MAV or not? No spinning vertigo, constant "dizziness"

Specific Illnesses & Conditions VM/MAV
1

Hey everybody :slight_smile:
Extremely long story cut down: “Dizziness” is only one of MANY symptoms, but no doubt the worst of them. Quick facts:

  • Extreme motion intolerance, or whatever you’d call it… Like motion sickness, only I get it from anything (TV for more than a split second; walking, scrolling on the computer, brushing my teeth)… I can’t even begin to list the things I can’t do without feeling nausea. Even when laying in bed, breathing in and out moves my chest enough for it to be annoying if my eyes aren’t closed. :oops: I don’t get outside whatsoever because of this, but by no means can I actually avoid it and feel good, even laying on the bed isn’t perfectly still.
    I realize that it sounds ridiculous to those of you who haven’t had something similar, but I’m literally down to not doing anything besides laying on my bed a few hours a day, and browse the web the rest of the time (although I can’t scroll with my eyes open, etc…).
    OK, I said quick facts. Here are a few:
  • No vertigo (spinning)
  • Some “false motion” at times
  • No balance problems, at least not in “daily life”, walking at home is never a problem (except for the nausea bit)
  • Migraines… Well, I don’t know if I qualify to be honest. I do have a hell of a headache perhaps once a month(?), where I go to bed early. I don’t have the extreme light/sound sensitivity though, but I do keep the volume down on the music and avoid some lights, but I’m not laying in darkness or anything. I have a slight headache-y feeling most days, but it’s not really pain, rather some odd feeling that isn’t very pleasurable, accompanied by nausea. Hard to explain.
  • It’s constant. Every second of every day. It does get worse at times, especially when I have one of those headaches, but I never feel “better”. No dizzy spells or anything.

I’ve been suspectible to motion sickness for ages, but that was “regular” motion sickness - roller coaster rides, cars on small roads… It grew into this extreme about half a year ago, when I was out on a walk, and suddenly felt very dizzy and lost my balance. I felt motion sick the rest of that evening, but the “vertigo” was only for seconds. Well, that’s what I remember anyway, it’s been growing slowly in the background for a long time (years). Last christmas I couldn’t play certain computer games, this summer I couldn’t play any or watch TV, and these days even writing text on the computer feels like a task. It seems to get harder every day.

Any answers are appreciated. Besides feeling crappy, I feel like a huge oddball (I wonder why ;)).

BTW, I have an appointment with my GP this tuesday (feels like forever). It might be his job to diagnose me, but I’d rather “waste” my time on thinking what might be wrong, than to simply “wait and see”. That way, I’ll know what to say, more than giving him a description of how I feel.

2

Hi Tranquility

Sounds like par for the course for MAV.

Spinning vertigo is probably the most common symptom (up to 2% of the population experiences rotational vertigo due to migraine according to some studies), but the chronic dizziness sensations are very common amongst those that seek treatment and forums like this. Spinning vertigo is difficult to tolerate while it is occurring, but chronic dizziness often becomes much more disabling.

Your headaches sound a lot like mine. Is it a tension headache type feeling (like a squeezing feeling, perhaps around your temples?) Certainly you don’t require light sensitivity and sound sensitivity to be suffering from migraine.

In my opinion, there is nothing else that would cause similar symptoms.

Might be worthing trying a migraine diet to start with, see how you go, some like to leave trialling medication until after they’ve tried the diet as some can eliminate symptoms completely this way.

The good news is that both of the above are often very successful.

Adam

3

— Begin quote from “adam”

Hi Tranquility

Sounds like par for the course for MAV.

Spinning vertigo is probably the most common symptom (up to 2% of the population experiences rotational vertigo due to migraine according to some studies), but the chronic dizziness sensations are very common amongst those that seek treatment and forums like this. Spinning vertigo is difficult to tolerate while it is occurring, but chronic dizziness often becomes much more disabling.

Your headaches sound a lot like mine. Is it a tension headache type feeling (like a squeezing feeling, perhaps around your temples?) Certainly you don’t require light sensitivity and sound sensitivity to be suffering from migraine.

In my opinion, there is nothing else that would cause similar symptoms.

Might be worthing trying a migraine diet to start with, see how you go, some like to leave trialling medication until after they’ve tried the diet as some can eliminate symptoms completely this way.

The good news is that both of the above are often very successful.

