Dizzy lying down?

[penguin25]

I had my first vertigo attack about five years ago now and have been to every specialist you can imagine, ENT, nuero, opthalmology, gynae. At first I was diagnosed as having BPV, but no treatment seemed to help. I was put on Serc and given exercises to do. The Serc actually made me worse, I was on it for a year and it made me anxious and depressed. I was crying every day and feeling as if I was in a deep, dark pit and the doctors were no help. My husband had to go away for work and didn’t want to leave me on my own, so my parents came to stay while he was away. I had a terrible panic attack the whole night along with the vertigo that just wasn’t easing and in the morning when my Mum asked how I was feeling, I just burst into tears and couldn’t stop. I was crying so much I could hardly breathe. My Mum rang up NHS Direct, who of course wanted to speak to me, but I couldn’t stop crying enough to answer the nurse.

My Mum managed to fill her in on the dizziness I’d be suffering for the past few years, with no end in sight and suggested I try and see the GP that day if I could. So we went to the GP, my Mum went with me and I was glad she was there as yet again, I just couldn’t stop crying once we’d gone into the office. The GP put me on prochlorperazine three times a day and upped the Serc to 3 times a day as well. Big mistake, my symptoms got a lot worse, I could hardly walk I was so unbalanced and nauseated with side-effects. She’d also prescribed antidepressants, which I didn’t take and was glad I didn’t.

My husband read about Dr. Surenthiran on the web, who was a nuero-otologist. We’d already asked to see a neuro-otologist, but the GP said there was no such thing and we were confused with neurologist. I printed off the bit on the NHS Choices website and took it to the new GP. When he asked how I was I told him. “Like every day for the past 4 years. Dizzy.”

“Oh, and what can we do for you?”

I showed him the printout and said I wanted to be referred.

I was diagnosed with MAV last year by Dr. Surenthiran and put on 10mg of nortryptyline a day as well as an elimination diet of anything that migh trigger migraines. Dairy seems to be the main one for me. At my last appointment he wanted to up the dosage to 20mg, but I’m very wary of tablets after the debacle with Serc and prochlorperazine. He told me not to take the Serc at my first visit last year as there was nothing wrong with my inner ear at all. As soon as I stopped taking them it was like a cloud had been lifted from me. It had never occurred to any doctor that my depression and anxiety had been caused by my medication, which it had.

Which brings me back to today. I’ve been taking the nortrip. tablets, avoiding the foods that might trigger me but I am still very dizzy when I lie down and it’s very difficult getting to sleep. I have an adjustable bed and four pillows, but no matter what angle my head is at, I am still dizzy. I’m not dizzy if I sit completely upright.

Would increasing the dose of nor. help? I’m very wary of side-effects, I can’t even have ibuprofen and I had trouble with propanalol as well.

[JamieH]

So you are only dizzy if you lie down? Standing, walking, running, sitting, no dizziness in any part of your life except for when you are lying down?

[penguin25]

— Begin quote from “JamieH”

So you are only dizzy if you lie down? Standing, walking, running, sitting, no dizziness in any part of your life except for when you are lying down?

— End quote

No, I have a sort of lightheadedness all the time, with occasional bouts of vertigo, about twice a monthI also get very dizzy with flashing lights, loud noises, weird camera angles on tv or the cinema. The vertigo attacks have decreased since I’ve seen the specialist and stuck to the diet, but the increased dizziness when lying down has not eased at all. I get drop attacks, usually when I’m tired. I’d be sitting on the sofa watching television or reading and suddenly feel as if I’m falling and jump.

When I’m lying down it feels as if I am on a boat and that I am hanging upside down with my head under the bed. The room doesn’t spin, so it doesn’t feel like my vertigo attacks, but the physio last time moved me about a bit and dropped me from the bed to check if I had BPV as well, but my eyes didn’t do that funny move if it was BPV. She said it still is the MAV, but neither she nor Dr. Surenthriran said what I could do to combat it. I’m seeing them again in December but I don’t hold out much hope for our local surgery, as every time I’ve seen them I’ve ended up worse rather than better.

[RichyF]

I only feel dizzy when I lay down and somehow move my body… e.g. if i move my hands against my chest, stomach etc… then my body feels like its really moving (weird i know)

but if i lay still i have no symptoms

[JamieH]

Penguin, so your dizziness is more of a rocking feeling, as if you were on a boat that in big swells on the ocean? Apologies for the questions, just trying to get a sense of what you are feeling.

