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irbuds
23-11-03, 22:51
Hi,

Finally I have met some-one else with this nightmare!! I have the exact same thing.

Can you go into the chat room? I would love to talk to you.

Will try there tommorrow night say 9pm Monday.

Thanks

Jules31
24-11-03, 10:59
Hi

I can't do the chat room tonight but can't believe either that someone knows how I feel. I feel so alone and dizzy. Let me know a little more about you.

Jules

irbuds
24-11-03, 22:59
Hi Jules,

Got your message

I would love to chat to you in the chat room - do you have a time that suits you?

Well you asked for info so here goes.

I too have the feeling that I am constantly off balance and dizzy!! it would make me feel very horrendous and scared to move around. I would get extreme feelings that i was about to pass out - of course I never did. I would also feel in a state fo constant movement even when I was still. It would range from a bouncy feeling to the feeling that I was falling through space can u relate? But probably the most debilitating aspect is feeling off balance and in the early stages very very dizzy. i say early stages that lasted months.

I was initially diagnosed with labrinthitus its a viral infection of the inner ear that makes u feel very horrendous. Went to the ENt who said oh yeh that will go. Then after another 2 years of still being NO better - I thought I cannot live like this - i was afraid all the time to go out alone and I just could not stand being dizzy and off balance.

Well this time the ENt said hmmmmm maybe the problem is central - that is in teh brain. I nearly hit the roof - but first he said that he would try VRT. Its a clinic that helps with exercise to rehabiliatte the balance centre in the ear.

So went there (by this time seriously wondering what was wrong) my own GP and the ENT insisted that it was mainly anxiety perhaps triggered by an inner ear virus - no joke. By the way the virus is symptomless in terms of ear ache and all there is none.

Any way he listened (audiological scientist) at the VRT and said straightaway it WAS inner ear. Did various tests (not the ENG as it is not always conclusive especially if u had the symptoms for a while). He concluded that I had BPPV and did an epley moneveur in each ear. Any how that has reduced a great deal of the dizzyness but I still feel off balance and as you describe in your post really.

You will be thinking what are you doing in the panic forum then. Well I had GAD in a major way before and got out of that whole mess and later developed this. BUT this is difffrenet to anxiety this whole motion thing is 24/7 - and of course I am anxious who wouldnt be?

I am not saying that whats worong with you by any means - I actually know several people who have this problem and most of us have been fobbed off by the medical proffesion as well.

The good news is that either way you will get better - I really like to here how you are getting along. Its a horrible thing to go through - I KNOW.

Well thats it for now - perhaps you could share your experince also.

Oh have you read anything about dizzyness and balance?

Jules31
25-11-03, 11:21
Hi Ilia

Well where do I begin, I started to have panic attacks in February of 2002. Then things just seemed to snowball from there. Ikept feeling dizzy on and off, that was just dizziness inside my head, not where the room moves or anything like that. Then by Oct/'Nov last year I was feeling really bad, really dizzy and off balance, as though the floor was bouncing underneath me or as though I had just got off a fairground ride all of the time. My dr keeps saying it's anxiety, but took blood tests, sent me for an ecg. Still nothing it's carried on for months and months since that, it eased slightly earlier in the year though I still had it everyday just not all day, now it's back all day and all night. I feel as though I'm moving about all of the time, when I stand still I feel like I'm swaying backwards and forwards and then of course I also feel faint and weak.

I'm seeing a psychiatrist and he has presecribed me meds but they haven't worked so are currently being reassessed. I was worried that I have some brain disorder and so was sent for an EEG but that came back ok too. Still the symptoms persist. I have never had them as bad as I have them at the moment.

I have never been to see an ENT because my dr didn't think it was anything to do with my ears, mainly because objects never spin with me, do they or did they with you?

So I'm still struggling on. Because I get so scared of something neurological my dr has said he will refer me to a neurologist if I want but I don't want to have to do that. He has said that it is only to give me a second opinion not because he thinks that anything is wrong.

Do you find that anything helps with your dizziness and moving feelings. The only thing that I have found is sometimes after I have had some alcohol I feel a little better, though I have to have about four or five glasses now, it used to work with two glasses of wine.

I have read lots and lots about being dizzy but still never seem to get anywhere with it. I am just so afraid all the time of the way that I feel. Is this how you are.

I would like to chat sometime but it's a bit difficult in the evening because I don't use my pc very often at home. I usually check this site whilst I'm at work

anyway that's just a bit about me, I'm off for another unbalanced and dizzy day

Jules

Belle
25-11-03, 18:48
Hi Jules, I was just wondering--had you been on a flight,cruise or long car trip before all this started? You said the room didn't spin, that you felt it--do you mean it felt like you were spinning? Just trying to help..Mine started out with the room spinning every time I dared to move but after that it went to this constant rocking,swaying inside myself.It was an inner ear problem,BPPV--that started all this. It might be worth a trip to a good ENT...At any rate, as human beings, when we feel like this we tend to think of the worst.If all your test are normal, then its the very hard task of convincing YOURSELF of that. If you notice--we feel something not quite right and then we start with the WHAT IFS and THEN it all gets worse--a vicious circle. I would try the ENT just to be sure. Good Luck, Belle

uryjm
25-11-03, 23:49
I have experienced something close to what you describe. The difference with me is I KNOW mine is anxiety! The sensation is a weird one, and hard to explain. It feels dizzy, but not the dizzy I'd feel if I turned round and round and round and then tried to walk a straight line. It's more a lightheadedness, a feeling that something's not quite right. Sometimes it feels as if I'm about to levitate and float off the surface of the planet. I also had that bouncing feeling in the early days of panic when I wasn't sure what was happening to me. But I hope that yours passes in the way that mine did.....

Jim

irbuds
26-11-03, 03:02
Hi - I maybe have the benefit of having suffered from GAD prior to this balance problem. I never ever once felt unsteady or dizzy 24/7 and that I think is the difference. The type of unsteady I have now is 'real' in the sense that unlike panic no amount of breathing, relaxation or self talk moves it. Mine actually is a sensation of movement which they acknowledge is inner ear. When I had GAD the type of dizzyness I felt was in intense bursts and did nt affect my balance once it passed.

Also when I first got struck with it i had real vertigo (the spinning room type) which I ran to the docotr with - she could clearly see a nystagmus (involunary eye movement) which is caused by a vestibular upset and not anxiety.

That said I think anxiety makes this whole thing worse!! big time.

Jules I am wondering how you manage to work? can u walk around perfectly normally? I am also wondering if you feel worse with certain movements or head positions? Oh you said that your doctor has said that its only inner ear if you spin - NOT true!! Vertigo is like anything else its on a scale. The mildest form is the sensation that you or say the room is moving slightly through to the very severe end which is that you are sick to the stomach and the room spins and looks visually unstable.

An ENt is you best bet - a neurologist is not a good bet as they have little experience with dizzyness. Oh I meant to say that these symptoms are very very very very rarely a symptom of any serious nuerological condition - less that 0.04% of people with this type of symptoms have anything serious. Of that 0.04% tends to be something called an aucustic neuroma which is non-cancerous!! but very unlikely as the main symptom is deafness. I and most others with this on-going problem get an MRI done which puts to bed your fears. Mine was clear and so has EVERY other person having it done that I know. I know lots and lots of people with this problem. Oh and I am not sure were you live but that absolute experts on balance and dizzyness disorders are neurotologists (not to be confused with a neurologist)there are 2 that I know of in the UK. One expert is Prof Linda Luxon she practices at the National Hospital in London and will take NHS and private referals form outwith the area. I plan to go myself next week. Can you describe your symptoms in any more detail?

Jules31
26-11-03, 15:45
my symptoms aren't altered by any form of movement and nothing seems to make them any easier by trying deep breathing or trying to relax.

I do work, I'm a lawyer and have no idea how I manage to get through most days. To everyone else i seem normal because I just don't tell them how I am feeling but I'm terrified on the inside.

It's hard to describe my symptoms, sometimes when I'm standing or sitting I feel as though i'm swaying backwards and forwards. It's definately a feeling of movement within me. It also affects my legs and makes them feel weak and as though they are swaying too. Sometimes I get feelings where it feels like the inside of my head moves, it's kind of a whooshing feeling not really a full head spin. I never see objects or anything move, though sometimes I get blurred spots in my vision usually in my left eye.

