meniere's disease

hi all
just a quick question

:( does anyone else on here suffer from this or know anyone that does? if so what do they find helps ?

 

My late FIL suffered with menieres,he used to have to go to bed and stay there until the symptoms eased.He didn't take kindly to it but it was the only way for him to get over the 'episodes'.It must be awful and my heart goes out to anyone who suffers from it..

 

Hi chitting kaz-here is some information that I found.

This syndrome is debilitating since the crisis can take place at any time and they last from 20 min to a few hours. Therefore it is dangerous for example to drive.
One can control the severity of the crisis by lying down on a flat surface on the side of the healthy ear and fix a spot. Avoid drinking so that there will be no vomit. Wash the affected ear with cold water (20-30 degrees celsius) using a syringe without needle.

It is very important to have a correct balance between salt and liquid at all times in the organism.
So therefore the use of salt has to be drastically reduced. Small regular meals throughout the day.
Reduce consumption of coffee, tea, chocolate. Sometimes milk, for some people.
No alcool and it is important to reintroduce water in the organism when lost following for example physical activity.
Avoid sodium monoglutammate present in great quantities in Chinese cooking.

Then of course there are pharmaceuticals helps and surgeries but as I understand the condition can be helped but not cured completely.

 

Anyone finding something that helps MD will very quickly be extremely wealthy ..........

 

Hi Kaz i had meniers Disease for a few years .. eventually it burns its self out , but is extremely debilitating to say the least , it is very often accompanied with Tinnitus which just further adds to the misery .. its a complaint of the inner ear and is rather difficult to treat although there drugs such as anti vert and other similar therapies that can help..
a low salt intake or in fact NO salt can help and plenty of fresh veggies and filtered water, i have a few friends who have suffered with Meniers and all are feeling much better now.. below are the symptoms that you must be aware of .. is it your self that is suffering Kaz best of luck .. feel better soon Micky

• Vertigo - an intense sense of spinning. This is usually episodic and can range from mild to severe. The vertigo attacks of Meniere's disease are rotational and the duration of each episode must be at least 20 minutes in order to be classified as Meniere's disease.
• Hearing loss - fluctuating low-frequency sensorineural hearing loss that becomes worse during attacks and may permanently deteriorate over time.
• Tinnitus - typically a low tone ringing or roaring noise in the ears.
• Aural fullness - a sense of fullness in the ear. :(

 

yes to all above, it is me that has it, forover three years now the attacks are comming closer and closer together, and i must say they are now leaving me exhausted, i take meds from the doc ( which help to a degree) but i must say they have offered very little advice, i have read loads on the web but often they contradict what i have read differently, i dont ever drink so not a problem, i dont use salt, i cook from fresh so know there is no hidden salt, i drive alot :( for work so this is becoming a problem, My job is caring for people with severe illnesses and diff-abilities for long periods of times, which can prove a challange to say the least !! i cant have my ears syringed as i have perferated the effected ear on four occations and had numerous ops so that is not an optiontion,
the tinitus is always there like a fan whirling but now it is usually accompanied by bells or clanging, ( makes sleeping hard )

Daisees do you have MD ? your right if some one could find a cure they would be rich !!!

thanks for the answers

 

Poor you! It does look really as if changing line of work to fit within your condition would be a good thing. If I come up with some other information I will let you know.

 

micraflores
that would break my heart to do as this is what i always wanted to do and it took me until i was 33 to stop doing a job i hated to pay the bills, get my butt to college and become qualified, i adore my job ! :(

 

Hi Kaz you have this for some time now havent you .. there are surgery options available but they are quite invasive, but may be worth considering .. have you thought about joining a forum for Meniers sufferers. ... below are some of the options available .. regards Micky

he medications that are commonly prescribed for the management of acute vertigo attacks in patients with Meniere's disease.
A new implantable device, called the Meniett device, that delivers intermittent pulses of positive air pressure to the inner ear and has been shown to significantly reduce the severity of vertigo in people with Meniere's disease.

The surgical treatment options that are available for patients with Meniere's disease who experience severe, unremitting episodes of vertigo that cannot be controlled with more conservative treatments. These surgical treatments include:

• Endolymphatic sac surgery
• Labyrinthectomy
• Vestibular neurectomy

The risks, benefits, and complications, associated with the various surgical techniques that are used for the treatment of Meniere's disease.
An older treatment modality, known as intratympanic gentamicin therapy, that was abandoned for many years but has recently made a comeback as an effective treatment option for vertigo attacks in people with Meniere's disease.

