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  Hey Brina,Fighter, Emys,SBoily & You All!!

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Author Topic:   Hey Brina,Fighter, Emys,SBoily & You All!! | Page views:
willsmom
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From:Britian
Registered: Sep 2003

posted 10-02-2003 02:52 PM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Running outa space - new thread - lets hear it then - how are ya? xxx

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brina
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posted 10-03-2003 03:51 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi ilia,fighter,sboily,emsy and all

feeling real yuck today, during the night having the positional vertigo, every time i turn over , slow spin, building up quicker thenslows down again....getting up was to scary like walking in the crooked house x 20, its wearing off a bit now, but i feeling nausea, and very very tired what a mixture..
havent had the bppv for quite a long time...
couldnt get onn the computer last night , to much competition from dd she loves it, she is using the mike so when u can sort your mike we can talk......

dont know how today will progress, the spiny alwys makes me anxious..... let me know how u are... i ll try the messenger if i can do it, my spellings will be attrocious......

hope u r having a free time

best wishes
luv

lorr

xx

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willsmom
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posted 10-03-2003 04:21 AM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hey Lorr, Em and Fighter & Dizzies,

Lorr
See what I mean!! This darn dizzy thing changes course a little just when you think things are improving!! Do not dispair it will wear off again. I have soo been there and done thats. But it never fails to make me feel anxious!

Why do you call your vrt dept. I am sure that they will do the epley for ya - heck you could give it a try cause its a misery feeling that way.

I am thinkin of you - cause I know how miserable it is . But as you know you have felt a whole bunch better before so you will again.

Em
I wonder if there is a bppv element to your symptoms - apparently bppv does not just make you feel dizzy now and again it gives rise to all the symptoms we have 24/7. What do u think?

I spoke to the vrt chap yesturday on the phone - went over ALL my symptoms again.....lol......for reasurance really. He was like thats great theat the epley helped and he was confident that we would do another epley next week - he said he thought he new were the crystals were. Apparently the crystals can get trapped into different canals (not just one) owuhhhhhhhhh. Any how he said all my symptoms were risidual symptoms and will lift. Yippee - but its like NOW would be good.

You know I can hardly remeber whats its like to feel free.......honestly.....weird.

One of the most buggin things with this type of problem is that you have no clue as to when its gonna be bad and when its gonna be easier to cope with. I find that annoying cause its hard to plan much.

I tell you the main thing that has improved for me since havin the epley - its the imbalance that feels alot less severe and unplaesant. Also I can look up without feelin real dizzy and I can stand for much longer. But I still find it unpleasant to say in converstaion to hold my head turned, or when I look at objects they still seem to shift no matter how hard I try to steady my gaze, but the room in general seems still, the feelin of self motion has also settled greatly - perhaps why the balance generally feels better. But I still have the very unpleasant feelin that the sensations of movement do not match what I have done.....hard to explain. Sometimes when I have bent over and stood up I then feel like I am bending over again...ouhghhhhhh.....what am I like!! Its weird I find when I am at a road junction I hate havin to look left and right and left again - not so much dizzy just unplaesant.

Oh asked about the fizzy/buzzin/moving feelin in my head and again typical of vestibular upset as with the bouncin object and all.

Heck what a blether (scots term meaning shes talkin and talkin and talking......lol). So guys hope you are ok - sooooo lookin forward to when this is but a memeory.

xxxxxxxxxxxxx

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Emsybobs
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posted 10-03-2003 10:12 AM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi Ilia, Lorr, Sara, Fighter and ALL!

Firstly, was so nice to talk to you Ilia, gosh it made me feel so much more uplifted...Just to know I am not alone!!!!

Sorry about the messenger mess last night, was on the phone for far longer than I expected and then tried to log on and couldnt and then finally did but you werent there (it was too late). May be on later but if I am, will be early eve as opposed to late, I think I am nipping to a friend's house...I prob wont be able to go on every night as worried about cost (not sure if it is free for us). Have no job so cant pay for it etc!

I also wonder a lot about BPPV Ilia, will mention to hopefully the London hospital if I get there. Have GP appntment on Mon - wish me luck! Oh also Ilia, got test back it was negative if you get my crypticness, so must have same as you had....WEIRD.