My head often feels tight around the forehead and across the top.

The movement sensations are weird sometimes it just feels like I'm bobbing up and down in a boat or rocking. It's so hard to explain. As I've said the only thing that seems to ease it is if I've had a drink and I wouldn't have thought an ear disorder would disappear with alcohol.

I have previously been given medication for my ears just to see if it helped at all but it didn't. I had a few days where I felt a lot better and the moving feelings went but if I'm honest I think that was because I thought I've got something wrong with my ears and stopped worrying for a couple of days. I don't know.But then it all came back even though I continued with the meds for months.

I hadn't been on a boat or an aeroplane before it all started happening, well I had been on a ferry but it was sometimes later before I got the symptoms, too long to have made a difference I would have thought.

Ilia, are you saying that your symptoms are from an ear disorder which is just made worse by anxiety. I'm a little bit confused. Do you really think that my symptoms could just be from anxiety.

As I type this I don't really feel like my head is moving but it does feel very tight and I have a headache and feel vague and remote which is another common feeling I get.

Everyone keeps telling me that my symptoms aren't of anything neurological and that neurological diseases don't manifest themselves in this way but I just find it so hard to believe for some reason

Well that's enough about me, let me know if you want to know anything else. Thank you so much for your support.

Jules

Jules31
26-11-03, 16:00
forgot to say that I feel really faint too a lot of the time, is this common. I have never fainted and my vision doesn't dim but I just feel weird like I might

irbuds
26-11-03, 20:23
Hi Jules,

The first thing that I would agree with whole heartedly is that neurological disorders do not manifest themselves in this manner either. I can realte to exactly the symptoms that you describe! and I know that for me its been a deffinate inner ear problem that triggered off the whole thing BUT i do think that anxiety about the symptom does make them worse.

I think that you should pat yourself on the back for coping with work! gee you are braver than me! I am nervous going out and about INCASE I feel more off balance and faint.

I am obviously not mediaclly qualified to say if your symptoms are purely anxiety or may be because of some degree of vestibular upset. But what I can tell you is that there is NO magic pill that will stop these sensations of movement - I wish - I would have been the first in line. Also tablets that you can talk for ear problems (i take it u mean vestibular suppresents such as stugeron, serk, stemitel etc)very rarely have any effect whatsoever on theses type of symptoms. Also they tend to be harmlful in the long run as they dampen down vestibular messages and hinder compensation.

Its intersting that you say that these sensations are not made any worse by movement or otherwise. Usually if there ear involvement you would find certain things quite unpleasant - for instance walking or similiar things.

But all the symptoms sound very much like what I and many others suffer from the feeling of movement in youre head and in your body that goes into you legs is classic of inner ear. But one thing I know is that anxiety is a clever little devil and if you are scared of these feelings and dislike them strongly and devote lots of time thinking about them then YES anxiety could very well be the cause and certainly a contributing factor.

I too get the faint feeling and am trying to decide if its the ear or anxiety thats causing it. Like you I have never actually fainted but feel like I might. For me the feeling is very intense its like my body feels very light and bouncy and my head extremely lightheaded and then it feels like i am losing consiousness - like you NO dimmimng of vision or actual loss of consiousness. Does that sound like what you experience? I think that this is the scariest of all the symptoms I suffer form.

But the most persistent feeling is the one that you describe the constant feeling of motion and also for me the worst is the sensation that my balance is off. If fore instance I stand with bare feet quite still i feel as if I am bouncing up and down quite alot or rocking - its soooo horrid. When ever I walk it always feel like there is a problem like something is off. It makes me feel that walking is a bad idea and I put off going out to much etc. Does that ring any bells.I also can tell you for a fact that this is a common symptom of inner ear problems and anxiety.

I also get a lightheaded feeling that is not as bad as the faint feeling but as you say can make u feel that faintness is on the horizon and not far away.

I know for an absolute certainty that anxiety can make you feel this way - been there and done that.

I am like you is this all anxiety or is something off in my ear still - its strange and frightening. I know!!

Apart form any thing else like you I just would like to get better - I am notfamiliar with your history and all - do you have a tendancy to anxiety any way? I certainly do.

Look forward to hearing form you. Ilia xx

PS You are not alone - so chin up.

PaladinX
02-11-05, 01:22
speaking of inner ear problems.. I feel dizzy alot.. and off balance sometimes when im walking.. Heights really make me feel weird too. I dont really feel the room spinning though.. More lightheaded clogged feeling..


but i noticed my left ear makes all kinds of weird noises.. First it used to sound like sticky wax sounds crackling when i talked or blinked hard.. now it makes a popping sound inside my ear.. .. could this be clogged ear wax causing this and dizziness or something?

Ming
25-12-05, 02:06
Hi Guys,
I've been browsing diligently regarding vertigo 'cause I have Miniere's Disease. The first symptom occured in 1993 and had minor vertigo experiences (especially when I was all stressed out at work), not until recently have severe vertigo attacks almost everyday. I usually took serk then switched to stugeron upon recommendation of my officemate who used to have vertigo as well. Stugeron seemed to ease me faster, but I noted that my vertigo worsened.

My EENT specialist said the Miniere's Disease is irreversible/incurable, that was why I only resorted to temporary medications just to mobilize and get me going. You know, my husband forced me to retire due to this.

For now, none of the said medications are helping me immensely as I am also worried for long-term side effects.

One of you guys mentioned that about this sickness relative to neural problems and undergone VRT. For now, I am schedule for VNG (videonystagmography) first. The VNG is a complete diagnostic system for recording, analyzing and reporting eye movements using video imaging technology. It's Windows-based technology is intuitive and easy to use. Hi-tech video goggles with infrared cameras record the eyes' position and display this on the screen together with the tracings. Clear analyses are provided for slow phase velocity, saccade and tracking data. Interpretation is facilitated by graphic displays comparing results to normative data. The VNG system now features the unique video clips capability for digital video recording and storage. VNG can be combined with ICS Medical's other products ENG, EP, OAE and RVT to form a state-of-the-art suite of test disciplines specific to your practice's needs.

I have consulted a neurologist as advised by some close friends. They say that due to a fluid retention in the brain may be the cause for vertigo, hence my consultation to a neurologist. The neurologist couldn't diagnose just yet unless he finds the 'cause of vertigo from the VNG test. I hope and pray that everything will go well afterwards.

I will keep you posted after then, but I would greatly appreciate if you could comment on this. Thanks all!

Ming

Monina Diaz

inked
01-10-07, 01:38
I am so glad that I found this site because I thought I was going crazy. Here is my story, please tell me what you think, I will try and not be too long winded. I have this feeling as if I am still moving when I am standing still. When I move or walk around I feel as if I am on a boat or trying to walk on a small raft on the water. I feel like I am dipping down severely from one step to the next. I feel like my movements are extreme, but I look perfectly normal, noone expects a thing. I cannot stand it. It is really bad right now and feel like I can't go on like this. I have suffered from anxiety and panic attacks, and had sinus surgery back in May 2007. I had the very same feelings prior to surgery for about 2 weeks but they went away. Now they have come back with a vengence. I have had a little nasal congestion, and my famiy is going through a crises right now. Could it be the 2 are feeding off of each other? I usually wake up in the morning and I feel fine and then it starts to hit me around 3 pm sometimes sooner. It makes no sense. I work in a hospital as a nurse and I am afraid how this is going to affect my job and my life. I can't continue to go on like this. Any advice will be appreciated. I'm not giving up, but I'm getting desperate.

xserenax
02-10-07, 21:25
hey i get this all the time its the main sympton i get, i always feel as though im going to faint and feels as though im on a convaer belt, just guilding along...... weird. i also think i see things move i get that dizzy??? anybody eles get the things moving feeling??
x

anxiety1
18-02-08, 21:01
what happened to irbuds and jules 31?

anxiety1
18-02-08, 21:08
I have felt the exact same way as jules31 and irbuds and also have had anxiety for a few years now, also am super stressed out all the time i worry about everything it sucks:( The dizziness and off balance thing just started a few weeks ago and i am starting to think that is all because of being stressed and having anxiety because everytime i get really p****d about somehting it gets worse and the pressure in my head gets way worse then i feel like im off balanced and cant think straight like a foggy headed feeling. Anyone else see the same picture developing for themselves?


