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“So that happened” is one of my favorite lines from one of my favorite movies, “State And Main”. If you’re ever in the mood for a hilarious movie with a good cast, check it out or, google it. As my youngest son Matt likes to say when you ask him a question, “here, let me google that for you”, and if you’re on the internet he then sends you to that wonderful page of the google empire. OK? Got your homework? Now on to the post.

It all happened about 5-6 weeks ago. If I were to be sincerely honest with you I would say it all happened 56+ years ago, but I’m not going to bother you with all that history. 5 to 6 weeks and a rough outline of the story will do just fine. So, 5 to 6 weeks ago my doctor and I decided to change my medications we were using to treat my Fibromyalgia. Maybe some of you read my earlier post about this, titled “Massage Techniques” (talk about a lot of spam just from using that title! Good grief!). If you read that you will get a bit more history, if you want it, into what’s been going on with my health. If not, then hopefully you’ll get enough information here to follow along. The change of medications this time that my rheumatologist and I were changing were for my Fibromyalgia and Osteoarthritis, namely going back on Celebrex (for Osteoarthritis) after trying Voltaren and finding out it wasn’t doing the job. Then secondly, changing from Savella to Celexa for the Fibromyalgia eventually upping the dose, due to the fact that it wasn’t calming my Fibro down enough so I could walk, a task I’m still struggling with.

With the addition of the new drug Celexa and my old stand by Celebrex came a new set of symptoms that I thought were related to either the combination of the 2 drugs or something different entirely. This first symptom started out as Tinnitus, mild enough at first to cause my MD, during my visit, to say it was a normal change as we get older. The second new symptom was a feeling of fullness in my left ear, and the third symptom was a terrible case of vertigo leaving me unable to drive or walk. These 3 new symptoms caused my rheumatologist and I to make a few changes to my medication doseage to try and figure out what was happening. After living with these symptoms for about 5 1/2 weeks, and feeling like I had done everything I could to figure out what was going on I decided to head on over to an ENT, ear, nose and throat doctor.

For anyone who has dealt with severe Tinnitus, you can attest to not only the discomfort of the annoying ringing in one or both ears, but also the loss of “quiet” which a normal hearing person hears. Tinnitus or (ringing, hissing, roaring) is what a person hears when they have a lack of noise in a their ear. I had been dealing with that discomfort for the first week or so when along with it I got a new symptom, a feeling of pressure in my ear. Have you ever felt your inner ear pressure change when you’re taking off on a plane trip? Or maybe it has happened to you when you descend from the skies down onto the runway. This was the new symptom in addition to the intensely loud ringing and terrible vertigo I had been experiencing for quite some time.

It’s been a long time since I have had any kind of ear test so I was pretty surprised how involved it was. The total test time was approximately 40 minutes. Throughout that time I knew I wasn’t going to come through with shining colors. The audiologist was a young, kind woman. She was very thorough throughout her job and explained what she was looking for, the full range of high and low frequencies, as well as how well I performed while testing each ear independently. With each different set of specialized ear plugs that were placed in both ears, first then the left and then right, it became even more alarming just how bad off my left ear was. Once I was done with the hearing test I was taken to the ENT’s exam room to await his arrival and go over the results.

Our children used to go to this very ENT office, to see a pediatric specialist who is still in practice there today. My ENT was someone whom I had heard about, and is known as one of the best specialist’s in his field in our area. He introduced himself, apolgoized for having laryngitits which just came on that morning and proceeded to go over my health history with me. After I received a full exam he diagnosed me with AIED, or autoimmune hearing disease with the possibility of Meniere’s disease. AIED is a rare autoimmune disorder, meaning that the immune system attacks a part of the body. This attack on the inner ear results in a rapid hearing loss. Sometimes people with this condition also experience balance problems and many have pain. AIED is thought to be another condition brought on by several auto-immune diseases, Rheumatoid Arthritis, Lupus, or Sjogrens Syndrome. 2 of those diseases I have, so I suppose it wasn’t surprising, just shocking, and something I never even knew about. Meniere’s Disease symptoms are fluctuating rotational vertigo, fluctuating hearing loss, fluctuating tinnitus, and fluctuating sense of fullness. The ENT was not sure I had Meniere’s Disease but was going to treat me as if I had both AIED and Meniere’s.

As quoted from the CIDP International Foundation, found at http://www.cidpusa.org/index.html, “Until recently it was thought that the inner ear could not be attacked by the immune system. Studies have shown that the perisacular tissue surrounding the endolymphatic sac contains the necessary components for an immunological reaction. The inner ear is also capable of producing an autoimmune response to sensitized cells that can enter the cochlea through the circulatory system.” AIED can be treated with drugs. Prednisone, Methotrexate, and even Remicade, Humera or Enbrel are all drugs the doctor will use to try and correct the progress of this disease. If it is caught early enough the hearing loss may be reversed, or at least stopped from progressing any further. Not everyone is able to tolerate such strong doses of these drugs though. There is no cure for Meniere’s Disease, although treatment is often in the way of prescribing a diuretic, to treat what may be fluid in the inner ear, based on the theory that Meniere’s Disease symptoms result from excess endolymphatic fluid in the inner ear (“idiopathic endolymphatic hydrops”). While this is the prevailing theory, it is not the definitive theory or the only theory. Diet and stress reduction have also been practiced in treating Meniere’s.

My ENT placed me on high doses of Prednisone daily along with a diuretic and instructed me to return in 2 weeks time for another full hearing test and exam. He told me that in many cases his patients have responded well to the Prednisone, in other cases they did not. He explained if I did not respond to either medication, they would be stopped and I would need to learn to live with this diagnoses. If I did respond well to the treatment he assured me he would alter the medications and continue monitoring me.

Since my diagnoses, I have begun to experience the same sensations in my right ear that I now have in my left ear. The ringing has intensified, the vertigo is back, and I have that same muffled or full feeling along with pain. It feels as if my hearing is diminishing in my right ear. I am hoping that the recent Remicade treatment for my Osteoarthritis and the high dose of Prednisone along with already taking Methotrexate for my Rheumatoid Arthritis will halt both ears from becoming any worse and maybe even better reverse some the hearing loss, vertigo and pain I am experiencing. Right now I can still hear well enough to carry on a conversation if the speaker is aware I am somewhat limited by the amount of hearing loss I have, and that the surrounding noise levels can and do make a difference in not only how much I hear, but also in whether or not those noises are too distracting. I am still able to speak on the phone, for those of you who are interested in calling me, and hopefully I can get a hearing phone before or in case I have any more hearing loss.

So that happened!