Comments on: Travelling with disequilibrium/vertigo/dizziness?

By: Mac

Mac — Tue, 06 Jul 2010 15:03:51 +0000

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.

By: Jason

Jason — Mon, 29 Mar 2010 23:22:59 +0000

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

By: DENIS

DENIS — Mon, 11 Jan 2010 01:29:26 +0000

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.

By: Angela

Angela — Sat, 01 Aug 2009 18:36:38 +0000

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!

By: Joanne

Joanne — Fri, 31 Jul 2009 13:22:24 +0000

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)

By: Lacey

Lacey — Wed, 08 Jul 2009 23:29:16 +0000

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

By: Renee

Renee — Fri, 03 Jul 2009 20:07:06 +0000

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.

By: Tony

Tony — Mon, 29 Jun 2009 18:14:51 +0000

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.

By: Tony

Tony — Mon, 29 Jun 2009 18:06:53 +0000

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.

By: Tony

Tony — Mon, 29 Jun 2009 18:00:13 +0000

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