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.
30 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
Patty
I always have this strange dizzy feeling when waiting on the OUTSIDE of the elevator door (while waiting on our floor BEFORE getting on the elevator). It’s weird – it’s like my body senses the elevator in motion in the elevator shaft before it reaches our floor. I’ve noticed if I’m standing outside the door & have not pushed the “up” or “down” button yet, & the elevator is not moving between floors, this does not happen. Is it possible that I am actually that sensitive to motion on the other side of the door?
I’ve always been sensitive to motion sickness, since I was a child, but this is ridiculous!
Jun 9th, 2009
Kim
I do not believe I have Mal de Debarquement Syndrome as my symptoms are activated by car travel. These symptoms began about one month ago and occur 1-2 times a week. It’s as if my car is on a rollercoaster. I feel disoriented and, because I’m driving, I become fearful and start to hyperventilate, my hands once cramped backwards and my whole body, except my head has gone numb. It goes without saying, that I pull over, drink water, and wait for the “episode” to subside.
My doctor has done many tests that all came back normal. He suggested that the episodes are caused by dehydration. I drink a lot more water than before, especially while driving. This is scary..
Jun 15th, 2009
Tony
Back again, still no change after 3 years of trying to figure out the cause. Oddly, when I ride in an elevator, then walk, then stop (e.g. going to a doctor’s office on 3rd floor) I feel like the floor has disappeared.
I am experimenting with change in Blood Pressure (BP). After exhaustive studies using stgore bought BP monitors (wrist and arm cuff), I have noted a change of 20 pts/11 pts when laying down.
Keep in mind, I have had stress tests, nuclear stress test, MRI, CT, etc. and everything comes back “normal” for the most part. Tilt table test, which I thought did not mimic actually lying down, but who am I to question the test, did not show anything.
Activity does help, but often when just standing still, lying down (95% of the time I am dizzy) or walking, then sitting (e.g. going to bathroom) I get dizzy.
Meclizine, Bonine and numerous Epley Maneuvers have done nothing for me. Prescription nasal sprays ($40 for about 200 squirts) do nothing.
I am running out of things to check, but I know this….I cannot continue to live like this. I would rather have my docs think I am mad, and find a cure, then live like this.
Oh yeah, I am not working, basically totally disabled. Nice. 38 years old, 178 lbs, 5’9″ tall, used to be a “specimen” as it were – reduced to a frail 88 year old woman as far as how I feel.
I will not give up. Wish me some luck, I will post when I find my dragon.
Lying on
Jun 29th, 2009
Tony
CHECKING OUT!
The worst part of my “illness” as I call it, is the feeling that I am either about to faint or check out permanently. This is not normal and defies almost all the PDR’s out there. 3 years of dizziness, unexplained other than a 30% right ear deficiency makes little sense.
I have tried low sodium, MASS sodium, and am in the process of reducing all my meds to zero. This all began in 2006 for me, when I began taking Toprol and Cozaar for mild hypertension. The toprol I have reduced to 25mg/down from 50mg and the cozaar I have stopped entirely at times, with no change.
Both my father and brother are physicians and have checked me over, as well as 3 neurologists, 3 ENT’s (2 diff states), 2 PCP’s and a cardiologist or three.
The anxiety this causes is almost unbearable. If you had an actual DISEASE you could work towards a cure. I have nothing, a VEMP study to hang my hat on…..but even the ENT says in 11 years of practice he has never seen a case like mine. He has no patients like me. 1mg XANAX (usually taken .25mg x 4 times per day) does nothing or little to help. Better than nothing for me.
Odd, some docs want you to use Valium or Xanax to help alleviate dizziness, others want you to avoid their use. I have no idea what to do anymore, but I am driving my wife insane, and missing out on my life.
I fear death is right around the corner every day with this illness. Why would I think otherwise? Love to hear some with similar stories.
Jun 29th, 2009
Tony
In response to CBT – Congnitive Therapy
I do it all my friend, everything. Psychiatrist, Psychologist, to the tune of $80 a month – in co-pays. The problem I have with talk therapy is that they say “you do not seem unbalanced to me…..” which is exactly my issue. I have subjective dizziness (not vertigo – I move, not the room). I do not have a filmstrip of what is in the room or “spinning” so much (unless lying down).
I have purchased Charles Linden’s course on attacking anxiety and followed it verbatim, worked a little to lessen anxiety, but the dizziness in unrelenting. EVERY DAY! 100% of the time I have dizziness when I wake, like Groundhog Day (the movie) but with dizziness.
