2 months of this now

2 months of constant disequilbirium.

I have to continued to work, exercise and be as active as possible but it’s always there no matter how positive I am.

My kong relief continues to be when I lie down or am moving in a car/ bus / train etc…

Symptoms persist as the feeling the floor is moving / objects I am close to seem to sway / feel like walking on a trampoline etc…

I haven’t taken any meds up to this point but doctors want me to start on cinnarizine.

I just want this crap to stop… I want my normal life back :frowning:

Hmmm, that is interesting that you get relief when you lie down. My MAV symptoms are actually the MOST noticable when I lie down. At my sickest it felt like I was lying on the deck of a ship out at sea in a huge storm.

I’m not sure if I’ve heard of a case of MAV that gets better when you lie down. That sounds like it might be a different vestibular issue. Maybe someone else knows differently.

Oh, I also wanted to add, if your doctor thinks this is MAV, I’m surprised that is the medication he/she want to start you with. The general MAV playbook starts you off with either a beta-blocker like Verapamil, an anti-depressant like Nortriptyline/Amtriptyline, or an anti-convulsant likeTopamax. While there have been some studies done around cinnarizine and migraine, I’m very VERY surprised anyone would choose that as their 1st choice as a migraine supressant. It has been banned from use in the US and Canada because it has some horrible side effects.

Has your doctor diagnosed you with migraine?

[edit–reading more about cinnarizine it seems more likely that it is just “not approved” for US/Canada use than “banned”, which may be more of an economic reason than a medical one (i.e. no one wants to pay for the studies necessary to get it approved). So I don’t want you to scare you away from using it. That being said, if your doctor actually thinks you have migraine then IMO there are far more proven plans of attack.]

I too have great relief from lying down. I was pretty much bedridden for six months and lying down was pretty much all I can do.

Unlike you, I feel worst when I’m moving, especially driving. I can barely drive. Only a couple miles or so. Meds have helped but not as much as I’d like.

I would advise you to just try drugs because most side effects are much better than living with this horrible illness. Ive had to change my whole thought process about meds and now I’ll take just about anything to have my life back. I have had great success with Effexor but just recently increased so I’m feeling bad again but I’m sure it’s just my brain and body adjusting.

Good luck and keep us updated. Hang in there.

Actually it is not uncommon to get relief from MAV symtoms from laying down. I am someone who gets great relief from laying down. It doesn’t always work but most of the time it does the trick. Not everyone with MAV has worsening of symptoms upon laying down.

So Rich, what is your next step? Have you tried other methods to control symtoms, i.e., the migraine diet? Are you opposed to meds?

Interesting. Well as has been pointed out several times in this forum, everyone seems to respond to migraine and migraine treatment differently. I apologize for not knowing this.

I should be clear–my MAV does not get “worse” when I lie down per se, it is just when I notice the dizziness the most because it’s when my body is the most still. I didn’t realize that some people got relief just from the act of lying down. Once I’m dizzy, the only thing that really helps me is sleep, though putting on dark sunglasses is a close second. I guess if I combined the lying down with closing my eyes it would probably help. :slight_smile:

I’m another one who feels better lying down (the exception being rotational or ‘true’ vertigo where no position provides any relief) and at my worst have spent most of the day in bed for this very reason.

Richy - hit the meds. Now. Seriously, you are extremely unlikely to feel any worse than you do now and every probability you’ll feel better. Get stuck into them!

It seems that many of you have one or the other when it comes to relief from either laying down or moving… for me i get relief always when i lay down… sometimes it takes a few minutes longer than others to settle down but generally its always a relief for me.

I always have relief when moving… whether cycling, riding a train, or in a car (as passenger or driver). My only movement where I feel not so goood is walking.

funnily enough… when I am running i feel fine, but when i stop it seems my symptoms are worse and take a while to settle down, however, when i do an intense cycling session my symptoms dissapear for hours afterwards…

my symptoms are most certainly at their worst when i am waiting on a train platform, bus station, and the platform feels like its moving.

One other thing that seems to have been strange since I have had this bout of MAV… rather disgusting so sorry in advance… but my bowel movements have been changing quite a bit… sometimes I cannot go at all even when I feel like i really want to… also the consistency of the stools is rather disgusting (wont go into detail)…

I have read that change in bowel movements can be very much related to stress… so I think stress is the key for me… but i have no idea how to control it because i do not feel stressed. If anything its the bloody dizziness that makes me stressed… oh joy

Richy, I get relief from my symptoms when in a car as well. My theory is that when I’m not in motion, the massive disconnect between what my eyes and inner-ear are seeing and sensing (I am NOT moving) and what my MAV brain is sensing (the whole world is pitching to and fro) generates crap-tons of anxiety for my whole system. However, when I’m in a car, since I AM in motion, even though I may not be in the exact motion that my MAV brain is telling me I’m in, it’s close enough for my system to accept that things are ok and and not be freaked out about. The eyes, inner-ear says I’m moving, and my brain says I’m moving, so things are ok.

So I think the MAV is still there at full power when we are moving, but we are able to ignore it. It’s similar to the way someone with tinnitus is able to get relief in a shower. The noise in their ear is still there, but the shower drowns the noise out to the point that they can’t notice it and therefore is appears to be gone.

At times when I’ve been dizzy i’ve actually found myself swaying my head back and forth subconsciously. I think i was doing this because if my head was in motion, I was less likely to be bothered by feeling motion that wasn’t actually there!

BTW I agree with Victoria on the medication thing. Finding the right medication for migraine can be a slow and frustrating process (my doc said he had something like fifteen or sixteen different ones to try!!!) but if it is negatively affecting the quality of your life, then it is well worth the effort.