The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

New member...possibly have MAV?


#1

Hey everyone,

My name’s Steph and I’m a 22 year old university student from Canada. I came across this forum during one of my many symptom googling sprees (bad I know but it brought me here!) and I’m thinking I might have this ilussive migraine-associated vertigo.

A bit about my story:
-Have had migraines with aura since I was 16 (2006)
-Migraines run on both sides of my family
-Mine were always hormone related and were minimized by an adjusted birth control schedule (2 periods a year instead of 12 - hopefully that’s not TMI).
-The past year or so, they’ve become predominantly weather related and more frequent
-Avoided going on any medication because the antidepressant I tried in 2006 made me a zombie and other meds really bugged my GI Tract and I’m anxious about drug side effects
-I also suffer from Irritable Bowel, Gastric Reflux and Anxiety but these were all being managed okay

Then 4 months ago everything changed…

-had bad reaction to an antibiotic I was put on for a bladder infection - extreme dizziness and fluid build-up in the ear
-went off the drug, treated the fluid build-up, it drained a month later but the dizziness persisted
-saw a vestibular rehab therapist - his tests showed my eyes drifted to the right - assumed ear problem
-therapy worked for 2 months - my dizzy spells were going away! Then 2 weeks ago they came
Back with a vengeance - 24/7 dizziness now
-Saw an audiologist - all tests checked out fine
-Am now waiting for an MRI hopefully in 8 weeks and possibly an audiology balance/ dizziness test if they will accept my doctors referral (usually requires an ENT referral which means more waiting!)

-My rehab guy now suspects migraine associated vertigo though. I have been getting more migraines than usual the past 4 months and most of them have been silent (no headache), the symptoms
Have been changing too. I get very dizzy before and during them but am also dizzy the rest of the time.
-I take lorazepam for anxiety attacks but have found it also helps bad dizzy spells

-I dont have true vertigo (spinning) just dizzy, weird, sometimes eye pressure, sometimes head feels heavy, can’t focus, general “dizzy” feeling

-I’m also on a longg waiting list for a headache clinic / neurologist.

So my question is… Can migraine really be causing this? Like 24/7 dizziness even outside
Of a migraine? Or does this mean I have cOnstant migraine?

The dizziness is making me super anxious and my anxiety is now out of control. I am considering going On cymbalta and have heard this can treat MAV / migraines too. Is it worth a try? I’m paranoid about side effects though because I’m slightly a hypochondriac too.

How do you deal with the dizziness? Keep going? Stay hopeful? Especially with all the waiting and and misdiagnosis?

I’ve also just been diagnosed with nodules in my thyroid so am getting further testing to see if those are causing issues… But MAV looks like a likely culprit so I’m hoping to learn all I can from this forum!

Sorry for the long post, sometimes it helps to get your story down in words :slight_smile:

-Steph


#2

Hi Steph

Sounds to me, very much like MAV. I reckon you know that too, but sometimes it can be hard to accept that actually, all these symptoms that seem ‘balance’ and ‘ear’ related, are actually migraine. I disputed it at first as well… But looking back, it all makes sense, and comparing myself to everyone else here, it all makes sense, and reading Heal my Headache, was like turning every page and saying “Oh theres me!” every time.

In my humble opinion, your history points towards MAV (migraines with aura, migraine in the family and menstraul related migraine). And the fact you got dizzy when you had the antibiotic could be either a cooincidence, or the fluid build up happened, alongside the MAV kicking off concurently, not as a cause/effect.

Can migraine really be causing this? Yep. As I said, hard to accept I know. But your history and your description of the dizzies (ie not true vertigo, eye pressure, etc) sounds like MAV. Read Heal your Headache:

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)


It will help you come to a conclusion either way.

Like 24/7 dizziness even outside Of a migraine? Yes. Your brain is irritated. And You don’t even need to have a headache to be diagnosed with MAV. Don’t forget headache is just 1 symptom of migraine. Migraine is not headache. It is a neurological disorder whereby your brain has trouble processing sensory input.

Or does this mean I have cOnstant migraine? You have a chronic migraine disorder.

The dizziness is making me super anxious and my anxiety is now out of control. I am considering going On cymbalta and have heard this can treat MAV / migraines too. Is it worth a try? I’m paranoid about side effects though because I’m slightly a hypochondriac too… Definately worth trying yes. I know it’s scary going on meds, and you may encounter side effects, but its is worth pushing through in the hope of gaining control over this condition. You can get better by taking a helping hand with the drugs. You are not slightly hypocondriac- you have probably been told that you are whinging over nothing for so long- well, you’re not. You have a problem and now you wanna get a handle on it, that’s not whinging over nothing!

How do you deal with the dizziness? Keep going? Stay hopeful? Especially with all the waiting and and misdiagnosis?.. You try to keep positive. You take one day at a time. If you have a bad day, you think of the last time you had a good day and you know that you’ll get there again. I won’t lie, this thing isn’t linear and you won’t be better in 1 week, maybe not 1 month… but you WILL get better. It needs patience. And you have everyone here for support and advice.

