New here, lengthy introduction

Specific Illnesses & Conditions VM/MAV
#1

Hi. This will be long so grab a snack…

I am an otherwise normal and healthy 45 year old woman, but have been struggling with vertigo since December 1, 2010. In November 2010, I started having pain in my right shoulder that didn’t respond to anything—I thought it was from kickboxing classes I was taking. At the end of November, I just felt “off” all the time—kind of bouncy, like I bounced when I walked and my head floated several feet above where it should be. Early in December I had my first vertigo attack in front of my computer screen, and a second one several days later while I was driving. I only had a few other true vertigo spells throughout the rest of that month but continued to feel lightheaded almost constantly.

By the time I saw an ENT in early January 2011, my symptoms were subsiding. The ENT plucked a wad of wax out of my ear (sorry, gross) and then wanted to do some table tests that were going to cost me $1,200 out of pocket. I don’t have that kind of money, so I opted out of the tests and he diagnosed me with BPPV and told me to come back if it got worse. I never felt 100% after that, but I found I had decent days and not so decent days, and I managed to manage the not so decent days okay. Vertigo spells came back in the spring and on and off in the summer, and a headache started to accompany the vertigo sometimes (I have rarely had headaches throughout my life)—again, I managed and just dealt with it, even though by this time the spells were worse (sweating, vomiting, feeling like I was going to die, and then afterwards pure exhaustion). I work at home, so I can rest when I need to most of the time. I felt pretty good throughout the fall of 2011 and even through the holidays.

Then in January 2012 things got markedly worse. Constant light-headedness, some degree of vertigo spins every day, near constant headache, face ache and/or neck pain. I’m not managing the bad days very well anymore. I have two teenagers, a full time job, a part time job (thankfully both jobs are done from a home office), and I’m taking a class (thankfully also online). But, I have always been fiercely independent and this crap is making me considerably less so. I’m a runner, too, and my running and general fitness has suffered tremendously. I am 45 and feeling like this is all brought on by hormones/perimenopause. It’s beyond awful around my period, completely unmanageable. I’m still trying to get out for a short run most days, at least when I’m not too nauseated, and oddly sometimes running is the only time I feel okay. Television, computer and driving at night seem to be setting the vertigo off lately.

So, I don’t have an actual diagnosis, but I have been researching my symptoms for over a year and identify most closely with MAV. I know there is much danger in self-diagnosis, but I cannot afford to go through the gamut of testing and doctors. I live in the U.S. and I have medical insurance, but the amount I have to pay out of pocket is preclusive—I’ve got a kid starting college next year and another kid in high school sports. I’m simply not going to spend thousands on myself right now. I do have my annual gynecologist appointment in a week and will have my hormones worked up to see where I am. I don’t like drugs of any sort but have had some success with Excedrin Migraine to knock the vertigo with headache to a manageable level. I am trying magnesium, vitamin B2, a multi-B, gingko, CoQ10, just added in the magnesium and B-2 yesterday.

Thanks for letting me share. I’m reading and learning a lot here. I think my next step is a neurologist after my hormone workup, but I am really hoping to figure out how to manage this on my own without jumping into pharmaceuticals, although I will take that plunge if need be. I don’t want to live like this much longer.

#2

Hello,

Just realised no one had replied to your post, think this can happen when a few new people happen to join at the same time.

It certainly sounds a heck of a lot like MAV, I think from your research you were right to assume that. The accompanying headaches are a bit of a give away. I hear that you don’t want to take drugs unless you have to, although I wouldn’t be too wary of them as they can be the only way out of this mess, and often the symptoms are worse than what any drug might do to you side effect wise etc…

That said, I see that you are already trying co enzyme Q 10 and vit B2. Not sure if you are aware there were clinical trials that proved these supplements could be as effective as a drug in managing a migraine condition. Obviously this is only in some people. You need to take fairly large amounts. I fished out the advice my neurologist gave me and it was to take 400mg of vit B2 once a day and coenzyme Q10 100mg three times a day. You could try one of them on their own at a high dose, this way you’d know which one was effective. It’s also cheaper, I’m in the UK and Q10 is very expensive here.

best,

Hannah

#3

Welcome, and sorry you had to find us. It sounds like you may belong here.