This post has been automatically edited by the NMP post filter

deptford
20-04-08, 21:25
Hi Everyone

As you can see, this is my first post. I am relieved to see that I am not alone with these feelings of being off balance

I just feels as though my body is awkward and what used to be effortless; like walking quickly and stopping/turning is a real labour

I am just worried that one day I will fall in the road or somehwere.

I hope that all people suffering can provide any more insight and advice

I know how you are feeling

julie71
10-01-09, 20:25
hi i keep getting worried.i went out with my kids today all i did was bend over to get something and felt off balance like i was leaning to one side cant exactly say i felt dizzy it was a wierd feelin and only happens when i bend over

tommy1982
25-01-09, 05:13
I have had anxiety for 5 years, this is a new symptom that came in November and it has come on and off since then

off balance, when walking around it feel the floor drop, move or bounce. like I am walking on a boat

I have been to the doctor so many times he keeps telling me its anxiety, it goes away for a week then comes back for a week. Its scarey stuff.

I just pray it is the anxiety and it goes away.


It makes me obsess about everything my head, my eyes, my eyes even got sensitive for a period I rushed to the doctor with them and he said they where perfect.


Its hard to belive its a symptom, when you never have experienced it before.

jaym20
04-02-09, 03:28
hey folks
i completely agree
i have had this weird feeling for 4 years now
it comes randomly on and off
buttt the thing i have noticed is if i play sports and or run around i dont notice it...
it feels like something inside my head is spinning making me feel off balance.
it sucks!

LyndaK
24-02-09, 21:53
DIZZY, LIGHTHEADED, FOGGY-HEADED, OFF-BALANCE, TIRED, ANXIETY,

Finally, I have found other people who share my frustration and fears, and who are complaining about the exact same dizzy/lightheaded/foggy-headed feeling symptoms that I have. I started having an off-balance, dizzy feeling (which started as "on again & off again") feeling around 3 months ago. Then the week after Christmas, while I was shopping in a clothing store, I bent down and I got this dizzy/lightheaded feeling, like I was going to pass out. I didn't pass out, but I had the worst panic attack because the dizzy feeling scared me. Right after that, I started having panic attacks while driving - some so severe that I would have to pull my car over to the slow lane because I really thought I was going to pass out because they were so severe. Now, 8 weeks later, I have a dizzy, lightheaded, foggy-headed, off-balance feeling on a daily basis, which lasts all day and all night long. Some days I feel dizzier and more off-balance, and some days I feel just a little off-balance and foggy headed. I also have a foggy feeling in my eyes and my head feels like I have "air" in it, like it's full of something, and my right ear feels full all the time, and to make matters worse, I am tired all the time and no matter how much sleep or rest I get I still wake up with that tired, exhausted, foggy-headed feeling. I work full-time at a law office and I have to do alot of typing and proof-reading, which I have had alot of trouble doing these past few weeks. In any event, I went to my PC in the beginning of January because I thought I had another sinus infection. I had one (or so I thought) in October and my pc gave me an anti-biotic which seemed to clear up my symptoms. But then I started getting the same symptoms again at the end of December (which was a very stressful month for me because we lost our electricity for 10 days due to an ice storm and we were without power, heat, food, water, etc., until 5 days before Christmas. Needless to say, my anxiety level was extremely high during the month of December. I should mention that in 1998 I was diagnosed with Post-Traumatic Stress Disorder and Acute Anxiety Disorder and I do not take any prescription medications. Anyway, back to my story... so in January I went to see my PC and because he had just treated me for a so-called sinus infection, he didn't want to give me another anti-biotic so he ordered lab tests which included a CBC, Thyroid, Hormonal, etc. and chest x-rays, which (thank goodness) were all good and so he suggested I start taking an anti-depressant (Celexa) to help with my anxiety and to help with peri-menopausal symtpoms he thinks I may be experiencing even though my hormonal testing was normal. Simultaneously, while awaiting my lab results from my PC, I went to see an ENT who gave me in-office ear testing, which he concluded was normal. I also had a sinus CT (the new 64 slice one that shows everything and then some), which was also normal/negative. Needless to say, I am still having that dizzy, lightheaded, foggy-headed feeling, and I am having a feeling of tiredness in my eyes and my right ear and across my forehead to the top of my head feels full. I have been having acute anxiety because I worry constantly about my symptoms. I think about it from the minute I wake up in the morning until I fall asleep at night. I also have trouble falling asleep and staying asleep. Thank goodness my husband has been a rock of support for me because I have been so distraught as the days go by and I am not feeling better. I have had bouts of crying a few times a week and I am really getting depressed about it. I am normally an active person and I "go" from the minute I get up until sunset. This "disorder" or whatever it is has put the brakes on my life to the point where I fear going anywhere and even more so I fear I won't get better. It is a little comforting to read the posts on here about other people experiencing the same symptoms as me and so I don't feel all alone. Today, I am wondering if my symptoms are inner-ear (even though the ENT said I didn't have any inner-ear issues) or if they are simply peri-menopausal (I'm 49). In any case, your feedback and support will be appreciated.

sharona
07-03-09, 14:10
Hi
Please let me know if it is peri-menopausal as I have the same symptoms, I have been to my doctors which said the dizziness is high blood pressure, even though I think its not, as I have monitered it myself over a month.I am due to have a 24 hour BP and heart moniter machine on in April so I will let you know.

Sharon

LyndaK
09-03-09, 17:58
Hi Sharon,

I am still trying to figure out if my symptoms are peri-menopause or just anxiety/stress related. I have an appointment on 4/6 with my GYN and I am hoping to get some answers then when he retests my hormonal levels and I discuss my symptoms with him.

Since my post on 2/24/09, I've only had mild symptoms of dizziness & lightheadedness. I am keeping track of my symptoms on a daily basis. I wish I had thought to do that 10 weeks ago when the symptoms started, but I was too worried and freaked out to even think straight. I actually felt like I was in a frozen state of mind. I couldn't eat, I couldn't work, I was having awful crying spells, I was an emotional wreck, until I found this website and read everyone elses stories. It really made me feel alot better and since then I've been following some of the advice of other people, like keeping a daily log of my symptoms. I noticed last month that my symptoms (dizziness, lightheadedness, crying spells, very high anxiety, anxiety attacks, shaking, insomnia, waking up throughout the night, breast tenderness) did get worse the closer I got to my period. For the past 11 months my periods have been irregular in that I either get 2 periods a month, none at all, or I skip a month, or I skip 3-5 months. I never know when I'm going to get it and/or if I'm going to get it. I am really anxious to meet with my gyn so i can go over my symptoms with him. He may have a different opinion/diagnosis about my symptoms than my PC had when he told me my hormonal testing (that I had done in January) was within "normal" range. Fortunately, I don't have high blood pressure so I can't comment on whether your symptoms are related to that or peri-menopause, but don't give up getting an answer. In the meantime, good luck with your BP and heart monitor testing. Please let me know how you make out with that. I am curious to know if your symptoms are peri-menopause related.
LyndaK

LyndaK
10-04-09, 17:44
Hello again,
I wanted to follow-up on your BP & heart monitor testing and ask if you have had it and if so how you made out. As for an update on me, I am still experiencing the same symptoms referenced in my previous posts. I did see the gyn specialist on 4/6 and he told me that it is possible that the symptoms I'm describing are peri-menopause related, but he said he is not sure about the dizziness/lightheadness. He has heard of dizziness/lightheadness happening during peri, but he has never treated anyone or met anyone who has experienced it. In any event, he prescribed a bc pill (Loestrin) which he wants me to try for 3 months to see if it helps regulate my hormones and the dizziness/lightheadness. Unfortunately, he said that there is no specific test to see if your hormones are imbalanced unless you take a blood test at the exact same time that the imbalance is occurring. I have been doing some googling and found that adrenal fatigue (which is caused by hormonal imbalance) causes all of the symptoms I am experiencing, but unfortunately there isn't a test for that and anything endocrine related is very difficult and near impossible to diagnose. I'm keeping my fingers crossed that the bc pills balance my hormones and allow me to feel like myself again!

