This post has now been integrated into Mike’s Meniere’s Story.
In this part of my story I talk about the connections with Meniere’s and sodium, alcohol, stress, vertigo, brain fog and exhaustion.
These are all things familiar to people who suffer with Menieres disease. Don’t take Meniere’s for granted relates to the fact there are many things that can help, there are many things that can make your condition worse and there can be periods where the symptoms disappear, only to reappear later.
The key is to know what influences your symptoms negatively and positively.
It is also important to not take for granted the fact that you have an incurable disease and nothing more can be done. This is the biggest misperception regarding Meniere’s.
You absolutely CAN learn how to successfully manage the horrendous symptoms of this condition and you can live a normal healthy life again.
Email us with your experiences with Meniere’s at meniereshelp@gmail.com
36 replies on “Don’t Take Meniere’s Disease For Granted”
I have been diagnosed with Menieres and have felt symptoms for about 6 months. Like all of the posts I have been on Meclizine and a diuretic along with an occational valium once an attack is under way. I am very frustrated because the attacks have no rhyme or reason as why they start. I am on a strick low salt diet and exercise as much as possible but need encouragement from all of you because I am only 39 and do not want to live the rest of my life suffering. If anyone has tried something that may relieve the vertigo attacks I would be very greatful. My doctor did’nt seem intersted. Thanks in advance
I know where you are coming from…After about a million test i was told it was meniere’s about a year ago. After the attackes usually about a month or so I would start to feel ok (some days even normal)After a really bad attack I had in june not a day has gone by where I felt normal. Tried a new dr who wants to treat it like vestibular migraines. but after about a month just had another attack..went in the next morning and the new dr gave me more meds to try…including one for panic attacks (which is what he thought i had i guess) Why is it so hard to find a dr who really believes something is wrong. Anyone know what else we can try…meclazine doesnt help me and i am on a low sodium diet. was on a dieretic until this dr took me off it. I am only 35 and really need to beleive there is hope out there yet
Hi dfad and Kara,
Obviously I would recommend trying the supplements we all use. The vast majority of people with Menieres disease who try them live symptom free…….including me of course 🙂 Have a look at the main Menieres Help website for info here.
I was diagnose several years ago with Menieres Disease, I was a relief, finally a Doctor who understood me. But I don’t have insurance and can not afford to go and see him not that I have allot of hope of relief anyway. Vertigo comes and goes, I never know when that will hit me. But the ringing in my ears is extremely high. The ringing never stops day and night. Those around me do not understand they can not believe it. I have talking about it, they just dont understand. I don’t think I can’t hear I just think I can’t hear certain sounds they just blend into the ringing in my ears.
I understand everyone’s frustration. I am a physician who was diagnosed with Meniers 6 years ago. I only have had 2 flares since, but this last one started June 2010 and has been unrelenting and severe since then. The ringing in my Right ear is so severe at times 50% of the time every day that can hardly think. Hearing loss is moderately severe. I am on all the usual meds and treatment – diuretics, low salt diet, plenty of sleep, etc. I have tried vit supplements, herbal meds, accupuncture, yoga. I have read a bunch of books on it and scoured the web and read most of the major experiments on it (free on Google books). I have seen two experts ( Dr. Harris and Dr. Cueva in UCSD). They are really helpful understanding thhe disease, but have not miricle bullets. bottom line – whimsicle and capricious diseae that no one truly knows why or how to cure. Probably something the Gods created to slowly torture or test people. The reason Physicians seem uninterested is that most of them do not truly understand the disease or condition. Also they find non fatal diseases that they can not fix or help subconsciously frightening.
Hi Ed, Nice to hear the voice of a sympathetic and understanding physician when it comes to Meniere’s disease……I saw DR Harris in San Diego many years ago and he did my Endolymphatic shunt implant. Unfortunatley it wasn’t successful in my case. Luckily I started the supplements you read about on this website shortly afterwards and have been well ever since.
I have just been diagnosed with severe vertigo am taking meclazine, makes me very sleepy. I have been on the internet reading about menieres syndrome. I feel very anxious about my doctors appt. today I have figured out that feeling nervous seems to bring on some ofthe simptoms. I decided to write all of them down to give to dr. one thing that I have is a symptom no one has mentioned on the net.. My head bobs and my neck feels very weak as if it can’t hold my head up so I have to lay down becase I get dizzy. has any one out there also felt this?
What are the supplements u all have tryed would love to know I have had menieres for about 14 years and I’m only 31 and its hard to live with I have three small children and really bad anxiety from it I don’t want to go no where I’m always in a bad mood and never get to do much with my kids cause I’m so scared it will happen if I take them out please let me know the name of the supplements.
unfortunatly.. I am also feeling very much like you all said.. diagnoses in june 2011 with Meniers disease… ahhh bummer.. Im on a suppliment homoapathic meds and it seems to have helped a bit.. no dizzy spell for 2 months..then they returned a small bit at a time. The problem I have is I am still working and I cant seem to get thru a week.. I am on the 10th year of this job and i really love it.. seems there should be something to make me feel better.. whoozy all the time and just off balance. the dizzy spells made me panic also, they still do but when i get whoozy I get scared I am getting a spell and have to go home.. The ringing in my ears are the worse sometimes, and sometimes hardly notice the noise.. but does anyone know how much sodium you should have ?? I dont think I am getting enough, seems I feel bad when I really restrict my sodium..
