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Old 07-11-2007, 11:30 AM   #1
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Menstrual MAV?

Well, I had my first major blip - dang was it a doozy. Quick background - diagnosed with Labyrinthitis in March 2007, was feeling better in April, hit HARDER in May, great in June, hit again in July - see the pattern? I am starting to wonder if I have (perhaps in addition to Labs) Menstrual Migraine Associated Vertigo.

I was doing FABULOUS in June - around 90%. I didn't have to take any medication (Ativan, Compozine) like I did in May, and just minimal Advil for intermittant headaches. I thought I was heading towards the end of the dizzy road.

HOWEVER, my monthly cycle hit my on July 4th. That day I had a horrific headache (which I got rid of my taking some Vicodin), but each day that followed I started feeling the same old inner ear symptoms creeping back. Slight dizziness, fatigue, insomnia, slight headache, dingyness, anxiety, heart palps, hearing sensitivity, slight ringing, etc. I thought it was just residual effects of "that time of the month" and possibly hormonal imbalance.

Then the crud hit the fan yesterday. I was sitting down and watching my 2 year old play and the world suddenly turned upside down (literally). It felt like it did during the ENG test when he blew cold/warm air into my ears. I immediately fell to the floor and braced myself. It lasted about 15 seconds and was gone (but followed by swaying). This was followed by a run to the bathroom, probably because of the stress it caused me.

What in the heck??!! I have always heard of blips - even Scott's story about getting a major setback years after he dealt with this (even worse than the first time). This was the first time I experienced an actual VERTIGO ATTACK. I have always felt dizzy and off balance, but this was downright frightening. What if I had been driving!!??

I wonder what route I should be taking now. I have not ever done any VRT's because I was getting better on my own without (time heals). But should I start with them? Does anyone else experience major setbacks around "that time of the month" and how long does it last? This is very disappointing, especially considering I have an extremely busy weekend coming up. I have a feeling I will be hitting the ol' Ativan bottle big time.

Even guys out there - any feedback?

 
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Old 07-11-2007, 11:37 AM   #2
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Re: Menstrual MAV?

Also, another bit of information - at the time I got my spinning attack yesterday, I wasn't moving my head around at all. I was however looking off into the distance and focusing on some fruit hanging off our fruit tree. I have noticed this past week that my vision seems to trigger the spins. If I am looking at something busy - even the computer right now - I seem to start swaying and spinning. What does this mean?

 
Old 07-11-2007, 02:24 PM   #3
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Re: Menstrual MAV?

Well....I had one of my first major vertigo attacks while riding my motorcycle. You really have to keep your cool when it happens while driving.
I was lucky due to that fact I was driving on a straight stretch of road at a lower speed.
That was two years ago and have not had an attack for about a year now. This is mainly due to the fact that I have lost balance function in both ears so there is no confusing signal from one side to cause vertigo.
I found that after experiencing a few attacks you learn not to panic immediately. At first the attacks would almost throw me to the floor. After awhile I was able to remain standing through most of them. Keep in mind that my attacks would only last maybe 10 to 15 seconds at worst. Most would last 2 to 5 seconds. As I mentioned, they did go away only after I had full bilateral loss, this in itself presents a whole new set of problems.
Your description is very accurate, I would often feel that I did a full barrel roll, the whole world would go upside down and crazy.

 
Old 07-11-2007, 02:51 PM   #4
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Re: Menstrual MAV?

Thanks manybikes for your input. You actually gave me some confidence about driving being that you "survived" one of those dreadful vertigo attacks while driving as well. I was starting to think that I was going to be majorly panicked during driving - which I am already on edge doing just because this ear stuff causes anxiety.

And you are right - mine only lasted about 10-15 seconds (thank God). I yelled "WOAH" and fell to the floor (freaked my two year old out for a sec). It was SUCH a weird and horrid sensation and I hope that each one is more manageable just because I know what to expect now. eeeeek!!!

More and more I am thinking I have MAV. I was hoping for a more short term one like Labs or BPPV, not the dreaded MAV.

I'm sorry to hear about your full bilateral loss. I would be interested in hearing more about that - how did it happen, etc...

