The Vestibular Migraine Community
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Hi! New here


#1

Hi, all. My name is Emily, and I was diagnosed with MAV a couple of years ago, after a bad bout that left me bedbound for a month. I’m 18 now, and I’m learning to cope with the near-constant sensory overload as best I can.
Luckily, since I’m naturally an introvert and homebody anyway, I don’t mind having MAV too much, but I’m glad to find this forum. It can be a bit difficult knowing that I will most likely never have a “normal” life, or be able to hold a “normal” job or go to a party or a regular college. But I’m hoping to take online college classes and be a freelance writer, so I think I can make it work!
Anyway, I think that’s about it. I just wanted to introduce myself and say hi!
~EmilyE


#2

Hi Emily,

Welcome. I don’t think you need to remain homebound cos of MAV. Might i ask if you have trailed any meds ?


#3

I haven’t yet, though I’ve tried Magnesium and other supplements, with minimal effect. I’m about to start Amitryptiline and hopefully that will help.
At the moment, even spending three hours working outside the house makes me exhausted/dizzy for the rest of the day, so although I’m not homebound—I can still go to uncrowded events, stores, etc—traditional college and work aren’t a very good possibility.
Like I said, it’s a good thing I’m an introvert anyway :slight_smile:
Thanks for your reply! It’s nice to meet you.


#4

Amitriptyline is a good drug and i am on it for 8 months @20mg. Hope it works for you. Good luck.


#5

@emilye First, welcome to the site, but sorry you have to be here. I can’t wish this condition on anyone. While I completely understand what you’re saying when you don’t think traditional college or work settings will be good for you, I wouldn’t write off those possibilities yet. A lot of people (most of which probably never even find the need to join this site) find a medication that gives them all or most of their functionality back. Since you’re just about to start your medication trial journey, that is a distinct possibility for you.

My brain goes to where yours is too though. Thankfully I got this condition about 2.5 years after I graduated college so at least I got my bachelor’s, but was planning on going to graduate school. After about 4 years with this condition I was working full time again, doing fairly well, and got accepted into graduate school. But then my work shifted back to being mostly computer based, the dizziness and symptoms came back, I had a weird barometric pressure and turned in bed induced vertigo attack, which all lead to a huge relapse that keeps getting worse. I had to defer from graduate school and eventually unenroll. Right now I’m housebound and can hardly do anything. If I do find a medicine to help, yes it’s possible some work settings would re-trigger symptoms or cause another relapse. Or since I have trouble reading print (like textbooks) and trouble with computer usage graduate school may never be a good idea as I’d never get to study as much as I’d want/feel I needed to. But, I’m still hanging on to the chance that it’s possible, as much as I have thought of other alternatives for the “just in case” scenario. Maybe make your scenario a “just in case” one. :wink:

By the way, one of my “just in case” scenarios is also freelance writing from home, but computer usage can really bother me and cause horrible blurred vision after the first hour of use or even less. So I’m not sure how that would work out. I have looked into software to speak to type, but have played around with it on google documents and it’s annoying to use.


#6

Nice to meet you, and thanks for your reply!
If you ever figure out a good way to write, please let me know—I’ve played around some with voice-to-type stuff too, but most of them are terrible. It takes more computer time to correct the mistakes than to just type it out in the first place! :smile:


#7

@emilye Lol yes same here, I agree. I’m faster just typing it despite the pain it gives my eyes! If you figure anything out on the typing let me know too! There is software out there that could be nicer but I figured I wanted to be committed to writing for money before buying the nicer stuff. Nice to meet you too.


#8

Welcome Emily! I’m a real veteran, 25 years of MAV. But I want you to know there is always hope. I was diagnosed in my 20’s, went on to graduate school and to have three children. It has been tough and challenging for sure but many joyful times too. Now I’m in my midlife time and hormones are causing a real spike in dizziness. Once again I’m faced with more limitations and challenges but know that we can always find purpose in our lives and we have each other to share the burdens with which helps. You keep your positive attitude and you’ll discover the way to be the best you that you can be, regardless of how MAV limits you. Fondly, liz


#9

Welcome Emily! As Jess says - sorry you have to be here…but since you do…good to see that you have the right attitude to not let this thing get you down. Certainly being an introvert and home body does help. Wishing you all the best with the meds - who knows, you may still be able to function in the ‘real’ world…whatever that is!


#10

Thanks for your reply and kind words! Nice to meet you, Liz. :slight_smile:


#11

Thanks! Nice to meet you. :slight_smile:


#12

Liz, I’m right there with you. Symptoms since my early 20’s, now I’m 45. Grad school and post-grad, almost grown kid and my own business. Nasty relapse this winter/spring, but life is so beautiful nonetheless. Nice to hear positive thoughts from a long-time vet! Emily (the other, older Emily)


#13

Hello younger Emily!

Welcome. We’re here for you.

A lot older Emily


#14

Hi, Emily #1! Nice to meet you, and thanks for your reply.


#15

This is a good community to be part of. It’s one of the more loving and accepting places I’ve ever been. I figure with my many health issues, I could be part of a whole group of random support groups (PCOS, endometriosis, disabling surgical adhesions, other stuff, MAV). I’ve never been part of any other one than this one. That’s a lot because even though MAV is a crappy thing, the people here are positive, uplifting, accepting and scrappy. I feel lucky to be part of this group, even if hard luck got us all here. Now you’re one of us for as long as you need us.


#16

I’m glad to hear you found a good support group here! Thanks for your kind words.


#17

Welcome to the board Emily!


#18

Welcome to the group Emily.

You sound like you have a good attitude already on how to handle this. As you try medicines and different approaches you’ll learn more and more what you can try, what works out and what needs to be set aside until later when you might try again.

I too have significant sensory overload and spend a fair amount of time at home. I plan my outings carefully and try to pace the days before and after to make it all work. It’s a juggling act :slight_smile:

I wish you well.


#19

Hi Welcome

Never say never - you can definitely get better from this. I am improving a lot on medication.

I’ll reply in more detail later but don’t think this will ruin your whole life; you can get back to normal.

Good luck!


#20

Hi Emily, you’re so young bless you but it’s great to hear your positive thinkin.
Helen