Question. Its been my experience that antibiotics (penicillin ie. zpak and amoxicilin) aggravate my vertigo to the point on not being able to function for months later. I am needing surgery next month and of course they want to put my on antibiotics. I am scared to death of the outcome. I do not have time to waste 6-12 months for me to recover if the antibiotics do to me what they did when the ENT regularly prescribed them to me at first menieres diagnosis. I have googled and haven’t found anyone else with relatable experiences with antibiotics. Can anyone else relate? If so, would you know any alternative to the typical antibiotics that I could take without fear?
Just being digonised with Meaniers Dont wish it on my worst enemy please help what is the suppliment u all talking about ?Also if anyone had any sucess stories please let me know Thanks in advance
My sentiments exactly! I wouldn’t wish this on anyone even my worst enemy…please go to here to the Menieres Help website for info on the supplements and here to find out about getting them.
Hi Michelle, Have you thought about taking a probiotic after the antibiotic to compensate and rebuild the good bacteria in your stomach?
9 year history of Meniere’s. When I’m diligent with my diet and exercise I’m symptom free. As soon as I become too relaxed with alcohol consuption, caffeine and sodium that’s when trouble starts.
Also, I am sensitive to dehydration so lots of water is a must.
Acupuncture seems to help.
I plan to begin the supplements ASAP.
Thanks ADMIN for posting how to obtain them.
Hi Everyone,
I have Meniere’s and seemed to be doing well, had gone almost a year without the actual falling down flare up. Just occasional feeling off – like I was leaning when walking and my vision and head kind of weird, hard to describe.
I have thought I had the keys to keeping it at bay – avoid alcohol, stay hydrated, stay away from sodium and keep allergies and sinus symptoms under control.
Now, VERY frustrated!! Going to be flying to Tampa tomorrow morning and have been doing everything right and sure enough here comes the feeling I get right before an episode.
Any suggestions on what I can do short term to survive the flight? Flying is something I have to manage with handfuls of dramamine, motion sickness wristbands and tons of water on a good day. VERY nervous about flying with this starting.
Any ideas??
Melanie
Hi Melanie,
Usually it’s a good idea to give yourself the best chance of avoiding any episodes during flying by avoiding any known triggers. But it seems as though you are already clued up on this. It’s strange, many people (including me) never have a problem flying which is odd when you consider the extra pressure on your ears.
Try and think what you did the 6 ~48 hours before you felt the signs coming on. In your diet? Physical activity? Any change in household chemicals? Cosmetics etc And avoid it.
Do you use chemical nasal sprays for your sinuses? It has been suggested that these may make things worse. Try steaming or using a natural dead sea salts nasal irrigation.
Hope this helps a little
I am no doctor but you’d be surprised what we hear and figure out could be deemed a trigger. Saving all that, your dramamine or Meclizine may help prevent the worst.
hi my name is donna ive had menieres for a year now all i can tell you is nothing raelly works for me i am in the serve stages of this now and nothing helps except to watch what you eat and the meds you take.you have to think about what you eat and drink that helps some.but dont give up keep trying iam 42years old and i have a grandson think of something that makes you happy when you have spell think of good times that will help you get though the spell little easier.
Hi,this is Donna again.I have a lot of trouble seeing so just bare with me.if i can be of some help to you let me know.i can help you through this cause I’ve had my share of ups and downs with this disease and I’ve lost a lot of things in my life because of this.I work with horses and i thought my dreams were over but,i decided not to give up if i did then there was know hope but, i have hope because of people like you all i know now there is people out there just like me and to me were people to and its been hard cause I’ve tried to make people understand this disease they don’t but i want give up cause its out there and i want them to know were not crazy were people to were just a little different.if i can help any one with what works and don’t I’ve tried it all i can help you.
Thank you for the suggestions, I have started a new nose spray from my allergist and never thought the two could connect but it would make sense. Of course if that is the case the question will be do I want allergies or randomly falling down LOL Gotta love life!
I feel better today it seemed to clear faster than usual so maybe the changes I have made did make a difference in that at least.
Here’s to a smooth flight and a dizzy free day for us all!
Hi Melanie,
Their is know easy way to deal with this disease.i have tried just about everything their is to try. i use to wear patches to help with sickness but, it caused my attacks instead of helping me watch your medicine some of mine would cause attacks i eat wright and everything and it was my medicine the whole time.so try and watch your medicines and see if that will work for u.i am suffering with anxiety and depression cause of this disease but you have to think about what works for you it took me along time to figure out what would work and what want work so keep a blog of every attack and what you eat that day then you will know what to eat or not eat.watch the salt in what you eat everyday take in your two thousand calories a day and count your salt intake that way that is how my attacks slow down for me the salt was in what i eat and i was going over my calories a day.it makes my attacks less and not as strong i am in the server stages of this disease now and it took me along time to figure this out maybe this will work for you.
