Meniere's disease and headaches

Hi, I'm a 32 year old female and I've recently been diagnosed as having Meniere's disease.  I have a roaring sound with lots of pressure in my ear while I'm sleeping, fullness and pressure in my ears, vertigo attacks (not sever enough to make me vomit just nausia).  My question is I also have been getting more headaches, sometimes they are stabbing pain, is this normal to those who have meniere's?  I've been getting headaches in the front of my head, but stabbing headaches towards the back.  thanks Julie

[Hope001]

Hi Julie,
I was told I might have Miniere's Disease when I was in my mid 40's (I'm now in my mid 50's).  Started with dizziness mostly.  And I was told little could be done about it - only come back when I have a spell.  Job, children and life didn't always allow me to go back when I had a spell.  The spells wouldn't last long enough for me to get an appointment and get there while having the attack either.  Now the spells are worse with headaches, drowsiness, full ears, etc., etc., etc.  I've been back to doctors and had many tests.  One doctor says, "Who told you that you have Miniere's Disease?  That's a rare disease.  I doubt you have that."  Another doctor says, "You have the hearing of a 40-year old and a sure sign of Miniere's is faililing hearing."  So I come away feeling good that possibly I don't have Miniere's Disease, but then they don't have an answer for my symptoms.  I continue to suffer the symptoms and have nothing to do but live through them.  You are young and I pray that you find an answer to your problem early!  If you do, please let the rest of us know.  If you read the archives on this site, you will see that many are suffering with these same symptoms.  However, Miniere's Disease supposively only strikes 1 out of 2000 people.  Your stabbing headaches at the back of your head sound more migraine related to me.  But I'm just a normal person and have no medical background.  I do not suggest that you ignore your doctor - only to make you aware that many are going through these same symptoms with you.  Misery loves company!  (P.S.  Acupuncture has been suggested to me on this forum and I am thinking that is the next thing I will try.)  Best of luck.  

[A.M..]

I too have been suffering with dizziness for the past 4-5 years. When it first started it was like small little wisps of dizzy. I would hold whatever was around to steady myself. They would last only a few seconds, but was kinda scary. Then one day, it got so bad that I could not stand up. My husband took me to emerg, and that is when they said it could be Menieres disease. When I went to my family doctor and discussed options, he told me that bouts of this usually are worse in the spring and fall. I got a prescription for Serc, and that really works. I keep it on hand all the time. At home, at cottage, and in my purse. I dread the start of fall and spring, but there's nothing I can do about it.
Serc is actually for this disease. Talk to your doctor and see whether that would help you

Good Luck

[Caltexsota]

Hi Julie,

I am a 43 yr old female who has been dealing with meniere's for almost 3 years now. At first the doctors would not diagnose it because I didnt have the ringing but I finally found someone who knew that that wasnt always a symptom and I had endolymphatic sac enhancement surgery last year on my left side. It did improve me a lot but since then I have had a headache almost everyday and when I went back to this doctor yesterday (who at first I thought understood) to tell him about that and an awful salty taste that I was experiencing he had the balls to yell at me that there was "no pain with meniere's" quote/unquote. Needless to say I am looking for another doctor. Keep fighting, I personally dont believe that the back pain is migraines (unless that is something you get). Doctors think they are god sometimes and though they might know the mechanics of the disease they have no clue as to what it is REALLY like.

Good luck!

[k8knox]

hi my name is katie.... im 22 yrs old...and my doctor really doesnt think i have meiner's disease.. but my previous nuerologist thought i might... they dont want to tell me thats what i have... for whatever reason... i know it's rare.. but damn i think it's what i have... i was living my day to day life fine... until one day i just got dizzy and my vision got weird... i got all these tests done, and mri's... they just found a slight inner ear injury... there has to be something more... i get very very very bad headaches... or migraines... i have pain in my sinus area and forehead, and back of my neck.. it usually happens when i get anxious.. i feel anxious a LOT... i dont know why i guess because of the way this inner ear problem makes me feel.. because i was never like this before...im taking water pills which control my dizziness a lot.. i almost never get dizzy any more... i feel out of it most of the time.. like my world is just not the same... i dont know if it's from the light anti depressant im on or the inner ear... im pretty sure it's inner ear.. because even before i started taking them... i felt just so weird.... im so tired of this...i found this site because im looking for answers... and a really good doctor.... thanks for your posts.. i feel like im not completely alone...thanks

Katie

[Heartofgoldie]

i  have been battling with doctors too for years. My goodness if you are an ENT  or a Neurologist you would think you could figure out why many of us have balance problems and crackling and fullness in our ears.  It gets to the point like Hope said that you feel you just have to live with it. They can cure so many things in this world but not these ear problems. It is so frustrating. In most cases people don't even have any nasal congestion like a cold etc and just wake up one day having dizziness and balance problems out of no where. Then you have doctors who say it is psychological.  Well it sure ain't psychological to me darn it!!!   Just cause you don't have all the symptoms of Menieres does not mean a person does not have it . Some doctors are QUACKS they just read the so called symptoms in a medical book and if you don't happen to have them ALL you don't have that particular disease.  Of course we feel anxious when we are dizzy and feel like we are going to fall over .  Who the heck wouldn't. Lets hope we get some comments from a good ENT on here . Good luck everyone. My heart is with you!  Know you are not crazy and that their are many of us out there with the same symptoms and never get the right answers.

[shahjahan]

I am about the same age as yours and have recenlty found that I am also a suffrer of Minere disease. I have had this probelm for about 14 years. I used to get episodical dizziness atacks in the beginning which would last for few hours to a day. I used to tke Stametil for the dizziness treatment and it worked. However some 6 years ago, I started feeling roaring and ringing noise in one of ears. Then one day I had such a severe vertigo attack that literally everything looked spinning around me and could not remain stand on my feet. I tired stametil then, but it didn't work. To cut the stroy short, I was given serc and believe it or not it did work.

My current condition is that I get one attack in a year and I have noticed that it always happen in the winter season. The question is why???? My personal study conducted on myself suggests that its mainly to do with the water intake. In summer my intake of water is quite good which decreases significantly in winter. You should be drinking at least 8 glasses of water a day. If possible cut all the soft drinks such as coke, pepsi, sprite ect.

In your case I would aslo suggest that you should not be taking more than1000 mg of salt a day in your diet.

I would aslo suggest to cut all the caffeine that would definately eliminate almost all of the ringing and roraring noise in your ear.