Dizzies ever so slightly better but still rocking. Going to osteopathy Mon, should hopefully help....

Also cant remember what it feel like to be dizzy free, honestly can't. Does anyone else feel as if you are not reall here, v surreal and like you are just v v v v v drunk!

Oh to be dizzy free............ and bouncing free.........

Thanks all of you, you are all the best

Emsy xxx

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brina
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posted 10-03-2003 02:02 PM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi ilia, emsy all

emsy hope u get on at the docs and london hosp.

ilia, u had a bad day too......
had to cut short our chat
but i really know hwat u were saying about these symptoms......
how did will get on at the hosp today
now the kids r home for the w/e it gets so busy

thinking of u and everyone here with the dizzies

luv
lorr

xx

[This message has been edited by brina (edited 10-03-2003).]

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willsmom
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posted 10-07-2003 05:53 PM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hey Lorr

real quick post - how are your dizzies - I know u had a bad patch. Mine are well...the usual...lol.

Going to the hospital tommorrow so will post as to how that goes. Will is fussin (as well as dh so gotta run)...lol.

Hope u r ok.

xxxxxxxxx

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sdree
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From:Hull, Québec, Canada
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posted 10-08-2003 02:52 PM     Click Here to See the Profile for sdree     Edit/Delete Message   Reply w/Quote
Hi Brina and everyone else!

I'm sorry to see you're going through a rough patch. But you know, keep in mind that as quickly as the vertigo appears, it can also disappear. You will get through this.

I myself had a horrible week last week, extremely dizzy and faint but this week things are better, a real rollercoaster!!!

I am going to see the ENT on Tuesday to find out about my ENG results. I can't wait. I want to fail that exam SOOOO bad!!!! It would be so reassuring to know that this is JUST inner ear.

Will keep you in my thoughts. Let me know how you are doing.

Sarah

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brina
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posted 10-09-2003 12:15 PM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi checking

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willsmom
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posted 10-09-2003 03:27 PM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hey all

Sdree - let us know how u go with the eng test - its funny isn't wanting to actually fail something. I was reading about that test and it says that its possible for it to show clear as it only recreates the equivilant to slow head movements - so some peoples vestibular problems will not show up. Any how another test is called the posturograph - which basically measures balance and propreoception (ooh not spelt that that but u know what I mean) any how that is excellent at showing a vestibular problem. After 2 and a half years of this wonderful dizzy thing I finally had that test which showed it to be vestibular and not central - of course I had an mri over 2 years ago but as it did not go away I was kinda wondering....

Any how that is just a thought.

Welcome to the thread!!

Fighter, Emsy, Brina and Sarah

Hope you guys are ok - lets hear how you are doing!!

friend!! xxxxxxx

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Emsybobs
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posted 10-09-2003 06:03 PM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi Brina, Ilia, Fighter, Sarah, Hbep, Subs etc...

Hope you are all ok. Ilia, hope you are feeling a bit better today after the Epley. Thanks for phoning yest. I have had the letter today saying my MRI is in 2 weeks! Much quicker than I thought - may as well have it done but the leaflet is scary - apparently you cant even wear mascara! I cant live without mascara so this will be difficult for me! lol...

As I said on the text, the show last night made me v v v dizzy, got back and cried a bit! Sheer frustration and wanting to feel normal...seems out of reach at the mo! Been for meal tonight with friends, felt v rough also, not so bad now I'm home and away from lots of people moving about and dim lighting!

Keep meaning to go on yahoo and will...I am just so knackered at the mo, think its the VRT! Could sleep for England!

Sarah - know just what you mean about wanting to fail the ENG...

Ilia - gonna ask for a Posturograph...they sound much morwe reliable than ENG's really. Subs/Hbep - do you know anything about these?

Feeling v dizzy and motion sick, must dash

Bye xxxxxxxxx

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Subs30
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posted 10-09-2003 06:14 PM     Click Here to See the Profile for Subs30     Edit/Delete Message   Reply w/Quote
Emsybobs

....."Could sleep for England!".....