Best regards,

Lyndak

bluewoman
11-04-09, 21:49
PLEASE keep us posted on how the pill works- i am considering taking them too because i have the exact same symptoms as you. i am 37 though and doc is afraid of the pill because of the clotting factor :huh:

sharona
12-04-09, 09:00
Hi
My appoitment for the moniter is the 20th April so I will let you know. Thanks for the advice. I do think its menopause symptoms especially as my mum had the same. Speak soon.

Sharon

conxx
13-04-09, 03:59
It is caused by the imbalance of C02 and Oxygen in the blood stream which stems from increased heart rate and rapid breathing. I learned some breathing techniques here. http://panicdisorderanxiety.com

gagrawal
05-05-09, 07:52
Hello All,

Nice to find this forum to describe the very unique problem that I have been suffering from for the last 3 years.

I am a 30 year old male, residing in India. I used to travel abroad quite often to Europe, specially to colder countries like Sweden. After one such travel in 2003, I had a giddiness attack (with my head spinning bad) during midnight, and it lasted for a day. Stugeron was prescribed and it subsided. All the tests were carried out to rule out any brain or neurolgocial disorders. Nothing turned up.

The episode recurred after an year in 2004 and again in 2005. Since 2005, I started to have a continuous feeling of imbalance along with light headedness. I also developed acute travel sickness, with air travel being the worst for me.

A caloric test performed showed a small issue in the left inner ear, after which I ws again prescribed Stugeron and Vozet. Its been 4 months now since I have started to take these drugs but the continuous feeling of off-balance remains. It has really affected my work, even though I have been free of any kind of personal/work stress.

BasilCat
05-05-09, 10:27
I have had a lot of dizziness and loss of balance with anxiety too. I would say that along with unreality, it has been my main symptoms of anxiety and it is very scary and unpleasant.
To cap it all, about 18 months ago I was in bed on a Saturday morning and I woke up in the worst state of dizziness I have ever experienced. I was terrified and whilst it must have only lasted 30 seconds, it felt like 30 years. It was like things were going round inside my head. My balance had gone, I felt I was going to fall off the bed, I didnt know which way was up - it was awful. I thought I was having a stroke or something. When it stopped I was so shocked and I cried for most of the weekend. The doctor told me it was positional vertigo. Trouble was, it gave me a bit of a set back with the anxiety.
The positional vertigo only came back once about 2 weeks ago. It was not as severe and not as bad but it was there all the same. Something told me to lay still and relax and not fight it and then it was gone.
But the dizziness/loss of balance I have had with the anxiety feels totally different. Still awful all the same.
I would say that I have got a phobia about dizziness as a result of all this. It absolutely terrifies me and I cannot cope with feeling out of control. Thankfully I have not had it so much lately.
Shirley

BasilCat
05-05-09, 10:39
Forgot to say Lyndak, I had panic attacks in the car too. This was at the start of my 4th breakdown 3 years ago. For almost a year after that, I would not get in a car, let alone drive one. Then I dared myself to drive around Tescos car park when it was quiet and hubby was shopping there. Then I drove the 1/4 mile to Tescos. Then I managed to get into town (2 miles) then I started driving round it - 3 or 4 miles. Then I started going to Martin Mere about 10 miles away. But I was still desperate to be able to drive the 60 miles to my parents again, the way I could before I had the breakdown. So I carried on with the 10 miles to Martin Mere, once a week for a year. Then I took my daughter on a 60 mile round trip to Lytham and back before Xmas last year. It felt strange to be so far from home with the car again and I didnt know what to expect but I was ok. Then on New Years Day this year, I dared myself to go the 60 miles to my parents with hubby sat next to me. 2 months later I did it again. Then, after exactly 3 years of not being able to do it, I finally drove the 60 miles to my parents on my own. It was on Good Friday. My next challenge is to do it with my two kids in the car. Its taken me 3 years but now I have done the drive. It was an emotional torment for me these last 3 years, not being able to do it but at least now I know I can. It is possible. I would say that I am 90% recovered from the anxiety and although I did not feel 100% when I did the drive, it wasnt enough to stop me attempting it.

Shirley

lesleya
05-05-09, 11:13
I get the same symptoms too and ive been told its perimenopause as well, it can be really scary especially the dizzy heads and palps. I think all of the other symptoms ive had in the last 2 years are all caused by menopuase too...overwhelming feelings of tiredness, headaches, occassional mood swings, hot/cold sweats, anxiety/panic attacks are all menopause related.
Wish it would go away as quick as it came.
Hope your monotoring is going ok sharon.
Take care.
xxx

BasilCat
05-05-09, 11:30
Another thing I forgot to add is the fact that I am probably menopausal as well. I am 52 years old and I am tired a lot of the time and have mood swings as well.

Shirley

R.S 31
12-05-09, 00:32
Thank you everyone for taking your time and sharing your issues. Not that it helps but its “good” to know that I’m not alone with this manner. Before I continue, I must mention that I’m coming from a foreign country so please forgive me if I have some typos and/or grammar mistakes.
I’m even not sure how to name it. I’m not sure that dizziness/vertigo are the best ways to describe my feeling. I don’t feel that the world is spinning around me and I’m not being confused or disoriented.
I guess the best way to describe it is that I’m feeling that I’m walking on a boat, a feeling of being off balance. This creates a very inconvenient feeling which affects the quality of my life. It all started 9 months ago while I was at work. All of the sudden without any reason I felt that the surface that I was walking on didn’t feel the same. I immediately sat down since I was so scared and had the feeling that I was going to fall. It felt like I was standing on a boat or being in an elevator. I went home hoping it will disappear. Since it didn’t go away, I went to see my doctor who advised me to run some tests. I did blood test, urine test, EEG, and C.T.
Thanks God, all tests were normal. However, the problem remained so I took it to the next level and went to see a neurologist who recommended M.R.I. Thanks God, again, all results were normal.

The next step was meeting with an ENT (Ears, Nose & Throat) since I had the feeling it was coming from my ears. We ran couple of tests but everything was normal.
The last wrote me prescriptions for 10mg of Amitriptyline which I took for 3 months. Then, I doubled the doze to 20mg per day but it brought no results.

In that point, you can imagine how desperate I was. No one seemed to diagnose my problem so obviously no one could help curing it. I decided not to give up and I tried some alternative health options such as acupuncture, reflexology, and body manipulation but unfortunately they were no help either.
I must mention that it only appears while I’m walking. It doesn’t happen while I’m sitting, driving or lying down.
It doesn’t affect my vision, appetite, falling to sleep, sleeping or any other functions. As mentioned, it only kicks me while I’m walking.
If anyone feels the same symptoms and have any comment or suggestion, please feel free to contact me.
Thank you, God bless you all.

ann01
15-05-09, 18:46
I too am really struggling with the lightheaded feeling 24/7 I really struggled at work today but managed to stay, I feel lightheaded within my head and feel like i am swaying, and movement in my head, the room doesn't spin or anything, but this symptom is really scary, I am too scared to go out on my own at the moment, and when i do it brings on a panic attack, anxiety is an horrible illness and it is unbelievable the symptoms that it does bring. I think that why it is so hard for us to convince ourselves that it is anxiety take care Ann

headlight
24-07-09, 04:22
I too am really struggling with the lightheaded feeling 24/7 I really struggled at work today but managed to stay, I feel lightheaded within my head and feel like i am swaying, and movement in my head, the room doesn't spin or anything, but this symptom is really scary, I am too scared to go out on my own at the moment, and when i do it brings on a panic attack, anxiety is an horrible illness and it is unbelievable the symptoms that it does bring. I think that why it is so hard for us to convince ourselves that it is anxiety take care Ann

The lightheaded feeling is not nice but you will be fine, I know because I have been lightheaded/dizzy for 15 years now. I've learned to live with it.

