Hi everybody,

Please could you let me know who else out there feels chronically off balance when they walk about or move.

I can only describe it as a weird feeling that I am not right, like if I stand stock still I feel I am rocking or moving slightly. When I walk I feel a little off - not major so as I look odd or unsteady but enough TO BUG THE LIVING DAYLIGHTS OUT OF ME!!

It can also make me feel a bit lightheaded and dizzy and even faint if the bouncy feeling is there. :bouncing:

I have had the epley done now twice and it has stopped the wierd feelings of motion I had when I was still - thats the wierd thing when I am not walking or standing i feel normal!!

Thanks. Ilia xxxxxxxxxxxxxx

PS SO (praying, fingers crossed, promise to be good and caring for life!) that we all get over this dizzy mess.

Guys I sincerely hope that its NOT JUST ME who feels like this!!

Hi, Ilia!

I feel like that pretty much all the time! When I walk I just have a sense of imbalance pretty much not-stop. Sometimes it is worse than others. I am not so bad that I have to have a cane or hold onto the wall I just feel like my world is topsy-turvy when I am in motion. I feel my best when I am just sitting on my couch with pillows all around me. I feel the motion intensify when I walk into my hallway and I am sure it is because of the closer walls. Especially cause my main living area is a great room with very high ceilings so there is a BIG difference between that room and walking directly into the hallway. But overall it is always there. It certainly wears on me!!! I want to be able to walk normal again! I find myself when I am watching others walk and I can tell they don't have to think about it, just longing to be able to do that again!

Anyway, I know that it will happen someday. I hope it is coming soon! I hope it comes soon for you too! How are you now compared to your first months?

Blessings!

Vicki

Hi, Ilia!

I feel like that pretty much all the time! When I walk I just have a sense of imbalance pretty much not-stop. Sometimes it is worse than others. I am not so bad that I have to have a cane or hold onto the wall I just feel like my world is topsy-turvy when I am in motion. I feel my best when I am just sitting on my couch with pillows all around me. I feel the motion intensify when I walk into my hallway and I am sure it is because of the closer walls. Especially cause my main living area is a great room with very high ceilings so there is a BIG difference between that room and walking directly into the hallway. But overall it is always there. It certainly wears on me!!! I want to be able to walk normal again! I find myself when I am watching others walk and I can tell they don't have to think about it, just longing to be able to do that again!

Anyway, I know that it will happen someday. I hope it is coming soon! I hope it comes soon for you too! How are you now compared to your first months?

Blessings!

Vicki

Hi Vicki,

Thanks so much for you reply!! I am the same as you say topsy turvy in motion couldnt put it better myself!! I also feel better laying down in a semi-reclined position in my bed or on the sofa. I think that this is because our vestibular messages are so off that we are giving lots of spacial information via ourbody which means that we feel amost ok.

Iam sooooo like you that made me laugh and sigh - I too look at others and think gee I wish I could walk straight too and not even THINK about it. I pray to god that happens and sometime soon please.

Like you my symptoms vary in intensity sometimes they feel mild and others quite intense and almost like the floor is moving or is a bouncy castle. Thas what scares me I can never ever tell HOW its going to be. I end up having a run say 10 days of quite mild and manageable I get my hopes up and think ah ha so I am going to get over this. Then WHAM its back to the holy hell level again. No I dont use a cane either - thank goodness.

You ask how its improved. Well this was a major problem when I first got lab's liek so bad that I had to hold onto the walls and all and lean on something and quite often hang onto things for dear life.

But over time I actually had spells when it was almost gone albeit very noticable when tired or by tea time. I have never been 100% better ever since the initial viral attack. I have had this for 2 and a half years now! and to be honest I am no nearer accepting of the symptoms than I was at the start....lol.Its simply the most annoying thing I can imagine. This year i have had the symptoms every day 24/7 and I wish also it would go.

All the medics say it will BUT I am like not so sure!! but I do hope it will. What I cannot understand is that I am young like 29 and have been active etc so why have I not adequately compensated? its a mystery.

I also got BPPV which have had treated with the epley which has reduced the exagerated sensations of movement and the head positional dizzy/woozyness. But its no cure that for sure.

I have a couple questions for you - how long you had this mess? how much have you improved? whats your diagnosis and do they say the same as they do me - it will go!!!!!!!!!!!!

Also does this annoying thing make u feel dizzy and lightheaded do u ever feel like you may pass out but of course never do. i appreciate your feedback!!

Thanks so much,

Ilia xxxx :wave:

Hi, Ilia-

Won't it be nice when we have other things to do other than chatting on the internet about our dizzys!!! But it is sure nice to have others who understand!

This is my fifth month. I had an ear virus 9 1/2 years ago that caused SEVERE spinning and vomiting until I went to the hospital and got a shot. I was pregnant so I didn't go on any medicine (think that was a good thing now). It took some time to get better but it did and did without any ups or downs. The worse part was over in probably two months. It was probably nearly a year before I didn't get any sensation when I would go into Walmart or someplace like that. But at that time I didn't know anything about inner ear things and got better without thinking much about it.

