The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

The Magneto Head

Anyone had a vertigo ‘attack’ that’s left you feeling like something is pulling you down?

It came on fairly quickly when I was working at my desk.

I became very motion intolerant and just wanted to sit in bed. If I had to move I didn’t like turning my head.

Days after I’m still feeling imbalances.

On the plus side I did not have a migraine (thank you Amitriptyline!) nor any auditory symptoms.

Is this BPPV?

How long did it take you to get back to baseline?

Cheers

James

1 Like

It really sounds like bppv. I’m sorry I can’t be more help but it will pass. Once those rocks get back into place it can take a bit for things to settle.

@turnitaround - So sorry to hear you’re going through a rough patch. Yes, I have had this happen to me many times, at least a few days a week if not every day. I think I’ve described it as having an anvil on the top of my head. Like I’m being pressed down. It seems to be worse for me when I stand up and walk around. It can happen shortly after I stand or after I’ve been up for a little while. None of my doctor think I have BPPV, and I’ve been tested many times. I don’t feel actual “vertigo” with my “anvil” feelings though. I hope it goes away soon. Sorry to hear the Amitriptyline doesn’t prevent that. That’s a bit discouraging to hear, since it’s one of my least favorite sensations to feel.

Tell me about it. I haven’t had an attack like that in 6 months. Scary intensity and can only imagine how bad it would have been without meds: definitely would have had a migraine and be stuck in bed motionless staring at the wall hour after hour. Anvil feeling and discomfort turning head went in two days. 5 days later and I’m significantly better though not back to trend line. I’ve gone for two 5km runs since now and did plenty of walking yesterday. No attacks since if very minor spins in bed. Might be fit enough to do an afternoon of work …

Btw I feel this may fit my theory of air in the labyrinth. Im wondering if an attack like this is brought on by many of the bubbles collecting together in one of the chambers. This might explain the strong pulling sensation in one axis as otolith momentum dramatically changes because of the difference in viscosity in air versus fluid. Any movement would cause a much more intense response. And it does.

My air theory also explains the little ‘tickling spins’ you get, perhaps when a smaller bubble gets into an otolith chamber. And it explains positional vertigo as bubbles shift within a chamber as you turn.

Periods of remission might be the bubbles are sat harmlessly in the canals loops away from the senses.

And ultimate remission might take place because:

  • air leak letting air into labyrinth heals
  • air all finally dissolves, passes through one or other membrane or travels out via plumbing

You could imagine that a fluid container would also be a good air container so it might be that air can last for a long time in the labyrinth, maybe years?

@turnitaround I’m sorry to hear you had an intense relapse, that sounds like quite an attack. But the fact that you’re back to running sounds like a really good sign.

Your air in the labyrinth theory makes sense. I know a lot of my head/neck positional dizziness and spins issues are related to how tight my neck muscles are, especially with how sensitive I’ve been to physical therapy on my neck muscles. Usually the PT can do almost nothing to my neck and the slightest treatment can trigger dizziness.

Thanks. Glad to report relapse almost over. I feel so much better. Nearly back to ‘normal’

@turnitaround that’s great to hear. It’ll be even better when we don’t have to put normal in quotes!! I’ve been having my worst yet eye pain yesterday and today. Last night it got to its worst point, I got great sleep, but as soon as I woke up the pain came right back. Usually I have to at least use my eyes a little first. It hurts to move them and basically just to exist. Yesterday my vision was super blurry too. There’s nothing much that helps this symptom either, at least that I’ve discovered. Sleep is the best but I just got great sleep & can’t sleep anymore. Hopefully it won’t get as bad as yesterday. I hate it when the symptoms get way worse than normal for no apparent reason. Just when we think we’re used to what “normally” happens…

Yeah I hear you … just when you know the ‘usual’ symptoms and chill, then something new comes along … ugh

@turnitaround thanks! glad I’m not the only one.

OK this is a pleasant change. Went for a run and a walk today and by afternoon I only felt very slightly ‘off’, almost not dizzy at all. Pretty surprising given the severity of my attack last week from which I almost thought I’d not recover from. Tinnitus today is only a very slight high buzz, so not too bad either.

So worth noting peeps, even if you have a REALLY bad one, you can seem to make it back to baseline!

1 Like

@turnitaround Glad to hear you got back to “baseline” so fast after last week! For me it’s been almost a year since I’ve been at “baseline.” I think I have something more complicated than just MAV though. A lot of neck issues making it worse. Plus, I never get an actual “episode” of a migraine. All the symptoms just get really bad then a little better but never gone. Also, different every time.

That could be BPPV. I get exactly the same variety of always changing symptoms. That’s why I think it’s really hard for the brain to compensate. (And why VRT is pointless for the time being)

The day it settles down is the day your brain catches up and you stop feeling dizzy. I saw a documentary where they switched the eyes of test subjects using a headset with prisms. Turning left made the people see turning right and vice versa. The subjects were able to compensate by retraining within 3 weeks!! That proves to me the brain can relearn if given a stable change.

Do you have any theory as to what started it all for you?