I cannot go out without fear of losing it. I cannot enjoy my life or my newborn daughter on the floor (I get dizzy). I am even afraid of holding her for fear of falling over. Funny, people who walk into walls get better, but I do not walk into walls, balance therapy did little to help me, and it appears more organic.
I still think it has something to do with my BP, as lately my BP has been 100/60 when lying down (according to monitors) but 130/80 when standing up. That is a huge change. Going to cardiologist again tomorrow – at least the 4th time I have seen him in a year.
They all think I am nuts………….maybe I am……….but a dizzy nut.
Jun 29th, 2009
Renee
I have been dealing with the feeling of “my car is on a rollercoaster” for approximately 10 years. I have searched and researched and have been to numerous doctors to no avail. A 15 minute trip would take me 30 minutes or so………..do to me “pulling over” to let the symptoms subside.
Well of course anxiety set in and consequently I have stopped driving all together. I totally depend on public transportation. I have recently heard about MdDS I will start to seek out doctors that will prayerfully help me. I want “it” to be something so I can starting living again.
Jul 3rd, 2009
Lacey
Hi, Everyone! After reading some of the posts here I feel like I have finally found people that will understand exactly what I am going through. There is no way to summarize my story so please bear with me. I am 48 yrs old and live in Kentucky. The only way I can describe what I’m going through is “imbalance”. I have had MRI and CAT a couple of times over the years…two years since my last testing…and nothing has been found. I started experiencing a pulling to the right back in mid 1980′s. I was walking through a mall and found myself going off toward the right. Ever since then I have a very diffcult time being in an open area or in a dark or dim room or even being outside at night. Up until I moved to Kentucky at the end of 2005 I was pretty much functional. I was able to work and drive and travel…I just had a difficult time walking in open spaces or going on rides at amusement parks or even flying in an airplane. I adjusted and gave up certain things to be more comfortable.. I have had bouts of true vertigo a few times…the room spinning or me spinning but it’s 98% imbalance I suffer from. Since March of 2006, this imbalance has become chronic. I am no longer able to work and have gone on disability. I have become agoraphobic and suffer terribly from panic disorder…especially when I HAVE to go somewhere in a vehicle (like dr’s appointments, etc.) When I have a panic attack I truly feel like I am dying. I’m sure some of you know exactly what I mean by this. I have another appointment with an ENT shortly and I’m hoping and praying that something will be found this time to explain this imbalance. I’m pretty much okay when sitting down but when I get up and move around (like doing dishes, etc.) the imbalance hits me and I start falling to the right. I have extreme fatigue and doing the simplest of things is tiring…taking a shower for instance. I do know I am in perimenopause so I’m sure the symtoms from THAT is exasperating the imbalance. I am super sensitive to every change in my body right now and anything will throw me into a panic attack. I also have hbp and am taking nadolol 40 mg 1 x per day. Sometimes I feel “funny” when I take it but I’ve been taking it for two years now and most of the time it keeps my bp under control except when I have a panic attack or there is too much sodium intake. I also take a valium when the anxiety gets to be too much and that helps with the imbalance I’ve noticed as well as the anxiety. Anyway, since this became chronic I also have severe “bizarre” sensations in my head. I experience pressure in my nose, my eyes see funny, my head buzzes…it’s all very scary. Of course my last CAT didn’t show anything unusual except for a slight thickening of my right sinus cavity. I’m wondering how much of these bizarre feelings are related to hormone imbalance or anxiety/panic? I notice that I experience imbalance more when these sensations in my head occur. I find myself crying a lot these days because I am SO tired of all of this. I want to go outside and walk instead of sitting around eating and getting fatter. I want to get in my Jeep and drive somewhere. I want to go shopping at Walmart. I want to have sex with my husband and not have to worry about if we have to stop in the middle of lovemaking because I’m feeling dizzy. I want to go to sleep and wake up without wondering if I’m going to be able to get up and walk okay. I pray A LOT and try so hard to walk by faith and not by sight but sometimes it’s so difficult. I do believe in the power of healing and keep praying for that…whether through a supernatural means or through doctors. Whatever method God chooses is fine by me. I just pray it’ll be soon. Thank you for letting me vent.
Lacey
Jul 8th, 2009
Joanne
Good morning all ….I have just found this site and have read all of your comments.
