Author Topic: Doc says possibly Meniere's, but I'm unsure.  (Read 2311 times)

Offline mporter012

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Doc says possibly Meniere's, but I'm unsure.
« on: Jan 07 2016, 08:34 PM »
Went to ENT today. He was in a complete rush. Gave me about 4 minutes, then had me take a hearing test (which was normal), and then he gave me another 4 minutes, and said, "well it sounds like Menieres Disease" and told me not to eat any salt, drink a lot of water, and come back to see him in 3-6 months. He also said, "we could run a bunch of tests, but they are annoying, and the treatment is the same." Thank you!! What a huge help. Jesus.

I'm 31 and have had episodes of dizziness for 15 years, a few times a year. I've dealt with it, because it's never been that bad. I've had an anxiety condition since I was 16, and always blamed the dizziness on the anxiety. Also, my mother, who is very healthy at 60, has had vertigo for the last 15 years or so, so I've often thought it was genetic. I had a bad episode 2 years ago, which caused vomiting and a trip to the ER. That one was particularly bad. 2 months ago I had some dizziness one evening, which subsided by morning. A few days later I woke up dizzy, AND had some ringing in my left ear. The ringing returned a few weeks later, and has, unfortunately hung around, which is ultimately what led me to see an ENT. Interestingly, the ringing began a few days after seeing a concert that (possibly?) damaged my ears, and starting an anti-depressant, so I've chalked up the ringing to being connected to either the concert or medicine, and not necessarily the dizziness. I'm a musician, but never properly cared for my ears, not knowing that I was doing long term damage. So I do have hearing loss above 13,500 khz.

For dizziness, I mostly get these brief periods of disequilibrium that last 10-20 seconds, and then subside. This has been happening for 10-15 years, as I said. On occasion, they turn into actual spinning. The ringing is two months old. I do have some ear fullness, as well, which i began to notice some about 4 years ago, and sometimes it can be pretty bad. I basically cannot fully clear my ears. So from the doc's perspective, I have 3/4 Menieres symptoms, it makes sense.

From reading about Menieres though, and the type of "episodes" people have, and the hearing loss, and just considering the normal path a ''disease'' tends to take, the diagnosis just doesn't seem to fit. It just seems unlikely to me that this all started when i was 15. I'm not a doctor, and he is, but he just seemed to rush to a conclusion.

Any thoughts or advice?

Offline jojo

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #1 on: Jan 08 2016, 10:33 PM »
Hello mporter012

Welcome to the MD forum.

Sorry I can not spend much time at the screen at the moment because my MD is pretty bad at the moment.  I normally just come on here to have a quick read lately because I have been so poorly with it all.

I just wanted to say please do not take his advice regarding the salt.  That is horrendous advice and downright stupid in my opinion.  By all means do watch your salt/sodium intake but please do not cut it out all together as that would cause dangerous consequences for you.

Hopefully others will be along to give you help and advice. I know a few of us are pretty poorly at the moment so don't worry if you don't hear from many sufferers immediately.  Most of us manage to catch up with the site as and when we are able to and others are on here more often.

Take care

Jojox

Offline harry

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #2 on: Jan 12 2016, 01:35 PM »
Hi,

Meniere's is normally diagnosed after you have ruled out other conditions and after a period of time has elapsed. This is because MD is an unusual illness in that it effects different people in different ways. Normally you would display at least 3 of the main symptoms - Vertigo, Tinitus, fluctuating hearing loss ( permanent towards the end) and a feeling of fullness/pressure in the ear. For a doctor to consider MD and vertigo (rotational spinning ) must be present in all cases.

The tests are to rule out other things as there is no true test for MD.The hearing tests and sometimes a balance tests help to diagnose MD.

I would suggest you wait for your next appointment. Keep a note of what happens and how often then go back to the ENT clinic. Ask for the hearing and MRI scan and maybe a balance tests.

Then see what your doctor says. There is no cure for MD but there are a number of treatments depending on how severe your MD is and these are mainly focused on reducing the vertigo.

With regards to the salt diet.What he means is lower your salt intake. The recommendation is 6g for an adult with many people over this.Look at what you eat and pick lower salt versions of what you already eat. Don't add salt to your meal and avoid really high salt food.this will then take you down to the 6g level or a bit below. Don't go lower than 4g per day.

Good luck

Harry

Offline MissCheeva

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #3 on: Jan 18 2016, 11:47 AM »
HI, 

Jojo and Harry have said much of what I would say, I had various scans at the start to rule out other illnesses.  I do find that sometimes when I visit the ENT they are a little rushed and I don't always feel they have given my symptoms and issues enough consideration before deciding on the next course of action.  Reduce your salt intake (I have been told to keep it under 1g a day, which is really hard) and see if that helps.

Stress is also a massive contributor so try to reduce your stress levels if possible.  I do meditation to help in that area.

The fact that you have been suffering for 15 years with balance issues might just mean that you are more prone to Menieres.  Maybe it wasn't Menieres to being with but that is what you have now.  I don't know I am no Dr, but the symptoms you are getting now do seem more in line with Menieres.