Wish you all the best.
    

[FinallyADiagnosis]

Hello....and thank you in advance for being a group of people who will understand when life has been like. I am a 36 year old female w/ chronic ear trouble. By the time I was 5 mo. old I had such bad ear infections that I blew out my eardrum and entire middle and inner ear. When I was 17 the doctor (my hero) performed a Radical Mastoidectomy w/ a Temporal Flap. In other words, he cleaned out my ear for once and for all and sewed my ear shut with the Temporal Muscle from the side of my head. For the past 19 years I have been having issues with the remaining ear. Several doctors could not find anything wrong and kept sending me home. Finally I went back to the specialist's office (that performed the earlier surgery) and was told I have a textbook case of Meniere's in the remaining ear. I was so relieved to know that not only I wasn't imagining these symptoms but that someone believed me and was enough of a professional to investigate. All I could do was sit in fromt of this doctor and cry. In the last 24 hours I have been reading everythng I can get my hands on regarding Meniere's. The dizziness, low tolerance for loud noise, pressure in my ear, head in a "fog" kind of feeling... Not to mention the fact that I have hearing loss in what used to be the "good" ear - the only ear!!
I am relieved and scared at the same time.. Thanks for listening!!

[FinallyADiagnosis]

I'm not sure where you are but if you ever get to Florida you should try to see either Dr. Loren Bartels or Dr. Christopher Danner - these guys are ANGELS!
They are at the Tampa Bay Hearing and Balance Center @ Tampa General Hospital. Good Luck to you and thank you for letting me read your story.

[Wear/a/Jimmy]

Men. D, is not something easily diagnosed, nor is it something that should be diagnosed at the first visit with an MD.

Some of the symptoms mentioned are classic:

1) Low freq tinnitus (roaring or train sound has been reported)
2) Fluctuating Hearing loss (severity associated with vertigo)
3) Vertigo
4) Ear fullness
5) low freq hearing loss

and something that is not on the list, but I think should be....  occurs more often in the female population than male.

The reason you should not be diagnosed at the first visit, is that comparative hearing exams should be taken.  Symtomatic, a symtomatic, slightly symtomatic etc. If a hearing fluctuation is evident, and also the classic low freq. hearing loss is evident....   folks the odds are extremely high, you have Men. D.

[myiasdo]

Hi,
I too have MS and one of my problems is awful headaches.  I prefer not to take narcotics (stubborn).  My neurology suggested I take Vitamin B2 100mg 2X day. Vitmin B2 is ribroflavin and you can find it as a additive in some processed foods plus not processed foods.  I swear this has helped so much I'm telling everyone I run into.  The pain in my neck and shoulders has even gotten better.  If it's only in my head to be it but it works.  The nausea and vomiting from the headaches is even better.  Try it. It's water soluable so it doesn't bother your liver.  Bascially, what your body doesn't need is flushed out in your urine. I noticed a difference in about 2-3 days.  I also have noticed if I am late taking the vitamin I can feel the headache coming on.  I do still have a very mild headache, but nothing like I was dealing with.  This stuff is great.  It's worth a try.
Best wishes
myiasdo

[myiasdo]

[myiasdo]

Hi me again,
Just wanted to also tell you to pull up vitamin B2 and see what if says it is used for.  A couple of which are migraine headaches and MS.  Cool beans,
Wish I knew about this sooner.
Best wishes,
myiasdo

[JulesLynn]

I stumbled on this site quite by accident.  I was sent to the "meniere's expert" and he diagnosed me with "pre-meniere's".  I know what a joke, how can anyone be pre- diseased.  He did nothing for me except offer me a sedative and diuretic.  I asked him dozens of questions about what could be causing this and he'd just smile and shake his head 'no'.  Well, I ended up getting so bad I had to take a medical leave from work.   I finally found some answers in another forum called "enough" (endolymphatic hydrops).  There is a book out by a Dr. Gacek called the "Viral Neuropathies of the Temporal Bone".  Please check out the info.

[dizzyhead]

so I have been told that I might have meniere's from an ent.  I have bad dizziness that is keeping me from doing things that I want to, I also have pain in my ears stuffy head feeling that gets really bad and that fuzzy headed feeling but what I was wondering if anyone else ever feels like their arms and legs are numb?  When I touch them I can feel them so it is not really numb but when I walk it feels wierd and so does my arms.  This only happens when I am having my episodes.  I also have allergies and sinus problems. My family thinks  I am crazy and a hyopchondriac and I am at my whits end with this because it makes me feel like something is really wrong even though all doctors say everything is fine.  I have also lost 23 pounds and my blood pressure and blood sugar is finely normal again for the first time in awhile.  Anyone have any ideas or comments?  signed dizzy headed

[mmp1951]

My son periodically has a weird sensation in his ear, gets nauseated and dizzy and his hear hurts with pronounced loud ringing noises.  It only last for a few seconds but he also has hearing loss that is not constant.  What could this be?  His ENT doctor can't find anything wrong.

[peggles]

I was diagnosed with Meniere's when I was 35.  The otolaryngologist (the specialist of ear specialists) told me it was probably food causing my symptoms.  I did not have the time to keep up with the doctor visits.  So I experimented with diet.  I have a brother who had symptoms of celiac disease and recommended the gluten free diet to him - it cured all of his ills (intestinal bleeding, asthma, rashes, etc.).  I then assumed that maybe gluten was my problem.  It worked.  I went from having Meniere's attacks almost weekly for three years to having none at all.  You have to follow the diet 100% - no cheating, including checking medications for gluten (call your pharmacy).  I strongly suggest giving this a try.  Gluten intolerance is a common problem.  Anyone I've recommended the diet to has had much improvement in their health.  The other food that often effects ears is milk.  I noticed that my Meniere's was gone with the gluten diet.  But I still felt like my eustachian tubes were clogged and this was effecting the clarity of my hearing.  I read about milk and its connection to ear infections.  So I gave it a try.  Voila!   After 5 days of a completely milk free diet (cheese, milk, etc.) I felt trickling in both of my eustachian tubes and realized I could hear much better and much more clearly.  Gluten and casein (one of the proteins in milk) are extremely common food intolerances.  The medical industry here in the U.S. is just starting to address food problems in association with many diseases and ailments.  So to anyone who reads this, try the gluten free diet and see what happens.  It can't hurt.  