For me it started when I was 21, I started having a strange feeling when I was walking, like I was being gently pushed in the back. Then one day when I was sat down having lunch I had a massive wave of lightheadness/dizziness come over me. I was in the Army at the time, so just got up and left the mess hall in a frenzy of panic. Since that day I have never been the same, I would say that I lost my real personality at that moment. I went from being a happy care free person to a quiet and insular character.

The first major symptom I noticed after the wave of lightheadness, apart from the lightheadness, was that I would get awful, out of proportion hangovers. I was a fit young man and had never suffered a hangover in my life, but from that day onwards I would literally feel like death if I drunk too much the night before.

Then all the other symptoms started: Nervousness, I get nervous of everything, if I have to give a presentation in 6 weeks time, I am nervous for 6 weeks. Sensitivity: I'm very sensitive to being criticized personally or about my work. Negativity: I've become a glass is half empty type of person etc, etc, you get the picture. Along with the mental symptoms, along come the physical ones, bowel problems, stiff neck, crunching neck and shoulders, clenching jaw on so on.

For me though the worse symptom of all is the lightheadness, some days I hardly notice it (although it is there), some days it is almost debilitating. It makes me tired, sad, gives me a foggy head, sometimes scares me (not that often anymore), pisses me off. Its something no one else can understand unless they suffer from it.

I don't notice the lightheadness when I'm running or exercising. I notice it less when I am on holiday. It gets worse with stress. But it never goes away and much like a lot of people on here and other forums I have tried everything and spent a lot of money.

It has not stopped my life though, I have got married had 2 kids, move to Australia and forged a fairly successful career. I do feel as though I have been cheated out of a better quality of life though.

Good luck to everyone suffering similar symptoms, I really can feel your pain.

Panikki
24-07-09, 12:06
Hi
I too suffer the daily dizziness and off balance...feel like i'm constantly hungover and even sense of staggering its awful . I also have the sensation that some-ones pushed me ..its really odd..i often think i've got some-thing awful like MS but probably just anxiety as many of you seem to suffer from the same..i do let it get in the way of life as i hate this feeling when i go out so i dont go out much and if i get it when i'm at home on my own i start to really panic..I just cant win! Gald i'm not alone with it though:D Jodiex

headlight
30-07-09, 02:16
Hi
I too suffer the daily dizziness and off balance...feel like i'm constantly hungover and even sense of staggering its awful . I also have the sensation that some-ones pushed me ..its really odd..i often think i've got some-thing awful like MS but probably just anxiety as many of you seem to suffer from the same..i do let it get in the way of life as i hate this feeling when i go out so i dont go out much and if i get it when i'm at home on my own i start to really panic..I just cant win! Gald i'm not alone with it though:D Jodiex

What I have come to realize is that there is a very fine line between feeling awful and feeling well. During my 15 years of lightheaded / dizziness I have had brief (maybe only 30 seconds - 1 minutes) spells of feeling normal. When one of these spells happens I feel so good I could cry, I smile and feel happy, then they go again. This is what made me realize that it is very unlikely that I have anything very wrong with me, and that my body / mind is just slightly out of sorts.

The problem I have is determining whether my symptoms are the cause or the effect of my illness. What I mean is, is the stress, anxiety, nervousness etc caused by my lightheadness or has the lightheadness been caused by the stress, anxiety, nervousness etc. I'm pretty sure its the later as my symptoms do improve in stress free situations and they do get worse when I'm stressed.

Good luck to everyone, it would be nice if one of these threads actually ended in good news once in a while and did not just peter out over time.

ecb
30-07-09, 18:37
I can also fully empathise with this feeling of lightheadedness/not feeling with it/chronic fatigue. Its difficult to know if the meds cause it or the anxiety. I am trying to slowly come off my meds to see. It is very scary living in fear of passing out at any time. As I am sure we will all agree, it never actually seems to happen though. We need to reassure ourselves with this x

headlight
31-07-09, 00:14
I can also fully empathise with this feeling of lightheadedness/not feeling with it/chronic fatigue. Its difficult to know if the meds cause it or the anxiety. I am trying to slowly come off my meds to see. It is very scary living in fear of passing out at any time. As I am sure we will all agree, it never actually seems to happen though. We need to reassure ourselves with this x

I've never taken any meds for this, so I know thats not the cause for me. In the first few years I was also in constant fear of fainting / passing out, I never have though. I remember standing in a queue or sitting around the dinner table with my extended family feeling very lightheaded then starting to sweat out of fear of passing out, I never did.

Changing the subject slightly, does anyone else with this constant lightheadness crave sugar or have the need to eat more often than usual. I need to eat something at least every 3 hours or the fatigue worsens considerably. I've had my bloods done loads of times and my blood sugars fall into the normal range (as does everything else). I've also noticed that if I totally cut processed sugar out of my diet, my symptoms subside somewhat. They don't go away, but I have never actually been able to stick to the no sugar diet for more than a couple of weeks, my willpower simply gives up.

imsoscared
07-09-09, 05:28
please please help me. this is my first time ever being in a froum like this but i need help. i am a twenty year old man who has been diagnosed with panic and anxiety attacks i have them frequently and by frequently i mean all the time. i am currently having one and want to go to hospital but i aint cause evvery time i go they tell me the sam,e thing and i just want the help. now i am always dizzzy perhaps from the medicine i have bouncy vision and objects tend to move on me if i stare at them. i just always think that maybe this time its something worse is this normal has anybody else felt this and i will get tis quick rush of lightheadness like i am about to faint i hate it what can i do it happens to much i dont even go out anymore i am 20!!!!! please help thank you....travis

14dale
02-11-09, 00:16
Hi im Dale and im 15 years old.

I like the restof you have a dizzy feeling as if im rocking side to side on a boat and i feel off balance ir started 4 weeks ago and the doctors diagonsed me with migranes and put me on step 1 migrane treatment so i was like ok. That failed so they put me on step 2 my seveare headahches went but i was left with a dizzy feeling and off balanceness my doctor then diagnosed me with vertigo and gave me tablets but they didnt work and im set to go back again. I find it hard to sleep at night because i feel like im swaying and my head is very tight also im very consious about my heart beat. Its a bit more reassuring to know that im not the only one feeling like this but ... im still really scared i think that i havent got vertigo i think ive got something more serious but like youve all said thats just anxiety as im only 15 i find it hard to cope with this random illness and ive had 2 weeks off school allready im just a normal teenager who likes to go out with friends and stuff and i enjoy school and dont really think or worry about my exams my mum and dad are going threw a devource but that doesnt have seemed to effect me that much. Im really scared and dont know what to do can someone please write back and help me. Thank you

bubblz
11-11-09, 00:54
Hey i have the exact same symptoms an have had them for 2 yrs now. I have had mri's an been to an ear dr they say they dont no what is wrong can you refer me to where you went an what ur final diagnosis was please i have 4 kids an this is a huge barrier for me an nobody seems to want to help me please email me with anything helpful at lildulc@yahoo.com thank you

bubblz
11-11-09, 00:56
irbuds i have exactly what you had to a T its been going on for 2 yrs now an none of the drs i have seen can seem to tell me whats wrong can you tell me what your final diagnosis was an if you no where i can make an appointment to see if thats what i have please. I have 4 kids an this is a huge barrier for me an nobody seems to wanna help me please email me with any info you have at lildulc@yahoo.com thank you

Alex1983
06-12-10, 00:35
my symptoms aren't altered by any form of movement and nothing seems to make them any easier by trying deep breathing or trying to relax.

I do work, I'm a lawyer and have no idea how I manage to get through most days. To everyone else i seem normal because I just don't tell them how I am feeling but I'm terrified on the inside.

It's hard to describe my symptoms, sometimes when I'm standing or sitting I feel as though i'm swaying backwards and forwards. It's definately a feeling of movement within me. It also affects my legs and makes them feel weak and as though they are swaying too. Sometimes I get feelings where it feels like the inside of my head moves, it's kind of a whooshing feeling not really a full head spin. I never see objects or anything move, though sometimes I get blurred spots in my vision usually in my left eye.

My head often feels tight around the forehead and across the top.

The movement sensations are weird sometimes it just feels like I'm bobbing up and down in a boat or rocking. It's so hard to explain. As I've said the only thing that seems to ease it is if I've had a drink and I wouldn't have thought an ear disorder would disappear with alcohol.