Like that---Emsybobs---sorry you not feeling better---but glad your out and about---in getting to the bottom/tests done.....

......."Subs/Hbep - do you know anything about these?"......"Posturograph".....

Yep:

."MOVING PLATFORM POSTUROGAPHY TESTING"...

go here:

http://www.dizziness-and-balance.com/testing/posturography.html


Sure Hbep---can add more---I never took one---think she might have.....


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brina
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posted 10-10-2003 04:50 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi all,

sdree, thank u for your kind words and thoughts i hope all your tests work out for the best......
for all the years ive had vertigo and complained to the gp, they really dont want to know about referals, and finding out where the problem lies......i am still waiting to hear about my mri appointment and i was told i was to have it done in early june....
emsy u have done really well to get your appoint. for mri , as u say u r suprised to get one quite soon.
can u tell me some more about what the letter says, per what u cannot have? can u wear ear plugs for instance?
ilia, u see what competition i have with yahoo in he evening,,, shes a girl...... sadie came home early yesterday, from school, she had been feeling nausea, headache, but worryingly she said that when looking at words , some were missing, and her drama teachers head was missing too, it really scared her, but she could laugh about it, as she new it sounded so weird,and sadie is the least one of them all to have u on about something....im thinking maybe migrane.... this morning she is ok......
u know the drunk feeling we were talking about, the way i describe it,is feeling very drunk, but without any fun, way to frightening....being buffeted in air turbulence,like if you have had a really bad air flight,and the plane is shook about, i have experienced that feeling on a short plane trip to jersey....the disconected feeling i get is so strange, i have had this on and off for years, i would say since my early twenties when it was not to bad , in my thirties, after tinnitus, it got more frequent, i would feel that i didnt know my surroundings properly, i felt as if i had been on a long vacation and i ahd to get used to my own home again, the atmosphere was not right..this could last for days or maybe a couple of weeks....
emys i went out to friends recently in the evening, and the dining room is cosy but small and i felt asd if i was bouncing about, as enclosed and dim places make me feel worse....although generally i feel a little improvement, but its not enough.... the vrt is working but unfortunatly u have to feel worse before improvement.... can u believe it eh....
subs i hope u still with the 100% improvemnt with the dizzies, we know there is light at the end of the tunnel, blimin long one though eh...lol
i have an evening event to go to soon, and i am not looking forward to it. its connected to my dh work so we kinda have to go.... there r going to be hundreds of people there and i just dont like crowds anymore..prior to this recent (6month) bout, i would have been excited about it..... this monster is such a killjoy.....

hope u r all having a not to day

bye

xx

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willsmom
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posted 10-10-2003 08:25 AM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hi Lorr

Oh poor soph - I think your diagnosis is right about migraine - gee the first time I had that I thought it was a brian bleed or something. I was 6 months preg and was driving along (passenegr seat) and I looked at my dh and I could not read the logo on his tshirt. It was a ted baker top and too me it looked like t d b k r - oh that freaked me - the it looked like parts of his head and face were missing and like it was raining on the inside of my eyes. Lasted about 40 mins and then stopped. Right after I had will I had two in a row very horrid this time it started like some-one clicked a camera in my eye like spots of light that then progeressed to not being able to see my dh face and the into techni colour colurs to the side of my vision - both times it lasted an hour. I felt real sick too - I will oftemn feel quite ill too with numbness and a odd taste in the mouth. But luckily thats been that. You suffer migraines dont you? there seems to be a big family connection. I would still probably run it past the gp and get the meds on hand in case it recurrs.

Yes I know what u mean about your own home seeming unfamiliar - I have that at the minute but I put it down to the balance. As it makes me feel really quite odd like things are not right and that seems to trigger that feeling. Lovely.....not.

Yeh - I knwo aht you mean about the turbulance feeling and all.

Emys - I had another thought for you but I think I will call you - its quicker than typing it here. Hope the dizzies have subsided!!

Same for every-one - hope you are all ok and balance/dizzy free - tall order I know. But I try to think as each day passes its a day closer to feeling normal!! unfortunately just not sure when that illusive day is gonna appear.....lol.