Then last July, almost exactly 9 years later I wake up in the night after turning over on my right side and things were spinning. The spinning didn't last tho' when I would lay still, so I am sure it was BPPV. My husband called my local doctor and he put me on steroids and meclizine 3 times a day for about a month. I really didn't feel as bad the first few weeks as I do now. It just seemed to me like the meclizine was messing me up and when I called the doctor to tell him that, his nurse scolded me for not continuing the meclizine after the I took the first bottle. Anyway, I did manage to take my daughter to Albuquerque in Aug. and had some hard moments but overall did all right. Then after driving home for two days (I was still taking some meclizine, once in awhile for dizziness and a STRONG muscle relaxer) I had a really bad spell and it has been hard ever since. My local doctor sent me to an ENT who diagnosed the BPPV and did the Epley on me several times. I know that it helped even tho' he couldn't get any spinning from me when he did it. The spinning hasn't been as much of a problem as just the imbalance. After the third visit, he told me to relax, I was compensated. HMMM...

Anyway, for the first few months I would experience actual spinning about anytime I would turn my head to the right while lying down and sometimes just leaning my head over to the right. So for several weeks I just decided to quit moving my head unless I had to. That was fun! Find out it was the wrong thing to do, even tho' I do think the crystals did settle down from doing that. But I was in bad shape for awhile. My head was just so full of pressure, ears hurt, imbalanced, when get horrible feelings of malaise and anxiety just sweeping over me. It was awful.

Now, the sweeping anxiety is gone, don't get nauseated too much, still some. Now I just feel imbalanced when I walk and for the last few days have had the racing heart thing. Some fullness in the head and still feel lightheaded and dizzier when I move my head. The only times I have felt like I was going to pass out is when I would have the spells that would cause panic attacks or near panic attacks. That is scary! Do you think that since I still get dizzy sensations when I move my head that I should have the Epley done again?

Anyway, I really wonder if I hadn't been on the meclizine so long and taking so much of it, I might not be this bad. I will never know. My balance therapist in Chicago told me tho' the next time if I ever have a spinning episode in bed to get right up and start the balance exercises and stay off the meclizine. I really think it hinders alot more than we realize. Of course, you have to take it until you can actually get up and around. But I was up the next morning after the initial episode in July. I would certainly have done things differently if I would have known then what I know now.

You have suffered a long time. I feel for you! I think that five months is horrible! I can tell in some ways that it is better but the set backs are so scary and can eliminate all hope in a few moments. I am sorry to say that when I am having the really bad spells I really feel my will to live slipping. That is scary! I am a mother of 4 who loves life, loves the Lord, loves what I do for a living, have a wonderful husband of 27 years. I have every reason to want to live, but this thing just overwhelms me at moments.

You are so young! It does sound like you are alot better then you were! That is good! I can believe that you never get to where you can get used to being like this. I would think that would be impossible. It is too hard and miserable.

Anyway, I tend to write books :) Also, I am at home by myself, my husband is out with the boys and I have some time.

Sure hope you keep getting better! I believe it is coming for you!!!! I believe it is coming for me too!

Blessings!

Vicki

Hi
Ilia what time is your appointment on the 18th, they have spoken about a potential cancellation for me on that day so we may see each other :) well I had another bad attack last night, scary. I had been out Friday night with some friends went to a really really noisy bar and I thought oh this isn't going to be good. Right enough I had to come home early last night, went to bed and woke up at 12.30 with the dizzies, my chest was so tight.. I gave in took a stugeron and eventually fell asleep.. today I feel like I've been out drinking all night, my heart is racing and I am SO tired. Simon warned me I'd have another one or two attacks so I guess he was right! you wonder at menieries as you get this tiredness after an attack does anyone else feel ike that? I was wondering Vicki, at what your therapist had said about doing the exercises.., have you tried, does it not make you feel worse? I am feeling so low today I just want this thing to go..... :( Let me know how you guys are doing..
Sx

Hi, littleone!
Sorry about your spell. I, like you, am just weary and want it just to go away.
I do the exercises that my balance therapist has me do. None of them actually make me feel worse. What makes me feel bad is just trying to get out and do normal things in public. Yesterday I went to the mall with my family and it was SO hard. We drove about 100 miles to get there and it seemed like a long way back home last night.
So, your heart races, too. I have been having trouble with my heart beating fast for about 10 minutes or so since Thanksgiving Day. That day I spent about 8 1/2 hours at my moms. At the end of the day I had a scary flip-flop heart racing episode. And I have had two since then.
Do you ever have any pain in your heart? I had a quick sharp pain this morning. It really scares me.
Hope your bad spell goes quickly!
Take Care!
Vicki

Hi Littleone,

Sorry to hear that you had a bad dizzy spells after you evening out, I know how you feel its rather crushing. You end of thinking oh please NO let me just be normal.

You mention Mienires in your post - thats not whats wrong with you is it? I must have missed that. By an odd co-incidence my cleaner has that but her symptoms are v diff - she gets very intense sudden onset of vertigo attakcs that cause her to fall over and be sick immediately. She cannot function and has to go to bed for the day. She may feel off for the rest of the day but she is 100% normal in betweeb attacks - she has no risidual dizzyness or imbalance. Oh and of course she is deaf (almost now) and has horrendous tinitus. She has been on meds for years nows so never ever has a vertigo attacks - they say its burnt out.

