I have two types of rocking. One is more of a very slow side-to-side feeling, although that has kind of gone away more or less over the past month. That felt like I was on a boat.
I now have a more annoying problem of a quicker side-to-side shaking sensation, almost as if it’s related to my heart beat. It seems to subside some when I’ve been lying in bed for a while and my heart rate goes down.
I know that many people describe their rocking as if they are on a boat. So, is that more of a slow listing feeling or the short “earthquake-type” sensations I am experiencing?
Mine was quite violent indeed. I could fall out of bed with mine. It feel like it was in synch with my heartbeat but live I was being shoved by a sumo wrestler! Everyone now and then I have the side to side feeling, a bit like a pendulum swaying. But it’s subtle.
Mine was always worse and more noticable of a night when lying down to go to sleep. Because my body was still and my brain was able to then tune into the sensation, it ramped right up. That was my worse symptom of all (other than my electrical shocks)! :shock:
I’ve told people it’s like being in the belly of a boat, depending on the day is how rough the seas are, and therefore how bad I feel (lately it’s been really rough seas). When I’m talking with someone who starts telling me about the time they got the spins when they drank too much, I say ‘it’s like being seasick all the time.’
But here, I think people get the belly of the boat thing. Walking is hard because it’s almost like the ground is like shifting heights even though all visual cues indicate that it’s not…and feeling like, say when walking down a hallway, that you’re almost bumping into the sides because it feels like everything is kind of going side to side, again all visual cues indicate it’s not. That’s why I say bell of a boat. I would imagine if one would be in the belly of a boat (which I would NEVER do) all visual cues would say things are stable when indeed you’re moving.
Judy, I LOVE that analogy - it totally fits! (I’ve always tried to figure out how to describe the feeling, and you’ve hit it exactly - so, thanks for one more idea in my “how to help others understand what I’m going through” arsenal! )
KennedyLane your symptoms of rocking sound almost identical to mine. I also have a slow rocking that can either be side to side or back and forth. Over time it has lessened to the point that I now refer to it as background noise.
On top of that I have a sensation that I am moving or rocking to the rhythm of my heartbeat. This was the symptom that confounded doctors and still gives me the most grief. When I lay down it does sometimes calm, but it really depends on what kind of a day I’ve had. There will be days where I’m pretty good and suddenly I’ll get a really quick feeling of rocking and I grab on to something. I don’t feel like I’m going to fall, it’s just surprising. At times the rhythmic rocking is so strong that I actually do physically rock (teeny movements that others can’t see unless they are really looking) and feel like I am being pulled or pushed sideways. My doctor says that is just my body doing what the brain is signaling.
Top that off on my worst days when I also have a floaty, disconnected head feeling too.
I don’t understand it, but then again, even doctocs admit that they understand little about the brain and all it can do.
Yes, it is hard to describe my rockiness as i feel like it’s the same 24/7 but i have to say i notice worst times than other times, but is it because i’m busy? is my mind off of it? i’m like muppo- my rockiness it WORSE when laying down. i like to describe it as i’m in bad plane turbulence. that is exactly how i feel everynight in bed until i fall asleep
for my daily rockies, i’ve used the boat analogy, the drinking analogy as well as most recently you know how in movies like when someone for example gets knocked out and they are coming back to consciousness or something and they make the movie look kind of ripply and jumpy? i wish i could give a better example but when that happens, i tell my husband,“look! that is practically what my world looks like!”
Glad it helped and I really liked the other analogies too…especially the canoe and the movie reference. Oh, and yes, the floaty, disconnected head feeling…ugh.
It’s nice to be on here and have people get it. It’s such a lengthy conversation trying to explain it to people. At this point if I don’t know someone very well I tell them I have a neurological disorder. Never get any comments on that. If I tell someone its MAV and don’t want to go into it that much, I tell them “Migraine Associated Vertigo. Migraine because it’s the same part of the brain as migraines. Vertigo because you feel seasick 24/7.” Again, not many (well meaning) comments about how how they get headaches and once had vertigo for 3 days.
