Looking for input -- things that "don't add up"

Hi all,

As I’ve expressed to a couple of people individually, there are some things about my … experience with MAV that really don’t add up for me. I’d like to know what people make of some of my comments below. (e.g,. if you’ve experienced similar ‘oddities’ before, or if something casts doubt in your mind on the diagnosis, etc., etc.)

(1) Tolerance to TVs, computer screens, console games. A lot of times, when I’m feeling really woozy, I’ll go crank up the Nintendo “Wii” or similar. Works almost every time – while I’m doing it. TV is so-so, but if I use the computer, I actually begin to stop noticing (as much) my lightheadedness. This confuses me no end, especially given how most MAV’ers / migraineurs say they can’t stand those activities.

(2) Driving/riding in the car helps – even in the rain. I don’t feel lightheaded in the least! When the car stops / breaks, yes, somewhat. I’ll even say “I’m going out for a drive” to kill time just so I feel OK for a little bit.

(3) Hot shower – this often helps me feel better for a while, as does the heat from the hairdryer. I’m of the understanding that heat often makes headaches/migraines worse.

(4) The right eye feels like it’s twitching a lot; the left eye periodically keeps tearing up for hours on end. (Especially after I’ve been focusing on something for a while, including a computer monitor. Never used to happen, though.)

(5) “Motionlessness intolerance.” If I sit still long enough, that’ll get me feeling weird too. It can be almost as bad as when I’m moving. However, my worst activities are general walking around, housework/chores of any kind (even vacuuming), and if you want to REALLY throw me for loops, ask me to do something involving moving my body or head up and down, like loading the dishwasher. Or take me to the grocery store.

Anyway, those are basically the top 5 “oddities” for me. A lot of this doesn’t seem to make sense. (Who ever heard of a MAV’er who does well with visually complex scenarios like a car ride, or the simulated environment of a console game!)

Am I just an atypical case of MAV? Has anyone else had seemingly counterintuitive experiences with certain activities? Or should I (perhaps) be considering the possibility of being misdiagnosed AGAIN?

George the More Than Slightly Confused

P.S. Oh, by the way, here’s some comments from Dr. Hain’s letter following my first visit with him.

  • “Cranial nerve examination is mildly abnormal due to poor tracking to the right. There is also an exophoria, and I think this is likely related to a congenital strabismus and unrelated to your present dizziness symptomatology.”

  • “Strength was entirely intact as were reflexes.”

  • “Under video Frenzel’s goggles, there is no spontaneous, gaze-evoked, or vibration-induced nystagmus. On head right, there is a weak right-beating nystagmus. This is a test for cervical vertigo. On position testing, again on head right, there is a right weak-beating nystagmus. Nothing is seen on hyperventilation.”

… OK, now I’ll shut up!!

Hi George,
They don’t sound like oddities to me, mav is unpredictable and isn’t the same for experience for every one.
I feel good in a car, it stops the rocking sensation but I often felt as if the traffic was moving inwards towards me.
Large screen TV’s and computers always make me worse I’ve avoided video games for that reason.
Computers have a flicker in the screen, which aggravates my mav.
It is a little odd that video games don’t bother you.
I’d love to hear other mav’ers experience with that one.
I’ve had twitching of my eyes on and off with mav including pain in them.

Heat makes my mav worse including blow drying my hair. I always thought it was bending over more than the Heat.

jen

George - your sxs do not seem odd at all for MAV. No 2 individuals will have exactly the same sxs. I, too, feel awful in supermarkets, and my best in a moving car. IT seems like we all have some overlap in our sxs, but no 2 people will be exactly alike. Unfortunately, it is very odd illness with strange symtomatology. I don’t think we’ll ever figure it out.

Hi George,

I think weirdness is the norm with this disease!

I can watch TV without problems but movie screens spin me out, at least for the first 20 minutes.

I also get twitching eyes and sometimes the right eye hurts and tears up. A few years ago I had a massive episode which was diagnosed at the time as optic neuritis but could have been retinal migraine (nerve damage could indicate either).

Yours in weirdness,
Victoria

Thanks, Jenny, Lisa and Victoria.

I actually have some optimism that there will (eventually) be some groundbreaking new understandings of migrainous vertigo. Like I somewhat said in another thread, I suspect there’s some mechanism involved (in the vertigo component) that breaks the framework of “ordinary” (less-complex) migraine.

I won’t be surprised if there comes a discovery (in this area) that really puts together all the pieces of the puzzle. So far, it seems, the only thing “typical” of MAV is that each person’s experience with it is atypical in some ways.

One of the nice things about this forum is that I am constantly reminded of how much worse I could have it. For as ugly an experience as this is for me, I seem to have a decidedly less severe case compared to what others have.