Was simon able to diagnose you at all.

I thnk my appointment is actually in the 12th dec according to a phone message i got from them the other day - so I am confused as I though it was later. Any how i will call and check soooo do ont want to miss that.

I have decided to go to see Proff L Luxon in London. I like S an all. But i feel that he is able to only see us infrequently and said I should be better than I am. It leaves me thinking is it just bppv or also vest dysfunction. Well we'll see.

I know how frustrating this whole thing is. Are you know getting periods of not feeling at all dizzy? Asmy posts say I feel off balance all the time its a v tiresome symptom.

Hope u r ok and look forward to hearing from you.

Hi Vicki,

I just read about your heart racing episodes and it is really horrible. I get that too and have been through the whole cardiologist checks - ENG, echo etc etc.

Showed that whilst yes I do have an irregulat heart rythum at my age its harmless. I have lots of PVC's palpitaions over 8000 in 24 hours. I also get runs of tacacardia where my heart rate has gone to over 199 beats for a run of a few minutes. I honestly did not notice that. Apperently harmlees. He mentioned meds but said the side effects r worse than the symptoms.

It all put my mind at rest alot and I just think oh its nothing which stops the panic a great deal. As it is frighteneing. I tell you when I am really dizzy I also feel my heart race which I assume is an adrenaline response.

If your doctor is not worried then take comfort.

i hope this helps you a bit.

How are the dizzies.

Mine are bad as I have the flu still!! day 5 of it.auurghhhhh.

Ilia xx

Hi Vicki,

Thanks so much for you reply!! I am the same as you say topsy turvy in motion couldnt put it better myself!! I also feel better laying down in a semi-reclined position in my bed or on the sofa. I think that this is because our vestibular messages are so off that we are giving lots of spacial information via ourbody which means that we feel amost ok.

Iam sooooo like you that made me laugh and sigh - I too look at others and think gee I wish I could walk straight too and not even THINK about it. I pray to god that happens and sometime soon please.

Like you my symptoms vary in intensity sometimes they feel mild and others quite intense and almost like the floor is moving or is a bouncy castle. Thas what scares me I can never ever tell HOW its going to be. I end up having a run say 10 days of quite mild and manageable I get my hopes up and think ah ha so I am going to get over this. Then WHAM its back to the holy hell level again. No I dont use a cane either - thank goodness.

You ask how its improved. Well this was a major problem when I first got lab's liek so bad that I had to hold onto the walls and all and lean on something and quite often hang onto things for dear life.

But over time I actually had spells when it was almost gone albeit very noticable when tired or by tea time. I have never been 100% better ever since the initial viral attack. I have had this for 2 and a half years now! and to be honest I am no nearer accepting of the symptoms than I was at the start....lol.Its simply the most annoying thing I can imagine. This year i have had the symptoms every day 24/7 and I wish also it would go.

All the medics say it will BUT I am like not so sure!! but I do hope it will. What I cannot understand is that I am young like 29 and have been active etc so why have I not adequately compensated? its a mystery.

I also got BPPV which have had treated with the epley which has reduced the exagerated sensations of movement and the head positional dizzy/woozyness. But its no cure that for sure.

I have a couple questions for you - how long you had this mess? how much have you improved? whats your diagnosis and do they say the same as they do me - it will go!!!!!!!!!!!!

Also does this annoying thing make u feel dizzy and lightheaded do u ever feel like you may pass out but of course never do. i appreciate your feedback!!

Thanks so much,

Ilia xxxx :wave:


Hi willsmom,

I am so glad i came across your post. You are the first person ever that has the same symptoms as mine "floor moving, bouncy castle feelings". I have been having these for 6 months now with no answers. It is the most horrible feeling in the world and very scary. People do not know how bad it is. My boyfriend has a lot of pain due to back injury but i tell him id take his pain anytime rather than suffer this. I just wanted to ask you what causes you these feelings?? Im sorry if you've already said in your posts, its just that i have terrible concentration with these episodes. I have visited my GP many times and have been on the maximum SERC dose and another kind of tablet for ear disorders but none of these worked. I also had a brain MRI which was fine. I am getting so depressed with these horrible feelings and getting no answers. When i tell my doctor i feel as though the floor is moving or like a bouncy castle they look at me as if im stupid. I was beginning to feel like im the only person in the world with this. Is it possible to have an ear disorder and not know about it?? i believe the brain mri checked my ears too. Any advice from anyone would be much appreciated. I just cant go on with these horrible feelings. People just expect me just to get on with it, but it makes me scared to go out. thanks.

Hi, Ilia!
So sorry that you are sick with the flu! 5 days! So far I haven't had any colds or flu since I have been dizzy. I am not looking for the day when that happens. I keep thinking that maybe I can get to a point where I will be pretty far along in this and the flu or cold won't affect me as bad.

Did your heart ever have pains? I dared to go out and go to the mall yesterday with my family and it was really tough. But I wanted to go with my 19 year old son cause I don't get him too often to myself since he is totally enthralled with his girl! :) It was a very special day and I would still do it again, even tho' it made me feel terrible.

