ARE MY SYMPTOMS MAV? Please HELP!

Hello folks,

Im going absolutely insane with some symptoms I’ve been having…

just wondered if anyone thinks these sound like a MAV related thing? Currently I’m seeing the doc, who doesn’t seem very helpful. but I’m freaking out that I’ve got a brain tumour (im guessing everyone goes through this thought )

Right, im gonna list my symptoms… for the last couple of months ive been getting these symptoms nearly ALL OF THE TIME!!!

. DIzziness (like an eye dizziness as opposed to a balance thing???)
. heavy feeling head
. odd feeling in eyes, almost like theres something behind them?
. spaced out, detached type feeling
. feel when i look at stuff my visual perception is off?
.groggy almost drunkish vision

lately ive also been getting these:

.head pressure (never really proper pain, but occasionally mild head things)
. pulsing feeling in head (again no pain)
. stiff neck
.gritty feeling in eyes

its getting me properly depressed and worried… mostly because its constant!

anyone any ideas or similar symptoms?

Yup - your first list is identical to the issues I have. Your second, aside from the pulsing feeling sounds pretty similar, too. I’ve even noticed that since this started my eyes are chronically bloodshot. I’m guessing it’s eye strain from the visual stuff being “off” for so long. Veeeery frustrating, I know. Some days/times are a little better, some worse, but those things are always there. (Groan…)

im glad someone can relate…

I am totally going nuts!! i cant do anything or enjoy anything, its horrid! all i want to do is be inside and lie down!

do you get a strange heavy eyelid feeling too? i even sometimes get an intense lethargy… like ive been drugged with a sedative, it comes on all of a sudden and wipes me out!

what tests can i ask my doctor for to get a proper diagnosis?

also, just thought id add:

i used to get kinda one of episodes of strange dizziness, like proper weird stuff! these would usually only last for about 30 mins or so, then they would go away… i always put these down to migraines as normal… now it feels like this is just one big never ending one! do other people have a similar history, as in did you used to nget episodic events… and it just got more frequent?

I tend to feel better/worse related to hormones, food (eating/not-eating, sugary/not sugary, that kind of thing), stress, and sleep (or lack thereof). If I do everything I can to minimize those triggers, I tend to feel less (though not completely) “fuzzy” etc. I don’t know what your triggers are, but maybe start watching things like that to help get a (small) handle on how you’re feeling.

I’ve had a couple of episodes of crazy spinning vertigo that went away (one lasted a day, one lasted a day - till I got a steroid injection). This stuff now, though, is constant. Just varies in how bad it it…

As for tests, have you officially been diagnosed with MAV? Really, it’s a diagnosis based on ruling out everything else. I’ve had vestibular testing, sinus/allergy testing, an MRI, and met with several different docs before I found one who actually made the connection between all of my weird, seemingly unrelated symptoms (I was never one to get severe migraine headaches). For me, I could tell perimenopause kicked things off, so I’ve also been to a hormone specialist who has confirmed, as best one can, that yes, I am in perimenopause. Solves the why, but not the how to fix problem…

Anyhow, hope that helps somehow. Don’t give up. Try to stay positive. You will improve. Be sure you’ve got a doc who’s on your side, and then start trialling meds, if you haven’t already. (I have yet to find the “right” one, but I can safely say I do feel a tad better now - even without that miracle med - than I did six months ago…)

Hang in there! :smiley:

Oh, meant to say… As for the lethargy, keep in mind that your brain is likely working overtime to straighten things out when they’re so spinny, so you’re bound to feel really zonked. I’ve kind of gotten used to feeling like I’ve been “run over by a steam roller” all the time. So now I’m more careful to not overdo than I used to be. And I’ve reconciled myself to the fact that for right now, at least, I need to cut back on my social life - with the full intent to resume what I can when I am able! And little by little I am… :slight_smile:

Erika, I was interested to read that a steroid injection took your vertigo away. Did the dr. give you this? Did you have migraine before or after the vertigo at all?

Thanks
Christine

Christine, My only guess as to why the injection worked is that this is largely hormonal for me, and steroids fit into the category of hormones/adrenals/that kind of thing. Now, I have to say - it helped (almost immediately) with the spinning I was having that day (my doc thought it was a sinus infection causing the dizzies). But that was rotational vertigo, as opposed to the constant visual vertigo stuff I’ve got now, which developed and progressively got worse over the next few months.