Ok guys gotta go sort my tribe out!! take care xxxxx

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Emsybobs
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posted 10-10-2003 10:00 AM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi all,

Brina - know exactly what you mean about feeling drunk but it not being fun. I say to some people that I feel drunk (well more than drunk - intoxicated) 24/7 and they're like "ooh thats good isnt it". No its not blimin good when you have had it ALL THE TIME FOR A YEAR!

Know just what you mean also about the turbulence...

The Mri - you cant wear jewellery, watches, any zips or hooks on clothes, eye makeup (!). They also ask you ont he phone if you have had any shrapnel in your body! Yes you can wear ear plugs, it says on my leaflet that they give you those to drown out the buzzing sounds...

Subs - will look at the link in a jiffy. Thank you. Ilia had success with it as in they got a diagnosis fromit so will push for that one...

Ilia - talk soon. Goin to pub tonight - 3 nights out in a row - wow! Not feeling too bad but not great by any means either.

Hope the arent too bad today for all of you xxx

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brina
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posted 10-13-2003 05:45 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi ilia and all

how r u

had a really busy w/e as per usual, as u know i went to the physio last wed..... i am a bit concerned as she said that if im not getting anymore reactionn to the excersises then its not worth doing them anymore, and i maybe stuck at this level of recovery, which is better, but not gone.....i only get a tiny reaction to the excercises now, and i dont want to stay like this forever.... she would not elaborate on it, because she is treating me on what the prof has told her.....though overall she is a nice person.....these people can be evasive....i wanted to know why she thought the epley would not be of help to me, and she said it was because the prof had not told her prform it so he must think its not useful for me though she would do it if i had an attack of the bppv. im confused
she did say that as i had measles as a child the bppv i get is due to nerve damage and not the crystals falling off...........confusing????????

anyhow i will carry on with getting out as much as i can and whislt walking to school i keep turning my head left to right, that has an effect more than the excersises (c.c)

how u getting on?

lorr

xx

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willsmom
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posted 10-13-2003 08:45 AM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hey Lorr

Gee how frustrating - I think I would be asking for a consultation with that proff!! can you imagine not offering a half decent explanation. Clearly these people have never felt the way we do!!

You must be some what better any how than me cause I still find it unpleasant just walking around and all. Since the epley my symptoms have changed a bit - I feel pretty still in myself now (only odd spells of feeling very movey or bouncy) but I still feel not right - hard to put into words. Just that I feel off when walking but its unpleasant.........hard to describe. Also when I am sitting still feels wrong but just cannot quite discearn why - also making quick movements makes me feel almost dizzy. Lol.

My dh is off work for 2 weeks which is great as its sooo much nicer than having to put up with this on my own.

Let me know how you are - oh I meant to ask u if they say this could possibly be you 'recovered' to this level then what are the symptoms you are stuck with now? Do you ever feel ok like just perfect say when sitting or something?

Love, Ilia xxxxxx

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brina
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posted 10-13-2003 12:50 PM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi ilia

the symptoms i am left with are a lesser version of what i started with, this time round......
i am now able to go out albeit i feel a wave of lightheadedness as soon as i get to the street.... it is not anxiety.... i feel its more to do with depth perception....my eyes having to focus at further distances..... also i dont like the wind round my head/ears as this makes me feel more lightheaded as well...... i asked the physio why this would be.....her explaination.... the wind slightly knocks the balance ......not inner ear as much as being pushed by it......i dont think so........i cant exlain it myself.. but i know its not that......when i am out, i try to get my mind thinking on something else, my main hobby if u like, before this was to search out bargains for the home....so i try to become intent on finding something......but if i stop to have a drink or bite to eat....then there it is....not a day goes by without it letting me know........i feel as though my vision used to vibrate and shimmer, with the buffeting, which i feel through all of me whern i sit or lye down and a deffinite wavy feeling in my brain, it feels like. when i turn my head far left or right it seems stronger more like a feeling of going up and down on a wavy sea..... i dont even know what category to put all this in.... i suppose dizzy for want of a better word..........i deff. dont feel normal and if i think to much on it i feel panic heading my way.... though i am so much better on the total FEAR of it.... the fear that engulfed me was disabling....literally ...appart from the dizzy symptoms that bought it all about in the first place........i can relate to emsys post on the 1yr mark
hi emsy if u r reading here. i am going to print it and shove under certain peoples noses, then they will understand its not just me who feels this way, and what i have explained to them in the months gone by is felt by others putting it in the same words as i have.....so many of us here feeling similar symptoms and especially like u ilia .

