Describing your WORST MAV days?

Hi Everyone,

Was wondering how you would describe a day when your symptoms are acting up and more severe?? When i have a very bad day it feels like i’m on a boat in Severe Choppy Waters and i can become panicky like i’m loosing control. In a nut shell…the Motion overwhelmes me.

Would like to hear your stories.

Joe

Erm, well here we go. Heres an example of a ‘bad’ day for me:

Wake up with a thumping headache and feel sick.
Get out of bed, my head is spinning and I have very bad brain fog.
Get downstairs very slowly (my legs are shaking so I can’t go too fast) and have my breakfast.
My body is feeling very stiff and my muscles are very painful (all over including legs but especially neck and shoulders)
Have a hot shower because that makes me feel slightly more human.
Spend the day lounging around either reading or watching TV. Too tired to do much, counting down the hours until I can go back to bed and sleep!

I am 29 years old.

Thanks for asking this Joe, I have enjoyed the opportunity to share this as it feels too much like moaning if I tell everyone all the time!

Becky

My worse day would be when I wake in the morning and the waves are so bad it bothers me to do much of anything. When that happens I normally sit around with a cold pack on my neck which seems to give me some relief . But when I having a very bad day then my anxiety kicks in and I find it hard to concentrate or do anything other than wait for it to subside.

IfI have what I refer to as an attack it may take anywhere from an hour to eight hours for it to relase or subside and I am totally at its mercy to do anything other than wait. I get sweaty hands, numbness, severe spaical disorientation, and heart palpatations all at the same time. Doesn’t that sound like fun…not , not at all. :frowning:

It is a very scary time and it is nice when it is over. But after it is I am totally wiped out and normally just go to bed for the rest of the day. :roll:

Funny thing that you should bring this topic up today as it is one of those bad days for me.

Lately I can tell when it is going to be a bad day about as soon as I wake up. If it is a major struggle to bring myself awake, I know things are going to just get worse. All day long, I feel like I need to take a nap, the brainfog kicks in sooner or later, and my balance goes. When I say that my balance goes, I mean I start falling; usually straight down, but sometimes to one side or the other. Today I have a headache mixed in which is getting worse by the minute. I should point out that I usually don’t have headaches when my everything else is acting up. My head not only feels swollen but is, I can run my fingers anywhere on my scalp and feel the puffyness from the swelling. My eyes can’t lock in on anything as I walk, they start to twitch side to side: nystagmus. Then there is the motion sensitivity issue and I start feeling most motion incorrectly, either exagerated or hardly at all. I start walking into things simply because I can’t tell how fast I am walking up to it, or how fast I am turning a corner. Since I started the meds I usually don’t get the rocking/swaying and room tilting sensattions anymore. When I do though I know I am in for a rough ride.

By the way Joe, today I can describe the way my head feels quite like you do. Like a tight band has been rapped around it, and it is trying to swell out of the band at the same time. I expect that I will get that wrung out feeling later today.

Waking up with vertigo … ‘pinballing’ down the hall & knowing I’m gonna spew before I can make it to the bathroom … hoping none of the cats get in my way so I don’t have to wash them off later … hearing my dtr say “Mom can’t talk, she’s got vertigo again.” Sending that “Sorry but I can’t come in to the office today” email & wondering how many sick days I have left. Having my husband say “Is there anything I can get you?” (“YOU KNOW THIS HAS HAPPENED BEFORE YOU IDIOT JUST LEAVE ME THE *%&! ALONE!!!”) (Poor man.) And “NO MOM! I CAN’T HAVE JUST A LITTLE OF YOUR STINKING SUGAR-FREE CRxP BECAUSE IT’LL MAKE ME VOMIT!!!” (Thank goodness I never actually said that to my dear momma … but I thought it more than once.) And the look of pity & heartbreak in Dad’s eyes when he’d see me - his little girl - on one of my bad days.

And then there were the tears … pitiful, useless, irrational, but I am woman and they couldn’t be helped because it was all so frustrating.

