I am a 62 year old male. Here is my latest diagnosis as of February 19, 2017: "The differential diagnosis for his tinnitus with ear fullness and also low frequency hearing loss could include endolymphatic hydrops or Meniere's disease, and also eustachian tube dysfunction." I have had several other diagnosis including damage inner ear hairs. From November 10, 2016 to now, I have gone through pure hell, three ENTs, a Neurologist, several audiologists, two GPs and many others. I have had so many tests (the ones for Menieres was inconclusive). I have had three steroid shots, an ear tube (with steriod drops and wick), an MRI, steroid drops, sinus rinses, five antibiotics, four different diuretics, and my hearing and other issues have become worse. I don't think steroids are doing me any good as things seem to be getting worse using them. Now my right ear is almost as bad as my left one, where this nightmare started. I first got a terrible sinus and chest infection that started my ears to hurt and feel full. Over the next few months, the dental drills noises in one ear got worse and then the other ear started, and then hearing distortions which make all voices sound like monsters. For my first steroid injection through the ear drum In January 2017 I got 11 hours worth of quiet, and then it went very bad. Three days after my second steroid compound injection through the ear drum I started this horrible vibrating roar in both ears that led to dizziness and then horrible migraine headaches. This usually happens in the afternoon and continues into the night, with morning being somewhat better. My hearing progressively deteriorates as this "attack" occurs. This has been happening for two weeks now, and I am almost not able to take this anymore. I am confused many days, and simply sit in a chair and cry. I freeze and cannot react, and my family is so upset, and I hate seeing them upset. I am not sure, but I think I might be going somewhat mad. I have lost almost everything, my retirement, which I only enjoyed for six months before this happened. Most of my friends who freak out at my crying and I don't understand my terror about social situations and even people coming to the door. I can't listen to music anymore without it being difficult. I cant' sing anymore. I have trouble driving and depend on others. But every day I get up and try again, to move forward, but it kills me to see the ones I love go through this. I have lost 24 pounds in two months but this has actually made me healthier in one sense, but as I walk to improve health, there are times I want to step out in front of a car and end it. I have only had two episodes of severe vertigo, but feel lightheaded, confused, and tired most of the time. I am trying to make life worthwhile but my heart dies many days, when I see my loved ones cry for me. I go into my half bath and talk to myself where no one can see, trying to get going, but many days I just sit there. Sometimes I feel like I have lost myself, and can't find him no matter how hard I try. I have also tried Tinnitus vitamins, breathing therapy, new tinnitus blocking hearing aids, Lipoflavinoid, but none stop the pain of the roaring. I have been reading this forum, and it has helped me. Any advice will be helpful. Please help me, please. I am currently taking steroid drops in the ears three times a day and using xanex to get to sleep. I go back to my current ENT on March 14, for a tube in the right ear, but since they are not working I am tending to not have it done. I don't understand that when I have these headaches why I have such enormous sinus pressure around the eyes, blurred vision, loss of hearing and can't bend over. What is this?
It sounds to me as if your ENT is treating issues with the inner ear and does not really believe it is MM just yet, or he is treating multiple issues. When I finally went to an ENT due to the same pressure roaring symptoms you describe, he treated me for sinus issues as well as the MM symptoms. Once the sinus issues were under control and the MM continued is when he finally diagnosed me. There are a number of folks here who get migraine induced menieres symptoms. They call it MAV I think. Spend some time digging in this site. You will likely learn a bunch. Hang in there Jimmy A. The folks here understand your suffering. This is not an easy disease, but there are often answers. You may need to find them on your own as many Dr.s have a very limited regimen they prescribe. K
Hi Jimmy I'm sorry to hear your story, but you're in the right place. Many people have found relief through various means. Have you tried antivirals? They have worked for many of us.
Jimmy, Make sure to focus on your diet. The standard advice is consistent sodium intake at 1500-2000mg per day, limit or eliminate caffeine, and alcohol, no msg, and find your migraine triggers through an elimination diet. Try deep breathing, walking or yoga, or something you find relaxing. It may be that you'll need to rest more and slow down and that's okay. Best of luck, we're all in this together.
Thanks to all that replied to me. Only one bad crying fit today and walked and exercised. My sister is here and that helped me. Ears still roaring, and my headache is here, but so am I. I pulled myself out of bed today at 11:30am after two xanex last night. I did get an echo effect that I had several weeks ago, and sometimes people's voices sound like monsters. Went into a noisy grocery store and I freaked out and had to get out. I don't understand all of this, and I am scared--scared to death. Any explanations will help. Thanks John for the information, and please think of me.
Jimmy, Check out Migraine Associated Vertigo, MAV. Check out this link http://www.mvertigo.org/ What you are experiencing is very scary. Every member here will attest to that. Keep searching and reading. You'll be ok.