My primary MAV symptom was the “boat rocking” feeling. It pretty much permeated everything and I felt it all the time, but it was the worst when I was lying down as well. I wasn’t able to get it to go away until my doctor got me onto topamax about 2 months ago. Several people on this board who have suffered with the boat rocking symptom have had a simlar experience. For whatever reason, the anti-convulsant drugs like topamax seem to be more effective in people with the boat-rocking symptom, though this is admittedly in a very small sample size.

I tried Nortriptyline up to 150mg and go no relief from it. It brings great help to some people but it did not help me.

[penguin25]

Thanks, Jamie. I’ll discuss it with the specialist next time I see him. I don’t think I’d mentioned the boat rocking feeling to him that time. I’ll write it down. I forget sometimes what I need to say

Take care,
Annette

[JamieH]

By all means do, but just FYI I don’t think there is a medical connection between the rocking sensation and a specific form of treatment. I’ve just found anecdotally on this forum that about 5 or 6 people that had that symptom (including me) have been helped out (sometimes significantly) by anti-convulsants like Topamax. In some cases it seems that ONLY the anti-convulsants helps us out for some reason.

My non-doctor opinion is that someday they may make a connection with the rocking sensation and something specific that the anticonvulsants do that make them the right choice for treatment. For now it is just a small-sample-size conicidence on an internet message board.

Since you already have a MAV diagnosis I think the symptoms you bring to your docs are less important. Otherwise I’d say emphasizing the stuff like light sensitivity would be key. But they already are on-board to treat your MAV right? I don’t know of any specific MAV treatments that are based on symptoms–everything I’ve read is that you just get the MAV diagnosis and then it’s more or less trial and error.

BTW it can be so hard to remember everything you want to tell the docs in these appointments–I always had a huge list that I had to write down to remember everything.

[penguin25]

Well, it was the internet helped us get the referral and from that the right diagnosis, eventually I was very surprised out GP at the name had never heard of neuro-otology, we’d wanted to see them for over 2 years before we finally got the referral, the GP just kept sending me to ENT.

[JamieH]

Yeah, ENT’s get really confused by this stuff. They keep looking for balance problems with our ears and the problem is in our brain.

[erika]

I was actually first diagnosed with “probably” MAV by an ENT. (I had one who didn’t too… The guy who did, though has stellar credentials. On my first visit, I told him all my weird un-related, non-headachey symptoms. He immediately said it was either classic MAV or Meniere’s and that vestibular testing (and an MRI just to be sure) would be the deciding factor. (Couldn’t believe he works in my area, though - bit of a redneck town in GA, outside Atlanta.) Thrilled, though, that he knew his stuff!

Oh, and as for the rocking/anticonvulsant connection - none for me (yet). I’m a rocker - or maybe more of a floater - constantly feel like I’m moving/floating - and have tried Topamax, Lamictal, and Depakote, but couldn’t tolerate any of them. Though, I guess that doesn’t mean that they wouldn’t necessarily help if I could get past the side-effects. Verapamil takes the edge off for me, and otherwise, the only other thing I’ve tried is Effexor. Couldn’t get past those SEs either… (Groan. Maybe if I could take a month off work to trial/acclimate to something…) Holding out hope (slim though it may be) for the Petadolex Butterbur my neuro told me to try, now.

[JamieH]

Yeah, unfortunatley I think whether the medication will eventually help you and whether your system can tolerate it are two completely different issues. While the topamax started helping me a little bit within 2 weeks, it didn’t fully kick in for at least 2 months.

I also don’t know if the moving/floating sensation is the same as what I’m describing. I’m no expert, but this rocking sensation seems to be a very specific symptom where you have a distinct sense of back and forth motion as if you were on a boat. It almost identically mimmicks the MddS disorder (as I have read about it) with the obvious difference that it is triggered by migraine.

From a few people on here, it seems to come along with a general intolerance of artificial light, but not of sunlight, which is different than other migraine sufferers who may have intolerance of all bright light.