Geez Joe, this is way too depressing. Tomorrow’s Thanksgiving for pete’s sake!! Let’s all be thankful for that turkey we’re going to spew!!! And for those dear dogs & cats we’re going to spew upon! :mrgreen:

And THANK YOU GOD FOR TOPAMAX & EFFEXOR & VALIUM & XANAX & PROZAC & VERAPAMIL & NORTRIPTYLINE & ATENLOL & NEURONTIN & every other drug that’s been developed in an attempt to help us feel “normal”.

So far today is a good day!!! I am thrilled…went and walked with my husband this morning and I can not always do that.

Yes, tomorrow is Thanksgiving wishing you all a very nice day! :smiley:

Timless, you are getting better already! :slight_smile:

I wake in the morning with a headache and stiff neck. I need a crow bar to open my eyes.
Wander off to the bathroom and scare myself in the mirror.
Eventually have a shower which promotes a migraine headache, especially if I wash my hair.
Feel surreal and grumpy walking to the bus. Headache really kicks in once I’m on the bus.
Sit in front of my Mac at work and feel dizzy and more surreal.
Battle a headache and feeling stoned most of the day.
Don’t feel better until I get home and eat dinner. Usually not too bad by bedtime but sometimes worse and anxiety might start.

Cycle starts again.

Scott 8)

I wake up & open my eyes and my vision is immediatly jumpy & not able to focus properly on objects.

I feel tired, have a heavy head/headache& not properly ‘refreshed’ after sleeping.

Shower normally wakes me a bit more, but generally feel ‘off’, ‘spaced’, ‘detached’ for most of day. Imbalanced as well, although would never fall over. Never had true vertigo either, but feel like I might spin out?!

Seems to improve by evening & when not a work staring at computer screen.

I have theses symptoms everyday to different degrees. My good days are when I dont have a massive headache & have some clarity in my mind. I feel exercise also helps in this - doesnt take away dizziness , but relives the other stuff.

This is all a bit depressing - chin up - I KNOW I will find another med to get me to atleast 90% again. Like Howie eh Scott?

Hi everyone -

I could have written exactly what Dizzy Rascal 1983 wrote. That describes me to a “T.” I am having one of those days today. Very detached and major brain-fog. It’s Thanksgiving and I’m trying to keep my sights set on what I am thankful for. I have so much but when I’m having a bad day, it is so hard to keep the good things in focus. Nothing seems to be in focus on these days.

Molly

Thanks to all of you for sharing what your worst of days with MAV can be like. Based on what you guys said…seems like our symptoms really do vary from person to person…but with some similarites like having serious brain fog.

Joy…many years back my worst of days would be waking up with vertigo (like yourself) and throwing up. Those days were like a nightmare! But luckily the vertigo has tappered off the last 6-7 years so it’s not an issue anymore for me. I might get a half spin once or twice a year. But the Motion continues (I feel like i’m moving and the rest of the world is calm) and if i’m having a real bad day it’s like i’m deep sea fishing with lots of Wave-Like-Motion which Timeless has mentioned. Luckily that happens only on occasion. Even though i don’t get the Classic excrutiating type of headaches and don’t even get Aura’s…i still believe what i have is a form of headache because i can feel the slight to moderate Pultzing/throbbing in and around my head…and the Tension/tightness is another factor. Instead of pain i get dizzy motion. I feel like i just can’t think clearly which is the brain fog and trying to carry a conversation with people if the motion is intense…is hard to do. Most of the time my head feels like a slightly squeezed sponge…:-(…getting a Diagnosis in late 2006 was half the battle. If i could only find a medication to get the inside of my head to feel Relaxed again…that would help immensley!

Timeless…i don’t hear many people describe their symptoms as “wave-like-motion”. That is where you and i have something in common.

Thanks again to all of you for your share.

Joe

Well my wave like symptoms have been bad this afternoon. I am sitting here now with an icepack on my neck and I think the weather may have something to do with it as it has been rainy here all day.

I have really felt yucky this afternoon and I am not sure why as the last few days were really good.

Timeless…do you feel the wave-like motion 24/7 or is it on occasion? Do you feel normal most of the day then the symptoms begin to act up? How did your condition start initially? I feel the motion all the time…with medication it is less but w/out medication i become totally overwhelmed. Even before your condition began have you had problems with Motion Sickness? That is something i have never outgrown.