Anyway, my heart started beating fast in the night. First I woke up feeling cold and then my heart started racing and then I got hot. It lasted for about 15 minutes. Then when I woke up this morning and turned over I felt a quick pain in my left side where my heart is. Do you ever have heart pain? Anyway, I am not too worried about my heart. I am sure all this trouble is from my inner ear. Especially when I get in a big mall FULL of people and STUFF and my head feels SO weird!

Lyndsay! It sure sounds like you have an inner ear disorder cause that is just how it makes you feel. Look at the information that Subs puts on the posts and he is good about directing you to information that helps you understand inner ear disorders. Even tho' there is alot of information, it is still an area where MUCH is unknown! Everyone says a neuro-tologist is the one to see as they specialize in the inner ear. If you can locate one, it would be a good one to see. Most of the dizzy people have been to their own general doctor, ENTs, neurologists and some to neuro-otologists. Most have had the major tests done. I have only had my ears tested which came out fine.

Do you have any other symptoms besides the moving, bouncy floor?

Hang in there, we all know what you are talking about, there is hope!!! Even tho' there are days that don't seem like it. Once you begin to kind of figure out what is going on, you will begin to find some things that will help. It took me several months of probing to find out the things I actually should and shouldn't be doing. And everyone is different, but all of us do share alot of the same symptoms.

You are not alone, Lyndsay. Talk to us, ask questions. Everyone here is SO good about helping and encouraging!

Blessings!

Vicki

Hi, Ilia!
So sorry that you are sick with the flu! 5 days! So far I haven't had any colds or flu since I have been dizzy. I am not looking for the day when that happens. I keep thinking that maybe I can get to a point where I will be pretty far along in this and the flu or cold won't affect me as bad.

Did your heart ever have pains? I dared to go out and go to the mall yesterday with my family and it was really tough. But I wanted to go with my 19 year old son cause I don't get him too often to myself since he is totally enthralled with his girl! :) It was a very special day and I would still do it again, even tho' it made me feel terrible.

Anyway, my heart started beating fast in the night. First I woke up feeling cold and then my heart started racing and then I got hot. It lasted for about 15 minutes. Then when I woke up this morning and turned over I felt a quick pain in my left side where my heart is. Do you ever have heart pain? Anyway, I am not too worried about my heart. I am sure all this trouble is from my inner ear. Especially when I get in a big mall FULL of people and STUFF and my head feels SO weird!

Lyndsay! It sure sounds like you have an inner ear disorder cause that is just how it makes you feel. Look at the information that Subs puts on the posts and he is good about directing you to information that helps you understand inner ear disorders. Even tho' there is alot of information, it is still an area where MUCH is unknown! Everyone says a neuro-tologist is the one to see as they specialize in the inner ear. If you can locate one, it would be a good one to see. Most of the dizzy people have been to their own general doctor, ENTs, neurologists and some to neuro-otologists. Most have had the major tests done. I have only had my ears tested which came out fine.

Do you have any other symptoms besides the moving, bouncy floor?

Hang in there, we all know what you are talking about, there is hope!!! Even tho' there are days that don't seem like it. Once you begin to kind of figure out what is going on, you will begin to find some things that will help. It took me several months of probing to find out the things I actually should and shouldn't be doing. And everyone is different, but all of us do share alot of the same symptoms.

You are not alone, Lyndsay. Talk to us, ask questions. Everyone here is SO good about helping and encouraging!

Blessings!

Vicki
:) Hi vicki thanks for answering my post so quick, it really is nice to know that im not alone, u all sound like really great people. You asked if i had any other symptoms besides the floor moving sensations, well all i can think of is i get total brain fog along with these episodes. Its like i cant think and i just stare into space. Maybe its a neck problem, i dunno since my neck seems tight and uncomfortable. All i know is i need some answers. Thank you once again for your kind words. Take care. Lyndsay

Hey Ilia and Vicki

its so tough isn't it. Ilia I don't believe I have menieries just clutching at straws! I've had such a bad pain in my head for the last 48 hours, no headache tablets are shifting. It's funny I saw this guy on Saturday who is an optician but deals in vision therapy. He did some real crude tests and believes I have a problem with my eyes which may or may not be linked to the vestibular problem. He asked why I hadn't been refered to a neurologist, I was like, well you tell me! I am seeing him Thursday where he is going to do some more tests and see if he comes to any conclusion. I know my MRI was clear but I just can't help worrying that something terrible is going to happen, stupid isn't it. Poor you the flu is the worst, I've been lucky this year nothing major so far (touching wood as I type). So who is Prof Luxon?

Sending dizzy free thoughts to you all!

Sx

Hey Ilia and Vicki

its so tough isn't it. Ilia I don't believe I have menieries just clutching at straws! I've had such a bad pain in my head for the last 48 hours, no headache tablets are shifting. It's funny I saw this guy on Saturday who is an optician but deals in vision therapy. He did some real crude tests and believes I have a problem with my eyes which may or may not be linked to the vestibular problem. He asked why I hadn't been refered to a neurologist, I was like, well you tell me! I am seeing him Thursday where he is going to do some more tests and see if he comes to any conclusion. I know my MRI was clear but I just can't help worrying that something terrible is going to happen, stupid isn't it. Poor you the flu is the worst, I've been lucky this year nothing major so far (touching wood as I type). So who is Prof Luxon?