[Rox H]

My husband suffered from sound and pressure evoked dizziness, vertigo, imbalance, tinnutis (sp??), hearing his voice, heartbeat, eye movements, conductive hearing loss & nausea for over 20 years. We were told it was Meneire's and that there was no treatment or cure. We finally saw Dr. Carey at Johns Hopkins in Baltimore because we read that he has treatment for Meniere's. Dr. Carey diagnosed him with superior canal dehisence, a rather recently discovered condition and was able to cure him. It required inner-cranial surgery, but only 1 week after later his is well on his way to being cured. Dr. Carey performed the same tests that had been done repeatedly, but he knows what he is looking for!  Not only is he the greatest doctor we ever met, he is one of the kindest also. I am not a health professional, I just want to tell everyone who may have this condition about our experiences. http://www.hopkinsmedicine.org/otolaryngology/carey.html

[Tazmanian]

A couple of month ago I began experiencing sinus pressure build up and awoke in the middle of the night to the room spinning. I went to an ENT where he diagnosed BPPV (Vertigo) and performed a procedure which seemed to eliviate the problem.  

However, over the last couple of months I have been enduring bouts of intense sinus pressure accompanied by mild to moderate of case of equilibrium imbalance (but nothing to the point of the vertigo episode). As pressure increases so does my imbalance in my equilibrium.

I touch the top of my head and feel the frontal sinus passages wanting to explode. I went to an ENT who ran sinus CT Scan which came up mostly negative aside slight mucus build up. A touch to the forontal passages and my ears want to explode. Aside from daily doses of Nasonex, which don't appear to be working is there

I went to another general doctor who ran blood test, carotid doppler test, ekg  head CT scan of the head which all came back negative.  There doesn't appear to be an sever sinus infection but could sinus pressure build up arise from some type of on-going irritation in the environment?Aside from daily doses of Nasonex, which don't appear to be working!  

Could the vertigo diagnosis go in hand with the sinus pressure build up???  I'm also going to take a glucose test (for diabites) and have a hearing test scheduled for next week.  In the meantime since the original vertigo attack I was okay for about a week and then I started experiencing  an equilibrium problem ever since.  Everytime I turn my head I can feel the pressure affecting my eyes and ears. I went back and was prescribed the ear patch, flonaise and Astelin  which don't seem to be working.  Could balance or equilibrium problems be realated to sinus pressure build up?? Do you think ordering a glucose test would be benefical.

Is this a tell tale sign of Menieres because I was under the impression that Menieres was more eposodic while my imbalance issue appears to be more chronic?  Just looking for some answers.  

[neet1]

I've had Meniere's for about 8 years now.   Longer than normal because my hearing loss is slower, therefore the nerve is dying slower.  At any rate, the pressure buildup you are describing is likely not your sinuses at all, but inner ear related.  It could be you are having referral pain in your sinuses as a result.  When a meniere's attack begins it starts because of pressure buildup in the inner ear.  Some people don't notice the pressure, just the symptoms like increased ear noise.  But it is the first step toward the vertigo.  When my meniere's attacks hit it feels like my right sinuses are all completely blocked, but they never are.   It's just the pressure building and the referal pain.  

Don't know if this will help you or not....Most of us Meneire's patients are working with an incurable disease that our doctors all make educated guesses at how to treat.

I've had surgeries and you name it on the meds.  But the thing that has helped me the most is gentamycin injections into the inner ear.  I've had two and my vertigo is much better.  Meniere's attacks still happen...pressure...tinnitus...losing hearing...etc.   But the vertigo and nausea are greatly improved.

[Tazmanian]

[Tazmanian]

sorry about that. How long did it take for you to eventually get dianosed with Meniers?? and what meds did you find worked most for you? I've had the imbalance problem for over 2 months and have tried nasal sprays, meclazine, Dermal scop patch but nothing really seems to work.  Until it is diagnosed I really can't find relief?

[VictorMan]

I started with Tinnitus two years ago, now I have developed Meniere's Disease; I had an MRI, cardiogram, blood tests (many), etc,etc.and everything came back negative, after visiting 3 different ENT's several times, finally one of them told me "Sir, there is no cure for this illness, have you ever tried herbs or natural products? Well, I have found some relief using Vitamin C and some of the amino acids (Lysine, Proline etc), this last week I ate so much cheese that my left ear was so bad. Is is easy to deal with this? No, is NOT!, but don't feel that bad, you are not the only one suffering. This is waht I feel: fullness in ears, roaring that even the words spoken I hear an echo, dizzy, numbness in arms and legs sometimes, eye problems with blurry vision, neck pain and sometimes headaches, just out of the blue I get anxiuos, start sweating and get nervous.

So, are YOU alone? Not at all, but take courage, I am determined that I will find the relief for this. I live in northern CA and last week I talked to a Naturapathic doctor in AZ and he encouraged me to get a 20 to 30 day supply of colon cleansing, he said that he had treated people with this illness before, I will give a try.

Do NOT give up!

[baseballgirl]

I have had minieres disease for 2 years,it took Drs. forever to get e diagnosis, Im 41, and was perfectly healthy. just woak up one day the dizzyness, noises ...all the symptoms mentioned by everyone, i too have had mri's, hearing test bloodwork you name it, i have passed out in stores, and now I don't go out of the house much because my ear is so sensative to noise that it really bothers me to be where there are too many sounds. I went to a specialist in Newport BchCa and got an experimental device, its like an ipod thing that they program to your ear noisesand has music, its called neoromonics.(look it up on Web) It helps some, mostly helps me too sleep.It was Very expensive $5000 but my symptoms are there still EVERY day. I pretty much have given up, my dizzies are better because of diretics, flonase, and meclazine, but the distorted sounds, ringing fullness headaches.etc.. are all still there. I wish there was a surgery, but Doc's say won't help. I can't hear regular out of 1 ear anyway, so I'd rather not hear at all. other ear has ringing sometimes, and fullness always, I'm sure it is just a matter of time until it is full blown too. Any suggestions from anyone would be appreciated. I too felt like I was going crazy for a long time, finally they told me what it was, never even heard of it before, but now I hear of it alot? kind of strange because they say it is a 1 in 2000 chance, LUCKY US HUH??