Don’t know why I’m so hypersensitive about peoples reaction, but I just don’t want to hear it :?
Mine started back in March 2011 with the swaying rocking. I would be sitting at the computer at work and every afternoon I would feel like I was moving back and forth even though I wasnt! It wasnt violent though. Around the same time I started getting brain jolts too, which were a more uneasy symptom for me. It gradullay turned into anxiety along with this and balance issues. I have had what I call brain fog for most of the days since then also. Not sure if thats migraine or being overstressed or what!
I do also get the sudden quick fierce pulsing dizzy. Last only a split second, feels like a g-force or something. I dont know.
The ground also shifts for me which makes no sense when you are standing or walking on a hard surface.
This has been awful!
For me, the canoe analogy is a really good one although I rarely overbalance/fall except in very specific circumstances - pitch dark, uneven ground , electronic doors. The rocking (more up and down) is there all the time. nausea happens in due course…The rocking etc was never there ever at all until june 2011. Sitting/lying still it feels worse BUT doing some stuff can make it worse
The other “evolution” for the last 6 months or so has been a constant little “falling” sensation located on the right hand side where migraines are too (sinus area etc) . That doesnt really change unless i get overtired or do something physical to upset it. Then it gets much more but still hardly ever to the cannot walk at all. God that sounds bad and I feel so sorry for board members who experience this. Genuinely for me there doesnt seem to be any link with feeling anxious, cross, sad etc around MAV or anything else from time to time. If I am any of these things there is no effect on the “rocking” or “falling” at all…
Something a bit interesting - Neurologist put me on Tegretol (an anti epileptic med) a month ago. that was because all this had morphed into constant dull face pain on right hand side on top of other problems and he wondered about atypical trigeminal neuralgia. Dont google - it sounds foul.
Almost straight away the falling sensation is kind of “smoother” so easier to put up with/get sleep etc. (except for yoga adventures - see sep post). Life has improved a lot and hope I can stay on it.
The other thing that I found has helped was physical “standing on one leg” exercises that the physio gave me during an otherwise unsuccessful venture into VRT. good luck
Hi Kathleen. Yes I wondered too. Really I’m getting just as much rocking/vertigo with my current Tegretol/verapamil combo, it just feels a bit different…and is happily better to live with. Think a lot of the anti-epilepsy meds work a bit differently. Tegretol is quite good for constant background pain in the right hand side of my face. That has completely disappeared The migraines come and go as before.
I did do Topamax for about three months in 2011 and before that 6 month trial with Epilim. Both helped a little with migraines but not really at all with the vertigo. they 'felt" quite different and have different clashes with other meds etc. With a good Dr (and the great info on this board) I think if they can, everyone should give everything a good go without worrying too much. thanks again wendy
My rocking is very similar to the descriptions above, and it is so comforting to read others who understand. Thank you all for sharing. My disclaimer is that I do not have an official dx yet (but MRI, MRA, audiology, neuro-otology exam, etc all normal).
The side to side swaying has lessened in the 5 weeks since it started. I have times of the day, often early morning for the first few minutes to hour, where it is a subtle side to side sway and imbalance. It is noticeable an obvious to others, too. It get’s worse when my head fills/fogs up…which happens if I sit up for any length of time, walk for more than a few minutes, and especially if I talk at the same time ( I get very slow and stuttered speech that comes and goes with the head fog and worsening imbalance).
It varies in intensity from just a feeling of being on a boat at best times, to trying to walk across a canoe in rough seas.
The past 3 days I have had intermittent new sensation…strong pull to the right. The first time it hit it pulled me to the ground. Now I can usually catch myself.
My symptoms of rocking have been helped by lying down previously, but this new “pull” is very strong and doesn’t go away when I lie down. I feel like it could almost pull me off the bed.
Today I also started “tingling” feelings along the lateral side of my right leg, and then my right arm, too.
Very weird stuff. I am not on any meds yet…just the elimination diet. My new neurologist specializes in epilepsy and migraines, so hopefully she will be able to get me on something effective for it, too:)
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K