I have previously been given medication for my ears just to see if it helped at all but it didn't. I had a few days where I felt a lot better and the moving feelings went but if I'm honest I think that was because I thought I've got something wrong with my ears and stopped worrying for a couple of days. I don't know.But then it all came back even though I continued with the meds for months.

I hadn't been on a boat or an aeroplane before it all started happening, well I had been on a ferry but it was sometimes later before I got the symptoms, too long to have made a difference I would have thought.

Ilia, are you saying that your symptoms are from an ear disorder which is just made worse by anxiety. I'm a little bit confused. Do you really think that my symptoms could just be from anxiety.

As I type this I don't really feel like my head is moving but it does feel very tight and I have a headache and feel vague and remote which is another common feeling I get.

Everyone keeps telling me that my symptoms aren't of anything neurological and that neurological diseases don't manifest themselves in this way but I just find it so hard to believe for some reason

Well that's enough about me, let me know if you want to know anything else. Thank you so much for your support.

Jules
Hi Jules, I know you posted this quite a few years ago, but I suffer from almost exactly the same symptoms as yourself. If it's any consolation, you have eased my fears somewhat as I thought I was the only person in the world who felt like this. If you're still active it would be great to hear from you.

jaynjaylyn
19-05-11, 02:48
[QUOTE=Alex1983;758594]Hi Jules, I know you posted this quite a few years ago, but I suffer from almost exactly the same symptoms as yourself. If it's any consolation, you have eased my fears somewhat as I thought I was the only person in the world who felt like this. If you're still active it would be great to hear from you.[/QUOTE


Me too. I suffer the same exact symptoms and I hate it soo bad.
:weep:

boat ride
20-09-11, 03:33
I no this post is older then time . And im new to this site but if any one of
you could give a up date on how things are going with the lightheaded/offbalance
thing i sure would like to find out . thanks boat ride

machaela
08-10-11, 18:35
I am so glad that I found this site because I thought I was going crazy. Here is my story, please tell me what you think, I will try and not be too long winded. I have this feeling as if I am still moving when I am standing still. When I move or walk around I feel as if I am on a boat or trying to walk on a small raft on the water. I feel like I am dipping down severely from one step to the next. I feel like my movements are extreme, but I look perfectly normal, noone expects a thing. I cannot stand it. It is really bad right now and feel like I can't go on like this. I have suffered from anxiety and panic attacks, and had sinus surgery back in May 2007. I had the very same feelings prior to surgery for about 2 weeks but they went away. Now they have come back with a vengence. I have had a little nasal congestion, and my famiy is going through a crises right now. Could it be the 2 are feeding off of each other? I usually wake up in the morning and I feel fine and then it starts to hit me around 3 pm sometimes sooner. It makes no sense. I work in a hospital as a nurse and I am afraid how this is going to affect my job and my life. I can't continue to go on like this. Any advice will be appreciated. I'm not giving up, but I'm getting desperate.
U are suffering with anxiety and panic attacks in my opinion hun!I suffer myself really bad and have just found an answer,try looking up The linden method!U will get better if you try this!Good luck xx Machaela

expecto patronum
08-10-11, 19:25
Hi to anyone suffering with this. I had this symptom some years ago and it was thanks to support from people on this site that I got through it. When it started for around six months I had it constantly and just felt like I wanted to die, so I know how awful it feels. I got some help from several people on here who said that they had eventually stopped minding it and it had then eventually gone away. I thought that would never be me but it still gave me hope just to hear from other people with the same thing after every doctor I saw seemed to confirm my feeling that I was the only person ever to feel like that (nothing makes you feel so desperate as seeing doctor after therapist after doctor who just doesn't know what the hell to do with you!) But eventually I started to enjoy things again and to challenge the idea that feeling dizzy all the time meant I could never enjoy my life again, and I thought 'this must be what they meant', and I started to get some hope. Eventually I just stopped minding it at all, it was still there but I had genuinely lost my fear of it (something I thought I could never do). And from there it just gradually stopped happening; now I only get it occasionally when I am really tired.
If anyone wants to PM me about it feel free, though I won't be back on here til Monday as I have an interview to prepare for tomorrow.
Take care xx

cjjs
26-03-12, 01:54
Finding and reading these posts has helped me a lot, thank you everyone. I am 43 yrs old and have been very healthy and injury free most of my life. I am currently feeling off center and off balance all the time. This has been very depressing and as a result, I find myself wanting to do less and less each day. I have been a very active, go getter type my whole life and I always believe the glass is half full. However, I must admit, this constant dizziness feeling is getting the best of me....I would love to have the answers to what the heck this is and how to fix it? I have been under a lot of marital and financial stress lately and my doc says i just need to takle some time off from everything. I have been trying to rest and get better but the more I rest, the more tired and depressed I get. Please help, anyone. thanks

ttff44
05-05-13, 06:43
I too am suffering, but for 3 years real hard. But not only that, with other symptoms. I am hoping to find someone who has had similar. I have been diagnosed with Cervical dystonia, bilat carpal tunnel, sacroiliac dysfunction, VNG testing for dizzy balance issues showed mild right ear? I had the most crappy neurologist who after the test and result of the VNG sent me to vestibular rehab, but because of my neck issue it was a waste.

I also have severe TMJ with arthritis. I am on disability, I do not want to live like this, this is torture, all of it and each compounds the other, and my family says its all just anxiety, but if they could walk a day in my shoes, try to sleep one night with the torture they would understand, but I do not wish any of this on my worst enemy. I used to have 2 jobs, I was a work aholic, now I rarely leave my house and I mean rarely, I have desire to do things in my mind, but the physical issues I suffer make anything worthless!

I wish this was all just anxiety, I went to ER the other night with vascular spasming I could feel and hear in my ears, could not sit up even hardly, stumbled onto a stretcher in the rain, as the amublance drivers were in an argument.....as if they couldnt get over whatever they argued about on the way to the emergency call, I literally thought I was dying, the ER doc was a joke, my WBC 14.5 so HIGH, all other absolute counts were all elevated except the lympocytes oddly. The ER doc finally agreed to a CT scan ( but not with contrast! ) just the regular lame CT scan, I am in medical field, or WAS, so I know. I don't even have the will power or physical will power really to go to Doctor upon doctor seeking a diagnosis, ( as if I don;t have enough already ) but individually with my current diagnosis it to me does not explain all of it, I just feel like its more then that.....meaning what I am already diagnosed with, and as you can imagine the compounded symptoms with some same as others, seem more confusing, I should be able to deal with each of these, but it does not explain the balance issues I feel........

I have no balance in DARK, when taking a shower its the worst, any head or neck, or eye movement its much worse, standing STILL is much worse then walking, I do not have the bouncy floaty feeling others describe, mine is a feeling as if my body is swaying and it is !!! I stumble into things, reaching my arms out makes it worse, talking makes it worse, I do not have dizzy feeling when bending over forward, only sideways, in fact I feel best totally bent over, except my dang back and HIPS! Who could walk around bent over all day...........I know this sounds crazy, but it feels worse then crazy, I don't know if anxiety over all adds to it, but lately I can not find normal words, my memory is shot, I have even started to stutter a bit and when I go to say something, I have to THINK first, then say it! I have never been like that.....has anyone ever felt this like I describe with ANXIETY.....oh, my ears ring so loud at times, and always always a faint ringing like florescant light, but it will change to high pitch, suction feeling in ears, wooshing sometimes.........I have 10 symptoms or more any given time of the day or night..............sleeping is a joke, and laying down makes neck spasms and jaw spasms worse, so I never get sleep unless I pass out and then I wake up so many times, by morning, I am so stiff, my entire spine neck and jaws, I stumble to my computer and search for a cure !

HoneyLove
05-05-13, 22:59
Ttff44 I have some similar symptoms to yours, although perhaps not as extreme. I was initially told that I had labyrinthitis, but it turns out I may have chronic migraine associated vertigo instead. I have not seen a neurologist so it has not been officially diagnosed, but my VRT therapist thinks this is a likely diagnosis.