Joe

— Begin quote from “joseph0952”

Timeless…do you feel the wave-like motion 24/7 or is it on occasion? Do you feel normal most of the day then the symptoms begin to act up? How did your condition start initially? I feel the motion all the time…with medication it is less but w/out medication i become totally overwhelmed. Even before your condition began have you had problems with Motion Sickness? That is something i have never outgrown.

Joe

— End quote

Well for the past year the wave like symptoms were basically a 24/7 feeling , some days much worse than others and yes when it gets to that point I am overwhelmed. But the last three days have been very good days until today…and most of the day was kokay but it got worse as the day went on…not near as bad as some others but very frustrating considering the last few day s were so mild.

I don;t really recall motion sickness before, I went deep sea fishing with no problems , but would not even think of doing that now.

Timeless…if you are having this Wave-Like Motion most of the time…are you able to go out to movies, resteraunts…or even hold a job? Without med’s the motion overwhelmes me and i would end up at home.

Joe

— Begin quote from “joseph0952”

Timeless…if you are having this Wave-Like Motion most of the time…are you able to go out to movies, resteraunts…or even hold a job? Without med’s the motion overwhelmes me and i would end up at home.

Joe

— End quote

Joe ,

I have been out of work since the end of July trying to one figure out what it was, and now trying to figure out what is going to reduce the symptoms so that I can return to work. I do not go to the movies or restaurants very often because of the triggers I encounter. Mainly the perfumes and chemical smells. Plus watching the movies on big screens make it much worse.

We do go to the mall and walk in the mornings before they open , when no one is there and it seems to work out okay. i can go to the store but choose to go at off times so as not to encounter the triggers or at least reduce the possibility.

Last week was a good week up until Friday and the symptoms have been bad Saturday and yesterday. They seem to get worse in the afternoons.

I do not know just trying to figure all this out and how to manage the condition since there seems to be no cure.

Does anyone have what I call the heavy head syndrome? Like this afternon my head feels like it weighs 200 pounds. It does not hurt but it feels like it could just fall off my neck.

And my wave are worse this afternoon, they were okay this morning.

I am really sick of this and wish and only hope I can find something to even it out.

If everyday was as good as this morning I would be okay with that , but it seems the symptoms get a bit worse in the afternoon and evening.

And by the way does driving make any difference to any of you…I usually do drive when we go somewhere but not alone, but I cannot stand to ride. Is that just crazy or what? :shock:

RE "heavy head syndrome: Oh yeah, been there, done that - bowling-ball-balanced-on-the-golf-tee thing. Try to get someone to rub your neck & shoulders. That helps me a lot.

Driving doesn’t seem to bother me - as long as I’m doing the driving. And I’m usually okay (lately) when I ride ‘shot-gun’ while husb drives, as long as I don’t do anything stupid, like look down at my feet/into my purse while going around a curve or try looking in the back seat. Definitely no reading while I ride … even too many street signs & I’m nauseous. Occasionally I can read a map while on a trip, but usually dtr has to do the navigating. (It’s better now that she’s 13. When she was younger we’d end up in all sorts of weird places :lol: )

— Begin quote from “joy”

RE "heavy head syndrome: Oh yeah, been there, done that - bowling-ball-balanced-on-the-golf-tee thing. Try to get someone to rub your neck & shoulders. That helps me a lot.

Driving doesn’t seem to bother me - as long as I’m doing the driving. And I’m usually okay (lately) when I ride ‘shot-gun’ while husb drives, as long as I don’t do anything stupid, like look down at my feet/into my purse while going around a curve or try looking in the back seat. Definitely no reading while I ride … even too many street signs & I’m nauseous. Occasionally I can read a map while on a trip, but usually dtr has to do the navigating. (It’s better now that she’s 13. When she was younger we’d end up in all sorts of weird places :lol: )

— End quote

Driving is much better for me than riding. Glad to know I am not not the only one with the Bowling ball head! :lol:

— Begin quote from “Timeless”

Driving is much better for me than riding. Glad to know I am not not the only one with the Bowling ball head! :lol:

— End quote

Ditto that for me! 8)