George,

The answer to your tolerance to video games can be explained. From what you describe, most of your gaming is on a consule on a television. The old analog television were CRT’s and have a lower refresh rate than an old CRT computer monitor but you stand five feet back from a TV. You don’t stand 12 inches from your TV where as with a computer monitor you are. You don’t mention if you use a CRT or a LCD computer monitor. LCD’s don’t have a refresh, which is the problem with CRT’s. The only reason for a LCD monitor would cause problems would be strong contrasting colors such as a bright black font typed against a bright whit background. Then there is the gaming aspect, you don’t mention what type of games you play, but it is very possible that you have found a self-relaxation technique that will help with migraines in general. Something like a first person shooter would be good for anger/stress relief, a real time stratagy might be relaxing for you, like other people getting into a good book, and so on.

In short, the game counsels and computer monitor issues that you question may be something that you learned to use years ago for stress management. Oh, and this is just a theory for you to ponder on. :slight_smile:

Brian

Hmm. That makes a lot of sense, Brian. Appreciate your insight!

I’m one of those people who can’t stand all the unanswered questions about things. I always wants to “fill in the blanks” (even if the problem’s already been rectified! – though it hasn’t in this case).

Both the videogame console and the computer screens (the latter is a dual-screen setup) are LCD’s.

To some degree, perhaps the videogame is just “distracting” more than anything. As for computer screens, it probably helps that I’ve become used to extended periods of use with them (or maybe it’s HURT my migraine condition over time?).

I’m sure my head position relative to the screen factors in; the TV for the game console is at eye level, but the computer monitors are a little above it (or at least, the way I sit, they are).

George,

Re: #5, at first this one made very little sense to me because any kind of motion, be it mine or anything else, sets me off but the more I thought about it the more I understood it. Most of my hard vertigo spells had begun in my sleep so I don’t know what it was like in the minutes leading up to them but I did have one severe spell in my waking hours. In the few seconds/minutes leading up to it, as things were starting to move around and slant all over the place I found I HAD to move. It made me feel better, I don’t know why but it did. Then after a few seconds I could only move backwards. I guess moving forwards made too much of a contrast but moving backwards helped. It felt to me like I had to keep moving and if I stopped I would get worse. Eventually (it only took a couple of minutes) I wasn’t able to move as things just got too wild and rolly and I sat down on my bedroom floor and called 911. Another thought I had as I read what you wrote is the possibility of mad de debarque(have no idea how to spell that) syndrom. I know people with this often say they feel better with movement, especially car movement.

#1 My initial thought to this was same as what you alluded to in that it is distracting. Perhaps it helps to take your mind off the terrible sick feelings you have. Or perhaps because your head is still this helps you.

#2 Driving or riding in a car. That is one thing that has never helped me and also is something else that people with mal de d… experience. In fact I have read here of a lot of people who experience this and sometimes me makes me question if I do have MAV after all since so many others on this board claim to feel this same way and I never, ever do.

  1. I love my hot showers! I never heard hot ones make headaches/migraines worse. I have heard they help sinus headaches though.

I think you have posed some interesting questions here. There was another similar question posted also asking why some meds work for some people with MAV and don’t work for others. I think there are so many misdiagnosises with vertigo/dizzy disorders and that could be one reason why we have different symptoms any why things do/don’t work. All the dizzy disorders have almost the same symptoms and without looking inside the brain it is really hard to say what anyone has.

book

George,

(3) Hot shower – this often helps me feel better for a while, as does the heat from the hairdryer. I’m of the understanding that heat often makes headaches/migraines worse.

Showers whether they be hot or cold or body temperature give me migraines and head fog. The effect begins within 15 minutes and peaks at about 2 hours. The problem is most prevalent if the water hits my head (called “hairwash headache”).

ncbi.nlm.nih.gov/pubmed/17059440?

Apparently this is known as allodynia – the skin becomes hypersensitive and pain receptors are fired off. But not everyone has this as a symptoms just like not everyone gets light sensitivity (including myself).

Scott 8)

Hey Scott,

Re your allodynia - does this happen EVERY time you have a shower or just sometimes? And is it just showering or water in general (eg having a bath or a swim)?

You could shave your head… ? :mrgreen:

Hi Victoria,

— Begin quote from “Victoria”

Re your allodynia - does this happen EVERY time you have a shower or just sometimes? And is it just showering or water in general (eg having a bath or a swim)? You could shave your head… ? :mrgreen:

— End quote

Yup, every single time. If I swim in the sea, I will end up with head fog and feel really knackered afterwards too. A bath is ok as long as I don’t sink my head into the water. A shower first thing in the morning always creates the worst reaction. The resulting headache depends on how symptomatic I happen to be. It may just leave head fog or it could advance to a really bad migraine. This is the one really big problem … if I could remove this problem my quality of life would improve massively.

Yeah, maybe I should just shave my head and rub it down with a sponge in the morning! It’s gonna fall out anyway! :smiley:

S

Far out - that is too cruel for school, especially for a guy who not only lives in Sydney, but near the beach! There are not enough goats or kittens…