Aa
meniere's disease/ vertigo /help /quix anyone
Hi All
Back again. i've been suffering from vertigo on and off for a few months but only lasting an hour to 24 hrs this has been 7 days with only a short break inbetween first 3 days spent in bed then confined to house till saturday when i went out in my wheelchair for a couple of hrs and had to come home not cause of my fibromyalgia but because of the vertigo. By this morning (monday) i was spinning again and could barly stand, which is not on when you have 3 kids to get ready for school!
so i phoned dr and she said i'm on max of the betahistine 8 mg 2 tablets 3x a day and i'll have to deal with it and go back to bed and it will pass and to wait till next monday when i see ENT, i'm used to the ever changing disorder of fibro but this disease or the vertigo side is hard to tell when it will hit. I've heard there is other meds out there to control vertigo so was upset the dr would not try anything else to i see the ENT as again my life is on hold in bed and at this rate i'm not going to be able to get to the appointment with this spinning going on.
i'm also worried that i have just signed up to a brand new car through my disabilty sceme we have in the uk with adaptions made to steering wheel and hoist in back for y scooter or whhelchair and was really looing forward to driving again after nearly a year not but i cant as its too dangerous.
has anyone else got vertigo? and what do they take?
thanks sam xx
Back again. i've been suffering from vertigo on and off for a few months but only lasting an hour to 24 hrs this has been 7 days with only a short break inbetween first 3 days spent in bed then confined to house till saturday when i went out in my wheelchair for a couple of hrs and had to come home not cause of my fibromyalgia but because of the vertigo. By this morning (monday) i was spinning again and could barly stand, which is not on when you have 3 kids to get ready for school!
so i phoned dr and she said i'm on max of the betahistine 8 mg 2 tablets 3x a day and i'll have to deal with it and go back to bed and it will pass and to wait till next monday when i see ENT, i'm used to the ever changing disorder of fibro but this disease or the vertigo side is hard to tell when it will hit. I've heard there is other meds out there to control vertigo so was upset the dr would not try anything else to i see the ENT as again my life is on hold in bed and at this rate i'm not going to be able to get to the appointment with this spinning going on.
i'm also worried that i have just signed up to a brand new car through my disabilty sceme we have in the uk with adaptions made to steering wheel and hoist in back for y scooter or whhelchair and was really looing forward to driving again after nearly a year not but i cant as its too dangerous.
has anyone else got vertigo? and what do they take?
thanks sam xx
Quix,
Always great to here from you hun, what a journey we all go on hugh and how we are still on here helping each other out, where would i be without my friends and there expert advise.
I already have some hearing loss in the right ear, i get the worst problem in my right ear that hurts alot with the ringing and on off pressure and popping, i've had this problem for a while and was ment to sort it back last year but like i say my fibro got in the way and i had to be re-refered so it has got alot worst of recent mths though i had a summer without problems except the ringing that is always there and the slighltly off feeling and sick feeling but these vertigo attacks are recent, but when i think back i have had a few attacks where i have felt dizzy and could not lift my head off the pillow but blamed my fibro and meds till recent when i had to call the dr in cause i thought i was going to take off from my bed lol and then as she went over my history and what the ENT had said in his first report that i had fluid in the inner ear and explained briefly about meniere's. Thank you for asking your friend about what her best action is and thanks for the links i will go on there.
I've read about duirics help and having a low salt diet and to stay off alcohol and caffine which i do except the salt diet i would not know how much salt i eat i never add salt to my dinner but i know its in alot of things but i dont eat much just breakfast ceral then apple and yogut for lunch then meat veg and potatoes for dinner no pudding very boring diet, my friend is training to be a nutrianist so i have asked her about my fibro diet wise and now this to see if i can help myself, i dont really want to tae to many more meds as i am on alot already but i would do anything to stop this.
I'm alot more positive about my illness these days and i know this is something else to get under control but it is frustrating as i spend most of the day between the bed and the sofa.
I've heard fistula problems cause simular sx too meniere's disease and that fixable, i have had packed sinues for ages and been on steroid nose spray for over a year now so dont know if the two are connected though you get sinues probs linked too fibro so maybe not.
Is meniere's passed down as my mum had an ear disorder that effected her balance she was always fainting and falling and eventually went deaf in her right ear i remember her wearing a hearing aid, she died of cancer in her fifties so cant ask her about it and my dad died 18 mths later so cant ask him he was in his fifties too and i am an only child annoying as i'd like to know.