Sending dizzy free thoughts to you all!

Sx
:wave: Hi there, just wondering where in scotland you are

:wave: Hi there, just wondering where in scotland you are

Hi everybody,

Tonight been busy with this posting - huh.

Ok so -

Lyndsay - welcome to the boards!! we try to be a friendly bunch. :wave:

One thing is for sure you are in good company with your symptoms! Are you at all dizzy or light headed with your symptoms? Since the meds have not helped you ask for a referal to an ENT and they can investigate your symptoms in terms of an inner ear problem. You say that you have tried meds to no avail and thats a very common theme it seems. Can you try to describe all that you feel in as much detail as possible and I can see if its similiar to me. Emma on these boards also has the same problem and there are others. We are all here for you so dont despair. You say that you experience these feelings as spells......ours unfortunately are not they are constant just ranging in severity.
Oh I am in the North of Scotland quite close to Aberdeen - u?

Littleone

Its really odd that you talk about your eyes - you know I see things bounce and move around I have been asking my self something similiar. Let me know how your visit goes. Its a good point about the neurologist. I think when they see the MRI is clear that avenue evapourates but I have yet to hear of a good diagnosis from that route - oh well I think Lorr (Brina) sees one so you could ask her what she thinks. I know what you mean I take it that you like me have said to Simon - are you sure that this is not terminal, I will get better etc, when, why etc bla bla bla and he says oh Yes I have never seen a balance patient die form a balance issue...right? Proff L Luxon is a neurotologist in London. Its is my understanding that she is a neurologist but also otologist who specialises in all types of dizzy/balance disorders. I am paying to see her but I know as I have spoken to her that she accepts NHS referals from areas outwith London. By all the searches I have done there are only neuroto's in the UK her and another who is not accepting any new referals. How are ya symptoms - can you share them with me. take care - chin up I know how rubbish this is.

Vicki

Thanks for you reply too!! This whole thing just drives me round the twist I just feel so awful when i walk. Can I ask you this - when you walk doe sit actually look like the enviroment is bouncing a bit - i mean visually its weird I get that.

To answer your question about heart pains - well not really - but yes I have done - if anything I get a tight feeling of pressure. But I knwo I have had the pains and thought ahhhhh angina.......lol.

I am intersted in all the other symptoms you have - its a weird old disorder and hard to work out exactly what the diagnosis is....lol.

U take care.

Love to you all,

Ilia xx

Hey, Lyndsay! Did you have any certain symptoms initially? Did you have actual spinning or anything like that?

Hi, Ilia!

All my symptoms right now are:

imbalance-feeling of being off center, some times worse than others

feeling of pressure in my head that is worse when I move my head in different directions or when I am in a difficult setting (visually)

neck stiffness, TMJ symptoms (face pain, earaches, headaches from the back of my head to the front of my face, jumpy eyes, nausea (on and off), feeling of movement when I go to bed (I have my husband hold me close to him until I get to sleep to steady me), depression, feelings of anxiety

That pretty much covers what I am experiencing right now!

Hope your day has been good.

Have you ever had any 100% days yet? I haven't. I have had some 100% moments but they are short. I am counting on them getting longer!

Blessings!

Vicki

I forgot to mention that I really think that alot of my problems with compensation are with my eyes. My balance therapist told me that my glasses were suspect since I had them only 3 months before I had my initial attack of vertigo. I have funky eyes and my new glasses just throw me. Anyway, I took Subs advice and my balance therapist agreed to see a neuro-optometrist. I am going in December and the other eye doctor there told me that he will test my eyes completely and will be able to pinpoint anything that may be wrong. She said that a regular optometrist just isn't able to do that extensive testing.

I really think that getting my glasses corrected is going to help alot. Subs said when he got his glasses right the compensation went alot faster.

Just thought I should mention that since you were talking about your vision!

Vicki

Hey Vicki

yes I found an optometrist who deals in vision problems using a more unconventional approach. He is going to do a batch of tests Thursday but he too thought I should have been referred to a neuro type person. I too feel if I could just get my eyes sorted I'd be more than half way there. The trouble is now convincing my doctor who thinks I'm a bit of a hypo anyway to get a referral.. why does it all have to be so difficult!

Illia, that sounds great, are you going to fly down though? wish we had someone like this in Scotland. I know S keeps saying I will recover but its like uh when?? I am now getting to the angry/frustrated stage of I'll do anything to make this go away. It doesn't make sense how you can have a few good days and then wham it comes back with a vengeance.

Lyndsey, welcome, I live in Aberdeen. How long have you been suffering for? I hope you'll find this group a real support to you, as it has been to all of us.

Sherylx

Hey Vicki

yes I found an optometrist who deals in vision problems using a more unconventional approach. He is going to do a batch of tests Thursday but he too thought I should have been referred to a neuro type person. I too feel if I could just get my eyes sorted I'd be more than half way there. The trouble is now convincing my doctor who thinks I'm a bit of a hypo anyway to get a referral.. why does it all have to be so difficult!

