Anyone diagnosed with MAV get these symptoms?

Hi Everyone,

Just wondering if anyone on this forum diagnosed with MAV or Migraine Equivalent relate to the following symptoms? I am not doubting my diagnosis from UCLA… but i have not read much on folks here who relate to very many of my symptoms. Maybe i just missed the posts…

I wake up in the morning generally feeling ok…then within a couple of hours i began to feel Tension building up gradually inside my head and if I listen quietly i can also feel a mild throbbing sensation going on. With the Tension and mild Throbbing…it creates a sense of motion that sloshes around in my head and goes every which way. This also affects my disequilibrium. If i don’t take my medication it will escalate and reach a point where it would be hard to function and do tasks at home, go to work or even to a movie. The motion would overwhelm me. The escalation could also bring panic and increased anxiety. Like i said the medication gives me some help where i feel more stationary and less motion…but for some reason can’t get the inside of my head to feel completely relaxed. There is this on-going tension. I use to have Vertigo episodes but luckily the last few years i have not had any significant ones…only a feeling like it’s going to happen but calms down. Watching my diet, stress, sleep patterns and working less hours has helped.

So is there anyone who can relate to these symptoms? It truly is the Silent Migraine type.

Joe

ps. taking Verapamil and Xanex on a daily basis

Joe,

would you want to hear from people if they’ve heard, of people who have had these symptoms? or just from people who actually have them?

Julie

Hi Julie…both would be fine…but even more interested coming from someone who is actually relating first hand to my symptoms.

Joe

I wake up feeling like complete horse *hit Joe.
Takes me hours to even remember I’m not dead yet. Oh! I’m not in the coffin after all. :shock:
Yeah that head crap starts with me every day. But then idiot here drinks coffee every morning.
I get this base of skull/mastoid stuff going on behind the ears and on the left side above the ear.
Lately if I go on a walk (with a cane) as I walk, I feel pressure building in my skull.
This nonsense really stinks.

My anxiety is wretched in the a.m. I can barely walk I’m so weak.
I also know with Xanax you can have interdose W/D.

I hit the xanax an hour after the coffee! I’m a jerk, what can I say. Lol.
I was having my hormones pulled at the lab today.
I was in a state of panic. Hyperacusis hit me hard and I was practially jumping through the ceiling when a door would shut or the noise level got to a certain pitch.
Xanax is great for relieving hyperacusis, I’ll give it that. (For all I know I got hyperacusis from the Xanax!)
Nothing would surprise me these days.

The inside of my head is always wavy or feels like something is moving around in there. I can’t stand it. I think it’s part sinus, part middle ear, part migrainous BS.
My skull always feels weighed down like my neck won’t support my head. I hate it.

Heather

Hi Heather,

Sorry your days are lousy too. Have you tried drinking coffee with 1/2 the caffeeine…and maybe a few months later try decaf?? The caffeeine…especially if it’s strong can really mess me up!

For me it’s the right side of my temple thata becomes a bit more tense and inside the head (all over)…fills with tension and just can’t get the inside head to feel relaxed. Have you noticed i keep saying “inside my head”?? The pressure builds to where most of the time i take the medication before it gets to that point. The Xanex helps to keep me more stationary so i don’t loose my mind…and the Verapamil i noticed helps to decrease the Tension a bit…but i wish it helped more.

My first diagnosis in 1992 regarding these symptoms was “Panic Disorder”. Then in 2006 when i saw Dr. Baloh that i was initially diagnosed with Panic Disorder…he said “the doctor wasnot that far from diagnosing me correctly”. Dr. Baloh said that Anxiety Disorders and Migraine are cousins of one another. I had never heard that before.

All i know is that in 16 years…i take much less medication…vertigo has dropped off significantly and the brain fog is less…but i still have the continued motion and tension in my head. I think that watching my diet…getting enough sleep and going to sleep each night about the same time…working a less stressful job and only part-time has given me some help.

Heather…do you have any plans to try any other medication or alternative medicine…like accupressure and or accupuncture?

Joe

I agree with you. Coffee does mess me up, every morning.
Now what kind of idiot would continue to do this?
Well I quit smoking after 14 years and I’m trying to hold on to one damn thing that makes me feel normal,
but even coffee affects me differently than it used to.
I just got back from the store and good god, I’m bouncing around all over the place after driving the car.
I am so sick of all this. Motion on the floor, motion in my skull, motion motion motion! Motion on the sofa,
motion in bed. I don’t want anymore MOTION!
waaaaaaaaaaaaaaaaaaaaaah.