I had ringing in my ears long before i had fibro about 2 years before so have had this ear problem for nearly 4 years but got worst after the car accident and getting my fibro.
Being tired makes it worst, also my ears are so sensitive to noise high pitch sounds like my kids and slamming doors or babies crying it hurts them so much i wear cotton wool at night and during the day to mufle sounds and often sleep with the fan as i cant stand the silence as the ringing is too much, do you get that quix? Is the ECG better then the ENG ?the ENG is an hour test where they put electrodes on your eye muscles and put your head in different postions and check the output then put warm water or air into the inner ear and record the findings.what does a ECG do?
wobbly
It all sounds like a ear problem have they checked you out for a fistular i'm not sure what it dose in the ear but when i looked it up i think it caused fluid to leak back into the inner ear not sure but that is easily fixed i think, so what are they saying your vertigo and ear problems are if they are not inner ear neuro? have you had a MRI sometimes they can tell from there what is causing it or a CT scan. yes you should get a lap top alot easier, let me know how it is going.Its abit easier today its coming and going not constant so tired i could sleep all day. lol
Nancy T
Hi not sure what my GP would say if i ased for these drugs think she gets fed up with my fibro and keeping that under control when the rheumy keeps changing my meds and now i have something else wrong she not very clued up and wants to leave it up to the ENT and i guess its only a week away i just pray i will be able to get out by then and last time we say for two hrs waiting there noway i can do that with this spinning going on, although as i cant walk far( cause of fibro) i'll be in my wheelchair but still when its like this i have to lay down, and i get confused too but i'll have someone with me.Thanks for your advise on eds.
love Sam.
Always great to here from you hun, what a journey we all go on hugh and how we are still on here helping each other out, where would i be without my friends and there expert advise.
I already have some hearing loss in the right ear, i get the worst problem in my right ear that hurts alot with the ringing and on off pressure and popping, i've had this problem for a while and was ment to sort it back last year but like i say my fibro got in the way and i had to be re-refered so it has got alot worst of recent mths though i had a summer without problems except the ringing that is always there and the slighltly off feeling and sick feeling but these vertigo attacks are recent, but when i think back i have had a few attacks where i have felt dizzy and could not lift my head off the pillow but blamed my fibro and meds till recent when i had to call the dr in cause i thought i was going to take off from my bed lol and then as she went over my history and what the ENT had said in his first report that i had fluid in the inner ear and explained briefly about meniere's. Thank you for asking your friend about what her best action is and thanks for the links i will go on there.
I've read about duirics help and having a low salt diet and to stay off alcohol and caffine which i do except the salt diet i would not know how much salt i eat i never add salt to my dinner but i know its in alot of things but i dont eat much just breakfast ceral then apple and yogut for lunch then meat veg and potatoes for dinner no pudding very boring diet, my friend is training to be a nutrianist so i have asked her about my fibro diet wise and now this to see if i can help myself, i dont really want to tae to many more meds as i am on alot already but i would do anything to stop this.
I'm alot more positive about my illness these days and i know this is something else to get under control but it is frustrating as i spend most of the day between the bed and the sofa.
I've heard fistula problems cause simular sx too meniere's disease and that fixable, i have had packed sinues for ages and been on steroid nose spray for over a year now so dont know if the two are connected though you get sinues probs linked too fibro so maybe not.
Is meniere's passed down as my mum had an ear disorder that effected her balance she was always fainting and falling and eventually went deaf in her right ear i remember her wearing a hearing aid, she died of cancer in her fifties so cant ask her about it and my dad died 18 mths later so cant ask him he was in his fifties too and i am an only child annoying as i'd like to know.
I had ringing in my ears long before i had fibro about 2 years before so have had this ear problem for nearly 4 years but got worst after the car accident and getting my fibro.