hoping for free sssssooooonnnnn

luv

lorr

xx@};-

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Emsybobs
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posted 10-13-2003 02:17 PM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi Brina, like your shoving under peoples noses thing...feel like doing the same myself. Infact I feel like wearing it on my forehead!

I wouldnt worry about what the physio said - I think its untrue, how can she say that...

Ilia - thanks for your texts just now - will reply in a jiffy from the internet as mob texts v low. Glad you're not too bad.

Take care all xxx

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willsmom
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posted 10-14-2003 06:41 PM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hi Guys

Oh Lorr I can sooooo relate to your symptoms sound like how I feel - weird - I do get these spells when I think oh I feel nearly normal and the that passes and I think gee here we go again.

I think you are taking such a great attitude by trying to focus on something else easier said than done eh!!

Emsy said an inspiring thing to me the other day - she I said so how do you not get panicked and she said quite simply "well its kinda boring now and I know nothing bad is actually ever going to happen.....really" and I thought gee you are so right!! So I went to the store (Tescos) that I have been avioding like the plague belive it or not at 1am - as I was feeling good and I thought what the heck. Whilst there it was actually great as it was quiet there was so much less movement and it was soooo much better. I got these sooooo cute little horses for my dd birthday - my kids birthdays fall within 9 days of each other - they were both due on the 21st of Nov - Brk ended up the 13th and bud the 4th. Weird. Any how enough of my blether!!

Hope you r well - emsy delighted u getting a good spell - lorr ignore that vrt women unless she is a n expert - sound like u r coping great. Emsy great news with you - I do not want to pre-empt your post so I will leave that one to you.

So glad to have to you for support!! and all u other dizzies - it makes the world of difference. xx

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brina
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posted 10-15-2003 05:07 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi ilia emsy

hey ilia cool, shopping at 1am, understand how that would be easier on u than shopping with crowds...//

"happy birthday" to brook and bud when the day arrives

last evening from 7pm-9pm a had to sit in my dd's school hall amongst roughly 100 people....it felt so terrible i could hardly concentrate on what the head master was saying......i felt as though i was on that bloomin airplane in bad turbulence, i just wanted to get away from there....but dd is in yr 11 and it was about final exams and going onto college..............

i write occasionally to a woman who has mdds, and she is under prof luxon, she went to see her last week, she is the one i told u of who had to buy a trampete etc.... she said that prof l. told her that if you have inner ear disturbence and u feel low or depressed about it, it cannot recover easily as in the brain the areas of movement and mood r close together and affect one another.....her theory on boat,plane triggering mdds is a dormant virus in the ear that is activated by having to compensate for the movement of the transport .... this woman has been asked to go on live morning tv to talk about mdds.... i know u dont have mdds but i think the sympts r alike and maybe like a cousin to labs......

emsy had the mri? let us know how it goes

last Q , have either of u ever had the sensation of your hearing going low then a low rumbling through your ears and the back of your head, the rumbling sound is like when u r on the underground platform waiting for the train and you get that air pressure rumble just before the train comes through the tunnel, like the eardrums a vibrating rapidly...its horrible and thankfully doesent last to long but it still worries me as i have no idea what it is.............

catch u later

lorr

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Emsybobs
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posted 10-15-2003 08:22 AM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi Lorr and Ilia,

Gosh I would love to go on morning tv to talk about this blimin thing! I am thinking of going to prof luxon lorr...have got balance tests next week and mri the following, will see what they discover, if nothing, will def be going to see Luxon, privately or nhs, whatever I can get.

Since my plane flight, my symptoms match exactly with mdds.

I do get the momentary deafness thing yes but not the weird sound on top. It's weird the deafness though isnt it.