Okay I ranted for the day. :wink:

I fully understand inside your head, Joe.
Some days when I am out walking (if you can call it that) the pressure increases in my head the longer I walk.
When I brush my teeth, it feels like my head is bouncing up and down inside!
I saw an ENT today and I told him my head is driving me nuts. It’s the bones–mastoid-- behind the ears and then even further over.
Then there’s the base of my skull and neck. I am sick of my whole head. I could have handled the floor but once the motion went into my skull,
I became downright hysterical. These days it’s like an elevator going up and down in the back of my skull.
All my eyeglasses are making it worse. :shock:

Nope no plans for alternative.
My main goal is to get glasses that allow me to see without making the motion worse!
Glasses are notorious for causing vertigo.

Heather-

Please, cut the coffee. Also, are you watching what you eat?

What meds are you taking? I know you have hormone problems, but what are you doing for yourself? (sorry, I’ve forgotten. Brain-drain, I guess)

Kim

Hey Heather,

Have you tried Decaf? Some of the decaf brands are not that bad. Also…folgers (1/2 the caffeeine)…not bad at all. I have been looking for a Meditation Class but haven’t found one yet…need something to just calm my whole body down…including the tension in my head. (i am beginning to sound like a broken record…Lol) Also need a Sweedish (all body massage)…that is very healthy. But it takes bucks…and if i start i like to have this done every 2-3 weeks.

Heather…i don’t necessarily doubt my diagnosis…but my concern is…seems like most MAVr’s on this board…when they speak of Motion i believe their talking about there whole body experiencing motion. I don’t hear very many explain the way we do with our head feeling the brunt of it…plus the sloshing around like a ping pong ball inside our heads. Head feels like a mildy squeezed dish sponge. Can’t get the entire tension out…only some with medication.

Heather…you did not explain about any throbbing going on (like a typical run of the mill headache…a throb w/out pain). If i listen very closely i can feel a gentle throb…mostly in the temple area.

I feel very unique in that all of the chronic motion began after one night waking up with vertigo…literally crawling to the bathroom and puked my guts up (1992)…until i had the dry heaves (don’t mean to sound so graphic). Then crawled to the couch and sat there for awhile…trying not to move for fear of more vertigo…and in about 30 minutes or so i noticed the rocking motion sensation and it would not go away and the rest is history. To this day i don’t understand how a severe vertigo attack could have created this dizzy nightmare that i have to manage each day??? Just wanted you to know how it all started…

Joe

Hi Joe
yes I do have these symptoms while migraining. the sloshing around I cant relate too I’m sorry.

jen

Joe,
Yes, I have a very similar pattern. Generally feel good in the morning (except the fullness in my ears is always worse when I first wake up). But after a couple of hours the feeling of tension starts to build in my forehead. As the tension in my head builds so does the sensitivity to head movements, light sensitivity and trouble focusing my eyes. Sometimes it’s just barely there through out the day, but other times it continues to build until I feel pretty miserable when I get off work at 5:00 pm. In these cases I try to go straight home and take a nap. This helps - in fact, if I can get an hour or more nap it often helps dramatically. It also seems like I had more spinning vertigo in the early days of this and less as it progressed.

Chaz

Joe—

Actually, I thought they described Mavers as having short events of vertigo?
I have motion all the time.
Actually I’m scared because in the middle of the night I got up to go to the bathroom
and I had my first feeling of something “slightly” spinning. I started to cry because
it seems every day is a shock to me and I am sick of it. I have enough motion
all day long and can’t even watch TV in peace. I don’t need any kind of spinning too.
I mean effing ay I need a break already.

I don’t think many Mavers have hyperacusis, but I do.
High pitched women’s voices now make me nauseas. What else? Geez.
Some days it’s so bad rattling silverware or a dish on the table sends me through the roof. :shock:
So who knows . . . I think symptoms can vary wildly and they all overlap with some other things.
I know I have some form of MDDS and MAV but I didn’t think MAV until my hormones went nuts
and then my whole neurological system went into overdrive. Sight, sound, smell, etc.

I tried decaf. It’s not the same. :frowning:

I saw a neurologist yesterday.
She’s an idiot.
The day before that an ENT I sawa long time ago brought up Menieres again.
I rolled my eyes. Why does every ENT think people have Menieres?

Next doctor . . . :lol:

Heather

Heather-

The neurologist you just saw, what did they say??

Jen…let me give you another example regarding sloshing around.