Honestly, I think your all very strong people who are facing these challenges every day, and some of you every minute of every day.
I first started getting floatie…lol..when travelling by car backk from Kansas , we live in Canada, (Quebec) so it was a long enough ride, one that we drove right through on.
At one of the stops , I went to get out of the van when I thought that I had had a stroke or something, I was floating, I felt like I was walking on very soft shoes and that if I didnt hold on to something I would not be able to walk.
My hubby helped me get to the bathrooms, but once there , I had to go it alone…I leaned up , I held on, I focused like I had not done before.
It was terrible to say the least.
I had to hold on to my hubby to get back to the van and sit down. I was ok sitting….
I asked him to get me some chicken noodle soup…yes I know its full of salt…but I am from the old school, it can cure anything…lol
well I ate it while we drove.. and before too long I felt “normal” again.
When we arrived home hrs later it was like a bad nightmare that I just wanted to forget..
Now since then , I have had other weird times with it, and the latest was a few weeks ago, we had gone to Florida (driving) and I did experience this whole thing over again. Feeling of movement even after getting out of the car for the night…some nights it was worse than others with me laying down waiting for the movements of the car to stop.. Again…chicken noodle soup. Go figure…and It would go.
When I was away we went to the local Wal Mart to do some shopping.
It was a super center and we were there for over 2 hrs . I did really good untill I noticed that my eyes were not focusing too well..I went to find my dil, who was over there somewhere lol…and told her I had to leave. By the time we were at the cash, I told her I needed to get out of there, gave her my wallet, and went and found my hubby and got in the van…I drank some apple juice, and had a dougnut thinking maybe it was low blood sugar…well as I did this I felt better..and I was good to go.. The Wal Mart had those fluresent lights and I was thinking this didnt help.
All the time I was away I felt good. rested ,and loving being there.
When we got ready to pack up to leave I was still good.
Getting back on the road, it was another story. I love to travel , but after so many hrs in the van and once again trying to get out of it I was hit with this krap..
Takes us 2 nights and 3 days to get back home, and 2 of those nights were with this ..one of the nights I nuked up a you guessed it a chicken noodle soup in the motel room..and once again…I got better almost right away…
We were in the van way to long for me on the last day and by the time I got here, I was really sick and ended up in the ER the next day.
Dr said that since this was the 2nd time I had a decent vertigo that she will send me to an ENT and for a hearing test..which I am waiting for.wont be till Sept 2/09
So now I am doing what a lot of you are doing, The best that I can and to do as much research to try and help myself.
I am not advocating chicken noodle soup…lol
It just at the time worked for me .
I take this day by day. I focus on the fact that I am getting better and when I do feel better I acknowlge it even more.
Especailly when I feel like krap.
I have had Panic/Anxiety disorders for as long as I can remember. So I like to believe I can tell the difference. I belong to 2 on line support groups who are very supportive. I also have taken CBT, I have had bouts of panic, agoraphobia, . I know that with suffering from these that I do have the tools in place to help.
I see that for a lot of us suffering from what ever title or no title , that they have deemed on us that Anxiety and Panic do have a place.
And I do know from experience that it does make things worse.
What ever I have what ever they tell me, I know forsure that I need to try and keep my Panic/Anxiety levels down.
When I feel that I need extra help, I have Novo-Betahistine,
I also have Valium for the Anxiety/Panic.
I am also med phobic so there is no fear of me over doing it..lol
Well thats about it for now, I hope that all of you didn’t get bored ,with what I wrote…sorry I tend to ramble…
if you have read this far , thank you lol
regards
Jo (Joanne)
Jul 31st, 2009
Angela
Hi all, wow….so many stories…and yet similar symptoms. I have been attempting to do a lot of research because I am on my 18/19th day of dealing with a “imbalance” floating type symptom. I did first have these symptoms back in 2004 & 2005 when my husband and I fly to go on a cruise. I came back both times with symptoms of like being “on a boat”…however, after treating with my GP, first time was an inner ear infection…second time she though sinuses. I figured I could never go on a boat again. Well recently my husband and I travelled to Las Vegas, within a day 1/2 I was experiencing the “swaying” again…of course I didn’t think about it..b/c I wasn’t on a boat!
