fallen because of it, but it’s still a terrible fear that I WILL fall because of it.

This is ruining every aspect of my life, and it seems like no one ever gets better. I’ve searched every crevice of these Mvertigo forums and groups on Facebook, and it seems like the overwhelming majority of people with MAV continue to suffer to some extent - normalcy becomes a distant memory. Days turn into months, months into years, and before you know it, you’ve been miserable for decades. I don’t want to live like this anymore. Does it ever get better? Has anyone found relief that lasts for more than several months before the meds fail again? For every one person I find that says they’ve gotten truly, completely better, able to live a normal life and resume doing normal things without worry, there’s a dozen people who have tried every med in the book and found no relief. Then there’s many people who say they’ve gotten better, but then they come back months later saying the meds were a fluke!

I can’t stand this anymore. Everything is terrifying. I’m not asking to feel 100% normal again. I just want to be able to carry on with my life without feeling like I’m swaying back and forth or moving when I’m not. I don’t know how I’m going to function at this wedding.

Nick, from reading your posts it seems like the most urgent thing for you is to find some way of managing your anxiety, as it seems to be really taking over your life. Of course, stress and anxiety make symptoms worse for most people, and sometimes anxiety is also part of an individuals symptom complex for MAV - so it can be hard to untangle. I’m not in any way trying to devalue what you are feeling, or say that it isn’t aweful - IT IS. I’ve spend months sleeping upright cause I was so dizzy I couldn’t lie flat. I’ve spent months not making plans from one day to the next because I had no idea if I could function coherently. However,
I HAVE NOW SPENT MORE THAN 2 YEARS NOT DOING THOSE THINGS**. i GOT BETTER. Not only that but I am better - even on bad days I know it will pass - maybe not as fast as I would like. I’m not cured - I will always be a migraineur, but it is well under control and won’t ruin my life. OK, I’ve had to slightly redefine my definition of what is now normal for me, but I’ve made my peace with that and moved on.

Absolutely this condition sux, but as you do know from reading these stories, and form posts others have made on your other threads many of us can and do get good symptom control - maybe not forever, but for a lot if not most of the time, with the occasional relapse. As has been said before most of the people on board here are either newly diagnosed, having a relapse or still working on getting the condition under control. The majority of people are off having their normal life (or new normal life but hey for some there isn’t much difference between the two), so you are looking at a biased sample here. We don’t represent everyone with MAV by any means. I know it’s hard to see that when you are really down and freaked out by it all but perhaps spend less time reading the intractable stories and more time focusing on the many positive outcomes and small victories people have here (taking flights, enjoying holidays, getting the job even through you were MAVing your head off in the interview (Scott :lol: ). I’ve even delivered a client presentation when the room was wobbling - no idea how - force of will - but it was fine and they had no idea.

Do you have a sympathetic GP who would help you with some short term anti-anxiety meds to help you cope while you find the right medication combination for you to hit the MAVbeast on the head? I think it is important you find some way stop what seems to be a fatalistic spiral you are heading down. It is making you (more) miserable, making you even more anxious and that will feed the MAV beast even more. MAV on its own is enough to deal with. :evil:

Once again please know I’m not trying to belittle or devalue your real suffering here, I’m just concerned that you seem to be becoming more and more focused on the negative and that will feed the spiral. It is easy to feel helpless with this crap, but it’s important we fight that feeling, and also fight our corner to get the help we need.


1 Like

Excellent post above - agree that anxiety makes MAV worse. Love the phrase “MAVing your head off”!!

I can relate to your feelings Nick - I often thought that I’d end up in a wheelchair too. I am receiving CBT, which teaches you how to think when you have dizzy spells or increases in symptoms. Basically, we have a neurological problem which causes these events, but they are exarcebated by our own thoughts, fears and emotional responses. These in turn cause physical effects - heart racing, sweats etc and thus, we get more dizzy.

I am still trying to beat this MAV and return to normal, but there is a part of me that accepts I will be slightly imbalanced/dizzy for the rest of my life. This is OK with me as long I can control it and lead a normal life. Right now, I do everything I used to do, just at a slower pace. Perhaps I was living my life too fast before, who knows?