 
Old 07-11-2007, 03:37 PM   #5
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Re: Menstrual MAV?

Hello,

Not sure about this but I was told in my neurotology department that it is very unusual with VN to have a spinning vertigo attack of the type you describe past the initial early stage attack. It's one of the ways they differentiate btwn MAV and VN. I have MAV and recently had a freakish spinning attack, something that has only happened to me once before.

It's funny you refer to the dreaded MAV, for some people it's a preferred diagnosis simply because its treatable with drugs. My drugs don't control it completely but I know of a number of people who have taken the drugs for it, then got off them a while later and never looked back - are 100% well. I'm talking about people who were extremely dizzy. So if it does turn out to be that it may not be the horror diagnosis you imagine.

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Old 07-11-2007, 03:57 PM   #6
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Re: Menstrual MAV?

Thanks so much hbep for your input as well. I guess I was thinking that MAV has the stigma of "migraine" attached to it, and migraines I thought were pretty much stuck with a person. Yes, they can treat it with meds, but I kind of thought migraines were pretty much with you for life. I would LOVE to find out differently. I am a little scared about the whole thing because my brother has lived with migraines all of his life and has been miserable. I was always the fortunate one without migraines, but now at the age of 40, here they come!

As for Labs/VN/BPPV, I was thinking these were a little more desireable because from what I have read, once Labs is gone, it's gone (it may take a while, but it's gone). And they can also be helped by VRT's as opposed to MAV - it's more like getting the migraine under control instead of shaking those rocks loose or re-gaining vestibular function. Maybe I am just thinking that MAV is more permanent, but it sounds like you know people who have gotten over it. I am just now starting to focus my attention on MAV instead of LABS and start reading about it, so any more info you can provide would be helpful!

 
Old 07-11-2007, 06:29 PM   #7
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Re: Menstrual MAV?

Hi Missy7:
Cause of my bilateral loss is still a mystery. Started out about 3 years ago when I noticed that lights would bounce at night. I felt fine otherwise.
I used to waterskii a lot every summer. That summer when I went for my first ski I couldn't get out of the water on a single ski deep water start. I could do this with my eyes closed before but could no longer even come close as I could not keep my balance coming out of the water. Everyone in the boat couldn't figure out what was wrong with me. I went to several doctors who said I may be getting too old for certain sports...huh?
Fast forward another year and last June I was suffering pretty bad, had trouble making it throught the day and doing simple tasks. I flew to the House Ear Clinic in Los Angeles and they ran a series of tests and told me I had no detectable balance function in either ear. No cause, no cure, no drug to help me! They were actually suprised that I was able to walk unaided.
Took me awhile to relearn how to ride a bicycle, drive a car etc. but I look and act pretty normal....as long as the lights are on. I am extremely visually dependant for my balance. I am to the point where I can actually take my motorcycle on short jaunts (with a helmet and body armor just in case). As for driving this is what I did:
1. stayed away from the freeway and would always take the secondary roads. This allows you to keep the speed down and the ability to safely pull over.
2. I initially always travelled in the right slow lane and was very aware of having a clear shoulder to pull over to.
3. Don't push yourself too hard. I started by just driving a block to the corner store etc.
4. Drive with someone you trust and understands your problem. Ensure they know when you are in trouble and what to do.
5. Only drive on the good days, do not drive when you are feeling unstable or too shakey.
It is a long tough road and I still have days where I just feel hopeless. But at least I am making some progress (even though it is painfully slow)
Hope this helps

 
Old 07-12-2007, 08:58 AM   #8
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Re: Menstrual MAV?

Oh wow, I am so sorry to hear about your condition (no cause, no cure). How very very horrible to not have any kind of explanation (or help!). I think a lot of us on this board can at least understand the part about not having a clear answer. I am STILL unsure of what exactly this thing is that keeps coming back month after month and making me dizzy.

I do appreciate your feedback about driving. Those steps are exactly what I have taken when I am feeling anxious, and will definitely continue those especially now since I had one of those freak spin attacks.

This is so depressing...I know, I know, keep my chin up and slowly start to recover, etc... But it is just so frustrating, this one step forward, three steps back stuff.

Thanks again for your feedback!

 
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