Sunday, May 15, 2011

Meniere’s disease and caffeine

On any website or blog that is about meniere’s you will find various ways to lessen the effects of this disorder. One of the most common remedies is watching your diet. We all know about salt and how it is bad for you because it retains fluid in your inner ear. Of course for some folks (including me) cutting back on salt really doesn’t help much. And you are also to cut back on alcohol especially if you taking certain medications that make you drowsy. Tobacco is another no-no. last but not least is caffeine which I have recently cut down on.


Why is caffeine bad for meniere’s folks?

According to Dr. Hain website “Caffeine has stimulant properties that may make your symptoms worse. Caffeine also may make tinnitus louder. Large amounts of caffeine may trigger migraine.” That makes sense because coffee or tea or anything with caffeine can really get you hopping.

Over the past month I have stopped drinking soda pop which contains a lot of caffeine. I just felt that it was time for a change and it probably would do me good whether it helped with the meniere’s or not. I was surprised to see how easy it was to stop drinking it because I drank way too much every day.

Do I feel better?

I have noticed a change in the way I feel but I can’t really say whether it has helped my meniere’s or not I will give it a little more time before I make that determination.

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Thanks

40 comments:

  1. I was just diagnosed with menieres last week and Im not quite sure im buying it. I had an abnoram ENG, as well as brainstem tests and hearing tests in my left ear. I have had ringing for over 40 days now and in the beginning I was very unsteady walking Im happy to say that has improved however I still sway a little each day. I have a heaviness in my head that I just cant describe however my MRI came back fine. Im going to see my medical dr. this diagnosis came from and ear, nose, throat and neck specialist. Im hoping its not my heart...its scarey. I am on a water pill and a vitamin...lipo flavonoid....the medication only started four days ago. I am trying to cut back on caffeine and salt as was told to me also...and stress but I think that is inevitable. I will keep reading all of your posts...:)

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  2. I've had tinnitus associated with Meniere's since first diagnosed in 2002. Since that time I've not had a day without tinnitus. After the initial hearing loss for about a month in my left ear only, my hearing returned to almost normal in that ear, but the ringing became a constant. Some days are worse than others but nothing I've done has stopped the noise. Some days I think it must be loud enough for others to hear! I've cut down salt which I rarely used prior to dx, (never used table salt ever), stopped drinking and cut out caffeine. Nothing has helped. I cannot figure out after nearly 9 years what makes it louder and what makes it less so. Ann

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  3. I find that drinking one (large) cup of coffee in the morning doesn't really cause me any prob's. I keep it at only one though, and I quit drinking pop.
    I also take Maxide to drain fluid.

    UPDATE: I am now over 3 months post sac decompression surgery. Happy to say that the worst of the rotational vertigo is still stopped. Sadly, the tinnitus remains with me..seems worse, as is the pressure in my ears and head.
    I still have nystagmus with small MD attacks..and strangely I have noticed that my eyes seem to jump/feel like they won't quite hold still a lot. Makes me dizzy.
    Has anyone else been experiencing this?

    I am wondering if anyone is having trouble with their Doctor insisting they are depressed? Mine is doing that..but the fact is that(thank God) I do not feel depressed, and told him so. If anything, I am trying to start back to work and am keeping a hopeful outlook. I don't know what his deal is..it's strange.
    The last thing my poor brain needs right now is more Meds!
    Hang in there everyone.
    Lauri

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  4. hello
    anyone who wants to take menieres seriously which we all do as we are here:)
    should go nowhere near any stimulant.
    choclate caffeine and cigaretes are a complete no no.
    the only stimulant i think is ok is actually alcohol in very low doses; ie two glasses of wine.

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  5. From the comments it seems that low salt and stimulants don't have much of an effect on tinnitus.
    Does anyone else think that?

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  6. For me, salt and stimulants are fine in small amounts. I have a cup of coffee in the morning every day and it doesn't affect me.

    But if I have more than 1-2 cups of coffee or anything with caffeine in it, my symptoms of tinnitus, full ears, dizziness start becoming more noticeable.