And as for being a best man - enjoy it - it’s a rewarding experience and the finest duty you can do for a friend. From my experience, when I absolutely have to do something, I can do it and my dizziness subsides and takes a back seat. I have had dizzy free days simply because I am so immersed in doing something (e.g. hosting a party, meeting a work deadline). Don’t let MAV rule your life.


i said this in another post before but you need to ask your dr. what the typical outcomes are/his success rates in treating this. this forum mostly represents the very worst cases i.e. ME and the most hopeless people. the people who are doing well wouldnt even find a support group online in the first place!!! plus im sorry but u never know who u are talking to online- they could be completely crazy, a complete moron, or just delusional- you have to take what is online with a grain of salt!!! i have definitely seen some real idiots and delusional people on here…

I am a new poster here even though I have been lurking for a while. My question is going to go against what some others have said, but here goes: can you talk to your friend about not being best man? The thing is, being a best man at a wedding comes with quite a lot of responsibilities and running around. It really is going to be your friend’s day, and the focus will be on him. I don’t know how big this wedding is going to be but if it’s big, then there may be people there who don’t know what’s going on with your health and they may not understand if you’re having a hard time. I just think you might be able to enjoy yourself more if you didn’t feel so much pressure to perform, you know what I mean? You could still give a speech, but if someone else was best man it would take some of the pressure off you.

I know wherof I speak: I got married about 3 years ago and I purposely planned the smallest wedding possible because I was so scared I was going to be sick that day. I’m sad to say this but I didn’t look forward to the wedding one tiny bit. Fortunately I felt well that day and had a great time, but it makes me sad that I let my worries ruin the fun of looking forward to my wedding. And it was because I felt that this was one situation where I couldn’t disappear if I got sick, or go lie down for a few minutes or whatever, if I got sick. I knew the focus would be on me.

If you can take some of the best-man pressure off, you will likely be less stressed, and you can still be an important part of the wedding. Take a cane so you can steady yourself if necessary during the speech. Find out beforehand if there is a quiet room where you’ll be able to go sit if needed. Being prepared will help.

I don’t know how long you’ve been suffering, but I think that it’s okay to sometimes give yourself some slack because of this ####ing illness. You can’t let it run your life, but you do sometimes have to make some concessions. Just my two cents.

Lorcalon, thank you so much for everything you’ve said. I keep relapsing into hopelessness - I really do need to try to get a handle on this incessant anxiety. I’m seeing my neurologist again in eight days (finally), so hopefully he’ll reevaluate my treatment plan with something, anything besides Gabapentin! And hopefully something to combat this nerve-wrecking anxiety. I don’t know how you were capable of delivering a presentation when the entire room was wobbling, but you know what? If you could do it, I can give this best man speech! That’s what I need to keep focusing on. No matter how many success stories I hear, I seem to always gravitate towards the negative stories, just because I become anxious at even the slightest possibility I might end up like them. I’m only one med in and one month into a diet that I’ve admittedly lapsed on two or three times. I can’t thank you enough for always being there to life my spirits up. It really does make me feel better.

Sails, that CBT sounds interesting and I may very well bring it up with my neurologist in a week. From my understanding, you’re fairly new still to this MAV thing, so maybe we’re in the same boat and just need more time to find a treatment plan that really works. The thought of accepting that I’ll have to be slightly imbalanced or dizzy for the rest of my life is somewhat unsettling and I don’t like to think like that just yet, but maybe I need to just accept it…depending on what the definition of “slightly” is lol. But it is good to hear you’re doing everything you used to do! I still force myself to do things, but it feels rather pointless since my symptoms are so bad I can never really enjoy myself. If I could just ENJOY things again…but thank you for your encouraging words. I hope that when I get there and get caught up in the moment my dizziness will, indeed, take a back seat to the proceedings.

Sarahd, I actually made a note to ask my neurologist that exact question when you suggested I do so on my last post! You have also been indispensable in talking me through these initial tough times and I can’t thank you enough. I’m so sorry that so much hasn’t worked for you. I wish I could give you some advice from what I’ve gathered on these forums, but I’m sure I could suggest nothing you haven’t heard or tried already! But you’re right. I can only hope that you eventually find something to lessen your suffering. You seem like such a genuinely concerned and caring person.