[dknorden]

I have been going thur pretty much what everyone else has said. Having all kinds of test, seeing three different ENT doctors and they tell me I could have Meneire's Disease. I just went to a specialist @ The Michigan Ear Institute and now he is telling me I could have one of four things. He is suggesting that I have Migraine Disease and wants me to take a blood pressure med. He also gave me an order to get a CT scan of my left ear as he thinks I may have superior canal dehisence syndrome. If not either of the two just mentioned then he said it could be I had gotten a viral infection in my ear or last but not least he suggests Meneire's Disease. I sure wish someone knew what's going on. I'am going to check out the website you listed to see what it tells about the SCDS disease.

[brandygirl]

Hi, OH' My Gosh! I just read all of your postings and for the 1st time i feel normal. Up until reading your stories i felt like i was loosing my mind. I have been having vertigo attatcks for a period of 3 years now with them becoming more frequent lately. ( every 1-2 weeks) However i constantly have the feeling of unsteadiness with a low concentration level. Headaches are also a big major factor in my life along with a new symtom (the last month) of nauseasness. Just to let you know how hard it was for me to get any signicant answers i thought i would share with you this story:  Last year i had an extreme  dizzy, vertigo spell that lasted 9 days. during this period i was so dizzy that i was unable to walk, talk clearly or utilise my left arm or leg. Prior to this episode i had an awful headache for 3 weeks (migraine) that disappeared at the onset of the attack.  The hospital admitted me saying that i had a stroke, caused by a vestibular headache and a cluster migrane (migraine) (headache in the eye). In hospital the MRI and the CT scan showed no evidence of this. Now my Ent specialist 18mnths later has just sent me for test suggesting that i have Vestibular hydrops and says that this is not menieres disease. Is it the same? Does anyone know?   Thanks ....Brandygirl.

[Gina1958]

My doctor thinks I might have Meniere's.  I get the dizziness, nausea, ringing in my ears, but I also feel like I get these "shock type feelings" behind my eyes when I move my head in the slightest way.  I can barely open my eyes.  Another weird thing I noticed at the onset is this loud, scratchy noise in my head.

Does anyone have these symptoms too?

[Remler]

Hello, i also get this irritating noise in my ear. Its called tinnitus. I dont have nausea or dizziness, but after reading these comments i wonder if i will develop MD after a few years. I am currently using a natural product to treat my tinnitus symptoms, they seem to working fine (for now). Can my tinnitus symptoms develop into Menieres Disease???

[Websdh]

My husband started having dizziness and nausea every 2-3 days now this summer to the point he is unable to walk.  His attacks last for about 2 hours then he is ok.  There doesn't seem to be a consistant reason or time for this occuring.  But where ever we are he is down and unable to move.  Almost every attack has him throwing up.  He is taking meclizine but it doesn't seem to control it.
They diagnosed him with Miniere's Disease in the emergency room.  Is there anything he can do to help stop the attacks once they start?  Is this going to continue every couple days forever?

[Harebear]

I'm 45 and have been dealing with these symptoms for 10 to 15 yrs now. The constant ringing in the ears, the severe vertigo bouts, nausea, no vomiting, panic attacks, etc. My ear nose and throat Doc did say I had low range hearing loss, but I have never heard of Menieres until a couple of weeks ago. A co-worker told me about it. I have been to Doc after Doc. Have had enough blood drained to make another human being. All say I'm healthy as a horse, don't see nothing wrong. I've come across a couple of medicines looking this up on the net. Just wondering if anyone has heard of or tried. One is Menrotab, and the other is Meritin. I welcome any feedback on this. Thanks

[mom57]

Hi! Interesting reading the articles you all have sent in. I have had off and on dizzy spells for 5 years and have been to the ER numerous times and they do the routine blood work etc and find nothing wrong. I was symptom free for the last 9 months and the past month i have had some severe dizzy episodes to wear it is an every day thing almost passing out and the neck and headache pain the hissing in my head wont go away and i just can hardly go about my daily tasks this past few weeks and end up leaving work as i do computer work and lately the computer has been making my dizzy spells worse which i dont understand. I have been refered to a neurologist and i go this thur to start testing to rule out things. I know that the anxiety and depression are only getting worse and i am a happy person most always but not when i am feeling like this. I have done alot of research and i am thinking that i may have meineres disease cause ER says everything looks great so i am hoping to find some answers. So what has been working best for you all for the dizzy episodes. They are for sure no fun and effect my well being.

[jdfair01]

I can understand where everyone is coming from. I too have suffered from all of these symptoms since I was 22. I am now 34 years old and gave up on going to doctors. It seems that when you go to a doctor, they look at you like your a moron who is only there to waste their time. I have noticed that I get migraines occasionally and headaches almost all the time. In addition, I also get what my eye doctor calls non-ocular migraines (a non painful migraine). Sometimes my eyes will even cross. I hate waking up with fullness in my ears, then having an attack because the rest of my day is tiresome almost like having a hangover except you did not drink the night before. I am curious if others feel like this as well.

[Petro1]

Hi, I'm a 31 year old female and the dr diagnosed me with m about 2 months ago. My hearingloss in the low freg is very bad. At times I can't hear anyting with my left ear. Loss of hearing is in both my ears. Had problems with my middle ear from about age 3. It's hard for me to handle. Don't have hearingaids as yet. Anyway, I'm glad to see that I'm not the only one. Will keep in touch.

[ladyfoley]

im 37 and was diagnosed 5 weeks ago with md.i to get real bad dizzy spells to the point when i cant get up out off bed.it last for about 4hours,its like u have been out drinking all nite,only u aint touched a drop.i was just wondering if anyone knows about if its ok 2 drive,as some say it is and some say we shouldent,but i know when im going to get a real dizzy spell about 10min b4 it happens,is it just people with drop md that shouldent drive.

[IsangelousFoppotee]

jdfair01 & ladyfoley: I understand completely the feeling of being hung over, when in fact you haven't had anything to drink. My first severe vertigo attack occurred when I was in college at the age of 21. I was incapacitated for about a week -- if I wasn't in a horizontal position, I would throw up (even if I was sitting down). After a few days I finally forced myself to go to the doctor (longest train ride ever!). Of course the first thing out of the doctor's mouth was "have you been drinking?" What a joke.