Being tired makes it worst, also my ears are so sensitive to noise high pitch sounds like my kids and slamming doors or babies crying it hurts them so much i wear cotton wool at night and during the day to mufle sounds and often sleep with the fan as i cant stand the silence as the ringing is too much, do you get that quix? Is the ECG better then the ENG ?the ENG is an hour test where they put electrodes on your eye muscles and put your head in different postions and check the output then put warm water or air into the inner ear and record the findings.what does a ECG do?
wobbly
It all sounds like a ear problem have they checked you out for a fistular i'm not sure what it dose in the ear but when i looked it up i think it caused fluid to leak back into the inner ear not sure but that is easily fixed i think, so what are they saying your vertigo and ear problems are if they are not inner ear neuro? have you had a MRI sometimes they can tell from there what is causing it or a CT scan. yes you should get a lap top alot easier, let me know how it is going.Its abit easier today its coming and going not constant so tired i could sleep all day. lol
Nancy T
Hi not sure what my GP would say if i ased for these drugs think she gets fed up with my fibro and keeping that under control when the rheumy keeps changing my meds and now i have something else wrong she not very clued up and wants to leave it up to the ENT and i guess its only a week away i just pray i will be able to get out by then and last time we say for two hrs waiting there noway i can do that with this spinning going on, although as i cant walk far( cause of fibro) i'll be in my wheelchair but still when its like this i have to lay down, and i get confused too but i'll have someone with me.Thanks for your advise on eds.
love Sam.
Besides having bilateral BPPV and a perilymph fistula - which he took care of - I had what he termed L hyperactive labyrinthitis. But, when he finally had to kill off the left vestibular system and the problem began appearing on the right side, he felt it was an atypical presentation of Autoimmune Inner Ear Disease, but without hearing loss. For a long time the steroids helped.
Quix
Quix
Sam, I don't know what Betahistine is (you are in the UK, right? it's used there, but not generally in the US), but can you take meclizine? That is often given for spinning vertigo in the US. It's available over the counter here as Bonamine or Dramamine Less Drowsy Formula. The prescription version is called Antivert, but it's exactly the same thing (and dosage) as you can get over the counter.
Quix, if you didn't have Meniere's, why were you getting the intratympanic injections (or infusions)? Did you have some other peripheral diagnosis?
Nancy
Quix, if you didn't have Meniere's, why were you getting the intratympanic injections (or infusions)? Did you have some other peripheral diagnosis?
Nancy
Oh, my, yes I understand what you are going through. Vertigo is what knocked me out of practicing medicine and I was all but bedridden for three or four years. I was lucky enough to make it into the practice of an oto-neurologist who is world famous for finding the treament/cure to BPPV. He devised the Epley Maneuvers. What helped me most is his practice of placing a tube in the eardrum (like kids get) and then placing a wick in the tube and delivering steroids deep into the ear. That worked for a long time. I also tried Betahistine which did nothing for me. I did not have Meniere's.
You have the classic combination of fluccuating hearing loss, tinnitus and vertigo which makes up Meniere's Disease. This is a disorder where the mechanism in the inner ear, called the cochlea, develops too much fluid. This fluid build up causes the pressure on the hearing organs and the balance organs and causes the symptoms.
The best test for diagnosing this is called the ElectroCochleagram and is a very specialized test that is only done here in major Vestibular Clinics or specialist in Meniere's Disease.
The time honored treatment for Meniere's is a VERY low sodium diet, like 2 gram a day. This often means even buying low sodium bread. My best friend developed Meniere's about 5 years ago and she is often as miserable as you describe. Her best results have come from rigid adherence to the diet. She is very sensitive to changes in the barometric pressure. I will ask her what her best sources of information have been.
They also use a diuretic called acetazolamide (Diamox). This really helps a lot of people, but can have some side effects that prevent them from being able to use it.
As of now, Meniere's is not curable, but it won't kill you. It has a tendency to be worse in the first few years, then kind of "burn out" leaving you unsteady, but more functional. The hearing fluccuates but often there is permanent loss.
I agree with Wobbly. My tinnitus is often so loud as to drown out conversation. It gets to the point of me crying and I would say it is "painful."
I'm so sorry you have this to add to your plate. It is definitely not fair.
My favorite vestibular site on line is the VEDA - Vestibular Disorders Association
http://www.vestibular.org/vestibular-disorders/specific-disorders/meniere92s-disease.php
I'll also check with my friend.
In total sympathy,
Quix
You have the classic combination of fluccuating hearing loss, tinnitus and vertigo which makes up Meniere's Disease. This is a disorder where the mechanism in the inner ear, called the cochlea, develops too much fluid. This fluid build up causes the pressure on the hearing organs and the balance organs and causes the symptoms.