Illia, that sounds great, are you going to fly down though? wish we had someone like this in Scotland. I know S keeps saying I will recover but its like uh when?? I am now getting to the angry/frustrated stage of I'll do anything to make this go away. It doesn't make sense how you can have a few good days and then wham it comes back with a vengeance.

Lyndsey, welcome, I live in Aberdeen. How long have you been suffering for? I hope you'll find this group a real support to you, as it has been to all of us.

Sherylx

Hi thank you all for your concern, you are lovely people and you all dunno how good it has been to find people like you. Some of your symptoms match to mine and others dont. I never have had the spinning sensation. I take it this is vetigo. My dad suffers from that takes a tablet then is ok. My diziness is more an imbalance like the floor moving, like ive said. Ive had this for about 6 months now. All i can remember it starting off with was like a total pressure in my head and my ears popping, with mega bad diziness, like my eyes werent getting messages to the brain the way they should. then gradually the floor started to move.. No kidding, when i told the doctor, they look at me as if im a nut case. they said they dont know what causes this and have referred me to a neurologist. Ive read on some posts that some people mention about going into shops and getting funny feelings, well i do too. Every time i go into asda, the lights, and just all the aisles of stuff really do something to my head and eyes. Ive had my eyes checked twice and they are alys fine. I believe the brain, neck and ears control balance. I know my brain and ears are fine. so maybe its my neck, but then the eyes have a lot to do with it too dont they??

I should also say that when i get off a bus that has been moving i experience the bobbing up and down much worse, i know that sounds daft but thats the way this stupid thing i have works.

Im only 24 and am now in a total depression because of this. It stops me getting on with normal life, only place i feel safe is home, but i AM NOT going to let this beat me. I do try and get out and about much as i can. Im even thinking about going to a chiropractor just to see if they can help, who knows? will try anything. Im sure u all would rather something other than this horrible feeling. id rather give birth 5 times over if someone gave me an ultimatum LOL!!!

I hope all of u are well and im sorry this is so long. Thanks for listening :wave:

Lyndsay

Oh bye the way, im in Ayrshire. not far from glasgow. Never been to Aberdeen but heard its great for nightlife :) xx

Hey Lyndsay

I know exactly how you are feeling, mine is the same I don't have any spinning type symptoms but just a weird sensation and funnily enough when I got to asda too I have the exact same symptoms. I tried to explain it to my doctor and he thinks I'm mad :) I have been having bad attacks since Friday, had the doctor out again last night and he experinced first hand the tremors. He thinks he knows what might be wrong(hasn't shared that with me yet) but is going to talk to my registered GP and see if they can get me a referral someplace. Today is kind of scary, I feel really frightened and sick something bad is going on. Normally at home I feel safe but today I just want someone to get rid of this thing. Keep your chin up I'm in exactly the same place as you. I had an illnesss up until I was 24 when I went into remission and now at 31 I have this thing. I think to have this at any age is awful but if you are anything like me I'm usually constantly on the go, out and about and now I can't do that anymore. I'm working today just out of sheer stubborness cos I don't want this thing to beat me..mind you alternating between my bed and the computer! It's definitely an eye thing though, as the eye sensors are apparently right next to the balance mechanism. Ayrshire,, hmmm, I had a friend who lived in West Kilbride so spent many a time down your way :)

Here for you if you need us.

Sx

Hi Littleone,

I must have piscked up teh wrong end of the stick some where along the line. I thought you did have spinning - I dont either!! I guess i just picked you up some where along the line. Let us know how you get on at the eye check on thursday if nothing comes of it then at least you have had it checked.

I know that my eyes have never been quite the same since this whole vestibular thing started but I keep getting told that its the inner ear thing - which I believe as thats when its started!

Can I ask you what it feels like when you feel awful - these episode that you describe?

I smiled when you said your doctor looked at you like 'what'! and think you are a bit hypo! I KNOW the feeling! BUT gee who in their right mind woould feel all these gross feelings and not be HYPO! I cannot imagine.

Sounds like you have had a tough time lately! with your original illness and then this. Its a big pain and can really effect your spirits. BUT you sound like a very determined lady and thats the main thing you just have to keep on plodding.

I think we can all take heart form the fact that over time this will fade and improve! I really believe that - but like you am like WELL WHEN!!

Hope to catch you soon, Ilia x

Hey Vicki,

Well our symptoms sound very alike - they are horrid aren't they! what you describe is pretty much how I feel. Do I ever have any times when I feel 100% - nope not really.

Its weird when i stand still in bare feet I get a sensation through my feet like I am bobbing up and down or moving around - I am not of course but you wind up with the impression that the ground is not still.

As for the head feeling - thats odd you mention that. As I do get that as well. Its like a weird FUZZY sensation IN my head in the forehead area and sometimes behind the eyes. I have NO clue what this is but I know its the vestibular rubbish as that when i started with it. Yep like you its worse with head movement.

Do you feel any better when you sit up in your bed or sit on the sofa? those are the only times I feel a bit better.