    And I never really eat a lot of salt, but my worst and pretty much only really bad attack of vertigo was the day after I had a plate of the saltiest fries I think I have ever had in my life. They were absolutely covered in salt and I honestly don't know why I ate them. But I did. And I paid for it the next day with vertigo. I hadn't done anything different in my routine other than eat those fries and I'm convinced it was those salty fries that set it off.

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  7. I don't think I've seen anything that has an impact on tinnitus. And many people think the low-salt and low-stimulant diets are not terribly helpful, either, although they work for some people in cutting down on the vertigo. For me, the diet doesn't seem to have any impact. Although I do believe that alcohol has a strong effect on vertigo in my case. So I am living more or less alcohol-free. I also keep to a low-salt diet, although I don't try to make that NO salt, and I limit my intake of stimulants pretty severely.
    I am still dizzy most of the time, and I have nystagmus all the time. I'm going to see a neuro-ophthalmologist next week at my ENT's suggestion. My personal theory is that the ongoing dizziness and nystagmus have to do with the labyrinthectomy last October. This after-effect seems to be very common following the laby surgery. Wish I had known that before I went under the knife, although I might have gone ahead with it all the same.
    Bottom line: Nothing works for everybody all the time. Meniere's is the world's greatest crap shoot.

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  8. Nothing seems to help my tinnitus.
    It's 24/7, and has been since the day it began.
    I have noticed however that if I eat TOO much salt, or get quite over-stressed mentally, emotionally or physically that the tinnitus revs up and can really get to a roar.
    I often notice that my heart rate and BP are raised at that time, so I'm wondering if the raised BP is raising the ear pressure resulting in the worsened tinnitus?
    Say...does anyone know if the "vertigoheel" I've been hearing about helps tinnitus?

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  9. David,
    I believe when we talk about stimulants, each of us will respond differently- as we do on medications. For instance, Maxine did nothing for my MD symptoms. I'm sure that the supplements that help me are some form of "stimulant" in of themselves. I can drink soda pop and tea without symptoms, but give me a cup of coffee and nausea runs ramped. High doses of salt AND sugar over a period of time will increase the frequency of my attacks. The tinnitus is one symptom that is the least noticeable when it boils down to diet. Although I can't comment on cigarettes, I know that alcohol is probably the only substance (depressant) that will trigger an instant attack for me. MD may be amplified by the typical side effects of alcohol consumption (loss of balance, nausea, dehydration), who can really tell if these attacks aren't truly drunkenness I'm feeling? Great thread, as always!
    Holly

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  10. Hi!
    I drink coffee every day - but the same amount. My body seems to be used to this amount. I keep a low salt intake - we don´t add extra salt when we cook, I don´t eat salted snacks and so on. Alcohol is ok if I take a glass of wine or a beer, not more. Nothing of this effects my tinnitus. What I think is the worst for the dizzieness and tinnitus is stress. Emotional stress or the stress of being too busy and not getting the time to relax in between. I think we all have to do our own trial and errors to find out the best for ourselves. But living as healthy as possible is a good thing not only for the Menières.
    Susanna

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  11. ive had vertigo for 2 years even though it's not related to MD but the dizzy symptoms are quite similar. i realize that cutting off sugar, reducing salt, rid of carbs really helps my vertigo. ive also been able to swim and exercise with no problems. may be a little vertigo but it's controllable! plus cutting off caffeine completely helped alot! i've been eating a lot of vegetables and meat only. carbs are at minimal. plenty of water and cut off all sugary treats including sodas ice cream candy cakes etc.. stop all alcohol and tobacco products!i hope you get better soon!

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  12. thanks for the great comments
    David

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  13. Hi David -

    I am a 32 yr old woman who has had MD for 14 years. I finally found a blog that I can go to that is well written and informative. What a relief. Can you please tell me how to subscribe to the RSS feed? I can't figure it out.

    Thank you,
    Samantha

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  14. I'm glad you've blogged about this! After a rubbish weekend I've been doing a bit of research about diet and have decided to try and give up caffeiene. This is pretty hard for me as I'm a complete tea addict! I'm starting by trying to switch to decaf firstly and seeing where I go from there!

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  15. Lisa, I switched to decaf tea after many years of being a tea addict. Giving up the caffeine was a little difficult at first, but after a little while I was fine with it. And there are so many great decaf teas out there these days that you won't feel deprived once you adjust to not having the caffeine in your system.