I can give you some links to articles on MAV if you like? Perhaps you could discuss it with you neurologist.

ttff44
06-05-13, 03:46
Is your balance/ disequlibrium pretty much constant though, except for when sitting? I do get sudden whirls where I have to grab something or fall, but those are short and brief, the disequilibrium though never seems to let up ( maybe as far as severity ) but is a constant and standing still, talking, showering, head movement and neck makes it so unbearable.

27 years ago I started having auras, then a migraine, oddly, in my later years, I am 47 now, I do get auras ( visual ) but no headache AFTER, now i do get headaches, some horrific ones, but NO aura before them and it just seems if it was MAV, the disequilibrium would not be constant.

I appreciate your responding so much. Can you give me details of your symptoms compared to mine, it would be so helpful......

HoneyLove
06-05-13, 07:18
Yes with MAV you can have constant balance problems. I'm not sure exactly why this is, my physio did say that this type of migraine can cause damage to the inner ear or it's possible that it overlapped with labyrinthitis which may have damaged the inner ear either. He also said that because of the weakness in your balance system even a small problem like a cold can cause more symptoms.

My current bout of balance issues has been going on since the end of November.

At the moment it feels like I'm constantly drunk, you know that feeling when you're a bit off balance and wobbly. Thankfully this is slowly improving with the VRT, it's much better now than it was a couple of months ago. So I have this constant imbalance but also patches of worse dizziness where I have that feeling you get where you spin around and the lie on the ground, like a spinning sensation in my head but never full on room whirling vertigo. It can be different for everyone.

Sometimes it feels as if my body is rocking, and sometimes it does rock a little bit.

Movement makes it worse, so yes things like moving my neck around (especially looking up or down) will make me feel bad but as times goes on I can tolerate this more. The movement feeling is weird sometimes, it feels like electricity in my brain when I move my head, it's horrible.

My vision is often blurry and lights seem dazzling, especially when I have been active and walking about for a while.

Busy areas with lots of movement are difficult and make me feel worse.

The world bobs up and down as I walk, especially things off in the distance.

Travelling by car/bus/tram or walking about I feel mostly fine, but afterwards I will feel a lot more dizzy. Again this is slowly improving. Sometimes I'll feel a bit nautious during travel, but it's never bad. All of this is basically motion sensitivity.

Sometimes watching movement on TV is difficult, like shows where they're filmed on a handheld camera. Makes me feel awful.

Sometimes it can be difficult to focus on something in front of a busy background.

My hearing can be very sensitive at times, especially when I get dizzier or tired, small sounds seem loud and almost painful, very irritating to my ears.

Reading is difficult but getting better.

Using computers is difficult, this one sucks because I use a computer all the time at work so it's tough going.

Sometimes it feels like my body is vibrating, and a couple of months ago I was often getting a vibrating sensation in my head. In time this is going away.

When I lie down at night I will often feel like my head is spinning, this will calm down but start up again when I turn over. Again this seems to be fading.

I too sometimes get the issue of forgetting words or using the wrong ones, my concentration is often shot and I have really focus to get something done.

I have issues with anxiety because when I start moving everything seems and looks a bit weird, so naturally my body panics a bit. I'm learning to deal with this and not allow the anxiety to escalate since I understand why it's happening.

I often feel nautious first thing in the morning.

Sometimes I get long patches of brain fog where my reflection will seem more real than I do.

Looking at patterns is really weird and disorientating.

Both of my ears ring almost constantly but they get louder when I'm dizzier. I also hear a pulsing sound in one ear sometimes, it's my heartbeat but it sounds like a whooshing noise.

Most mornings now I will wake up feeling OK but after a little while the symptoms come on, especially when I go outside where there is a lot of movement and activity. If I pace myself and take breaks a lot then I can manage it. By the evening time I am absolutely exhausted and all my symptoms are worse. This is normal though.

Different things can all make it worse: bad sleep, illness, anxiety, low blood sugar, at night my reflux acts up and affects my sinuses which make it worse too. I sometimes get bouts of gastritis and this makes it ten times worse again. I've also learned that too much activity without taking proper time for rest and relaxation will also make it worse. I have to pace myself.

The VRT exercises bring on the dizziness, but they are supposed to. Often I will feel worse for the first week of starting a new set of exercises but this dies down and they get easier. I know a lot of people feel that they are not helping or that the exercises are making them worse, but studies have shown that they are of benefit to people with MAV. Some people say that until you have the migraine issue under control there is no point in starting VRT, but I think it's different for everyone and I have definitely found them helpful.

I'm also putting some of the migraine lifestyle measures into place, like no caffeine and few stimulants like sugar, no painkillers, regular bedtimes, lots of water and cutting things out of my diet. I now do daily relaxation practices like meditation and often some yoga too. Once I'm a bit more tolerant of movement I will get more exercise in as that will also help. I'm also learning to deal with the anxiety it brings on by trying to accept the feelings and also accept the dizziness instead of getting frustrated with it - obviosouly this is hard but it's helpful as stress is a big migraine trigger.

When this first happened to me about 6 years ago I was told by my GP that I had labyrinthitis. At the time it took me about 6 weeks to get better but I eventually did. Over the years I got dizzy again sometimes when I got sick or sometimes randomly. I'm not sure what triggered this current phase, but I think it was a combination of things like anxiety/stress, bad posture, TMJ and acid reflux effecting my sleep. (I haven't been diagnosed with TMJ officially either, but I believe I may have it).

I've never had the full blow migraine headache thing. Last year I was getting a lot of what I thought were sinus headaches so I was taking a lot of painkillers and trying to figure out why my sinuses were playing up. It turns out that this may have been a mild form of migraine, apparently it can often be mistaken for sinus headaches. During the worst part in December I would also get really bad dizziness with horrible pressure in my head, feeling nautious and anxious as well as this weird thing where my right arm went all weak. These patches can apparently all be explained with migraine, but at the time I had been told it was something else so didn't even think of migraine.

Back in December it was a lot worse, they told me I had labyrinthitis again but it's become clear that this is not the problem. I'm waiting to see an ENT in August to start the process of getting a proper diagnosis, but I feel that the MAV things suits my story very well. I think I will have to see a neurologist to be diagnosed properly. It has slowly been getting better as I learn to look after myself and continue with VRT and I hope in time that I will recover fully.

Apparently people with MAV are often misdiagnosed with an anxiety problem because it is not often obviously migraine, and sometimes it can just manifest as feeling run down and bad constantly along with anxiety, so naturally our GPs think we are just anxious.

In the last few months I've learned that I am a Highly Sensitive Person and have read a lot about it, it makes a lot of sense to me. I believe that I'm just the kind of person who is easily overstimulated and overwhelmed, and since I have not been dealing with it very well over the years I've ended up in this situation with an overstimulated and unhappy brain & body. So my aim now is to calm everything down again and see if it helps. You might like to read about HSPs to see if it suits you too? It may make some sense. It seems like a lot of HSPs also suffer with migraine.

I think with your neck & TMJ issues it is not that strange that you're having balance problems constantly, they can be tied in with imbalance and migraine. It sounds like you've got a lot of complicated issues that may be upsetting your balance system. Have you been able to talk to anyone who specialises in balance? I imagine that if you can calm down some of those problems that it would help you. Are you the kind of person who is very stressed? As I know that stress can make these issues a lot worse and can also make your balance worse. It sounds like make you have a bit of a vicious circle going on with your health and your stress. Have you any stress relief measures in place in your daily life? And have you tried anything for your arthritis? An anti inflammatory diet can be very helpful for someone with both arthritis and migraine problems, might be worth looking into.

I would also suggest that you begin looking at how to get some decent sleep, as not sleeping will only compound all of your problems. I know it's hard when you feel so unwell, but it's necessary to your physical and mental health. Maybe introduce a relaxation technique before you go to bed, and cut out caffeine for a while. I often do something called progressive relaxation before I sleep, you will probably find some YouTube videos on how to do it if you search for them. Often a hot bath before bed will help you sleep better too. It might be worth learning a bit about mindfulness to help you learn to deal with your chronic problems, so that you can learn to live with them instead of being in the difficult place you are now.