When I first got diagnosed the low salt diet, no caffine and a low dosage of betahistine worked for a year or so.  See how you get on, but make sure you go back to the ENT when your appointment comes up.  They should at least run some tests so you know for sure as you could be going through all this effort (low salt is a pain) for nothing. 

I hope this helps
MissCheeva

Offline harry

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #4 on: Jan 18 2016, 05:36 PM »
Misscheeva. 1g of salt per day is TOO LOW  the body needs at least 2g to function and you could be doing yourself harm by going that low.Please reconsider your diet immediately.

Lower salt is good for the body in general so it should be kept under 6g per day (which is the recommend amount for an adult) but not lower than 3g. There is no real proof that it works and I was on a low salt diet for 3 years with no real effect so came off it. I simply ensure that I do not eat high salt food and choose lower salt options this easily keeps me about 4 g per day.

Harry

Offline jojo

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #5 on: Jan 18 2016, 09:20 PM »
I totally agree what Harry has said about not lowering your salt too much.  Seriously it is dangerous and it can lead to serious consequences for you. 

As Harry says keep it under 6g but not lower than 3g.

I see low salt/sodium mentioned on here all the time and it is worrying when MD sufferers take it to extremes in order to help rid themselves of this awful condition. Seriously you will not rid yourself of this condition but you will end up with other serious health problems. So please do be careful when it comes to your salt intake.

Take care

Jojox 

Offline chrissieg

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #6 on: Jan 18 2016, 10:34 PM »
There is often confusion about this recommended level. I am guessing that Misscheevas keeping under 1 g is actually the sodium recommendation ( 1000mgs which is usually just called 1g) which equates to 2.5gs of salt value which is the usual amount MD sufferers are advised to try.
Most packaged goods now give both values and salt is always 2 1/2 times the sodium amount quoted. Its easiest to just keep with one value or the other and , in my experience salt is easier to count than sodium.

Keeping under 2.5 is hard on a daily basis . I did it for 3-4 years with good results. It basically means cooking everything from fresh and rarely eating out. I have now relaxed that regime as I have been better but try to keep under 4gs on a daily basis but allow myself to eat virtually normally at restaurants or on holiday. 4gs is sustainable long term and at least under the "normal" amount of 6gs and probably considerably less than most people eat.

Whilst I agree that there seems to be little research about its efficacy, it is the first recommended step all over the world and , consequently, I feel its worth a go. In addition, I felt that it stopped me feeling just a victim of this condition and allowed me to feel I had some control over its progress, a helpful psychological advantage.

Chrissie
Chrissieg

Offline MissCheeva

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #7 on: Jan 22 2016, 04:25 PM »
Misscheeva. 1g of salt per day is TOO LOW  the body needs at least 2g to function and you could be doing yourself harm by going that low.Please reconsider your diet immediately.

Harry

Hi Harry,

I appreciate your concern, but this is the diet my ENT specialist has told me to be on since the start (3 years ago). I haven't just done it off my own back.  I did query the health aspects with him and he said that the body only needs a very low amount of salt to survive and that my body will adjust accordingly.  I have been on this diet now for 3 years and I haven't noticed any health issues other than reduced vertigo attacks.  It definately works for me.  When I have had a high salt meal, I have then experienced vertigo in the following week, normally 3/4 days later.

To be fair I monitor my salt intake from packaging and what I cook myself.  All food has salt in differing degrees and when I say my salt intake is around 1g a day the reality is probably nearer the 2g mark.  I am not telling anyone to do this diet without advice from a medical professional I just wanted to share what I am doing as it helps me.  Anyone thinking about doing this should only do this  after talking to a Dr.

MissCheeva

Offline MissCheeva

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #8 on: Jan 22 2016, 04:29 PM »
Hi Chrissie,

Sorry no it is 1g of salt, not sodium.  That is what I was told to do and that is what works for me.  It is tough to do, but it gives me some of my life back.  I will do more research to see the health issues of this and I will discuss this again with my ENT specialist next time I visit, just in case he has had a change of heart.


MissCheeva

Offline MissCheeva

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #9 on: Jan 25 2016, 11:53 AM »
Hi Harry and Christina,

I have done some research and can see that you are right, there are possible health issues with doing a low salt diet.  I just wonder why my ENT specialist has insisted that it won't be a problem.  Anyway for the mean time I am going to increase my salt intake slightly so I am nearer the 2.5g mark.  I will discuss this with the ENT specialist when I see him next. I just hope I don't get any vertigo attacks.

Thank you for your comments.
Diana

Offline jojo

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Re: Doc says possibly Meniere's, but I'm unsure.
« Reply #10 on: Jan 25 2016, 12:00 PM »
Hi MissCheeva

I am so glad that you have decided to increase your salt intake.  Fingers crossed for you that you do not get any vertigo. Although saying that it may not be the increase in salt that causes the return of vertigo for you if it does happen.  Sometimes it just happens for no reason at all.

As you have said have a chat with your specialist about your sodium because he/she really should not be telling his/her patients to lower their salt that much.

Take care and hope all goes well for you.

Jojox