The best test for diagnosing this is called the ElectroCochleagram and is a very specialized test that is only done here in major Vestibular Clinics or specialist in Meniere's Disease.
The time honored treatment for Meniere's is a VERY low sodium diet, like 2 gram a day. This often means even buying low sodium bread. My best friend developed Meniere's about 5 years ago and she is often as miserable as you describe. Her best results have come from rigid adherence to the diet. She is very sensitive to changes in the barometric pressure. I will ask her what her best sources of information have been.
They also use a diuretic called acetazolamide (Diamox). This really helps a lot of people, but can have some side effects that prevent them from being able to use it.
As of now, Meniere's is not curable, but it won't kill you. It has a tendency to be worse in the first few years, then kind of "burn out" leaving you unsteady, but more functional. The hearing fluccuates but often there is permanent loss.
I agree with Wobbly. My tinnitus is often so loud as to drown out conversation. It gets to the point of me crying and I would say it is "painful."
I'm so sorry you have this to add to your plate. It is definitely not fair.
My favorite vestibular site on line is the VEDA - Vestibular Disorders Association
http://www.vestibular.org/vestibular-disorders/specific-disorders/meniere92s-disease.php
I'll also check with my friend.
In total sympathy,
Quix
hi again, yes I think I should get myself a laptop... it get so difficult to get up at times.
the ENT a few years ago said it's Neuro...but I have my doubts on that...my ears pop at times and feel full...not everytime but alot of the time...I have Tinnitus...almost 24/7... and it at times gets loud I want to scream...I can't hear anything at times....
I sometimes feel so bad I can swallow...it feels like I'm just feeling so bad that I hold still even my breathing...it's probably why I get thirsty??
I hate that feeling so much... and my vision goes crazy too..
hang in there hon
wobbly
undx
the ENT a few years ago said it's Neuro...but I have my doubts on that...my ears pop at times and feel full...not everytime but alot of the time...I have Tinnitus...almost 24/7... and it at times gets loud I want to scream...I can't hear anything at times....
I sometimes feel so bad I can swallow...it feels like I'm just feeling so bad that I hold still even my breathing...it's probably why I get thirsty??
I hate that feeling so much... and my vision goes crazy too..
hang in there hon
wobbly
undx
re read your post i get the thirsty feeling afterwards and the tirdness and the soreness in my right ear like a pressure and popping and a fullness in the ear, do you get ringing? i get lift my head off the pillow either when i'm having a vertigo attack i also sweat so much i get soked and have the eye thing too maybe it is inner ear for you like they say it is for me but i might have the water test and fail it they seem to think its menieres disease without the test maybe they have seen something in the CT scan, when the dr looked in my ears she said i had fluid in the inner ear and that is causing the vertigo.
anyway wanted to add that.
sam
anyway wanted to add that.
sam
Hi Hun,
Thanks so much for replying to this knowing how bad you feel and how hard it is to type when feeling like this, i have a laptop so i can email and post while in bed.
Its hard enough with my fibro i went through so much testing as so many of you know on here and to no avail but to say i have fibro which i thought at first was a cope out but have recently learnt it is a real disabiltating disoder of the CNS simular to MS and thats why for so long i thought and at first the medical staff thought i had it till the test came back clear and now this vertigo out of no where i just get to a point where i am trying to claim my life back despite the constant pain and spsams and aching body lack of sleep and being a singal mum of 3 i get this chucked at me.
My vertigo is so my gp says and my ENT hinted at is menirers disease, i do have all the sx the pressure in my ears the ringing in the ears the hearing lost and now the bouts of vertigo.
I feel inbetween sick and unbalanced i walk slow with my head carried low as not to shake my head. when i have an attack it comes on sudden and the room just spins and my stomach drops like going on a rollar coaster down a drop and i have to lay down i have to close my eyes but at the same time that makes it worst when i move my eyes from side to side that makes it really bad and my eyes jerk slighty, i get blurred vison and i have to stay really still. my head keeps turning my stomach if that makes sense and thats where the sickness ocurrs although i have never been sick and i feel so tired and just sleep the whole thing off or try too as moving is impossible and i feel like i am going to fall. The ringing in my ears is so loud i cant think and my head and ears fill like thy are going to explode!!