Think of yourself when standing in the shallow part of the ocean with water up to let say mid chest. You feel the little Choppy Waves from various directions slightly Nudgeing you…well that is how it feels Inside my head. Then think Tension + motion and it gradually increases to a point where i feel irritable and can’t think clearly. Begins to feel very squirrely in my head. These symptoms will decrease to a point with medication.

Joe

Hey Heather,

Your right…MAV folks who have vertigo attacks are generally short episodes like 30 seconds to one minute. But it kind of reminds me of Benign Positional Vertigo because if i have a vertigo attack…and once the spinning is over…i have to be very careful when laying down and have to place 2-3 pillows underneath my head or just sit in a chair and be very still till things calm down or i can have another vertigo spin. I have Motion all the time too…but the Xanex helps to decrease the motion to a point where i feel more stationary and have more of a life…you know, work a part-time job and go to a movie. Without the medication…i might as well just stay in the house and not have a life at all. Also…without med’s the sound of noise whether it be from silverware of just alot of people talking loud can really bother me. Even with medication sometimes it can be difficult. Crowds and loud noise bother me alot.

Heather…if decaf doesn’t work for you…i swear upon Folgers (1/2 the caffeeine). Don’t need Starbucks…i’m not a trendy person…Lol

Heather…sorry the doctors you recently saw were disappointing. Most of us know where your coming from. I have seen many Quacks over the years!

The foods and drinks that bother me most are: Caffeeine, Chocolate, Alcohol, Msg…and also lots of sugar. Also too much stress can have an affect on me. Too much Stimula like Crowds and Noise really does me in.

Joe

Hey Chaz…i don’t have the fullness in my ears. But i have the fullness (pressure) in my head (which i refer to as TENSION). Your Tension builds up in your forehead and my Tension builds up mostly in the temples of my head…particularly the right side. I agree with you as the tension increases so does the sensitivity to head movements. Noise and crowds excels the motion aand tension.

Chaz…i don’t know if your on any medication…but i am. If not for the medication i would not be able to function. The motion literally overtakes me and i would not be able to do much…probably not even leave the house, drive a car or hold a part-time job. That is how bad it gets. I have made some improvement over the years (since 1992) …for example less brain fog and less vertigo. Also take much less medication. But the motion and tension in my head is still very debilitating w/out medication.

Joe

yes joe thats it yes we do describe things difrently dont we.
but yes thats it.
i have that.
jen

— Begin quote from “AZdizzy”

Heather-

Please, cut the coffee. Also, are you watching what you eat?

— End quote

I went from 4 cups to 1 and can’t seem to give that last cup up. I did quit smoking after 14 years.
I watch what I eat, but it just sits there doing nothing. :lol:

Heather

— Begin quote from “AZdizzy”

The neurologist you just saw, what did they say??

— End quote

Well one of the things she thinks I have is a neuralgia. Occipital, no doubt.
I already thought that back in march when it struck like a thunderbolt.
Possible migraine variant, sure. (Any Neuro will say that, BTW)
Then she wanted me to go see Furman. I told her I am not subjecting myself to those tests.
She also wants to do a cervical MRI but I’m holding off for a little bit.

The appt. went way too fast and I want to have a relationship with a Neuro that I like and respect.
She made a couple flippant comments and I felt like clubbing her with my cane. :wink:

Heather

— Begin quote from “joseph0952”

You feel the little Choppy Waves from various directions slightly Nudgeing you…well that is how it feels Inside my head.

— End quote

I get that. Hate it. Waves is definitely a good way to describe it.
Sometimes I called it vibrating waves. :shock:

Heather

— Begin quote from “joseph0952”

Hey Heather,

Your right…MAV folks who have vertigo attacks are generally short episodes like 30 seconds to one minute. But it kind of reminds me of Benign Positional Vertigo because if i have a vertigo attack…and once the spinning is over…i have to be very careful when laying down and have to place 2-3 pillows underneath my head or just sit in a chair and be very still till things calm down or i can have another vertigo spin.

— End quote

Joe,

I don’t spin. Do all MAVers spin?
Only this last week have things gone in a kinda slow motion turning direction but it’s visual, and I know it came on because a nutty ENT messed with my right ear.
I do not attribute it to MAV. It happens only in the mornings. The ground now drops deeper and I have even more visual problems.
If there was no law against it, I would already have hired a hit man to dispose of the ENT. :mrgreen:
How can these Docs not know you don’t screw with peoples ears???

Something very strange happened to me the night of my MRI and I remember I could NOT lie down on the table. I had to hold myself up with my elbows but I didn’t
know why because I didn’t know what was happening to me. All I knew was I was whacked in the head, big time.

Heather