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  16. Hey David,

    I have Meniere's now since about 2 years and drink 2 cups of coffee a day. That is actually pretty low being Italian. Anyway, thanks for drawing the attention to this. I think coffee is a factor and get's easily forgotten. Will try to reduce my intake.

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  17. Good luck Samuel! I am still having a time cutting back on caffiene.
    David

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  18. I was diagnosed in January after 2 major attacks last year. I always have the ringing in my ears, but eating only 1500mg of sodium a day has kept me symptom free.That means reading labels on everything I eat, not eating out much as there is nothing low sodium out there except pasta with no sauce,and being extremely careful. Every time I mention how I have to watch my sodium, people say, "Oh, I never use salt on my food." They have no clue. Foods are just loaded with sodium. The salt shaker is irrelevant.

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  19. You are right salt in hidden in alot of things
    thanks for the comment
    David

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  20. I was diagnosed with Menieres around 15 years ago and eased up on the caffeine which seemed to help. Around ten years ago for one week I allowed myself a cup of European style decent strength cup of coffee a day and the following week had a severe Menieres attack. I have not touched a caffeinated coffee since. Most decaffeinated teas taste disgusting, but Redbush (Robois) is naturally caffeine (and tannin) free, so I get through at least half a dozen cups of that a day (I am English, after all). I also watch my salt intake very carefully, particularly wary when buying processed foods / ready meals. The result has been no attack in a decade, but one risks the logical mistake of 'post hoc ergo propter hoc'.

    As to giving up alcohol, that is a step too far but my modest intake seems not to have triggered an attack.

    Roger

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  21. Hi Roger,
    I know what you mean about decaff teas, it just doesn't taste the same. I don't drink coffee and I just gave up soda drinks but the tea is something that I can't give up either.

    I wouldn't worry about having a drink now and then because it sounds like you have your diet under control.

    thanks for the comment and stay in touch
    David

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  22. Just came upon your website, just this weekend gave up coffee, I only drank 2-3 glasses of iced coffee per day, but perhaps it was enough to keep my meniere's going crazy. I had 4 attacks last week, so far I have not had any in the past two days, feel like I may be getting my life back, and back to my bike riding. yay....I haven't read through all the comments, what have you found since giving up the coffee in May?
    Thanks,
    Karen

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  23. Hi Karen,
    My caffeine problem was always soft drinks and ice tea not coffee. I cut out the soft drinks but I still drink the tea.
    Good luck with eliminating the caffeine and you might also want to look at cutting back on the salt too.
    thanks for the comment and stay in touch
    David

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  24. Hi, diagnosed in April.. I've had 3 attacks 6 and 9 weeks apart, the worst being the 2nd. Was off balance and that is when the tinnitus started and what got me to the ENT. As soon as I implemented low salt diet and decreased my coffee consumption my balance came back within days. The ringing is constanst since it started and is more of a static or whoosh sound. Limit caffeine to a strong cup in the am and the occasional iced coffee in the afternoon. I do still eat chocolate sorbet at night. So far all has remained constant. i take klonopin if I start to feel "off" and Maxide-25 if I am going out to eat or to a party with unsafe food. Arches Tinnitus Formula (gingko, garlic and zinc) and 2000 mg of Vit C a day along with Vit D and Vit K when needed. Will be starting John of Ohio's supplement regime soon, including the lemon bioflavanoid.. (look him up, doesn't sell anything, just lists what has helped him with MD) so far minimal impact on my life other than the loss of the social aspect of eating out. Thanks for this blog!!

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  25. Hi Sukie,
    I have heard about John of Ohio regiment, let us know if it is helping out
    thanks
    David

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  26. My doctor diagnosed me with MD three weeks ago. After reading everyone's comments, I am not sure if I have MD or not. I have the occassional off-balance feeling but not too often. My main problem is the stuffyness in my right ear. It always sounds plugged up. When I swallow I can hear a slight popping sound and can hear myself breathing (which I know I am not a heavy breather). I take a daily water pill and I have reduced my sodium intake to 1200 mg/day with no caffine for one week now and my ear seems to be worse. Has anyone else ever encountered this? I am just shocked that the syptoms could get worse after following doctors orders. Any input anyone has would be greatly appreciated. Thanks!