If it helps to figure it out even more (or to muddy the waters more :wink:

Goose,

Do you have any motion problems? Can you drive? Are you sensitive to light? Do you have any history of and/or family history of migraines? I believe those are some factors that point to MAV.

As far as symptoms, yours are almost exactly the same as mine. I’m no expert but I would say it definately sounds like Mav. It really is unfortunate that you have this crappy condition. It really does zap the life out of you. The good thing is, you found this forum. I know for me, I cried when I found this forum as I couldn’t believe I found others that were going through what I was going through. I had felt so alone and isolated at that time as no one understood what I was experiencing. In many ways, this forum has Saved my life.

There is also a lot of great information here that will help you educate yourself so that you are armed with all the facts when you visit your doctor.

I hope you get on a treatment plan soon and get some relief. We are here for you.

Mary

Hi Mary,

Thanks for your reply!!

What do you mean by motion problems? I do feel better when lying down and staying still if that’s what you mean?
I do feel sensitive to light in the sense that I’m always walking about outside with my eyes screwed up… Feel like natural light is too bright to open my eyes properly. And yes, I have had a history of migraine in the family. My Dad used to get terrible migraines.

I was previously getting odd “episodes” of strange aura type dizziness, that would hit me and be gone within an hour. These got more regular recently, and now for the last two months I’ve been constantly dizzy. Srangely, it seems the symptoms have changed though, as if they have ‘progressed’??? My dizziness is now constant more or less (it gives me about 10 mins in the morning of feeling normal, then kicks in) The dizziness seems to be less intense now that its all the time, but it won’t go away???

I 30 now, and remember a time about 15 years ago gettting a few migraine attacks… But they were ‘classic’ migraines and easy to recognise (flaahing lights, missing things in vision, headache, sick) I also remember around that time having a weird dizziness thing happen daily for a while, but it went away after time?

Does this sound like a mav type thing?

hi,

this is my very first post.

i have all your symtoms, including the pulsating in the head and thru out the body, i have daily vertigo 24/7, i’am off balance all of the day, temple headaces all day long, fatigue, eye strain and more.

it all started in aug 2011.
been dignose of migraine, after all the test came out negative, but i have not yet started the meds, will start on topomax this weekend, hope it works out.

Good luck with the topamax!

Be prepared that it can be tough getting started on topamax and that you might feel pretty bad for a few days. It usually took me about 5 or 6 days to get used to every 25mg adjustment in Topamax dosage.

Holy crap,

My symptoms seem to be ever changing at the moment… Now I seem to be getting really strange eye things going on?

It almost feels like there is air trapped behind my eyes, almost like gritty bubbles… Mostly over my right eye. Also feel kinda pressure in my temple (s) a bit like things are moving around in my skull, like bubbles???

Anyone else get this strange gritty, pressure almost trappedair eye feeling?

Man, I can’t hack these symptoms!!!

— Begin quote from “GooseLimington”

Hi Mary,

Thanks for your reply!!

What do you mean by motion problems? I do feel better when lying down and staying still if that’s what you mean?
I do feel sensitive to light in the sense that I’m always walking about outside with my eyes screwed up… Feel like natural light is too bright to open my eyes properly. And yes, I have had a history of migraine in the family. My Dad used to get terrible migraines.

I was previously getting odd “episodes” of strange aura type dizziness, that would hit me and be gone within an hour. These got more regular recently, and now for the last two months I’ve been constantly dizzy. Srangely, it seems the symptoms have changed though, as if they have ‘progressed’??? My dizziness is now constant more or less (it gives me about 10 mins in the morning of feeling normal, then kicks in) The dizziness seems to be less intense now that its all the time, but it won’t go away???

I 30 now, and remember a time about 15 years ago gettting a few migraine attacks… But they were ‘classic’ migraines and easy to recognise (flaahing lights, missing things in vision, headache, sick) I also remember around that time having a weird dizziness thing happen daily for a while, but it went away after time?

Does this sound like a mav type thing?

— End quote

It sounds exactly like MAV, but of course I’m no expert. I’m only an expert on my symptoms and I have been dx with MAV. You definately need to see a dr familiar with this and start on a treatment plan.

In regards to your last post, I just recently starting experiencing that pulse thing that you are talking about. Very hard to explain, but bubbles is what it feels like. Very strange and unnerving. I did read something about that on One of Haines articles here. If I find it, I’ll send to you. And it does appear that with MAV, symptoms are always changing. It’s so frustrating and debilitating at times. I am better than when this started but still having crazy symptoms. I’m praying for some more relief soon.

Let us know about any dr Appts.

Take care