This isn't anything I've been told by a doctor, but I suspect the reason why some of the dizzy attacks are similar to being hung over is due to being dehydrated, especially if it occurs when you wake up in the morning. I've gotten into the habit of keeping a couple of water bottles right by my bed, so even if I wake up for just a second I'll force myself to drink 1/2-1 bottle. You'll have to use the bathroom more since you're drinking a lot more water, but I've noticed that I don't have as many dizzy attacks (or "low energy" attacks, is what I called them when I was younger) in the morning.

ladyfoley: Speaking from experience, I strongly recommend not driving when you're about to/currently have a dizzy spell, even if you don't have the "drops", unless you absolutely have to. The dizziness affects your vision, and driving requires you to focus your vision on many different things. There were a few times on road trips that I would have a dizzy spell (partly brought on by music, wind, and road noise), and sometimes it would be so bad that I would have to pull over every now and then to be sick. I also think driving made my dizzy spells last longer and worse -- when I got home, I would have to lie on the floor for the rest of the day and sometimes the next day recovering.

I'm lucky that my ENT at home diagnosed me with "pre-meniere's" (aka I have all of the symptoms but they don't have positive test results, since they haven't been able to get me tested during an attack). It is awful to be diagnosed with a syndrome (not actually a disease, because the true cause is unknown and could be different for each person) that has no known cause and no true cure, but at the same time it's reassuring to put a name to it. I've been able to reduce my dizziness/vertigo symptoms a lot just by changing my diet (cut down 6 cups of coffee a day to no more than 3 cups a week, low sodium, little to no alcohol, little to no caffeine, drink tons of water). However, I haven't been able to do anything about the tinnitus, ear fullness, random changes in hearing. I've been doing a lot of reading, and I'm starting to suspect that I've had Meniere's a lot longer than realised. When I was younger I always complained about ear fullness (and it was never an ear infection). I've always had a weird buzzing noise that can get roaring loud -- I thought that was normal, because I've always had it! I also can't stand high pitched loud noises (especially older security systems). Luckily no loss of hearing yet (my grandmother has it too, and is now deaf in her left ear), although it FEELS like it sometimes (I feel crazy when it happens, because I know my hearing is fine, but I still can't explain why I suddenly can barely hear or can hear better than usual).

peggles: I will have to look into gluten and milk intolerance. I love dairy -- it's been a long-running joke with my friends to give me the kids menu because I almost always order a glass of milk (or coffee) when we go out. My mom was recently diagnosed with a gluten intolerance. Gosh, if I have to give up milk and bread... after already giving up coffee, and sweets, and alcohol... I'm starting to run out of foods I like! I swore I would kill myself if I ever had to give up coffee (jokingly -- coffee was my life blood :) ), but now I feel such a difference if I drink a cup -- it feels like my eyes are jittering back and forth rapidly, and sometimes I'll feel nauseated and get a headache.

This has been really helpful to read -- I'm going to schedule an appointment at Johns Hopkins soon (under the recommendation of my regular doctor; I still need to notify my ENT doctor). Even though I have the vertigo under control, I feel like I'm getting worse -- my tolerance for the "bad foods" is getting lower and lower (ex: 2 years ago I could drink as much alcohol as I wanted, now sometimes it's so bad that if I take 1 sip of a beer I have to be driven home while I fight down the urge to throw up). I also want to get an opinion on the "The John of Ohio Meniere’s Regimen" before I start it -- it's a lot of vitamins, but if it helps then I'd do it. PDF for it can be found here: http://www.menieresresources.org/Resources/HomePage?action=download&upname=ANewApproachtoMenieresDisease-TheJohnofOhioRegimen.pdf

Julie: I, too, get frequent headaches. I think some of it is due to stress (I keep all of my tension in my upper neck, which can cause some of my headaches), but I would not be surprised if some of them were because of Meniere's. I'm not a doctor, but I know you can get headaches from eye strain -- and if you have problems with balance or dizziness, then I wouldn't be surprised if you're getting headaches from your eyes trying too hard.

[dreamer2414]

i am a 25 year old female who was diagnosed with minieres disease 6 months ago.  ive been having dizzy spells for 3 years now.  they are only getting worse and its driving me crazy.  i get to the point where i just feel like i cant take it anymore.  i can deal with the ringing in the ears and fullness but i absolutely cannot deal with the dizziness anymore and nothing seems to be working.  i havent been able to really go out for a long time now because i will start getting dizzy and feel weakness in my legs and feel like i am going to fall.  i have 3 childrena dn feel like im letting them suffer cause i cant do the things i use to be able to do.  my attacks happen and stay for it feels like forever.  the attacks i am going through now have lasted for 3 months nonstop and im just waiting for the breaking point.  i just wish someone could give me some answers so i can move on with my life and be able to take care of my children and be able to do the things i use to love to do.  if anyone knows of anyway to really get rid of the dizziness please let me know i am willing to try anything.  thanks for all the help and support.

[Red81]

I have wozziness from migraine before, during and after the headache.  They are called complicated migraines.  It's hard to tell if sometimes if it's the meniere's or an aura before I'm going to get a migraine.  I guess the wooziness from the meneires could cause a migraine.  I also have Multiple Chemical Sensitivity and hypoglycemia which also causes wooziness.  It's really difficult to sort everything out.

[Milan545]

hi , i read your post...did you go to carol jackson in newport? i wouldnt waste your time..head to the House ear clinic in LA, you will be glad you did. have you been there? its the only place to go when you are suffering ear problems...

[metooinct]

My daughter is 16 y.o. and has been dx Meniere's for 41/2 years now.  She was totally debilitated with vertigo without relief for 6 months straight.  The ringing, depression, visual disturbances, exhaustion and some dizziness remains.  The ONLY and I mean ONLY thing that stopped her from such debilitating vertigo was placing a PE tube in ear and using a Meniette machine.  It's basically puffs out air through a tube, which you hook up to ear and the pulsating air squeezes the cochlear sack decreasing vertigo like nothing else.  She went from not being able to walk to eating dinner with us in ONE DAY!  Now remember she is not cured, but she can walk.  She continues to battle all the symptoms and severe anxiety and depression is enevitable with such a debilitating disease.  Insurance would not cover the payment for machine.....a mere $4,000.....stating there is no evidence it works on children.....I can tell you it does!
m.e.