Rhoda, I appreciate your advice, as well. I refuse to back out now, however. That would be like admitting complete defeat and conceding to this awful condition. Though the alternative is terrifying, I have to at least attempt it and try. The cane idea isn’t a bad one at all - I’ve often thought of whether or not I should get one. I saw in November that you had been struggling with symptoms for years, but still seemed unsure whether or not it was actually MAV you were dealing with, and you said you’d have to wait several months before you could see a neurologist for an official diagnosis. Did you ever find a good, confident GP/neurologist who diagnosed you with this and is treating you accordingly? You, like Sails and I, just might be so new to this that we haven’t had nearly enough time to even begin recovering! Have you tried any of the meds of dieting techniques that have been discussed on these forums? It takes quite a while, but it seems like the majority of people do get relief with something eventually…I just need to keep reminding myself of that. Look at Lorcalon! And Nabeel! I’ve been speaking with MissMoss, MAVPrincess, and several more on FB as well, and though they admit they still struggle with it on the rare occasion where it’s not nearly as bad as it used to be, for the most part, they’re 90%+ better and living completely normal lives! There’s many others as well, both on here and on the Vestibular Migraine Professional FB page.

yea about the cane idea if you think it will help you feel more confident i say go for it! you could even get a hiking pole that looks sportier then a regular cane. I used one for about a year and now i use a walker- honestly whatever is going to make you feel most confident/comfortable/independent etc. i say do. I am 30 btw so its not like im old. you have to do what you have to do and there is no judgment in it. i am still self conscious to a degree but you just sort of have to own it and honestly most people wont care at all, or they will look for a second and then go back to just thinking about themselves. i admire u for wanting to still speak there is no way i could do that- my sister got married about a month before i got this problem and i was a bridesmaid- i know i could never have handled it- you are very brave!!! i think sometimes how lucky i was to get this problem AFTER her wedding and not before yikes!!!

I’ll chime in on "If you have to do something, you get engaged, and it works out. Some years ago I gave a presentation and at the very end, I spaced out. No prob, I had finished. However, someone came up to the podium and asked a question. I didn’t know what I was talking about, but somehow I gave him an answer he was okay walking away with. Having thought about it more, my ideal now would be to say, “I’m not feeling well right now. Please get in touch with me later and I’ll be glad to help you.” But there and then this didn’t occur to me, so I made what I had to offer work!

Thank you, David. This is just something I’ll have to force myself through. After all, it’s just one night! Hopefully I can keep the swaying under control.

You wont be this bad forever loads who get well don’t come back Im one of those people .

Thank you so much for the encouragement! Both here, and in the private message! You’re a literal saint, Blondie.

Nick - i read your post without reading the others, and my first thought was you need some CBT to combat the anxiety you clearer have. This is amplifying your MAV a great deal, and once you can get some therapy under your belt then it really should help. Any chance you can speak to your neuro about getting some, or at least a self help book on CBT?
I really do hope you take up the role of best mad; it would be so awful if MAV won on this occasion; you need to get in that position of controlling it, rather than it controlling you - i know easy to say etc, but how dare it stop you being best man for your best mate.
I’m a relative success story; i still lurk, and post and kind of feel a bit of a success on the 60mg of nort that i take, but i get relapses and hence reluctant to post as a success. These relapses can last a while but so far i have always managed to get back to baseline, or around 90% which is just fab for me.
I really hope you get to fufill that role on the 13th June, mind over matter and all that. Hold on to the chairs, sit down when you can etc etc
Dont let the MAV ruin another day.

It really is! The anxiety is unbearable, and I’m pretty much a nervous wreck 24/7. I’m seeing my neurologist again in two days and I can only hope he’ll prescribe me something o help me with that, as well as some new meds to try besides Gabapentin - assuming he doesn’t rediagnose me as a MdDS case when I inform him that I seem to get better when in a moving vehicle, which seems to be quite the opposite of what most MAV sufferers feel when in a vehicle. I definitely need to inquire about the CBT, as well.

I still intend to take on the role of best man, as well. I’ve already got my speech completed and I’m working very hard on memorizing it! Whatever I have - MAV or MdDS - I’m going to soldier through this day. I know my anxiety will increase more and more as the date approaches, but it’s just something I have to prove to myself I can do.