 

thanks Michael
my doctor is very reluctant to go down op road as he feels that due to previous ops not having desired affects he is not hopeful that they would work, i am just fed up now i guess, i should just get on with it lol as you say it does eventually BURN ITSELF OUT

 

Kaz i know there are so many conflicting stories when it comes to Meniers .. you have to believe that you Will get better over time, i know you have already had this problem for some years now , but i really do think that your brain will compensate for the dizzy spells etc and it will eventually burn its self out .. i know exactly how you feel , i had the symptoms you have for 2.5 years .. i did go for vestibular rehab at the RNID clinic in Grays Inn Road London .. not sure if it helped, but you must try every thing possible <if you can > do you have the fullness feeling in your ears and are you still dizzy every day all day long, ... are the symptoms the same as they were as when it first started or have they slightly improved.. Micky

 

the tinitus is constant gets louder with different noises added as an attack builds, ear feels full 85% of time, the vertigo constantly makes me walk like i am drunk, dizzy/ spinning is usually when i bend or get up on good days and on bad days i only have to think about moving, when the nausia moves to actually being sick, i have been known to vomit for hours at a time, the headaches that accompany this leave me in bed for days at a time ( first year and half doc said it was migraine )
attacks in the begining were every 3 months but now are every 4/5 weeks and when they first started they felt like it happened all of a sudden but now i seem to feel the symptoms build up for two weeks before the attack the attacks are lasting longer and then feel drained for about 10 days after ..... then it starts all over again,
i have been back and for to local hospital for hearing tests ect but they just seem to be monitoring hearing loss, and because of my previous issues with this ear it was poor anyway, the loss is now compounded because of the extra tinitus, trying to work out what noise is real and what is as they say all in your head, can be quite frustrating,
thanks for answers and sugestions micky it kinda helps knowing i am not going crazy and YOU GOT BETTER lol

 

Kaz have you had an MRI scan of your head and ears ? if not then you really should asap .. they can see with an MRI scan if there are any abnormalaties .. ask for one with contrast as these are better .. at least when they tell you they cant see any thing abnormal , it may make you feel better in your self .. you really need to see a neurotologist as these are the best specialists when it comes to your particular problem.. when i was having all my problems i was doing special exercises every day for around an hour .. called vestibular exercises... involved eye movements, and ball co ordination, and walking up and down the garden with my eyes shut and counting the paces .. these exercises were to re- train the brain .. so think about it Kaz , as we gotta try every thing we can to get you feeling better .. i have sent you a link please try these exercises for some time and every day for as long as you can an hour would be good if you have the time , ... you have nothing to lose and every thing to gain .. the very best of luck
Micky
<LI class=g>Brain & Spine Foundation - Vestibular Rehabilitation Exercises




www.brainandspine.org.uk/.../vestibular...exercises/index.htmlCached - Similar
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12 Jul 2011 – This free fact sheet provides information on vestibular rehabilitation exercises for people with dizziness and balance problems.

 

Vestibular Exercises ​

Introduction
[FONT=Times New Roman,Times New Roman][FONT=Times New Roman,Times New Roman]You have a problem with your balance or equilibrium. Do not be afraid of your dizziness. Only you can build up the tolerance in your brain to overcome your dizziness. It is like exercise for muscle building. It requires regular, capacity-extending work to build up strength or tolerance. Keep provoking your dizziness many times each day, realizing that each purposeful, controlled episode of dizziness brings you closer to your last one. Once you have gained a measure of improvement and control in your practice sessions, seek out sports or other movement activities that have been difficult and spend increasing lengths of time on them until they no longer produce any symptoms. [/FONT]
[/FONT]How do vestibular exercises work? ​

[FONT=Times New Roman,Times New Roman][FONT=Times New Roman,Times New Roman]The purpose of these exercises is to improve one’s central or brain’s compensation for injuries or abnormalities within the vestibular or balance system. The brain interprets information gained from the vestibular or balance system. When there is an injury or abnormality in any portion of this system, the brain must be retrained or taught to interpret correctly the information it receives. Vestibular exercises merely stimulate the vestibular apparatus. This stimulation produces information to be processed by the brain. The goal in repeating these exercises is for the brain to learn to tolerate and accurately interpret this type of stimulation. By doing these exercises repetitively, one can even teach the brain to adapt to an abnormal stimulus. These exercises work in much the same way as the exercises skaters or dancers do to keep from becoming dizzy when they spin around rapidly. Stated simply, one must seek out and overcome those positions or situations which cause dizziness. Avoiding them will only prolong one’s convalescence. [/FONT][/FONT]
[FONT=Times New Roman,Times New Roman]<LI class=g>Brain & Spine Foundation - Vestibular Rehabilitation Exercises

[/FONT]

 

have printed out the info you have given and plan to book to see doctor, i am no longer happy with the lack of help/ advice given by them so far thanks Micky :D for the first time in a long time i am feeling more positive

( i guess in my line of work i always feel there are so many people who are far worse then me in their health that i havent complained enough to get my condition sorted ) LOOK OUT DOCTOR !