Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
lillysma
In May of this year I woke up one day to my left ear making a heartbeat sound. It was hard to even hear over it. It went away after a few hours... as the week went on it kept happening. About 1 month in it became constant. The sound in my ear would not stop. I began to see an ENT and my Family doctor. They believed it to be Minear's disease. I wasn't convinced because a big symptom with Minears disease is Vertigo which I have never had. They performed 2 hearing test in a 1 1/2 month time span which showed with each one my hearing was decreasing in that ear. They put me on a low salt diet and prescribed water pills and left it at that. Within 1-2 weeks of my last doctor appointment I started not feeling right. I was having severe pain in my head (not headaches, more like random stabbing pains throughout my head), pain, numbness, and tingling throughout my arms and shoulders. My family doctor prescribed me prednisone thinking it was something seperate. That was on a Friday, by Sunday I suddenly felt my entire face going numb. The pain in my head was unbearable, my hear was so loud I cried. Within 1 hour my entire upper body went numb including my throat making it hard to swallow. My mother called 911. By this point I was so scared I was having a panic attack. They transported me to my local hospital. The ER doctor ordered a CT Scan with contrast and blood work. Everything came back normal. I started to feel better but still had lingering pain and tingling throughout my upper body for days. I called my family doctor about a week later to let him know what had happened and find out what to do because I was still having these symptoms pop up together and seperatly now. He referred me to an ENT and neurologist. The ENT said it sounded neurological. He wanted an MRI and asked that I ask the Neurologist what he thought when I seen him the following week and to then call him to let him know. He said if the Neurologist didn't order the MRI he would but to let him know either way. So I went to the Neurologist that next week. After an hour of talking he sent me to the hospital (3rd trip by this point for the same thing) for blood work. He also scheduled an MRI with contrast. My MRI was a few weeks out. I patiently waited which during that time I was still having problems. Finally the MRI day came and gone (which I received a nasty infection through my hand where the contrast was injected up to my elbow. Not fun!). The nurse at the Neurologist's office called me to tell me they found nothing in my blood work or MRI. They asked that I keep my follow up. Otherwise to keep taking the 2 medications he prescribed for Migraines. Which I did not understand why out of all of this all he assumed was going on was migraines. My family doctor's nurse also called me that day. I cried to her telling her I didn't understand and what do we do now!? She had me come in that evening to speak with her and my doctor. He decided to order a few more blood tests and to wait to hear from the ENT before deciding to do anything else. So last week I finally hear from the ENT's office. He says he doesn't know and that he didn't see anything and asked to schedule a follow up in 6 weeks. I was losing hope. So I called my family doctor. His nurse tells me basically the same thing... he doesn't know and to schedule an appointment to reevaluate. So I did. It was yesterday. He told me they (the hospital group) have tested everything they can. He diagnosed me with Minear's disease in my ear and as for everything else he said to get a 2nd opinion if I wanted or he could send me to OSU medical center. Every doctor I have seen said it sounded like MS...yet no brain lesions were found. Also no one has looked at my spine which I have Spinal Stenosis, Degenerative Disc Disease, and Spina Bifida Occulta in. My family doctor said it would not make me numb neck up. That is neurological. So I'm lost. I feel hopeless. As I sit here my lower face, neck, and back are numb & tingling..
Sorry to hear about your problems and hope there are some answers and relief somewhere. From what you say you have symptoms that quite frankly shock me. The whole thing seems to somehow go back to nerves and probably your spine issues in part. You are probably too young to have nasty little bone spurs in your nerves yet but perhaps the degentive disc disease maybe in your neck area too. Some of your symptoms sound like ischemic stroke (blockage)??? Menieres is often a diognosis for the lack of finding out anything else positive. My gut feeling is that you need to be seen by some better doctors and neuro specialist up the scale. It apears that you live in Ohio I would suggest having one of your doctors send you the Clevland Clinic for a full work up. If blood test indicate you may have MS by all means you should have had a spinal fluid test done. All doctors feel they need to give you an answer and sometimes it is just flat wrong, I know that is fustrating. Some folks really need the best out there to see them, you sound like such a case. Mayo Clinic is another option or some teaching hospital like Vanderbilt in Tennessee. Also hearing your heart beat is a sign of your hearing loss and pressure in your head.
God bless and good luck!
Rich (PS I am not a doctor or associated with any medical field)
I do get headaches with my meniere's, but nothing like what you are describing. I hope you can get a diagnosis soon.
What an ordeal you have been through! Some scary moments! When I read what you wrote, you described some of my symptoms pretty well. I have the loud heartbeat in my ear, sometimes it sounds like a nail gun. I also get the stabbing pains in my head, like someone is jabbing me with a needle. But the numbness is strange. Did you get your heart checked? The tingling in your arm and shoulder make me wonder if you had a conglomeration of things happening at the same time.
I am sure I had Meneire's before I ever had a vertigo attack, I just didn't know what was going on. So don't rule it out because you haven't had an attack. I have not figured out what triggers those pains in my head, but the heartbeat (like Poe's Telltale Heart) is definitely worse when I have had more sodium or other foods that are my triggers....
I agree that you should continue to search for answers. I hope that your symptoms fade so that you can deal with them more comfortably. God's blessings on your searching.
gammaziza1031 I did have a lot of blood work done to rule out many diseases including Lyme Disease. I am unfortunately working which some days is so hard to do. :/ Thank you RachelIT... it is weird... They haven't checked my heart. Hopefully once I go to OSU they will check a number of things they probably should have at my local hospital.
Good for you bravo!!! I am so happy you are going to see some doctors up the scale. They often network with others so if they do find a cause you can get routed in a proper direction. Nerves are a thing we really take for granted. All nerves have something called a myelin sheath which would be similar (for laymans terms) like the plastic coating around a wire cord at home. Many conditions and damage can cause the sheath to degenerate which leads to a open unprotected nerve ending thus the pain. Also in degentive back deseases there is often times leakage of fluid in the spinal area that causes mussles to contract and become inflamed hard like a mussle contraction. My wife gets this and I have to message and work it out with heat and topical ointments, it is very painful.
God bless you in your journey, keep pushing to you find answers.
Let us know how you are!
Rich