Skip to content

Marissa’s Story – Living with Vestibular Migraine

  • by

Hi i’m marissa and um i have vestibular migraines so my story began um back in 2011 um my son was two and a half i was working with children um and i was stressed like at work it was just super busy we had long hours and i think i was just more and more stressed and i was getting more and more migraines that were just getting worse and worse um and one day finally

When i was driving to my parents house um i was almost there i was at a red light and i had my son with me and i just had this horrible feeling that came over my body um just an overwhelming feeling that something was wrong and i felt like i was on a ship i felt disoriented i felt my heart was starting to race i’m like am i having a heart attack am i having a

Stroke what’s going on here um and i knew like i just had to make it to my parents or something i just have to i was almost there so i barely made it there since i went home i tried to get a good night’s rest i thought you know by morning this is gonna just be better um i woke up and my whole world had changed um getting out of bed my legs felt shaky my vision

Felt so strained and uncomfortable like it was painful to look around um i felt like i had been drugged like i just felt so off my balance wasn’t there the balance was off um and then even stepping outside the lights everything seemed so much brighter and all the stimulus it was just it was so much to take in um and that was terrifying because i didn’t know what

Was wrong with me any movement just seemed exaggerated um for example i would feel when i walked sometimes like the floor was jumping like or if i was watching my hands or in the shower sometimes it felt like the whole shower was bouncing up and down it was so scary i’d have to hold on sometimes if i was the one that initiated the movement it did feel somewhat

Better riding in the car felt kind of better but this round of it sitting still for me was the worst um it just it felt i felt a constant rocking a constant moving um so sitting still was just so hard this first round with it um and at this point you know you start to think okay i must have a brain tumor there must be something seriously wrong with me and that’s

When i knew i had to seek treatment so of course i went to my primary doctor first um she kind of just i believe just blew it off as stress and anxiety kind of thing and but did refer me to a neuro uh where i eventually had an mri and things and of course all tests were normal blood tests everything was normal lots of eye tests um i saw a behavioral vision doctor

Who had checked my vision after i went to see a regular eye doctor as well so basically everything they would tell me was fine but inside i felt like something was so wrong and it was just so terrifying which um the neurologist did diagnose me then as having a migraine associated vertigo which today we call vestibular migraine as well and these kind of disorders

He explained are treated with antidepressants anti-seizure drugs um beta blockers you know these are just heavy duty meds it’s not just like taking a tylenol or something so i was really hesitant but i’m like i’ll try it so again this was you know 11 years ago where they didn’t know much about this illnesses now and so i got a hefty dose of an antidepressant that

Literally knocked me out for the entire day i had to sleep it off um and it just made me feel 100 times worse and i’m like okay this is not these are the kind of meds that they’re using i can’t do this and so i really had to try to approach it from a whole nother angle and see if there was you know some types of therapy or other things that i could do and that’s

When i did try vrt therapy vestibular rehab therapy and that helped but again nothing really took away that 24 7 feeling of rocking and all that kind of motion um and then i had scheduled a visit with the behavioral vision doctor again um and that the eye exercises helped me a lot because i’m so visual with this um so a lot of gay stabilization exercises just

A lot of things to help with my vision to make things easier so i did that and over time you know it was three years but things did start to slowly slowly get better i’d say i i did everything i was able to eventually do everything except drive during those three years but i worked part-time and things traveled but yeah i just didn’t drive for three years so

Then i entered a few periods of time where i had some remissions um which were wonderful i was able to work again in a classroom setting which was wonderful and just do things again with my family pretty normal life again um and then in 2020 when covet came about that actually was a pretty good year for me you know it was so hard for so many people but i had

My family all around me my son was home you know my husband was working from home and i think that gave me so much confidence so i started driving you know like i started out slow and then i adventure more and more and i just started going to my son’s soccer games and just doing things again with the family and that was just such a great year so now we’re in

