Travelling with disequilibrium/vertigo/dizziness?
It’s funny how sometimes when you physically feel better, it can mentally makes things tougher. My cold seems to have pretty much vanished (about time) today, and I was actually feeling quite good.
Before I had my first episode of vertigo, I never had difficulty travelling. I’ve travelled quite far without any problems (Montreal to Hong Kong was probably the farthest I’ve been).
Since having the first episode of vertigo, I’ve travelled within North America, and I’ve also been to Costa Rica and Mexico — but I haven’t been able to make any overseas flights. Even those shorter flights (even the ’short’ international flights I’ve taken since then) have been really difficult.
The problem is that I get this sensation that I’m dropping through the floor of the plane… which sounds strange and just uncomfortable — but it’s an overwhelmingly strong physical sensation that never really goes away for the entire flight.
This ‘dropping’ feeling is one that accompanies me around and is part and parcel of my disequilibrium — but on a plane, it takes on a life of its own. I actually find myself grabbing onto the seat to keep myself steady and to try to combat the sinking feeling.
I love to travel, and I really hope there’s something I can do to get rid of this feeling for good (at this point, I wouldn’t think twice about something like surgery in order to never have to deal with this sort of feeling again).
Yet I’m unsure at this point if there even is such a procedure — something else I should probably talk to the neurotologist about when I have my post-testing appointment at the end of July.
18 Comments, Comment or Ping
tony
Get the same horrific feeling, sometimes like falling down an elevator shaft while sitting in my chair. Scary. All tests come back “normal” but BP meds may be culprit. Started in early 2006 for me, still have the issues. Seen 11 different doctors, Epley did nothing.
Sep 3rd, 2008
Vertigo Guy
I’m very sorry to hear that you’re experiencing this as well Tony — but similar to you, Epley did nothing for me either. Have you been to see a vestibular rehabilitation therapist? While all my tests also came back normal, the rehabilitation therapist was very quickly able to show me the nystagmus that indicated something was wrong.
While I know it’s tough to keep going to doctors who don’t seem like they believe you, VRT might still be a good route to go.
Sep 3rd, 2008
Tony
Yes, I did VRT for a bit, but the dizziness came back. I do not have time to go to VRT every week with my law firm job. As it is, I am taking tons of time off from work trying to figure it out. Every day is a living nightmare thinking I am going to “check out” and it gets worse as anxiety gets worse and so on and so on. The drummer of my band, aged 23, just passed away unexpectedly, so that threw me into even more of a tailspin. As I write this I feel as if my head is about to float off.
Sep 3rd, 2008
Stacey
Hi - I came across your website, as I am looking at purchasing the Nintendo Wii Fit & wanted to find out how it affects people with existing balance problems. Then I came across this post about how you get that ’sinking’ feeling - and it’s something I experience too. I actually have a balance disorder known as Mal de Debarquement Syndrome (or MdDS), where I continually feel like I am moving - either rocking/swaying back and forth (like being on a ship), or feeling like I’m being pulled to one side strongly, and also like I’m sinking into the ground (like going down in an elevator). My problem was actually not triggered by a boat cruise (which a lot of cases are), but by car travel & then re-triggered (much worse) by an influenza virus. After about 2 years of just swaying, I then started getting the sinking sensation - which really scared me the first time, as it was very strong. So I had tests done, but nothing showed up, nor could any doctor explain why I was experiencing these symptoms. Then last year I found out about a condition called MdDS, and I have found that all my symptoms correlate with this condition, and I have even chatted with a neurologist overseas who is researching this condition & he believes this is what I have.
Over the years, I have also suffered from the odd episode of vertigo, but only experience spinning/rotating with it & not sinking, so I’m wondering if perhaps something like MdDS may be a contributor?
Sep 7th, 2008
Vertigo Guy
Tony — it sounds like a rough time you’re going through (and I’m sure that sounds like the biggest understatement ever). It’s been about 3 and a half years since my first episode of vertigo, and I still worry about it coming back every day. I still worry that there’s something wrong with my brain/nervous system/etc. and that something terrible is going to happen to me. Strangely enough though, the anxiety starts to become worse than the vertigo… I would highly suggest giving cognitive behavioural therapy a shot. Talking things out with someone, and getting your fears out in the open does a great deal to dismantle them. And while time may be an issue, I for one will never put work or anything else above my health again.