Feeling not too bad today, going to look around a school for a job in jan but just v v uncertain whether I can hack full time work then or not. Agh!

xxx

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hbep
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posted 10-15-2003 11:07 AM     Click Here to See the Profile for hbep     Edit/Delete Message   Reply w/Quote
Hi Brina,

I get vibrating and rumbling in my ears. Do a search on idiopathic stapedial muscular spasm. This is what I think I have, it's caused by muscles in that area going in to spasm.

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willsmom
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posted 10-15-2003 02:47 PM     Click Here to See the Profile for willsmom     Edit/Delete Message   Reply w/Quote
Hey Emma here's something about BPPV - remember we were talking about how odd it is they say I have BPPV but yet my symptoms are cronic and not just bursts! so here it is:

Benign Paroxysmal Positional Vertigo (BPPV): This is the most common cause of vertigo.

What causes it? The most common theory of the cause of BPPV is that "debris" becomes free-floating within the semi-circular canals of the inner-ear. This "debris" can cause dizziness and unsteadiness with movement.


(This is my point - I feel unsteady ALL the time so could not see how I had BPPV - but like it says it can produce that feelin!!)

Can Physical Therapy help with BPPV? Absolutely! Once a diagnosis of BPPV has been made by your doctor, Physical Therapy can perform specialized treatments designed to free the "debris" and move them back where they belong, which improves the symptoms. Researchers have shown a 90 to 100% improvement rate when these techniques are properly performed and proper aftercare instructions are followed.

Vestibular Neuritis or Labyrinthitis: This term describes a malfunction or loss of function within the inner-ear apparatus (Vestibular System,) or of the vestibular nerve itself.

What causes it? This disorder is usually caused by a viral infection, and is often preceded by a cold or upper GI infection. This is the second most common cause of vertigo in adults.

What are the symptoms? Unlike BPPV, in which the vertigo tends to be of short duration, vestibular neuritis vertigo tends to be more severe and prolonged. Nausea, postural imbalance, and nystagmus is also present. Hearing loss is usually not present.

Is Physical Therapy indicated for Vestibular Neuritis? Yes, in most cases. Your doctor may consider medication and bed rest in the most severe, initial acute phase; after the first week or two, Physical Therapy can teach specialized exercises designed to improve symptoms of vertigo and reduce postural instability. Specific exercises can help to improve the ability to move around with greater ease.

Oh also found a bit on our type of symptoms under Vestibular Hypofunction - basically what we were talking about - dysfunction!!

Well I really have my fingers crossed that your tests will show something!! I have a feeling they will.

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brina
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posted 10-16-2003 04:58 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi ilia emsy hbep

i have my appointment through for the mri, eeeeeekkk
the 5th nov...received the questionnaire...like u mentioned emsy.... well deff claustrophobic, and the q
have u ever had any metal fragments in your eyes...well thats a weird one, but many years ago i did have something fly into my eye and bury itself in the centre for about 4 days, just as i was concidering going to the docs about it, i got upset and cried and dislodged it. then a couple of years after that, i had to go for a eye exam at harley street for my job and they could see the tiny scar it left. point is i dont know what it was.... do u think its worth mentioning?
i am most scared of the thought that the loud noise will increase the tinnitus , sorry to sound a baby, but do u think its loud enough to do that?? the prob is certain noises like hairdriers hoovers, i suppose loud white noise, increases the level of my t .and any short sharp loud sounds like me dropping the saucepan lid on a hard floor.lol or plates clacking together.. i hope the ear protectors r enough, did u wear them ilia when u had it done? do u feel the same emsy?
hbep thank u for the link which i am going to read in a minite, did u have the mri? well apart from hearing tests and the pressure test i had done years ago for the t , this will be the first test ever for the dizzy.
ilia i read your post on bppv... and vn..... these have also been my dx.... bppv in the past... lab and vn...and likened to mdds....present....there r so many symptoms that when i read them i can relate at some point to them all..... this is what is so frustrating... i think this can apply to a lot of us though,dont u think? how has the symptoms been since the last epley?
hey can u believe this i am really worried about the flu, and last night i was getting the flu sypmtoms,achy joints headache, nausea, that i can cope with but more dizzy on top of dizzy this scares me but what can u do about it? its just not right that u know if u get any letting up with your dizzy its back to square 1 with these viruses going about.
dd sophie has had a lecture about going on messenger, she was spending too much time on it, and not concentrating on her revision... so... she can go on when she has done the revision and h/w. the only thing now is my evenings r full of h/w with all dd's , dh helps too , but i just havnt got thatgood concentration myself anymore............... oh well it occupies

hope u r less today

luv

lorr

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Emsybobs
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posted 10-16-2003 08:53 AM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi all,