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  27. The hearing yourself breathing part sounds like patulous eustachian tube, which I developed about 10 years ago when I lost about 20 lbs fairly quickly working at a high-stress job. But in addition to the loud breathing sounds and popping noises, my own voice was very loud in my ear whenever I spoke. Do you ever have that symptom? I could make my hearing go back to normal - temporarily, anyway - by bending way over for a couple minutes so that gravity could close up my baggy eustachian tube. Anyway, I left that job and gradually gained back some weight and the PET went away. (Till this summer, that is. Seems the 20 lbs I have lost again - gradually this time -since being diagnosed with Meniere's and following a low-sodium diet may have brought it back.)

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  28. My ENT doc thought I had a problem with my eustachian tube but couldnt confirm. Which is why he sent me to my specialist. The specialist seems to believe that is not the problem and that I have MD. I have not lost rapid weight. When I bend over and swallow tht tube opens or closes and my ear is fine until I stand upright and swallow again...then it closes again. I do sound loud to myself most times. Yesterday I caved and had coffee at the office and my ear seems to be less "stuffy" then following the diet suggested by my specialist.

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  29. I just wanted to say that I was just diagnosed with MD yesterday after about 3 months of being sick every third or fourth day for 3 hours at a time. I was trying all sorts of things in my desperation to feel better and I started taking Gingko Biloba and the dizziness and tinnitus stopped the next day. My doctor said it was just probably just a fluke but who knows, I don't miss a day in taking it now though.

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  30. I hope that it continues to work for you
    thanks for the comment and stay in touch
    David

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  31. I’m a 48 year old male and have had MD for roughly 13 years now, with first noticeable symptoms occurring in my right ear in 1998. Initial issue was fullness and some hearing loss in the affected ear. January 2000 I experienced my first vertigo attack - lasting nearly 2 hours. Fortunately, since that first attack, I only had 5 or 6 of these extended vertigo episodes, all in the first couple of years from the onset. They did eventually morph in to short 15 to 30 second vertigo bursts and over time have almost subsided altogether.
    Tinnitus has been constant in my life since 2003. Through this entire time I tried the full gamut of diuretics, nasal sprays, MRI’s, CT Scans, etc., but had accepted that this would be a part of my life (bad right ear, although no vertigo). In 2008 I noticed the left ear going, so decided to go back to a specialist. While I still had not experienced any vertigo with the new ear affected, hearing loss and tinnitus had now become very troubling in my life. At first, taking Prednisone helped tremendously – in fact temporarily restoring some of the hearing in my right ear! Because of this there was some thinking that my MD was in fact AIED (auto-immune ear disorder). Over time, however, it became clear that steroids were not working, as things continued to cycle and progress for the worse. Again, still not having the vertigo, but suffering with on-again, off-again hearing and non-stop tinnitus. I bought hearing aids, but these typically only made the distorted, muffled sounds louder.
    In 2009 I was offered a position leading a business in Australia. I must say that I was hesitant to take this role, as I was having difficulty communicating. I have seen at least three specialists in Australia for Menieres. The first started me on an extreme low sodium diet – i.e., less than 700 mg’s intake per day. This only worked temporarily. Eventually I was introduced to something called Urea in July 2010. Read about it here: http://www.perplexingproductions.com/nswmsg/urea.htm . It tastes awful, but the first day I took it I noticed a positive surge in my hearing. I’m not sure what the long-term health implications are (all blood and kidney tests have been fine after 1 year), and I’ve taken it daily since. While I recently have had some setbacks in my hearing, the Urea still helps me get through the day. I also get noticeable clearing and boost in hearing after a daily cardio exercise (I’m taking 30 minutes all out sweat). As a side note, aside from hearing and tinnitus issues, I’m in the best shape I’ve ever been.
    I’m remaining optimistic that I will eventually find the right answer, but understand that I will probably always have some permanent hearing loss and tinnitus as a result of all the years I’ve suffered with this terrible disorder. I really think the experiences and symptoms are a little different for everyone. That means the answers, or right combination of answers, are probably a little different for everyone as well. By the way, having a very supportive spouse has made all the difference!