Has anyone ever had this onset after flying? I’ve been on two antibiotics which haven’t worked, they gave me an antivert…but I knew it wasn’t vertigo, they have given me an anti-inflammatory (medrol pak) to see if it was the inner ear inflammed. No real relief yet. I had similar experience of huge sinus/head pressure like my head weighed a 100lbs. That has resolved somewhat. My GP has taken some blood work and I’m waiting for that.
Like one of the other posters, I find that driving doesn’t affect me as much, I happen to ride motorcycles but haven’t since this b/c I don’t feel safe doing so.
If the blood work is ok, then an ENT referral and MRI are next…but it sounds like many of you had that with no success.
I am just “working” through it when I can…I have to work, and do..but don’t feel as productive..I started to my workouts again, because I just started getting so meloncholoy that I couldn’t deal with it anymore…it’s a challenge to work out…I definitely feel the symptoms exasterbate but think my mental health needs it. Alcohol or caffine seem to increase the “imbalance” feelings…
I am surprised at how long some of you have dealt with this…makes me a little worried.
but Im hoping for the best. I know I’m having my thyroid checked (I’ve suspected problems with this before)…I have read that a thyroid issue could bring about these type of symptoms…has anyone else dealt with this?
Well I’m hoping for the best and will see whats next after blood work…Like everyone else..I just want to feel normal again!
Aug 1st, 2009
DENIS
i am going to work in the state soon is novo betahistine sold there.
if not is there some similar drugs to replace those.
I been diagnose with meniere syndrome and believe me no piece of cake.
It disable me to a point that i end up in the hospital.
Evy convulsion, eyes movement,can not get up,can not keep any thing in both ways,i think the body react like if it was poison,trying to protect it self, the ears and eyes sends a wrong message to the brain making every thing shut down into bodily shock.I got eco, cat scan,and about every test possible and guest what, nothing wrong, Until one day they send me to have visual test and inner ears test,so they hook me up with all kinds of plug in the scalp and started the test with all kind of light left right up and down every thing seem alright.
Finally the doctor took an icy water syringe apply the water inside the right ears and induce me the worst attack i ever had so to him it was the normal response of an healthy ears, than he did the same on the left ears and nothing happen this was the confirmation of my meniere syndrome, the ears was not responding to the icy water witch mean the ears was sick,he was able to see it because of the oscillation of both eyes trying to recenter my body position into a false position. So now i’m under treatment for life with novo betahistine witch work for me very good plus two tube in the ears to relieve the pressure.
Been 7 years in this situation, 4 not able to do anything but work and hoping not to get sick and when i got sick each crisis lasted from 1 to 2 weeks having people cooking and cleaning for me,an slowly coming around from the fog and problem to even think properly.
Now it has been 3 years that I’m in control with drugs but i still have the crisis witch do not affect me has much,since it is my eyes that are affected in a moment of crisis, i know when i try to read that I’m in crisis and once in a while i get the door frame due to bad balance, so i learn how to compensate the vertigo by looking at something about 20 feet away (focusing) for few seconds. And life goes on.I’m one of the lucky in my bad luck because usually people will get deaf in the affected ear and up to now no lost of hearing.
Well i hope i did not scare anybody but it is the way it affected me so long before i could have someone do something about it that got me having anxiety, witch when in crisis still scare me,but i know that it gets better every time,with less and less anxiety.
Love you guys and do not legs go, learn your symptom and talk to a ORL doctor.
I forgot the noise in the affected ear, me it sounded like a truck at night so load it woke me up, on a good day it put me to sleep. But not to many of those.
Jan 10th, 2010
Jason
I was first diagnosed with Meniere’s in 2008 after two initial episodes of vertigo exactly one week apart. Then after those attacks, nothing but tininitus in my right ear. Then in January 2010, vertigo again, the ENT put me on diuretics. Thats when they found out I didn’t have it. It dehydrated me and didn’t help with any of the symptoms. With an MRI of inner ear and brain, CT, ECOG, blood tests they determined it was an autoimmune ear disease. They put me on Prednisone, the hearing came back, no vertigo. the minute I tapered off, all the symptoms came back. Now they are putting me on a very low dose of Methotrexiate to suppress my overractive immune system. basically my immune system is attacking my ear nerve. So I emphathize with all of you on here. Best of luck to you all. Vertigo sucks, plain and simple
Mar 29th, 2010
Mac
Have had EXACTLY the same. Very odd sensation. I think it’s to do with anxiety and discomfort – that is, becoming hypersensitive to movement. I had the same climbing a very high old tower in a very enclosed stairwell.
Jul 6th, 2010
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