So very sorry to hear you are going thru all this. We all understand the various symptoms you are having--and it sounds like 'anxiety' has taken it's toll on you due to them. I do hope you are seeing a good Neuro-ent and if not, find one. So many good ent's just don't deal with the symptoms folks have with Meniere's so they understand if you need to get another opinion. And if they don't understand--get one anyway. The loudness in stores and restaurant's and the phone and just folks talking can 'get to all of us' at times. The tinnitus issues are also difficult to deal with. The good news is--those do seem to fluctuate. I do remember when mine were absolutely 'awful'---and now are just annoying. I have problems in stores--the visual stuff more than anything. In restaurants or public places, like church and music can make me a bit 'anxious' and more dizzy. But--taking either Valium--low dose as prescribed by my Neuro-ent, helps some and on occasion, a Xanax, because anxiety goes with this. Getting out and walking in a park or neighborhood is good--and talking it out with a friend or family member--or here, helps too. I do hope you get some much needed relief soon. Stay with us and sound off anytime!
ps: Just read your post again, and realize you have seen a Neurologist too. I have to say, my Neuro-ent is not a fan of the injections in the ear. Says he has had many patients come to him after having them by another doctor--and they have added to their problems. Not sure that is your problem. And I failed to mention--I did have the 'endolymphatic shunt' procedure in my affected ear--and no more vertigo for 5 years now. However, look at my posts. I do have ongoing head pressure--probably migraine in nature, and now have an appt. with a Neurologist to see if any of this is Neurological and not MM problems. And--I wear bilateral hearing aids and sounds are not too clear--speech, my own voice--music (I miss that so much--but it's distorted), and I have done my share of 'crying'--we all have. Just do what you can for the anxiety this causes--and that will be a big help to you. Find what works the best. Cry when you have to--get help for the anxiety and let us know how you are doing.
Unless I overlooked it on your post, I don't see where you went to a NeurOTOlogist. Only a neurologist is that right?
Welcome Care I hope you finds the answers you seek here. Don't let anyone push other diseases on your until you've seen a proper Dr. and gotten a diagnosis. Good Luck to you.
Yanksgirl and others, I have seen one Neurologist, and currently seeing a Neurotologist here in Altanta. Also two other ENTs and a lot of doctors. I am quickly not becoming a fan of steroid injections--I have experienced nothing but decline in hearing. This experiment is coming to an end. Yanksgirl, I am also having headaches and my hearing goes bad along with vision and an onset of dizziness. This also corresponds to a loud roaring in my head. Went to see an ENT while mine was out of the office, and he said maybe allergies are playing a role? He did clear my sinuses and it seemed to help. I don't know what to believe at this point.
It will be good if having had your sinus' cleared, you improve. Many folks have this problem too--along with the MM. I have never had sinus issues--glad I don't, but if I did and they treated those and I got better--would almost--almost--wish that would be a 'fix'. Probably not though. I am dealing with really bad head pressure the last few days (feeling sooo miserable ( yukky) - and I do know the weather patterns have a little to do with that--storms brewing in between beautiful warmer days and then cold days behind them. However, I did call to see about getting my Neuro doctor appt. moved up--got a call back today and moved up one week. Very nice secretary said she was 'keeping an eye open for me' and though it's still not until June--she'll move me up any chance she gets. I have a feeling all this is due to MM and not neuro--but will sure be glad to get his opinion and hopefully some help with the awful daily symptoms--but thankfully no vertigo--since my shunt surgery. Do hope you feel better soon.
Yanksgirl, my headaches center around and in front of my eyes and seem to correspond with the loud roar I have heard now for three weeks, and dizziness. I also get weird visuals. I do notice some relief when I take a xanex as well as relief with ear and balance issues. I tried today to sleep without xanex because I am scared of getting addicted, but only got three hours sleep, and got up so dizzy and in the brain fog. My family sent me back to bed with a xanex and I slept for three hours. Felt some better afterwards and then went on a mile walk. Good luck on your headache issues and let me know how this issue comes along.
As for that feeling...don't feel alone. Please do not. I cherish life and am the kind of person that can find joy when most can't. I find it in the sunlight on my face and also when the moon cools my hot tears. But this...this series of symptoms - makes me want to jump off a cliff. This is not how I want to live life. Then the hope comes again and I cherish every breath and wonder how I could ever let go.
Hi. This is my first post. I have been lurking for a couple months. However, I felt compelled to suggest to original poster, Jimmy, to please drink as much water as you can. I think it may help your headaches. I'll tell my story soon. I'm just not ready yet. Blessings to you.
Thanks Janine R. The people here are sweet and caring and share a bond that only a disease as intense and difficult as this one engenders. I am learning so much and more fully understand that so much is not known about Meniere's disease. Thanks for the tip, and I just drank more water. Thank you!
Mccoffeesnob, I like your name and I miss my coffee. I was told to avoid all coffee for several months, and I miss it so much. I try and find some joy, but seems to get harder as my issues seem like a downward spiral. You inspired me to look for more good things. Your words were beautiful!