January 2021 after i’ve had this wonderful year where i feel like i’ve completely been cured of this again and i’m slowly noticing some symptoms creeping back in um some brain fog some little offness unsteadiness a little dizzy now and then so i had gone to the er and they told me they couldn’t help me there was nothing they could do and referred me back you know

To my specialist and my neurologist said i was maxed out on treatments there was nothing else they could do for me and i would call their office in a desperate place for help because i would feel like i didn’t know what to do and wanting to go to the er again but knowing they couldn’t help me either and they would kind of make comments like oh we thought it was

Going to be you to call again or something you know kind of mocking me in a way where i was already in such a fragile state it was just horrible and it just made me feel even more isolated and worried about this whole situation because i felt no one could help me family around me just it was so hard for them to see me suffering so much i literally was watching

The clock to try to get through the hours of the day because i was afraid to be alone you know when someone would leave the house i’d be scared that an attack was going to come on and i wouldn’t be able to get up if i needed something and then you go into survival mode like i always said i put on my battle gear every day i had to get ready for battle to fight this

And i you come up with things you know you’re like okay i got a plan like if something comes about and i can’t walk i can always crawl there you know i mean you just go to these levels of thinking like how you’re going to survive basically and i couldn’t think about anything else in life but just trying to survive the day finally last fall i was able to find the

Right doctor finally um and get on the right medication so it turns out there was an option for me you can’t give up you have to keep pushing for answers and i have to say since i’ve been on that medication i mean i was able to start leaving the house and the first day that i went outside after i hadn’t been out for a walk in months months just that first walk

Outside was like i can’t even explain what that felt like because i couldn’t even step outside my front door i couldn’t even look out the windows of my house because the trees moving would make me so sick so i i was so you know that was so hard and to be able to finally be able to do that again and i’m just slowly taking these steps again and again and i mean even

Today i’m still adjusting meds um because we’re trying to get me to drive eventually but everything is so much better because i wouldn’t be able to do anything that i’m doing today um without having done you know what i did in the past i wanted to tell all of you first of all that you are not alone i felt completely alone and isolated having this condition and

It wasn’t that people didn’t reach out but you know when you have this condition you pull back because you don’t want to always be having excuses as to why you can’t go and do something so you’re not alone and vita is a wonderful organization that has a wealth of knowledge and resources that can help you and if you’re like me and you can’t look at the screen and

Read it have someone read it for you or have someone print it out because for me looking at a screen is still hard but if you give me a hard copy it’s i could do that so keep that in mind also ask for help when you need it i know that’s such a hard thing like i still don’t like asking for help i hate being dependent on my husband you know can you drive me here to

The store can i just can you take me here really quick um it’s so hard but sometimes you really do need to ask for help and counseling has helped me so much as well i think anyone that struggles with this condition just to have someone listen to you and validate your feelings is just so reassuring so i definitely recommend that um something that also has helped

Me is gratitude journaling so i started doing this a couple years ago and even if you’re having a horrible day write down three things that were good find three things even if your day was horrible if you know even if it was like i just got out of bed you know just sat up in bed and moved around a little that’s something so the gratitude journaling really helps

Because it just gets your brain thinking in a different way more positive you’re not focusing on all the negative um and finally i just want everyone to know that you are so much stronger than you think you are um when you think of chronic illness when i had this when i have this now when i was diagnosed it felt like such a weakness and it can really take you

Down and you can really feel in that weak state you know where you can’t get off the couch but i’ve come to realize that has made me so strong and is so powerful so just remember that um that you are strong and every day that you choose to get up get out of bed it’s a win and you can do it um also i do have a facebook page it’s called journey on living with

Vestibular migraine so if you’d like to just hear my full story there and i just try to put some positive things in there to help people give them hope so i hope that you all will journey on

Transcribed from video
Marissa's Story – Living with Vestibular Migraine By Smith Physical Therapy + Running Academy