[fallon193]

I wanted to give some of you with Meniere's disease some info I have since a friend of mine has Meniere's and is doing remarkably better since she has been in this program.  I don't know where everyone lives, but the info I'm gonna give you relates to Boston, Ma.  Apparently there has been some research done during autopsies on people who had Meniere's and they found the Herpes virus in the inner ear in all of them.  With this in mind, there are two doctors that I know of that are treating Meniere's disease with an anti-viral drug called Acyclovir, generic is Famvar.  My friend started out on 800mg a day and now does one 400mg pill a day.  If she does have a flare up it does not last as long, nor is as bad as it was before she started this program.  Dr. Gacek from UMass in Worcester started the anti-viral program for Meniere's disease and Dr. John Stram from Boston Medical Center, follows his protocol for this program. Stram is a professor and teaches and sees patients at Boston Med Ctr.  People come from all over the world to see Dr. Stram, so it might be hard to get in right away.  My friend did say to tell Stram's office if you call that you're a dizzy patient and apparently they see those patients on Wednesdays.  You should take all your records with you relating to Meniere's.  Either doctor is good, Gacek started the program and Stram follows his protocol.  Hope this helps some of you.

[sydneysun]

Hi
I have suffered from what I believe is Meniere's disease.  It has struck me multiple times so bad that I could not stand up or get out of bed (had to try to crawl).  I have had lots the tests that have shown nothing untoward (a good thing), but offered no solutions.  I have had to come up with my own.

Luckily, as my father, grandmother and now my 7yo daughter has/is suffering similar problems it has not freaked me out too much.  
As my symptoms come on with fierce intensity for anywhere between 2-6 days and go completely other times, I am luckier than most.  When it comes on I carry around chewy ginger chews (bought straight from ginger factory in QLD, Australia) in individual packets.  Blackmores natural travel sickness tablets also have it in a tablet form if you don't like eating ginger. I try to fix it naturally rather than other medicines which could have other side effects.  Also making sure I have lots of sleep, water, eliminate all stresses.  Easier said than done.
BTW - my symptoms sometimes comes with the ringing in my ears.  Other times not.  Sometimes brought on by stress, other times brought on by virus.

My daughter is now complaining on headaches, backache (around neck), blurry vision, dizziness and the most scary thing is the "falling over" (or should I say losing consciousness for a few seconds).  After falling out of the tree house 3 times, falling over down the street, in carpark, at school etc - finally got an EEG and multiple tests - doctors (inc neurologists) have no idea.  I'm starting to wonder if there is a blurring of meniere's disease and Postural Orthostatic Tachycardia Syndrome (POTS).  I have only discovered POTS on the internet ... plan to take it into the doctors and see what they say.  

Anyway - I was hoping this might help someone out there.

fallon193 - fascinated by the idea that it might be due to inner ear being infected by virus (Herpes).  Hmmm - might start my daughter on Olive Leaf Oil, which has proven in studies to help inhibit or kill the Herpes virus.  If that fixes the symptoms ... it will save me a fortune in doctors bills  :o)

[teenietwo]

  For the past 12 months my husband has been just like the rest of you He awoke one night at 2 am and was taken to hospital thinking he was having a heart attack Nothing was found after extensive tests in ED They gave him 25mg Stemetil in hosp and by luch time we retned homeand at 2 pm he then started vomiting again AT 6pm he was given another injection He couldnt lift his head off the floor to get to bed
Then 2mths later MS attacked him again with vengence Another trip to hospital and it was like that until the last 2 months and the vomiting has stopped He has days now when he feels confident to drive but like you all he wakes up with headaches
So thank you I will try the Vit B2 the olive leaf extract and if they fail try the gluten free and milk free My daughter is on a milk free diet as she has the asthma and the tummy problems They all do seem inter related We have tried a salt free diet but he says that it didnt help as we didnt eat a lot of take aways or use salt in our diet much so was not a problem to stop
the tought of going on the gluten free and milk free diet sounds like their may be only air left to eat He already lost 12 kilos within the firt 2 mths and has gradually put some back on
Kev hasnt been working now for 12mths Finds reading difficult and has to wear dark glasses for the glare and is always in bed by 830pm
Kev still takes stemetil 5-10mg regularly for his nausea Is also taking Serc daily
Thank you all for your help
Kris

[thingywhatsit]

My problem with Menieres has lasted many years, and resulted in emergency room visits because of symptoms which ressembled stroke. This is a serious condition and the dizzies became a way of life. I was given Betahestine drugs which help considerably but found something out this week which may help others. I have always used supermarket spectacles, as glasses are extremely expensive here in France. This last month, I decided I needed correct spectacles and spent the money to buy them. I also decided that my magnesium levels were insufficient and started to take regular magnesium. In the last week, the Menieres has practically disappeared for the first time in three years. I would advise anyone who has eye problems to address those problems and see if this helps them to overcome the debilitating effects of Menieres.

[RadioAstronomyObserver]

thingywhatisit,  this is interesting, I'm interested in this disease simply because my syndrome has been mis-diagnosed as Menieres and many other diseases and conditions till 1998.   Even then not all ent's and even otolyregoligists(spelling) know about SCDS.  Anyhow, the reason Im posting is that we (SCDS sufferers) know eating Salt and a few other things will change the chemical balance of the inner ear fluid which changes conditions of this syndrome.  I.E. ear feels fuller, balance becomes worse, ect...  I wonder of your finding is very similar where as a high or low magnesium level changes the same things?

[Nukeswyfe]

I was diagnosed this past year. I am 32 years old. They did the hearing tests which found a loss in both ears (more so in the right than the left which he told me was unusual...that it is usually just in one ear) and I have the symptoms:

Crackling and ringing ears (sounds like someone crunching a potato chip sack inside your ear when you swallow). The ringing comes and goes very quickly. Usually lasting around 1 minute.

I have hearing lossing in my right ear, my low tones are suffering. I can barely hear my husband from across the room and when I do I usually mix up what he is saying.

My right ear also feels like it has water trapped in it all of the time! It is so annoying, but I have gotten used to it. It aches too sometimes so don't let a doctor tell you that there is no pain associated with MD. It isn't horrible pain but it can push the limits sometimes.

My balance most days is horrible. The thing I find funny is it is only when I am moving do I fall. I could be walking a straight line and fall over. I have great balance when standing still, unless I am dizzy.
Usually when I get dizzy it only lasts for a moment or two. If I ground myself to something It gets better.

I find also that I "see stars' a lot. It is happening more and more and I am not sure if that is the MD or what.

I suppose I am right along with the first poster here. Has anyone had problems with light constant headaches? It seems as though my head has hurt every day for the last year! I don't take medication for it because I dont want to have a rebound effect.

[skeetersmom06]

I feel as though I have stumbled upon a bunch of long lost relatives with various forms of the same symptoms/.

I have had meniere's for about 30 years... just deal with it.  In addition, I'm depressed, anxiety = on medicines for those.
The past four of five days I've had a very familiar headache that I've had numerous times and almost a vertigo feeling.  The best way to describe is a feeling like my head is a salt shaker and someone is shaking it as hard as they can.  This will happen with very little movement of my head or my eyes.  I've found no relief and have been lying around to be still which seems to help.  I've got pressure in my sinuses and they are tender to touch.

Has anyone experienced this "Shaker" sensation?

[Clark913]

I'm slowly figuring out some of the symptoms that come along with Meniere's Disease. Aside from the vertigo-related blurs and blobs, has anyone noted vision problems related to flickering or reaction to repetitive visual stimuli?

I've begun noticing lately that I get "irritated" (mentally / emotionally) by objects in my sight that are repetitive. The other day my wife and I were at dinner and (for some reason) she was swinging her fork like a pendulum. Drove me nuts!! I began to realize that any kind of repetition of visual stimuli bothers me.

Anyone know anything about the relationship between Meniere's and NYSTAGMUS? I've got to ask my Doc about this on the next visit.

Eager to hear (pardon the pun) what anyone has to say.

[Clark913]

I'm slowly figuring out some of the symptoms that come along with Meniere's Disease. Aside from the vertigo-related blurs and blobs, has anyone noted vision problems related to flickering or reaction to repetitive visual stimuli?

I've begun noticing lately that I get "irritated" (mentally / emotionally) by objects in my sight that are repetitive. The other day my wife and I were at dinner and (for some reason) she was swinging her fork like a pendulum. Drove me nuts!! I began to realize that any kind of repetition of visual stimuli bothers me.

Anyone know anything about the relationship between Meniere's and NYSTAGMUS? I've got to ask my Doc about this on the next visit.

Eager to hear (pardon the pun) what anyone has to say.

[ree222]

Wow, This is a site I just ran on to. I am a 50 year old woman and suffer from Meniere's. I had a ringing in my ear for 3 years, and then one day, the whole house flipped on me. I went down hard, right on the floor! I to have been take to the ER. I was taken, because I couldn't speak clearly to the crowd it happened in front of.I can hear eveyron's comments, yes even including, * is she drunk * I just can't speak ( My children know not to panic, and get me to a toilet )    I have had an endolymphatic mastoid shunt. I could hear out of my ear ( left ) for the first time in 10 years. ( yes I lived with it on antivert and diazapam) and then the hearing returned to the * bells and whistles and roaring)and again my hearing was * muffled *. I have suffered Greatly because of this terrible stuff. I am in search of the impossible when it comes to finding a cure, besides cutting out my inner ear, or a Nerve Section ( very very very dangerous ). Hang in there guys and gals,   I am a very optimistic woman, and my life must go on. HA! It's freaking hard!!!! ( that's my bad side speaking )Single, 50, dizzy when I walk, dizzy when I talk, when anyone talks , washing forks, or stacking plates after washing them. I feel like I need to be alone all the time. I can't even stand music when I am tender like this in my ear. Tender, that s a very good word to use I went to the John House clinic in California, tried all the herbs, and I really hated the Niacin! I know I have not inspired to many of you, by my complaining, but I feel like I can't walk right, think right, see right, talk right, and it
s the Meniere's Disease that has bless me, and I would love to know what this mediciation the first few women were talking about. Statrs with an s I think. Until then I will make the best outta it!!!  Good Luck
to Everyone, and I am SOOOOOOOOOOO glad that I have * friends * out here in Meniere's land.

[ree222]

Clark, YES the eyes move and people can see it if you have someone look at you when you are having an attack. It's all connect. I have had Meniere's for 33 years! I don't know if there is a med, I am going to the doc wed and ask if he as anything for that. I workl at a computer and it's he**. Good luck.

[angeleyes35238]

I have had this meniere's for what feels like forever and took long for the doctor's to figure it out.  I was sent to a ears, nose, throat specialist and that is who  diagnosed.  It first started when I was 27 I came home from work one night and ended up going to the hospital they were not sure what it was they told me to take gravol which in my case makes the condition worse.  So does the patch for motion sickness you wear behind your ears.   I have been to my cities biggest hospital which has a clinic that only deals with this.  They actually brought on an attack by shooting warm water into my ears and rocking the table I was laying on worst experience ever.  They gave me all the statistics and told me that I eventually could end up deaf from it and that if my episodes continue they would have to take my drivers license  I am now 40,  I went a period of five years with no attacks.  My attacks are the worst case I get so dizzy and vomit that I end up passing out.  I have three children and a life I find the best thing for me is Serc it really works once an attack starts it lessens the severity and the length of my episode it does not stop it from happening.  When this first started my episodes would last for five minutes then 1 hour and now they last for 7 days.  My last episode was 7 days long then had 8 great days and now I have the ringing and pressure in my ears constantly.  But I try to keep a positive outlook and hope eventually they will find a cure.....

[seraphina520]

Your symptoms sound like a food allergy and/or histamine problem. Have you had allergy testing done or tried a low histamine diet? I have had similar issues and found that it was allergy related. Also have you tried an antihistamine to see if the symptoms were helped. Quercetin is another very helpful supplement. Helps with allergies and inflammation.

[browneyedgal4]

I have some of the symptoms here but also some different ones. I am a 33 year old Mother of 4 children. Have ringing in my ears, have had a tender left ear off and on, but not continually. Pressure in my head when I bend down  - particularly to clean under seats  etc. Also have had strange pressure which comes and goes briefly in my sinus area.
I went to the Docs a few days ago, and he was indesicive but suggested Meniere's or a virus then prescribed me with tabs for Meniere's (Betahistine) which I've been taking for 4 days now - not a lot of difference particularly in the ear ringing or head pressure, though I feel not as dizzy as I was.
I need to know do any of you have the head pressure or pressure in Sinus area too? I definitely don't feel nauseous, but hate the dizziness and head pressure and ear pressure. Feeling very scared it could be something worse....Have watched my son go through a year of treatment for Leukaemia.......
Best regards,
Naomi

[browneyedgal4]

Yes!! Have the pressure in my Sinuses too! Feel as though I can't shake my head etc....! Horrible feeling.

[tschock]

This thread was started many years ago ( notice the hourglass symbol?)
None of us ever really reads posts that have these hourglasses symbols because of this.

For more results/replies you should always start a new post of your own...your chances of getting answers are multiplied that way.

And yes...what you are describing is what I get...and I was diagnosed many years ago with Meniere's.
Not all of us have the same symptoms.
I also have troubles with my eyes "seeing movements". The stove will suddenly move...of course it isn't, but it looks that way.
I also get what they call the drops. I will suddenly fall to the floor...very little warning.
Some of the symptoms mimic MS...so sometimes it takes forever for them to figure out what is going on.

[packbuck]

There are various levels of Meniere's.  You OBVIOUSLY have had the MILD side of Meniere's the last 30 years.  OTHERWISE, you would have LOST YOUR HEARING BY NOW IN AT LEAST ONE EAR AND HAD SHUNT SURGERY, NERVE REMOVAL SURGERY, OR HAD YOUR INNER EAR REMOVED BY NOW--SO BE GRATEFUL!!!

By the way, this is my 1st comment on this board.  I do have the disease.  I have had two of the surgeries & suffered 70% hearing loss in one ear.  I have massive pressure in my head on a DAILY basis.  We ALL suffer from this disease differently.  You need to respect EVERYONE on this board and what we're going thru.  Be glad and grateful you have it mildly.  Before my nerve surgery, I couldn't lay down on my bed without having vertigo start.  After it kept occurring while sleeping at a 45 degree angle in a recliner I said, "I can't live like this anymore.  I have a wife and four kids that need me to be able to function on a daily basis.  I need help."  I got the surgery and had my nerve removed.  I returned to work three months later.  

I've had to learn how to walk again twice from my surgeries.  I haven't taken a sick day in a year and a half.  I don't complain much about my disease.  I just figure that everyone gets something eventually in life--and this is what I got.  By the way, my wife had a reconstruction surgery after breast cancer this year too.  We're making it.  She's been bugging me to have my inner ear removed this summer.  She sees my suffering.  I just don't know if I want my 4 kids to go through any more trauma right now.

If you suffer from EAR PAIN (PIERCING--OR LIKE A TERRIBLE EAR ACHE) or suffer from PRESSURE (like a tightening from the throat area to the top of your head or a a squeezing like a vice) the best thing is an old-school medicine hardly used anymore called Meperidine HCL 100MG.  The pharmacist won't be able to find 100mg tablets so they will give you 50mg tabs.  That's all you will need to use, so you get twice as many for the price.  Use that in combination with Promethazine 25mg.  Meperidine (Demerol) is ranked 4th on a scale of 1-10 for pain, but works wonders on ear pain.  The promethazine used to be given in combination with demerol in the same capsule, but they made them start selling them separately about two years ago.

The only reason I know all of this is because my doctor is in his 70's and has helped 1,000's of patients over the years.

For dizziness you need Diphenidol--25mg.  It used to be called Vontrol when it was FDA approved in the 70's & 80's.  It was taken off the market when not enough people were using it.  Diphenidol is the same drug.  You can buy it through the mail.  I used to buy it in Utah from a pharmacy called Wasatch Pharmacy.           Dr. William Owens 801-399-5014 if you live in Utah this man can help you dizziness.  Good luck.

PS  As for the original post--Headaches--I was having migraines 5-6 days per week before I found Topamax (a preventative medicine).  I take 100mg in the morning and 100mg at night.  I had numbness in my back and extremities with this medicine 'till I found fish oil (1000 mg in the morning  and 1000 mg at night).  I still get migraines that find their way through the medicine about 4-6 times a month, but imitrex usually stops them dead in their tracks.

I am a healthy 42 year-old male.  I have a resting heart rate of 58.  I have exercised all my life and still do.  I have never smoked, drank, and have only taken prescribed drugs.

Once again, good luck to whatever ails you.  Sorry for jumping your case Skeetersmom06--I've had pressure in my head for almost a month straight now and I am not looking forward to having my head cut open again.  

[kazzakiwi]

I've had 3 doctors say it appears I have Meniere's Disease. But my ENT looked at my results and said no I didn't. Well, he should try walking in my shoes, because I'm always swaying. I've had vertigo attacks, one so bad that my eyes shook, fullness of the ear (always), and tinnitus. Mine started as funny little dizzy spells that lasted for about 5 seconds. My left ear has always felt full, even as a teenager.

It's hard, because I've always been active and a real goal achiever. Now, I feel slightly disabled and always tired. I'm 47 years old. Some people in my life understand, but there are those who don't and think I'm a hypochondriac, and that really saddens me.

[onthebrightside166]

Has anybody thought of tmj or allergy to metal in teeth, joint replacement....all of these things can affect you head, fullness dizziness ringing in ears, and eyes and pain in joints. The most common allergy is nickel, but also can allergic the stainless steel and titanium....think about what were you doing and what changed the day before the attack. Gluten can be the issue or Candida. If you are a grinder at time or day, and it is usually under control then needed to figure out what changed to intensify it. You can have an allergy to metal but something happen to compromise your immune system and there you are....you can no longer handle the toxicity in your body....ginkp had helped me control ringing in left ear. But I am no doctor but I refused to be labelled. Please look at the threads on this web site and it might help you find your answers!

[mamacs3]

Just saw your post - I wanted to tell you that my husband has Menieres and he has extreme vertigo, loss of just about all his hearing in right ear, excruciating pain in head and ear - so sharp that he wears construction noise proof headphones 24 hours a day including while he sleeps.  there is no help for the pain, so his doctors say.  He is becoming more and more disabled as the days go on. He is a elementary teacher and it is awful that he will no doubt have to go on total disability.  I am sorry for the pain you are going through I live on the other side of it and see my husband suffer every single day.  He is in so much pain, however, they say there is no treatment. Have been to Cleveland clinic, Pittsburgh University Hospital, next is trying Strong Memorial in Rochester New York, there is no help.  if you no of any, please let me know.  

[Marcybrent]

Just so you know, there is a diagnosis of Migraine Variance which is what my daughter has.  It complicates an already difficult disease.  She has a one year old and a 4 year old.  She is an APN and has a hectic day in a Nephrology clinic almost every day.  Really struggling right now.  However, she was put on a medication which helps to keep the vessels dilated and it has, for the most part, stopped the migraines. I hope you can find an answer soon.  From what I have found out what works for one patient with Minieres doesn't necessarily work for another.