Lorr - yes I was worried about the mri and tinnitus as since the flight, I do get it more and I notice that even sitting at the computer a while with that low level high noise sets it off. So yeh I may wear ear plugs.

These next wk will be my 1st dizzy tests too Lorr.

Praying something shows up.

HBEP - my GP wont refer me to London. Didnt think she will. If nothing shows up in tests next wk, am going to go to the Leicester balance clinic to see a Neurotologist (its closer for me) privately.

Great to talk to you and belle and eric last night Ilia.

Having a good day again today :-)

Hope you are all not suffering too much with these damn dizzies
xxx

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littleone1972
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posted 10-16-2003 09:05 AM     Click Here to See the Profile for littleone1972     Edit/Delete Message   Reply w/Quote
Hi Guys

just curious whats MDDS? I am keen to understand more as all this started a couple of weeks after I got off a long haul flight? My homeopath sent through some remedies for these symptoms so it it works or helps I'll pass on the name of the stuff you have to get. Illia can't believe you are shopping at 1am! This thing is now making me so tired I'm tucked up in bed by 11 at the latest! thats so cool, well done!

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brina
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posted 10-16-2003 10:52 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi littleone,

mdds is mal d'debarquement syndrome which is seen on the boards from time to time, it is a curious form of vertigo, triggered by cruises most often, but also any mode of transport, of long duration, spoony has a recent update here......it is said that if u r having mdds, u will notice immediatly after stopping or getting off the boat....not days or weeks later, but some people on the mdds forum dispute this......
catch u later all

lorr

xx

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Emsybobs
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posted 10-16-2003 01:43 PM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Yep as brina says it is normally an instant thing after a flight but little one, lots of ear probs can be triggered by flights - eustacian tube dysfunction and others. I dont think yours is MDDs but im not a doctor. xxx

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brina
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posted 10-17-2003 05:31 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
ilia it was good to talk yesterday, when sophie got back from her lesson yesterday, she was dancing about in front of me in the kitchen, and asking me questions at the same time...... it was so weird watching her spin toward me that it threw me off balance and i started falling over to the left....she steadied me but thought it was hilarious....how easy it is to be thrown off bal by watching someonelse spin around...

emsy, sounds like an excellent place at the leicester balance clinic, ilia was telling me about it, after i have had the mri and seen the prof... if he doesnt come up with any more info, i will try there myself.

hbep, i did a search on the idiopathic s.m.s. amazing,
i have asked about this in the past , even to an ent man , when i went about the tinnitus, he just shrugged at me, no explaination, why do they do this, i thought i must have been the only one to have it....he must have known? well thank you because now i know at least it does exist and has a name...also under tinnitus but objective rather than subjective... cant beleive i have both...lol. well at least the i.s.m.s. is short lived......and hope it stays that way.....it would be more intrusive than my other t. another question , i see a lot mentioned that when they swallow, they hear a crackling noise, so do i, but i thought eveyone did? its positively a loud crackling sound, every time....is this not right? how about u all
do u hear that sound????? thanks guys in advance.....

hbep how r u , u r kind enough to give answers, but u dont mention yourself.....

ilia hope we can chat again soon, hope u get your new mike , emsy do u have a mike on ur computer?

hope u r all ok

luv

lorr

xx

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hbep
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posted 10-17-2003 06:22 AM     Click Here to See the Profile for hbep     Edit/Delete Message   Reply w/Quote
Hi Brina,

Yup, know what you mean about ENT's looking at you like you're nuts. I've come across other people with this on the net since it started - they get the same deal, unsympathetic ENT's who clearly don't know their stuff. Fortunately that article - if you found the same one I did, was written by 3 otolaryntologist and seems to describe it really well. Once I'd read it I figured that was what I had - makes total sense, and don't even bother asking the specialists about it anymore. By the way, as it's caused by muscular spasm, daily gentle neck stretches can really help, they have me.