Stacey — I’ve done a bit of reading about MdDS, but from what I’ve heard from the neurotologist, it can be tough to diagnose. And I also have to say I feel very sorry for you that you also have the ’sinking’ feeling. It’s just awful, isn’t it? I’ve always had a hard time explaining to anyone how bad it actually feels. Have you found any treatment or anything that helps with MdDS and this sinking/falling feeling?
Sep 7th, 2008
Stacey
Unfortunately, I haven’t found anything which has made a significant differerence in improving my MdDS. I have to make whatever modifications I can or avoid things which I know make it worse - stress/excess tiredness, using certain types of exercise equipment (particularly treadmills and exercise bikes), crowded places and ‘busy’ environments (eg supermarkets), large open spaces (such as airports), obviously travelling in an elevator. I also make sure I wear the flattest shoes possible & avoid any shoes with cushioning (unfortunately the feet have to then take more impact!). I find that the sinking feeling in particular is worse when I am really tired or stressed, and the only thing which really relieves it is proper rest. It’s more the swaying/rocking that is an issue for me, but I really hate the sinking feeling because it always catches me off guard.
I’ve had to rely on a neurologist in the US to be able to give me an idea as to whether I have MdDS (I live in Australia). I’ve seen several doctors and had blood tests, CT scans etc etc, but once they come back clear, I just get dismissed by the doctors - no follow up whatsoever. Not one doctor has said to me that even though they can’t find the problem yet, they will continue to try. Not one.
As you said, MdDS is difficult to diagnose, but there are some unique characteristics of this condition which make it easier to diagnose. The actual sensations of movement are not random like vertigo - the number of sways are easily counted in a minute with your eyes closed. Also, one important characteristic of MdDS is that it is relieved by motion, such as travelling in a car. When you are stationery, your eyes are telling you that you are not moving, but your brain is telling you otherwise, so you get conflicting signals. However when travelling in a car, your eyes are telling you that you are moving, and so is your brain, so everything is in sync and you can’t feel the swaying or rocking.
Having said that - I don’t like travelling in planes where I actually can’t have a visual in front of me. When I can’t sit by a window, I can’t even tell if the plane is going straight, or is going round in a circle. I have become very dependent on my eyesight to help me with my balance, and also my ears - I have difficulty in very noisy places also.
Any type of balance problem is extremely frustrating and so debilitating - the worst thing for me is that it’s not a ‘visually obvious’ problem (eg such as a physical disability), so those around me struggle to understand why I act and restrict my lifestyle the way I do.
Sep 10th, 2008
Vertigo Guy
I can completely identify with everything you’ve said here. I know how frustrating it is when people can’t see what’s wrong with you. I think the other thing that makes it tough is that people have sometimes asked me “what will happen to me” if I feel unbalanced or like I’m falling… and obviously the answer is, well, nothing beyond severe discomfort.
While I don’t have MdDS (there is not really anything to indicate that I have it, due to the lack of consistent sways, it’s made worse by motion, etc.), I find myself restricting my lifestyle in almost all the same ways that you do. I find I need to sleep longer than I used to, and I avoid crowded places and open spaces. Funny enough, I find that the supermarket is actually OK until I start to scan the shelves for items that I’m looking for, as long as it’s not too busy.
Getting dismissed by doctors is also something I’m very familiar with — I think they look at me and see someone who is relatively young, holds a steady professional job and has no other health problems, and they don’t really see why this is such a big deal for me. And while feeling discomfort may not seem like that big of deal, it’s feeling continuous discomfort that is so debilitating.
I live in Canada, and have found that there are few doctors here who understand (let alone know how to deal with) this type of disability. Is it the same in Australia? And does travel by plane make you feel worse due to the absence of visual motion? I love travelling but have been extremely limited as to how long I can actually last on a plane.