Perimenopause brought me here too. My mother didn’t know it (and she died before I turned the same age she was when it hit her), but she had the same thing: she got severe dizzy spells to the point of having to crawl to the bathroom, and we were the exact same age when this all started for both of us. Only I bet she was treated much worse by the medical establishment back then!

Not that it’s any picnic now - WE in the U.S. have horrible co-pays and deductibles (if we have health insurance). And that’s just the expense part - finding a doctor who understands MAV, then finding the right treatment are the next hurdles.

Maybe you already came across this in your reading, but our condition used to be called “Floating Woman Syndrome.” So your head floating description was perfect.

As a runner, you’re ahead of the game - lots of experts recommend regular exercise - but you may find that lifestyle changes are not enough to manage what we here often call “the beast.” I hope you can do it without medication, but as Hannah says, don’t rule it out completely as for many of us medication has given us our lives back. Take care, and best of luck.

#4

Hannah and maryalice, thank you so much for your replies. I am so thankful to have found this forum and to read about other people feeling the same things I do—not that I wish any of this on anyone else, but no one I know understands and my husband and my dearest girlfriends feel helpless.

Hannah, I’ve been on CoQ10 for a while, but started with 50 mg and just upped it to 100—perhaps I’ll go further. I am trying 500 mg of magnesium citrate and right now 200 mg of B2 on top of the multi-B. I don’t know if these things are helping yet as every day feels different and I’ve only been on the additional vitamins a few days.

Maryalice, I am also in the Midwest. I have never heard of the “Floating Woman Syndrome.” How interesting! I’m sorry your mom went through this also. I don’t believe I have any family history of migraine—I know my brother, dad, and my late mom never mentioned anything like this. I do have lots of aunts, uncles and cousins on my dad’s side, perhaps I should ask around.

We do have horrible copays in the U.S. and treatment costs are outrageous. I refuse to go broke trying to deal with this. That said, I am calling today to make an appointment with a neurologist at the nearby university. As I wrote, I’d prefer to go a more natural route, but I will not rule out any drugs. I am finally writing everything down now so I hope I can at least come up with some triggers other than the monthly hormone surge. It is weird, though, as every day is different, i.e., laying on my left side is okay one day, not okay the next; looking up is bad one day, down the next, etc.

I will continue to read and respond here as I try to figure all this out. What a wonderful resource this forum is!

#5

Hey, fellow midwesterner - Before you ask your relatives specifically about migraine, consider this - many of us didn’t know we were migraineurs! A lot of us may have had headaches before this hit (and a few of us had them rarely, and some MAV’ers never get any headaches), but a high percentage of migraine sufferers don’t even know they’re migraineurs.

For most of my life, I thought my headaches were “sinus” headaches because they were frontal and sometimes included nasal congestion. I always assumed migraine had to be one-sided and incapacitating: I thought people had to take to their beds because they had skull cracking headaches - I thought it always had to be a severe headache to be migraine. I could stay at work when I had a headache, so I couldn’t possibly be a migraineur. Mom always said she got sinus headaches and felt hers across her forehead or around her eyes - I got the same kinds of headache, so of course I was getting sinus headaches just like her. But I was wrong, just like her. My neurologist set me straight. Apparently a LOT of people make this same mistake.

Nasal congestion - even a runny nose - is COMMON with migraine headache. And migraine headaches don’t have to be severe - you can be in the moderate range of severity and still be having a real migraine headache. And it doesn’t have to be one-sided, though that’s the most common presentation.

#6

Hi there,

I’m working from memory here, but just to say I think with the B2 and the Q10, my neurologist specified that it had to be large amounts per day, those doses I’ve stated. I think this is what was proved to be effective as a migraine preventative, rather than small doses which I’m assuming may be good for you, but not potent enough to impact on migraine.

H