I am up and down, doing my VRT, which seems to cause me to have much better patches, followed by horrendous patches. I've dug my heels in and am determined to beat this thing, which doesn't mean to say it doesn't still drive me crazy and make me weary. Ah well.

Good news about Leicester Emsybobs, personally I'd be inclined to go whatever happens. I'd want the opinion of a proper dizzy specialist even if the ENG comes back positive, I'd want to know what they think my diagnosis is based on the ENG, plus my history. Hopefully as you're had the ENG done on the NHS, you wouldn't have to pay privately for that again. Generally, if you just have a consultation - no tests, it isn't that expensive, and, once you're in the door privately, if you explain your situation, they will, if they're nice, transfer you to the NHS list.

best,

hbep.

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Emsybobs
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posted 10-17-2003 08:46 AM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Brina - havent got a mike, no but will look into getting one.

Ilia - sorry my texts are sporadic, they are v low at the mo! Hope you're ok? Will go on msngr sometime this weekend.

Hbep and Ilia and Brina - rang the Leicester and London places to see which one is best to go to privately. London - you have to have ALL the tests even if you had them elsewhere, will cost about 800 pounds and there is a 5 week waiting list. It's also a 4 day thing. Leicester - they wont re-do tests if youve had them done elsewhere, they just need copies. Therefore it will be cheaper. The clinics are on Saturdays only and the waiting list is 6-8 wks. Am going to go for Leicester just cos of cost. Maybe you are right Hbep about going anyway, will have to ask my parents about that as parents are paying! The whole thingisnt as easy for me unfortuately as after being a student for 4 years, I am broke! Going to see my GP on Tues to discuss.

Feeling good today. I think the VRT is helping.

xxx

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brina
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posted 10-21-2003 04:17 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi all

how u all doing?

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Emsybobs
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posted 10-21-2003 08:09 AM     Click Here to See the Profile for Emsybobs     Edit/Delete Message   Reply w/Quote
Hi All,

Well I hope ilia you are almost 100% now - so glad the epley has worked for you.

Brina - hows you?

I'm feeling v disheartened at the moment, the dizziness is far better so I should be pleased which I am but I worked yesterday morn and felt good, then by the end of the day dizzies were back. Went to bed and this morn they are good again so I guess thats positive. Got a bit of a cold so taking vit c by the gallons, had ear ache last night too - aghhhhhh.

Balance tests thurs which im dreading just cos of a negative result and I know the day will be draining mentally. Am delicate anyway at mo! I am so fed up of this head monster.

Ilia - been to Gp and goin to a urologist for other prb - so fed up of all this! They have to send a camera down there!

Hope you're not permanently banned from here Ilia? why? Email moderator if you see no reason for it.
Will talk to you soon, maybe tomorrow? Not sure if will be in right state to talk Thurs! And Fri am working then my sister is coming for weekend as its my birthday!

Do hope you're all ok xxx

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brina
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posted 10-22-2003 05:59 AM     Click Here to See the Profile for brina     Edit/Delete Message   Reply w/Quote
hi all

emsy, your dizzies r getting better , about time for u eh, but u still r having episodes, if u r tired, have colds, stress? u r coping well though...i dread getting colds and flus dont blame u for dosing up on vit c....and echinacea (sp) is supposed to be good too.
good luck with the bal tests on thursday...

im still having the sensation of movement when still....and the lightheaded when out walking, and the feeling of being pulled sometimes to the left or the right.... yesterday i was out walking in the highstreet and i had a brief spell of going deaf in one ear with that a high hhhmmmm sound very loud. and increased dizzyness which lasts about 40seconds. though i have had this on and off for years...and seems seperate from the constant one i have now.... weird eh....

look after yourselves
best wishes

lorr

xx

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