Do you ever got faint feelings? I seem to get this when I walk and i am all sort of bouncy and the enviroment seems bouncy - its like walking on a very soft matress!! I think this scares me the most.

Have you a diagnsois as such?

Lyndsay

I am thinking how do they know that its NOT an inner ear problem? have you been to an ENT and had any tests done. That comment you made about after you get off the bus you feel worse is classic - me too - any kind of motion like that makes me feel worse afterwards.

Good Luck

Look forward to hearing from you soon,

Ilia x

Hi Lyndsay - I am also 24 and from the UK. I must say I think your prob is inner ear - as Ilia said, the moving bus thing and supermarket thing is classic. I would demand to see an ENT if you havent already.

Meet us on [removed] if you like - I have been bad and not been on for a while but should be on the weekend. It helps to talk all this through. xxx

Hi, Ilia!

It sounds like we suffer from alot of the same things. I usually am in stocking feet around the house. In the winter I like to wear slippers. The ones I usually wear are very cushy, like walking on a pillow. The first time I wore them, about an hour and a half after I had them on I got to feeling SO dizzy. I realized the slippers were the culprit. So, I took them off and got feeling better after a little while. So I bought some slippers that are for outside or inside and they have a hard sole like regular shoes. I am very happy with them. I actually feel like I feel a little steadier when I am walking with them around the house.

I never feel like I am going to faint unless I am having a panic attack. I haven't had many, but sure can be scary!

There are moments when I feel normal, but they are very short-lived. I am hoping for more and more. I also feel best just sitting on the couch or laying on all four couch pillows on my side where my head is way up. I am also for the most part sleeping really well now and that is a blessing.

My diagnosis is BPPV. That is all that has been determined and I was told for sure that I do not have menieres which I believe is correct. It was thought that I had a virus when this all started but I don't think it was then. I go back to the ear virus I had nine years ago.

I read somewhere that the manuevers for BPPV sometimes need to be in different positions cause the crystals get stuck. Sometimes I wonder if the ones of us who actually have BPPV are having trouble with funky crystals that aren't cooperating?

Just a thought. Always trying to figure this thing out! :confused:

Hope you have a good day!

Blessings!

Vicki

Hi Illia, Emsybobs, Lyndsay, i'm gonna be around this weekend, what kind of time do you log on and are your logs on in messanger same as post names here? I'm trying to follow advice and do my exercises as soon as I feel bad, hmm , don't notice much improvement but I'll keep banging away. Illia, I have never had a spinning sensation.. Looking back what I did have long before this attack came was the feeling of sitting in a car and the car moving even when we were stationery. I feel it behind my eyes, and in my head, I call them brain lurches, to me that makes sense, to my doctor I sound screwy lol... Like yesterday in the dr's surgery there were loads of people and I just started to feel my eyes go, then feel faint and the shakes started and I had to go lie down. The doctor's still cite Anxiety, em no.. I got prescribed some new tablets to help with these tremor things and they seem to be having a small impact which is pretty good. Hands are still a little shaky and my legs feel like jelly. I feel like I have a fuzzy head as though I've been out drinking all night, you know that weird feeling.. horrible horrible, if I could just get my eyes stabilised I think it would be a lot better..

Sx

Hi Illia, Emsybobs, Lyndsay, i'm gonna be around this weekend, what kind of time do you log on and are your logs on in messanger same as post names here? I'm trying to follow advice and do my exercises as soon as I feel bad, hmm , don't notice much improvement but I'll keep banging away. Illia, I have never had a spinning sensation.. Looking back what I did have long before this attack came was the feeling of sitting in a car and the car moving even when we were stationery. I feel it behind my eyes, and in my head, I call them brain lurches, to me that makes sense, to my doctor I sound screwy lol... Like yesterday in the dr's surgery there were loads of people and I just started to feel my eyes go, then feel faint and the shakes started and I had to go lie down. The doctor's still cite Anxiety, em no.. I got prescribed some new tablets to help with these tremor things and they seem to be having a small impact which is pretty good. Hands are still a little shaky and my legs feel like jelly. I feel like I have a fuzzy head as though I've been out drinking all night, you know that weird feeling.. horrible horrible, if I could just get my eyes stabilised I think it would be a lot better..

Sx

Hi Littleone,

Gosh I know what you mean!! I get this vile feeling behind my forehead too it feels like a fizzy fuzzy feeling that makes me feel dizzy. I feel off when I walk around too - like i am listing all over the place when I stand still but I look normal.

What tests did Simon do? did they show anything?

Geeze our symptoms sound alike as well!! does it effect your sense of balance?

Hi everybody,

Please could you let me know who else out there feels chronically off balance when they walk about or move.

I can only describe it as a weird feeling that I am not right, like if I stand stock still I feel I am rocking or moving slightly. When I walk I feel a little off - not major so as I look odd or unsteady but enough TO BUG THE LIVING DAYLIGHTS OUT OF ME!!

It can also make me feel a bit lightheaded and dizzy and even faint if the bouncy feeling is there. :bouncing:

I have had the epley done now twice and it has stopped the wierd feelings of motion I had when I was still - thats the wierd thing when I am not walking or standing i feel normal!!