You have been helpfull and i am so sorry you are going through this and for so long, how do you make it to your appointments feeling so bad what do they say when you go? have you had your inner ear checked? i think you have if i read your post right so it must be neuro based with you were they are staying its inner ear with me but they dont know that for sure and i have to have the ENG yet i've had a CT and going back for results in 2nd of feb and have another hearing test as i had no wareness of low tones on my last hearing test but i did not have verito like this last time i went i was just dizzy and unbalanced and when i shut my eyes i fell to the left and could not walk straight.
You have helped alot just knowing you are going through this.Take care and keep in touch.
sam
Thanks so much for replying to this knowing how bad you feel and how hard it is to type when feeling like this, i have a laptop so i can email and post while in bed.
Its hard enough with my fibro i went through so much testing as so many of you know on here and to no avail but to say i have fibro which i thought at first was a cope out but have recently learnt it is a real disabiltating disoder of the CNS simular to MS and thats why for so long i thought and at first the medical staff thought i had it till the test came back clear and now this vertigo out of no where i just get to a point where i am trying to claim my life back despite the constant pain and spsams and aching body lack of sleep and being a singal mum of 3 i get this chucked at me.
My vertigo is so my gp says and my ENT hinted at is menirers disease, i do have all the sx the pressure in my ears the ringing in the ears the hearing lost and now the bouts of vertigo.
I feel inbetween sick and unbalanced i walk slow with my head carried low as not to shake my head. when i have an attack it comes on sudden and the room just spins and my stomach drops like going on a rollar coaster down a drop and i have to lay down i have to close my eyes but at the same time that makes it worst when i move my eyes from side to side that makes it really bad and my eyes jerk slighty, i get blurred vison and i have to stay really still. my head keeps turning my stomach if that makes sense and thats where the sickness ocurrs although i have never been sick and i feel so tired and just sleep the whole thing off or try too as moving is impossible and i feel like i am going to fall. The ringing in my ears is so loud i cant think and my head and ears fill like thy are going to explode!!
You have been helpfull and i am so sorry you are going through this and for so long, how do you make it to your appointments feeling so bad what do they say when you go? have you had your inner ear checked? i think you have if i read your post right so it must be neuro based with you were they are staying its inner ear with me but they dont know that for sure and i have to have the ENG yet i've had a CT and going back for results in 2nd of feb and have another hearing test as i had no wareness of low tones on my last hearing test but i did not have verito like this last time i went i was just dizzy and unbalanced and when i shut my eyes i fell to the left and could not walk straight.
You have helped alot just knowing you are going through this.Take care and keep in touch.
sam
Hi Sam....I'm so sorry your going through this...SO AM I ... it's horrible, I've had Vertigo on and off for the past 3 years and had it 10 years ago for 6 months... I do get a week or so off in between...but then lately, I've been having it daily for a few days the a day off.. I wrote a post a few days ago about my Vertigo...check it out...is this the feeling you get with your.
I can't help with meds...I haven't found any that help me... I am at home most of the time. I used to drive and used to go out by myself, no longer... it can happen at any time any place any where... so I'm pretty well just waiting for it to stop and hope I don't get to nauseated from it. which can happen alot.
OH...sorry...one thing that does help is a high dose of Prednisone...I forgot about that...my GP will give me some for a week...50mg... it stops the Vertigo...but I found last time I took Prednisone for this...which was the begginning of Jan...when I stopped the meds...the Vertigo came back alot worse and I'm still dealing with it.. Sorry I'm not much help here...I know some people take the sea sickness pills you can buy at the drugstore.. doesn't help me though..
well, I'm heading to the couch again...bye for now..
take care
wobbly
undx
I can't help with meds...I haven't found any that help me... I am at home most of the time. I used to drive and used to go out by myself, no longer... it can happen at any time any place any where... so I'm pretty well just waiting for it to stop and hope I don't get to nauseated from it. which can happen alot.
OH...sorry...one thing that does help is a high dose of Prednisone...I forgot about that...my GP will give me some for a week...50mg... it stops the Vertigo...but I found last time I took Prednisone for this...which was the begginning of Jan...when I stopped the meds...the Vertigo came back alot worse and I'm still dealing with it.. Sorry I'm not much help here...I know some people take the sea sickness pills you can buy at the drugstore.. doesn't help me though..
well, I'm heading to the couch again...bye for now..
take care
wobbly
undx
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