Sep 13th, 2008
tony
CAnnot find any solution. Vertigo brings on anxiety which bring on worse vertigo, etc. etc. Some mornings I wake without dizziness, make a slight head turn, and boom, there it is again. Sitting at desk, lean forward, same thing. I do get SINKING FEELING like Stacey here as well, scary.
All tests come back normal, but VEMP showed a 760% difference in right ear. You read that right, but nothing else shows up abnormal.
Sep 16th, 2008
Vertigo Guy
I know how you feel Tony. I’m always hopeful when I wake up that I can get through the day without feeling dizzy — but then the slightest movement will bring on the dizziness, and it will stay with me the rest of the day.
I haven’t had VEMP testing done, but I want to (even though I’m sure the doctor will tell me it’s unnecessary, as we already know what’s wrong). I’d love to hear your experience with VEMP and if it was useful in helping you to understand what’s wrong.
Sep 22nd, 2008
tony
VEMP study helped to convince wife, parents, doctors that I was not making all of it up, or that it was caused by anxiety alone (unlikely) - so that was a relief. My father is a doctor and may have been second guessing my symptoms abit, but the VEMP showed great disparity. No cure, for sure. Again, nothing has worked, but meditation and relieving stress do help. Activities standing up do not affect me, so I can fish, walk, etc. without issue.
Sep 29th, 2008
sandra dorsey
Im military related..have had dizzines/eyes/brain not in sync situation going on for about 10 years now. First, I was just given antivert for dizzy spells, until this past year. My doctor through Tricare (military) didnt want to refill the RX for me anymore..Being the smarty pants..he thought a hearing test would get rid of me. Imagine it when he found out I flunked half the hearing test..and a referral was given to the main medical hospital for ENT to test me. THE ENT folks found it wasnt my ears..but rather, major migraines..and eyes not being in sync sensation with brain..come with migraine attacks..SO..I am now, on 2 kinds of migraine meds..(elavil, and maxalt)…BUT..I now have MAJOR motion sickness..What a danged pickle!..
Frankly, I am beginning to wonder if there is something more going on in my brain than just migraines and hypertension lesions..TRICARE did an MRI on me for checking out just the inner ears…but flat refuse to redo me..with the focus being on the entire brain to see what the heck is going on elsewhere ..
I just had an eye exam..and have my glasses..so its not eye issues ..
.
Oct 6th, 2008
Vertigo Guy
Thanks for your comment Tony. Well, it’s good to know that the VEMP testing helped with something, even if it was just to convince others that something was wrong. I’m hoping that this test will show something, even if it’s just to convince the neurotologist that something is wrong.
Thank you for your comment as well Sandra. It sounds like you really need to push for an MRI focusing on the inner ear. And even if that MRI shows nothing, it’s my understanding that that doesn’t mean nothing is wrong (I’m not a doctor obviously, but that’s what I’ve been told by my doctor). Do you find the medication you’re on helps? And is there anything in particular that you find brings on your symptoms?
Oct 10th, 2008
tony
Here are the tests you need to make sure you keep your sanity in check:
VEMP - cold and warm water ear testing
HEARING - make sure you are hearing within normal variances
EYES - go to any eye doctor, get a checkup, esp. if over 35 years of age
MRI with inner ear contrast - Rules out MS (white matter), more serious things like strokes, etc.
Blood Pressure - Makes sure your blood pressure is normal, or even if normal, if it changes wildly with simple movement (20-30 points or more, not exercise, just standing or sitting or lying down)
MEDS - Many medicines cause dizziness - many
ALLERGIES - can cause dizziness
Any decent ENT should knock 75% of these out.
