Do you all think this sounds like MAV?

Hi, I’m a 37 year old mom of 2, married, on disability because of all of these strange symptoms, which made it impossible to keep a real job… I should first tell you that I do also have panic attacks, but it seems what TRIGGERS them are the following symptoms:
BY the way this has been going on for about 15 years…
feeling like the earth isn’t there below my feet when i step to walk
bouts of slight nausea, only lasting for short time
sudden feelings of dropping, like falling off a cliff
sudden vicious spinning, lasts for about a half second(happens only a couple times a month)then stops
can’t drive due to strange visual things going on(hard to explain)and kind of a feeling of disorientation, feeling of veering too far one way or the other, also the glare kills my eyes…I really miss the freedom of driving myself places and i want that freedom back!!!
also…
sensitive to light, especially fluorescent(they trigger dizziness then anxiety attacks follow, shopping on a bad day isn’t advisable)
eyes feel like they are cloudy
feel like i am on a rocking boat when standing still
feel disconnected from my body, like my head isn’t connected
ringing in both ears, or a strange low hum on occasion
fullness in ears and in my forehead(although i do have sinus issues which doesn’t help any of the other issues)
earaches
can’t sleep with my head flat or will wake up feeling like on a rocking boat

I am just so tired of all of this being blamed on my anxiety disorder or my sinuses…this all started after I had my first daughter in 1995. Maybe something hormonal triggered it?? It has had some times where it is almost 100 gone, but then will sneak back up on me. I feel so cheated! I do have chronic sinus issues, but some of this stuff just doesn’t feel like sinus stuff…please anyone let me know if this sounds like MAV to you. I have recently decided I am not gonna play these games with the dr’s anymore. I want REAL answers! I just want to know if it is Meneiere’s, some other ear or eye/neurological disease or what! Have lost so much of my life because of this…I am right now taking 37.5 of effexor and 0.5 of klonopin for depression and anxiety which has helped some, but the floaty headedness keeps coming back!! If this sounds like what you all are experiencing, I would just like to know…maybe then I won’t feel like such a hypochondriac like they keep trying to tell me and I will get someone to listen to me already!!

Thanks for reading and have a nice day!
Lori

Welcome to Mvertigo Lori –

After reading through your story, it’s like I’ve read that about 100 times over the last 7 years. Textbook migraine if you ask me. I am in constant amazement that doctors aren’t picking this up and continually throw it all into the anxiety basket. I think you’ll find if you read through others’ stories above, you’ll be able to relate very easily and is a good way to help you make the dx in hand with seeing a good neurologist.

How long have you been on that med combo? It’s basically exactly what Dr Hain would likely have you on to start at that exact Effexor dose. You may have to bump it up.

If you don’t mind, it would be really helpful too if you could copy and paste your story here into the “Post Your Story” section for others to see clearly.

Hang in there … you’re on the right track. Ask as many Qs as you like. There’s tons of brilliant people here who can all help out.

Scott :slight_smile:

THANK YOU!! :smiley: now I just have to get a Dr. to acknowledge it…and I’ll glady post it on the other topic you mentioned…

:mrgreen:
Lori

Where abouts do you live Lori? There may be someone we can recommend nearby who others have seen. Note: Dr Hain is in Chicago.

Hi Scott,
I live in Central Missouri. I have tried a couple of dr’s in Jefferson City, but I never had heard of this MAV until yesterday (which I think is really sucky! I have been suffering for almost 2 decades thinking I am insane…rgh!) If you could find someone that would be great…currently I only have medicaid though which is a big problem in this area. A lot of the specialists will not take patients on medicaid. If you have any luck it would be sooo appreciated. I have accepted there is a problem, but I NEED to put a name to it. Does that sound strange? :wink:

Lori

Lori,

I know the lack of anything under your feet and sudden falling sensations VERY, VERY, VERY well. I live a little to the north of you, in Eastern Iowa. If memory serves me, there is a Mayo Clinic, or John Hopkins Center, or some type of major medical center in St. Louis that is one of the top centers for dizzy and balance problems. I do believe they are very familar with MAV. Otherwise, I would point you to Dr. Haine in Chicago.

Lori – it looks like Chicago is about a 7 hour drive from Jefferson City and less from St Louis. Can you grab a train or bus up there – or drive? It would be worth seeing someone in the know about all of this.

Best … Scott

— Begin quote from “Brian B”

Lori,

I know the lack of anything under your feet and sudden falling sensations VERY, VERY, VERY well. I live a little to the north of you, in Eastern Iowa. If memory serves me, there is a Mayo Clinic, or John Hopkins Center, or some type of major medical center in St. Louis that is one of the top centers for dizzy and balance problems. I do believe they are very familar with MAV. Otherwise, I would point you to Dr. Haine in Chicago.

— End quote

Hi!
Thanks for letting me know about the place in St. Louis! I will have to check into that…it’s only about an hour drive so that would work out perfect! :smiley:

— Begin quote from “scott”

Lori – it looks like Chicago is about a 7 hour drive from Jefferson City and less from St Louis. Can you grab a train or bus up there – or drive? It would be worth seeing someone in the know about all of this.

Best … Scott

— End quote

Hi there Scott,

Yea 7 hours is a ways away…lol…I am willing to go there if I have to though…I think if I have no luck here in Missouri that will be my only other option. 8)

LoriC,

Lucky I read your post! I’m in St. Louis, MO. I highly recommend seeing Dr. Joel Goebel at the Washington University Center for Advanced Medicine. He’s an experienced neurotologist and ENT specialist and is currently chairman of the department there. Also, he has plenty of contacts within Wash U’s neurology department and isn’t afraid to consult as needed. Unfortunately, it may take a couple of months to get in as a first-time patient, but he’s worth it. He knows his stuff and is very amiable. Let me know if you want more information about him since I’m currently under his care.

-GlassPawn

You could be the poster child for MAV/migraine.
You described me. Please read up on identifying migraine triggers. If you are being affected by things you have control over (foods, food additives, inhaled offenders - fumes, chemicals, fragrances, dustmites, new materials outgassing,etc, and you remedy the situation so you aren’t under assault continually, then you will be stronger to deal with the triggers you have no control over (hormones, weather, pollens, etc) Wear sunglasses for glare, some find it helpful to wear them in bright buildings too.