Someone gave me some links to articles written by a UK doc who specialises in this type of migraine, I'll post them here for you to read:

http://www.mvertigo.org/articles/Nicholas_migraine.pdf
http://www.ukfibromyalgia.com/conditions-mistaken-for-fm/migraine.html
http://www.follylane.gpsurgery.net/Webdesk/documents/gpsFollyLane/Photos+and+Documents/chronic_migraine.pdf

This is a great website for inner ear problems:

http://vestibular.org/

And some info on HSPs:

http://www.hsperson.com/

I'm sorry this is long, but I hope it makes things clearer and helps you a little bit.

ttff44
07-05-13, 04:02
Thank you for such a thorough response. I think I may have said 20 some years ago I was dizzy and things seemed to jump up and down, and that was so much better then what I have the last 3 years.

But I have a lot of complicating factors. I also want to say I have not had caffeine in years, I stay away due to my terrible PVC'S.

I will read the links you provided and thank you again for your response and adding those links, it is very thoughtful of you when your dealing with this yourself. I also feel guilty because I am so focused on how bad I feel and how I can't function when I used to be the ROCK of my Family, so guilt on top of the rest, and yes STRESS, Boy do I have that..............

I hope you get a grip on all your troubles too, I can relate well, as can we all here.....you are a wonderful person to share all that with me!

HoneyLove
07-05-13, 14:03
You're welcome, I hope you find some relief for how you're feeling.

Don't feel guilty about being ill, that's not your fault, but you can control how you react to it and it sounds like you really need to do some stress relief work to help you deal with it a bit better. It's essential that you stop focusing so much on your health problems, believe me I know that's hard to do but it's important. It's time to focus now on what action you can take and the positive things about your life, make that your main focus and it will help you to feel a bit better xx

george11
12-09-13, 10:21
Hi i have a dizzy feeling in my head but is not actually dizzy.
It's a bit like a seesaw or wobble feeling like the head is moving but it is not!!
Its like off balance on the head??
I have this feeling every day but not all the time!
Could it be side effects from meds and will it go soon??
Thanks in advance!

HoneyLove
12-09-13, 11:43
I think I know the feeling you mean george, like a rocking sensation in your brain - I know it very well and it's very frustrating.

It can be caused by many different things - you can check with your doctor or pharmacist if it's caused by your medication. Did it only start when you began taking the meds?

I get this sensation from muscle tension in my jaw and neck, it's very unpleasant.

george11
12-09-13, 14:23
It started when i was at the seroxat and now i am on venlafaxine!
I have the same feeling!

george11
13-09-13, 11:05
I went to many ENT doctors before and they said me that i don't have a problem with my ears i don't know....

lavender123
17-12-14, 13:45
I keep feeling giddy and lifeless and so so tired, I think it's anxiety worrying about everything I am going to the hairdressers this morning and I am terrified that I can't cope with putting my head back in the bowl, as it am so off balance and my heart races I think I have gone back to square one with my anxiety disorder, but if am frightened that it's not anxiety somerhing else it feels like somerhing else, I have to the hairdressers as I have let myself go to pot and I am so scared because talking and doing anything drains me I sometimes feel so bad I just cry, and I feel so embarrassed because people don't understand. I am sick of going to the doctors my daughter said to me you can't except people to make you happy, you have to do it yourself I get so much conflicting advice from my children and husband I feel as if I have come to the end of my tether trying to cope with these feelings, I stayed in all day yesterday watching a film trying to relax and chill out but it made no difference, please help. Thankyou.

julia
18-12-14, 12:40
Jules you could be me!!! I'm gobsmacked to see exactly how I feel word for word 3 yrs now and still terrifies me

blondielady
20-12-14, 22:41
I have this feeling sometimes but maybe not as extreme as some on here. I've tried to pay attention to patterns of when it comes and goes and when it seems to be at its worst. My symptoms seem to be mainly an off-balance feeling, but not necessarily a spinning feeling. Sometimes I feel like when I'm lying in bed I have to cock my whole body to one side just to feel stable. Its almost like something inside of me is imbalanced. I notice that everything seems worse when I haven't gotten enough sleep or when it is getting close to bedtime. It almost feels like I'm walking on a boat. I went through a time of really bad anxiety a little over a month ago where everything seemed aggravated... my off balance feelings especially. I'd lay in bed only on my right side because the left side made me feel dizzy. Then when my husband would get into bed and the bed would move a little it would drive me crazy with motion sickness. I started to have a nervous breakdown. I went to my doctor and she immediately said it was anxiety and that she wanted me on medications. I refused because I hate taking meds unless I absolutely MUST. I was at the point where I was afraid to drive on the freeway because I was convinced something bad would happen and I'd get into an accident and die.

Well, its a month later. 2 weeks ago I came down with the flu and had a high fever for days. I panicked worrying that it would go into my ears and make me dizzy. It never did. It was a doozy of a flu too that lasted like 10 days. I spent a lot of time resting and I'd stay in bed till 2PM if I had to just to make sure I was getting 8 hours of sleep somehow. The anxiety actually started to ease up a bit as I forced myself to rest and sleep more. My husband started sleeping in a different room. I found out that his snoring and constant tossing and turning was affecting my sleep and ruining the quality of my sleep. He came back to bed with me the past couple of nights and I've been a lot more irritable from having my sleep quality disrupted so bad. This morning I even felt that familiar panicky feeling and dizziness. I woke up hot and sweaty. I definitely believe this is because my husband woke me up multiple times during the night and I couldn't get into a normal sleep cycle. He may have to go back to sleeping in another room for a while until he ever agrees to see a doctor about possible sleep apnea.

Well anyway, I've been a lot better even though a month ago I swore my life was over, that I was doomed to antidepressants and my bed. My driving anxiety had gotten so bad that even short 10 minute trips around town on a 25mph road would drive me so crazy I'd be shaking and stiff-armed. Then I started looking up anxiety tapping videos on youtube and I did those multiple times per day for about a week. I looked up various forms of meditations and did a bit of that. Eventually I wasn't looking up videos anymore on youtube and I'd learned to self-soothe on my own a bit. The dizziness started to fade quite a bit as I got more sleep and started walking a bit more. Sometimes I try to lay down on my left side just for a little bit because that is the side that I've had the most trouble with being dizzy on. I've found that it helps me to just lay on that side for a few seconds at a time here and there, sometimes a few minutes, just to show myself that I will not die if I lay on that side. There's been a couple of times where I've still felt off-balance and dizzy after laying on that side for several minutes, but I'm persistent with trying. I've come a long way in the past month, farther than I thought I'd be. I drive around town now with no problems and mentally give myself congratulations every time I'm in the car and don't feel panicky. I drove on the freeway 1 hour to another city without having any major freakouts or panic braking. Every time I noticed that I wasn't panicky while driving, I told myself things like "see... no big deal at all.. you've got this... you've always been a great driver!" It really helps.

Oh I also cut some things out of my life that were stressing me out. I was in a choir that took up 2 mornings a week and that should have been fun but it was the thing that put me over the edge in terms of too much going on in my life. Quitting that has been a major stress reliever.

---------- Post added at 21:41 ---------- Previous post was at 21:28 ----------

Forgot to add too that I wonder if there is a hormonal component to the dizziness/off balance thing. I feel more lightheaded right after my periods even though I am not anemic. I used to take birth control for about 2 years and then I went off it this past summer because I felt like it was making me eat a lot and making me fat. I'm also just not a fan of pills. Well when I first went off, nothing happened. Periods kept coming like clockwork. I figured, wow, that was no big deal. Then after several months had gone by was when I noticed things getting weird. I started breaking out like crazy... like acne all over my neck, chest, and shoulders. I have not experienced this since I was a teenager. I've always had a bit of acne on my face here and there, but not all the other body acne. I started getting worse cramps too. Then I'd get spotting every couple of months, and had a period in November that was crazy heavy for the first day. I was never pregnant during any of that time. It is almost like my body is trying to figure out what to do again, like when I was a teenager. I'm 34 so I'm not near menopause, although my mom said her hormones started going crazy around my age so I don't know. Anyway I didn't have these issues when I was on BC. I was on a low dose and I felt absolutely fine and had nice clear skin. It was great. So, yah, it makes me wonder if all my anxiety and weird off balance feelings now are some sort of hormonal freakout.