Hi,Everyone,i need someone to talk to me about how they learn to deal with this disease if their way is a little easier than my way I’ve tried to work but,people seem so scared of my disease and the people i work for are real nice i just feel like i am not good enough to do the job.I love the horses and its a big dream of mine but,when u deal with people with horses its like they know more and you know nothing and they never give you that chance I’ve done horse stalls 2 years and now i changed jobs of caring for show horses now that i have this disease it makes it hard cause people see you in a different way now i try to make people aware of this disease but,nothing is working for me i hope someone can tell me how i can work and make people see they can’t catch my disease and i can do my job with this disease.
Hi Melanie I am on the nose spray right now and it done me know good it caused bad head aches i guess mine is so severe now that nothing much has helped.so i decided to deal with this on my on this disease just gets worse it never gets better much i have more bad days than good days the doctor told me i would have ups and downs but,it seems like a never ending story i have some what hope that maybe there will be a cure someday but til then i hope that people never give up keep holding on know matter how hard it gets so that we can make people aware of this disease.
Hi Donna, email Mike at meniereshelp@gmail.com. He will either help you himself or put you in touch wit someone else who can help. Hope you are doing ok at the moment
Thanks I am doing ok for now.The doctors where i live have know idea about the disease not even the hospitals here i was sent out of town to get help and it seems like i am getting know where i want surgery to be the last thing i
do.thanks for your time.
Hi Donna,
I know we get people who have had issues with Meniere’s type symptoms with their sinuses and chemical sprays make it worse. Try steaming or using a dead sea salt irrigation. Something natural.
Thank you for your idea being in the worse stages of this disease its scary to try just anything cause mine is so bad its easy to trigger my attacks and they last so long and I’ve tried everything but, never seemd to work so i will try the sea salt wish me luck.
Thank you for your help hope this works wish me luck
do you mean plan sea salt that you can buy anywhere or is it different. do u buy the steam pot to do the sea salt or something different.
No I meant steaming with just boiling water. I believe there are ‘Dead Sea Salt’ sinus irrigation medicines you can buy now that are totally natural. We have heard of oa lot of people having trouble using nasal sprays full of chemicals….either triggering attacks in the first place or making them worse…..it is not clear.
Donna, mail Mike on meniereshelp@gmail.com. He will put you in the right direction.
Well doctors done all they can do for me now medicine not working so surgery to drain fluid off so everyone wish me luck.
Donna, good luck with the surgery. If it is not successful don’t be too despondent. Although the doctors mey feel they have tried everything. I can pretty mucg assure they haven’t. Most of what we cover to help?people in this blog is either not known or not given any credit by most doctors. There is still a GREAT DEAL you can do to help yourself. If you want more info just email us at meniereshelp@gmail.com
I’ve had this “companion” since 1954 – yes really!- so I have some suggestions. In my case episodes have become less violent (no vomiting, etc.)and less frequent over the years (but no less scary). You do learn to manage it. If you, like most of us, are functionally deaf in one ear you have lost directional hearing so, when in groups, sit or stand with a wall at your back (to shut out background noise)and with your good ear toward the person you want to hear and walk with them on your “good ear” side. Keep salt (sodium) and caffeine to a minimum – that means coffee, tea, chocolate, pickles, canned goods, processed meats, bakery mixes etc.- read the fine print! Get addicted to fresh and frozen stuff. If you’re wobbly, take along a cane or trekking or ski pole. You don’t want to fall! Talk to a doctor about taking a diuretic in the morning and diazepam or something similar at night(it will make you sleepy and you shouldn’t drive after taking it). Minimize stress. You will depend on your eyes for balance. Use good lighting, glasses if you need them (but be careful with bifocals)! Improve your balance as you can – stand on one leg, close your eyes, try Yoga tree etc. I’ve lived with this for over fifty years and still going. Most days are good. May yours be the same!
Omg, newly diagnosed. So happy to have found you all. Collecting my research now. Anyone heard of a Minette device?
I am so happy to have found this blog! I had my first episode 6 months ago and have had them monthly since. 5 doctors, 2 sets of blood work and a CT later, I was diagnosed with Menieres. It is so hard because I feel like everyone thinks I am crazy or overreacting. It has made me feel better knowing I am not alone in this.
My first episode with Menieres happened with the birth of my first son 28 years ago. No episodes since then. I have, over time, loosened up on my dietary restrictions. I lost hearing 83% in the right ear and 30% in the left. Developed thyroid cancer and have struggled from that. As a result I developed an infection from some dental work that resulted in severe facial swelling, fullness in my ears and crazy loud tinnitus, 3 root canals, and weeks of antibiotics. 3 days after I finished the bottle of antibiotics I used a salt scrub and dead sea salt product and the vertigo/vomiting came on suddenly after years and I went to the hospital. 48 hours later another menieres episode. 5 days later with meclazine and nausea meds I am back.