Thanks. Ilia xxxxxxxxxxxxxx

PS SO (praying, fingers crossed, promise to be good and caring for life!) that we all get over this dizzy mess.

Hi:
Just wanted to jump on this board and let you know that I am a fellow "dizzy"! I have had vertigo now for about 30 years. It started after the birth of my first child and has gotten worse each year. I hate to tell you how many doctors/specialists/etc...that I have been too and how many times I have had hot/cold water-air blown in my ears, room darkened, spins on the wall to be counted, questions asked while they are making me dizzy, etc....and all they have been able to tell me is that I have a disease of the middle ear. Nothing can be done. But Ihave been watching and journaling things that I eat, the weather, the way I feel, how my days go etc...cause I really think that with me it is a combination of different things that bring on the attacks. When I have one (a bad one) there is usually vomiting, and horrible pressure. Then I am down in bed for about a week. I never know when I am going to get them. So even though days/weeks may go without, you are freightened because you never are sure when the next one will be. But I have pretty much learned to live with it. Very difficult at times because it stops me from doing a lot of things that I would love to do. Walking is one of them. I constantly walk to the right. It is difficult for me to take a normal stoll down the street. My husband gets upset at times with me because I don't do a lot of walkiing but unless you have experienced the balance issues, it is really hard to understand the fear that you go thur. I also get myself off ballance in the middle of the night. I think it is because the fluid in our ears is on one side or the other, depending on which side we sleep and when wwe get up quickly, it does not have a chance to equalize first before we move. That will throw us off. all in all it is really the pits, but I guess we can be happy that we do not have anything more major. Just know that you are certainly now alone out there in "dizzy world".....in fact there is an entire web site dedicated to vertigo/dizzy/meniners disease. YOu read there site and you feel pretty blessed to only have what we have, even though it is a real pain to have to put up with this. As long as you have all the tests that they give you, you can feel good knowing there is nothing real serious. Cut out SALT!!! Watch your stress level and try and eat healthy (if you don't already), and try and get excerise when you feel as if you can. Take care....

Hi Illia, Emsybobs, Lyndsay, i'm gonna be around this weekend, what kind of time do you log on and are your logs on in messanger same as post names here? I'm trying to follow advice and do my exercises as soon as I feel bad, hmm , don't notice much improvement but I'll keep banging away. Illia, I have never had a spinning sensation.. Looking back what I did have long before this attack came was the feeling of sitting in a car and the car moving even when we were stationery. I feel it behind my eyes, and in my head, I call them brain lurches, to me that makes sense, to my doctor I sound screwy lol... Like yesterday in the dr's surgery there were loads of people and I just started to feel my eyes go, then feel faint and the shakes started and I had to go lie down. The doctor's still cite Anxiety, em no.. I got prescribed some new tablets to help with these tremor things and they seem to be having a small impact which is pretty good. Hands are still a little shaky and my legs feel like jelly. I feel like I have a fuzzy head as though I've been out drinking all night, you know that weird feeling.. horrible horrible, if I could just get my eyes stabilised I think it would be a lot better..

Sx
:) Hi everyone. Im just totally gobsmacked at everyones posts. I just cant believe what im reading. I thought i was going insane. I am so close to tears right now since its just so good to know that other people have it (although i wish u all didnt) and that im not the only one. The doctor thinks im a hypochondriac and im not. Never had a day ill in my life until nearly a year ago.

Emsy, im not sure if its an ear thing or not. The doctor said if it was ear related the tablets i had would have worked. They didnt even touch it. I had 2 different types. One being Serc. My doctor just fobbs me off now whenever i go, told me my brain mri was clear and that its nothing to worry about and to go enjoy life. The best diagnosis he came up with was that i had a virus at the beginning of the year and its affected my nervous system. To me that is just crap.

Its just so strange how this hit *BANG* JUST LIKE THAT. i was normal for a till a year ago. I had to give up a nursing course i loved because of this, since it would happen at college and i would have to go home, those were in the early days though when i couldnt deal with the imbalance thing but now its just part of my life and i couldnt imagine living without it lol!!!

Today seems to be a good day for me ( touch wood) i managed to get my daughter to school without me bobbing all the way there!!! It really tires your eyes out doesnt it??? so annoying. The worst time for me aswell is when im going up stairs...GOD!!! its crazy, feels like im bouncing up them, my whole body goes with every step!! I also have a wooden floor in my living room, well you can imagine that!! it moves slightly already but to have a balance issue on top of a moving floor is no fun!

Its just strange how i have a week of normal life then come the next week, the bouncing is back, my eyes are funny, the brain fog is there, and i cant go near asda and spend my time lying down. Im gonna shut up now cos im going on forever. Im just so relieved to have found u all, like i said i was nearly crying at the beginning cos i just couldnt believe it. I wish you all well today and hope it is a good day for you all. We're much too young to be suffering like this!! :rolleyes:

Littleone, is it [removed] you are talking about?? I'll need to get that set up, ive only got [removed]. My computer is on 24 7 so im always here. For any of you have [removed] my username is [removed]