Hope I’ve been of some help. I’m going through a crappy patch myself and can’t work it out so sentences are a bit garbled xx


#3

Hi Steph

Sounds to me, very much like MAV. I reckon you know that too, but sometimes it can be hard to accept that actually, all these symptoms that seem ‘balance’ and ‘ear’ related, are actually migraine. I disputed it at first as well… But looking back, it all makes sense, and comparing myself to everyone else here, it all makes sense, and reading Heal my Headache, was like turning every page and saying “Oh theres me!” every time.

In my humble opinion, your history points towards MAV (migraines with aura, migraine in the family and menstraul related migraine). And the fact you got dizzy when you had the antibiotic could be either a cooincidence, or the fluid build up happened, alongside the MAV kicking off concurently, not as a cause/effect.

Can migraine really be causing this? Yep. As I said, hard to accept I know. But your history and your description of the dizzies (ie not true vertigo, eye pressure, etc) sounds like MAV. Read Heal your Headache

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)


It will help you come to a conclusion either way.

Like 24/7 dizziness even outside Of a migraine? Yes. Your brain is irritated. And You don’t even need to have a headache to be diagnosed with MAV. Don’t forget headache is just 1 symptom of migraine. Migraine is not headache. It is a neurological disorder whereby your brain has trouble processing sensory input.

Or does this mean I have cOnstant migraine? You have a chronic migraine disorder.

The dizziness is making me super anxious and my anxiety is now out of control. I am considering going On cymbalta and have heard this can treat MAV / migraines too. Is it worth a try? I’m paranoid about side effects though because I’m slightly a hypochondriac too… Definately worth trying yes. I know it’s scary going on meds, and you may encounter side effects, but its is worth pushing through in the hope of gaining control over this condition. You can get better by taking a helping hand with the drugs. You are not slightly hypocondriac- you have probably been told that you are whinging over nothing for so long- well, you’re not. You have a problem and now you wanna get a handle on it, that’s not whinging over nothing!

How do you deal with the dizziness? Keep going? Stay hopeful? Especially with all the waiting and and misdiagnosis?.. You try to keep positive. You take one day at a time. If you have a bad day, you think of the last time you had a good day and you know that you’ll get there again. I won’t lie, this thing isn’t linear and you won’t be better in 1 week, maybe not 1 month… but you WILL get better. It needs patience. And you have everyone here for support and advice.

Hope I’ve been of some help. I’m going through a crappy patch myself and can’t work it out so sentences are a bit garbled xx


#4

Hello fellow Canuck!! Your post sounds a lot like me and yes, this definitely sounds like MAV. I was the same as you and I finally had to succumb to the meds (was not happy about that). I tried quite a few combinations, including cymbalta which worked for awhile but I started sweating so bad from it I had to go off. I am now taking two - 20mg of nortryptaline and 10mg of Cipralex (Lexapro). It is keeping my symptoms at bay and I’m about 80% functional. I also try to keep a regular sleep schedule, stress at bay (meds help this) and exercise. I still get the dizzy epsiodes right before my period. Weather changes are HUGE for me. My doc told me that Alberta is probably THE worst place in Canada to live if you suffer from migraine - great!

Not sure what part of Canada you are from but the doctor I see here is fantastic - took me 8 months to get in to see him but it was worth it - he specializes in women and migraine. PM me if you are in my area and want his info.


#5

Thank you both for your kind and insightful replies :slight_smile: I am seeing my doctor today and I think I’m going to give the cymbalta a go. Even if it doesn’t work for the migraine/dizziness, it will at least get my anxiety under control enough to survive the waiting time to see the specialists who can give me a definitive diagnosis. It also seems that you can take other meds for migraines along with the cymbalta, so at least I can always add one on later / switch over to a new one if need be.

I live in Alberta too! Our chinooks and constantly changing weather are definitely the worst for migraines! I will send you a PM for sure.

Thanks again for the reply, I am thankful to have found this community and not feel so alone in this struggle anymore :slight_smile:


#6

Hi -

You have my sympathy!!

I sit here typing this with a headache, on a day when they’ve predicted that our temperature (fahrenheit) is probably going to drop about 30 degrees - we’ve had near record warm temperatures and the cold front is going to hit this afternoon, and my migraine brain knew about the coming change last night.

:roll:

I have IBS too. Bleh. Mostly under control, though.

I agree with missmoss - read Heal Your Headache because you can learn about the diet and lifestyle changes, which give you some sense of control over this. Like Tamsha says, a regular sleep schedule is one of the most important lifestyle changes you can make. We can’t control the weather (oh how I wish I could right about now!) but if we work on all the other things that we can control, we can reduce the impact this migraine monster has on our lives. Take care, and best of luck!!


#7

Thank you :slight_smile:

I’ve definitely been very headachey this past week as well. The weather also has a huge effect on my migraines (we’ve gotten snow here in Alberta lately) and I find that more and more I just feel “migrainey” on a daily basis. It’s not even a full blown headache, I can just feel it in my brain, if that makes sense? Haha

I am definitely going to try schedule my life, sleep, eating, you name it, and hopefully the regularity will start to help out.

There’s definitely a link between migraine and IBS though. And having them both SUCKS so I feel your pain 100%!