I have no idea why this might be, but I wonder if some day someone might come up with sub-classifications of these migraine illnesses that make more sense of our individual symptoms. While we are all linked by our connection to migraine, I don’t think all migraines are the same and obviously we do not all respond to treatment the same way. I suspect there is a better approach than the trial-and-error that is the current approach, but until someone figures out a better approach, that is all we have.

[erika]

I wonder how much difference there really is in rocking/floating just based on personal perception. I know that while I feel very floaty - it’s still a sense of rocking, but I’d describe it more as being IN the water, bobbing around, rather than being on a boat. Which is why I feel better lying down. It’s not that the feeling of floating/rocking has stopped. Just a personal preference, as I don’t feel as likely to fall over…

As much as it’d be nice if they could find a way to categorize us MAVers and treat us accordingly, I would guess though, that while the migraine mechanism would be similar for all migraineurs, the specific symptoms will always vary because it’s a brain issue, and the brain controls sooo many other things. While one part of my brain might be more disturbed by the migraine mechanism, it could be a different part of someone else’s brain. And it could come down to not just the parts that are physically or chemically affected, but also the parts that just bother me, personally, more. (Like, as someone who’s always been prone to carsickness, it’s not surprising that I tend to feel carsick when migraine affects my brain. Someone who’s never had problems with being carsick might never have that as a symptom. Does that make any sense? Just thinking out loud…) Anyhow, I suspect it all boils down to the complexities of the brain and each person’s particular sensitivities, chemical makeups, triggers, and such, which is why it’s even so difficult to get a decent diagnosis to start with. And why it’s so hard to find a decent med. Just comes down to meds that affect brain chemistry. Definitely not an exact science, unfortunately. I just wish they could at least come up with a way to figure out if we can tolerate a med by doing a blood test or something simple like that! Sure would save us all a lot of trouble, money, misery, etc!! :lol:

[JamieH]

— Begin quote from “erika”

I wonder how much difference there really is in rocking/floating just based on personal perception. I know that while I feel very floaty - it’s still a sense of rocking, but I’d describe it more as being IN the water, bobbing around, rather than being on a boat. Which is why I feel better lying down. It’s not that the feeling of floating/rocking has stopped. Just a personal preference, as I don’t feel as likely to fall over…

— End quote

The reason I would argue differently is that from the stories I’ve read, it seems that most of the people that have the MddS rocking (including me) seem to feel their WORST lying down. Sometimes for me it felt as if the whole world was going to tip over and slide me off of it! The ground always felt very solid. It just felt very solid and MOVING! Back and forth, and back and forth… Now does that make what I have significantly different than what you have? Probably not, but it might mean that I will respond to a different class of migraine preventatives better. Or it might mean nothing because I’m not a doctor and I’m just making stuff up on an internet forum.

I say all of this not to discount what you are experiencing at all, only to highlight that there seem to be significant different manifestations of the symptoms. I’m sure you are right that it is different parts of the brain being affected. I would love to see someone do a study on the different manifestations of the symptoms and find out if different classifications of migraine preventative medications are more/less effective against certain symptoms than others rather than just having everyone randomly trial preventatives until something works. But that is the best they have right now.

BTW I’m sure most migraine docs would say I am 100% wrong and the only common thread that is important is the migraine. Stop it and you stop the vertigo. So it doesn’t matter what preventative you take. I just find it curious that so many people on this forum with similar symptoms to me requried anticonvulsants before they got relief and didn’t respond to other migraine preventatives.

[david_shapiro]

For what it’s worth, both me and my sweetheart find that when we cant take lying down, it helps to either sit in a recliner (tipped back but not all the way), or to lie in bed on a very large wedge. The one we bought is ~3’ by >1 inch X ~30"

[system]

That was one of my primary symptoms as well. Topamax at 25mg for me made it much worse.
Nortriptyline at 10mg, gave me relief and fast. I just got xanax as well, to try before “monthly” when I get worse.
I tried it and it helped to.

Kay

[ilovesalem]

i’m rocky 24/7 but laying down does make it more violent. i feel like i’m in plane turbulence every night, or rolling down a grassy hill.

i’m currently taking 75mg of topamax and it’s stopped the true vertigo attacks i’ve had my entire life but unfortunately hasn’t stopped the 24/7 rockiness (mdds)

[JamieH]

So we’re back to everyone responds to medication differently. That’s why it’s so hard to treat this stuff.