@turnitaround I’ve had such an awful month, sorry this response is so late. I know mine isn’t BPPV, I’ve been tested so frequently for it and the symptoms don’t really match up all that well. I just went to my new-ish neurologist yesterday (I think it was my 4th visit with her) and she’s changed her initial diagnosis for me. She doesn’t think it’s MAV anymore, but rather Persistent Postural-Perceptual Dizziness (PPPD), formerly called Chronic Subjective Dizziness (CSD). It makes sense since mine is every day and nothing ever points to “episodes.” But, it doesn’t explain all my vision problems and eye pain. And, PPPD symptoms supposedly get better when lying down, and mine get worse. I was on the Vestibular Disorders Association’s website last night and found an interesting article on something called Binocular Vision Dysfunction (BVD) which REALLY matches my symptoms. I have an ophthalmology appt on Monday anyway so I am excited to see what he thinks about it. If that is it it could be a MUCH easier fix than anticipated. If not, my neurologist wants me to go back on the hunt to find an SSRI/SNRI that I can tolerate. Great.

It all started on a day after I worked 8 hours at a computer and got severe back pain. The back pain was crazy bad, came out of no where, made me double over in pain, difficult to sit in the car on the drive home. The next day the pain was still bad, everyone I knew told me ti sounded like I had a kidney stone. That day after another 8 hrs on the computer for work I went to dinner with a friend and had my first dizziness/vertigo like sensation in the restaurant. I was hypersensitive to my back pain as it was, then somehow the visual stimulation of the busy restaurant, lighting, noises, etc got me feeling dizzy and nauseated. After that the dizziness mainly came on at work in front of the computer but would get better when I left work. Eventually it also happened after work, then on weekends, then off and on whenever. There was a time I could go on a vacation and not feel it at all. But then it evolved into an every day nightmare. In the past year it evolved further into not being able to drive, work, walk without assistance, or basically function.

Jess hang in there, you will find a way to deal with your symptoms. I feel for you, I really do, that sounds really tough.

Remember eyes are closely connected to inner ear function, don’t rule out an inner ear issue too quickly. Without Amitriptyline I have ALL sorts of visual problems including visual hallucination where the floor can shift or rock and I know this is all from my inner ear problem.

By way of an update to this thread, I am delighted to say that all my heavy head symptoms have gone, in fact, approx. just over a month later my dizziness is better than ever, its as if the attack never happened. Not only did I recover from it I’m doing better than before the attack.

So glad to hear you were doing better mid-December (sorry I just saw these posts) I hope that is still the same. My heavy head feeling I had around mid-December as well got better for awhile. Seemed a little worse the past few days, I hope it doesn’t continue or get as bad as it did in December.

@turnitaround Sorry to bump this thread back up, but when you had those “magneto head” feelings, do your recall ever having back pain or leg pain/weakness with it? Every time I have the feeling now I have lower back pain, and once I’ve had the sensation more than 1 day my legs ache, get super weak, and shake if I stand up too long. My legs are fine when the dizziness is less and even just when I don’t have this specific sensation. A few months ago this sensation lasted 2 weeks, and I really am hoping I’m not going to experience that length again, but right now I’m on day 6. It makes it hard to stand and walk around to do anything.

Jess, no need to apologise - this ranks as one of my worst experiences during worst of the condition - if you get this more than once I only have very sincere sympathy for you and get this when not on meds?!: wow. I believe that did happen to me in the very early days when I couldn’t move my head or eyes at all and had to stare at the wall for up to 14 hours without moving or face extreme discomfort.

The answer to your question is I can’t remember exactly, but don’t think so. HOWEVER, remember I was on Amitriptyline at the time of THIS incident. I can only imagine the additional weird feelings I would have got had I not been taking that vestibular suppressant at the time.

Outside of this experience, I remember many times walking through my local tesco’s getting very weird sensations from my legs - one felt heavier and longer than the other - but nothing was physically wrong with them. This is your brain mixing up information it learnt when everything was well.

So in conclusion, Jess, I would not be surprised if you get strange feelings from back or legs during a vestibular attack. This is probably some kind of hallucination (like you sometimes get when the world visually seems to rock back and forth) as the body tries to work out why you are having these strange feelings and correlates it to the wrong thing: oh I’m experiencing this so it must be because this is happening (in my case several time one leg had got much heavier!)

Looking back on this event now I can’t believe how much better my balance is these days (balance is almost permanently back to normal now) which I hope gives hope to anyone reading of this experience that you can get completely over an attack like this … but yeah, this was over 6 months ago.

I remember being very disappointed that I’d had such a violent attack whilst still on Ami and this started to make me very suspicious of the diagnosis as I wasn’t comfortable with having been on a migraine preventative successfully for so long yet it didn’t seem to prevent what was a very violent attack.

I’d better point out, as you know in my case, something was wrong with my ear (I have a diagnosis of fistula and secondary hydrops) - it was leaking periodically and looking back I now believe this must have been caused by a large acute leak which left the ear without sufficient fluid temporarily - I suspect the magneto head is the result of crystals ‘dangling’ without sufficient fluid in your ear, pulling on the movement sense hairs. Once the wound heals again, fluid builds back up and the neurons recover from the trauma (which apparently takes a few days to two weeks), you are back to ‘normal’ again - for the time being. Unfortunately there is a risk the higher pressure in the ear (the hydrops) will force open the wound again and repeat the cycle. It’s my view however that this vicious cycle eventually calms down for most as the wound scars over and the maximum pressure lowers in response to less leakage.

Jess I hope you don’t mind me coming in on this but I have exactly the same problem, much less so now I am on meds but it still happens. Prior to meds I thought I would be unable to take another step but rested for a second or two and carried on with my legs feeling like they weighed a ton each. They were really wobbly and weak as you describe too. I had to keep going because of my dog but some days were a real struggle. With meds it is easier but still happens although the back pain can be very limiting and can actually make me faint it is so bad. I try to ignore it but it is not at all easy.