Adam

— End quote

Huh… Yes, the headaches does seem that way, at least kind of. The kind that I have often (the slight one) is usually felt in the temples, and “in” (umm) my eyes. The severe ones is more like the throbbing, one-sided kind migraines seem to be, but even when I have those, I still stay up from bed almost as much as usual, even though I obviously hate them. I do (as I said, heh) get some sound sensitivity, but it’s nowhere near other stories that I’ve read. I play music at a lower volume (although I never ever have it “loud”) and dislike the sound of forks hitting plates etc; but that’s about it, talking and such works well enough.

I have plenty of other symptoms (and problems), that are likely not migraine related at all, but still. I seem to developing hypothyroidism, which fits me great in terms of symptoms, at least lately. I’ve heard a few stories about people with subclinical/borderline hypothyroidism who got great relief from migraines after treatment, I’m hoping to become one of them.
I’ll certainly have a look at the diet :slight_smile:

Edit: I read through the “tell your story” thread, can’t say I relate to much of anything there, really. Motion intolerance seems to be the wrong words to use around here; I do NOT feel ultra-dizzy for tiny movements. I feel quite dizzy/dizzy nauseous with any movement, but no vertigo, ever. Motion sickness describes it quite well to be honest.

4

Hi Tranquillity,

You don’t have to tell me about motion sensitivity. You have a fellow sufferer here. I can relate to everything, and I mean everything you have said. I have the motion sensitivity related to Tv, walking, scrolling, even having eye to eye contact during conversation. And the headaches I have are like yours, usually throbbing in one eye or one side of the neck, but no typical migraine symptoms. I have the same thing too with finding the clanging of forks on plates unpleasant. I haven’t heard anyone else describe that before! Imbalance was part of my problem too, mainly whilst walking in busy places like shopping centres etc. I am OK as far as that goes at home too. I have other problems like brain fog, which others on this site also have.

I agree with Adam. But I would add that I think you should start doing something about this straight away. It sounds like you are pretty incapacitated. Don’t leave it for too long because this stuff really messes up your life, as I am sure you know. Whether its diet or drugs, do it! If it were me, I would do both - a “two-pronged” approach. That way, if one of them doesn’t work, you haven’t lost any time. Most treatments usually take weeks to work. Make sure you update us on how you go!

5

— Begin quote from “robsydney”

Hi Tranquillity,

You don’t have to tell me about motion sensitivity. You have a fellow sufferer here. I can relate to everything, and I mean everything you have said. I have the motion sensitivity related to Tv, walking, scrolling, even having eye to eye contact during conversation. And the headaches I have are like yours, usually throbbing in one eye or one side of the neck, but no typical migraine symptoms. I have the same thing too with finding the clanging of forks on plates unpleasant. I haven’t heard anyone else describe that before! Imbalance was part of my problem too, mainly whilst walking in busy places like shopping centres etc. I am OK as far as that goes at home too. I have other problems like brain fog, which others on this site also have.

I agree with Adam. But I would add that I think you should start doing something about this straight away. It sounds like you are pretty incapacitated. Don’t leave it for too long because this stuff really messes up your life, as I am sure you know. Whether its diet or drugs, do it! If it were me, I would do both - a “two-pronged” approach. That way, if one of them doesn’t work, you haven’t lost any time. Most treatments usually take weeks to work. Make sure you update us on how you go!

— End quote

Wow! I noticed that you got here long ago, how are you doing these days? Better than before, I hope. If so, what did you find helped most? :slight_smile:
How did your condition start out? Also, have you have any (or much) vertigo?

Thanks in advance :slight_smile:

6

Good post Rob

Tranquility:

I would say motion intolerance is almost universal to people here…

I also had a particularly bad period where I was unable to function well (couldn’t work etc.) and couldn’t stand the noise of even people talking near me.

Adam

7

Thanks for your replies, I appreciate the help :slight_smile:

I’m looking a bit at the diet and such. Pretty much every single page says that it mostly reduces the frequency of the headache attacks, which I don’t have many. At the moment, the motion sensitivity is all that matters. The really bad headaches don’t appear often enough to matter right now, when I’m completely disabled by the dizzies.
Should I still try the diet?
I realize that it can’t hurt, but I’m currently on a gluten-free trial diet so I do know that it can be a major PITA to change your diet! I’d rather not if it’s not very likely to help. :slight_smile: