Meniere's disease and headaches

[Julie177]

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]

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]

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 (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?