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  32. I wrote a post about urea on sept 26, 2010
    http://www.mylifeandmenieresdisease.com/2010/09/menieres-disease-and-urea-crystals.html

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  33. I did not believe that sodium would affect my ear so the other day at lunch I had sushi with soy sauce and that afternoon I thought I wouldn't make it home in the car....dizzy. Of course, I don't know if that was the cause, but now I try to keep the sodium intake in balance and not have a large amount at any single meal.

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  34. Hi Joan,
    I have to be careful with certain sauces like soy also.
    thanks for commenting
    David

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  35. Hi,
    I've had several dizziness attacks over the years (the first in the mid 1980s) where I had to stay in bed part of a day, and the next day I was always fine. I first noticed ear ringing in 1998. The doctor diagnosed it as simple hearing damage, as the hearing in my left ear was somewhat worse than the right. I didn't really have other Meniere's symptoms at the time. The ringing has continued at various levels in the left ear ever since. As time went on I started noticing dizziness when lying flat on my back or bending forward. I've also had fullness in the right ear on regular occasions, although not in my bad ear. I returned to the same doctor in 2009, who diagnosed it as Meniere's. It is a light case as it rarely interferes with normal life - just minor symptoms when in a bad position or loud ringing in the left ear from time to time. Also the hearing loss in the left ear continues to get worse. I've tried reducing salt, staying away from caffeine, and other diet changes. I think caffeine is the only change that has made any significant difference.

    I'm very interested in the connection between Meniere's and caffeine. When I first noticed ringing in 1998, it was a sudden event. I'm an audiophile and very aware of background noises. I'm almost certain I wasn't hearing anything unusual earlier that day. I went to sleep that evening, woke up a little later, and I could hear loud ringing in the left ear. It sounded like running water. I thought back to what I had eaten that day. I did have Mountain Dew that lunch. I've since noticed that ringing symptoms are much worse the evening and overnight after I have Mountain Dew. I've tried Coke and Pepsi as well, but neither one seems to have that much effect on the ringing. I know Mountain Dew has significantly more caffeine, but I'm wondering if another chemical is contributing to the problem, for example sodium benzoate.

    Has anyone else noticed a connection with certain drinks, other than just those with caffeine? Also, has anyone noticed a connection with getting motion sickness? I frequently get motion sickness when riding with someone else in a car. I love taking home movies, but am frequently unable to watch them due to motion sickness. I'm wondering if the susceptibility to motion sickness, which I've had all my life, is somehow tied in with Meniere's. Perhaps the same things that trigger Meniere's also contribute to getting motion sickness.

    Thanks for the blog - very useful information!

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  36. hello anon
    refering to your post and your last paragraph, you bought up a topic that i wanted to bring up and that is motion sickness and funfare rides.
    when i was young i was not one who could really stomach reading in a car or funfare rides that go round and round.
    i do think that there could be a correlation with menieres sufferers and the aforementioned.
    regards
    ali

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  37. Here's a crazy observation: When I was a kid, I could go on ANY ride, climb to any heights, and never get dizzy or sick. Now, I can't turn around too fast without feeling nauseated and grabbing something to hold onto while I stabilize.

    I think there's a very strong relationship between motion sickness and Meniere's. What I can't figure out is why I was FINE with any kind of movement when I was a kid, but am now in such trouble over it. *sigh*

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  38. Oh, and regarding drinks, I find that caffeine and alcohol are both serious triggers for me. I avoid both as much as possible.

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  39. hello peggy
    there goes my million dollar observation that would have made me a millionaire:)
    merry christmas to you all
    regards
    ali

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  40. Sorry, Ali! I do think there's a strong correlation. But I guess some people grow into Meniere's, as many people seem to grow into allergies.

    Another interesting note: My mother is now being treated for vestibular issues by a physical therapist. I've often wondered why no one else in my family had Meniere's, when it appears to run in families. Now I think maybe my mother does have the tendency. She went deaf in only one ear at a young age, and her balance has be terrible for years. H'mm.

    Happy holidays to everyone on the blog, too!!

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