Oct 13th, 2008
Stacey
That’s a good checklist - I can vouch for the fact that allergies cause dizziness. Whenever I am going to have an ‘allergy episode’ (days of sneezing etc), I get intense dizziness beforehand. I have continuously had trouble finding a doctor who is actually willing to help me with dizziness. It’s such a ‘vague’, invisible symptom in their minds that they don’t think it’s significant - the fact that I had to contact a neurologist in the USA to give me a tentative MdDS diagnosis says a lot. Interestingly, what I thought were sinus headaches are actually migraine headaches, and he said that part of the MdDS is actually secondary to migraines. I know of some people who purely suffer dizziness as a result of their migraines - MAV (migraine associated vertigo). Sometimes I get these days where I feel off balance, woozy/tired and just yuck. I’ve been keeping a diary & when I look back, I am more and more convinced that they are actually migraines. Sometimes I get pain, sometimes I don’t - but the non-pain symptoms are virtually identical whether I have pain or not.
I am currently going to a physical therapist as I’m having knee trouble & she said that she would be able to give me some eye exercises to do. Not convinced they will help, but I’m willing to try anything!
Oct 14th, 2008
Hicksy
Dear all
Very interesting. As said on another of my responses I am still suffering imbalance 3 years after a severe vertigo attack which was diagnosed as VN.
I recently went on holiday to Argentina (from the UK) for 3 weeks. Just before I went I was incredibly anxious that I would suffer a further attack of severe vertigo on holiday and became very dizzy (on the way to the station). The holiday turned out to be very relaxing; I walked 250 miles, visited lovely places etc and felt the best every day that I have for since 3 years ago! I got to the busy packed airport at Buenos Aires and my anxiety returned. So did my vertigo. It was absolutely bizarre. This has happened before. I go away for a few days, relax, and feel (not perfect) but much much better. I, like many people, worried about getting back to the piles of paperwork at work and on my first stressful day back in the office I felt dreadful. Why on earth does this happen?
I have seriously cut back on alcohol intake but have found on the occasions I do drink a beer or two, and put my feet up and relax, I feel absolutely fine (the morning after is a different story though).
In summary the more I stress or worry the worse the effects are. On the way somewhere I build my anxiety up (”will I get dizzy?, won’t I get dizzy?). Do others experience these effects?
Cheers
Hicksy
Nov 6th, 2008
Vertigo Guy
This mirrors my experience almost exactly, Hicksy. The hardest part sometimes is distinguishing what is just anxiety from what is actually a physiological symptom — because anxiety almost always makes my dizziness worse.
As you said, I never really feel 100% better, but having time to relax and get away makes me feel much better, but as soon as I’m in an environment where it’s busy and stressful again, then the anxiety and dizziness suddenly return (and often in sudden, full force).
Just out of curiosity, when you went to the airport in Buenos Aires, was it acute vertigo (the room spinning around, unable to keep your balance, vomiting, that kind of thing) or was it more a sense of severe disequilibrium?
Stress is certainly a killer for me too — I wish I could say it’s nice to see I’m not the only one to feel this way, except for the fact that I wish no one ever had to feel this way!
Nov 8th, 2008
reggie
Hi everyone
I am delighted to find this site- much of what everyone says mirrors my experiences over years. Diagnosed as anxiety and a lot of it is ( I always assume at least half of what I’m feeling is anxiety); but also many episodes which feel like positional vertigo. Bad one last night out of the blue- just woke up and felt as if spinning (me not the room). Still bad this morning and definitely provoked by tilting head back.
I also find alcohol helps rather than hinders, in the short term. Coffee is my weak point- some days I can take it fine, others not.
Have people found that the repositioning exercises work?
good luck to all of you
Nov 11th, 2008
Vertigo Guy
Hi Reggie, and welcome to the site. I have to agree that head position has a big impact on how I feel — I woke up last night incredibly dizzy about 10-15 times, which makes it incredibly hard to get a good night’s sleep.
Alcohol also seems to have a beneficial effect for me in the short term (that is, I feel more relaxed and less dizzy), but even after just a couple of drinks I can feel the effects the next morning, and end up feeling much more dizzy than I did before. I’ve pretty much avoided coffee completely now, since it also seems to set the dizziness off.
I wish the repositioning exercises had worked for me, but nothing really seems to have any effect on my dizziness. I try to take better care of myself, but I still have days when I just feel terrible for no reason.
Nov 15th, 2008
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