About 17 years ago I started having unexplained episodes of dizziness, along with the dizziness I had ringing and pressure in my ears. At first the episodes were here and there so I more or less lived with it thinking it would pass. A few months into this I came down with a very mild cold, which lasted maybe 3 days, after this time the dizziness took a turn for the worse.. From that time on it was every day all day long that I felt off balanced, I felt as though the ground under me was always moving.

At this time I saw my DR who felt I had a virus, he told me this may last for 4 to 6 weeks. Six weeks later I was feeling worse so I went back to my DR and at this time he sent me to have a neurologist who ordered an MRI and several other test to rule out a possible brain tumor. The test all came out fine, so at this point my DR insisted that stress was the cause of my dizziness. I knew myself better and I didn't feel that stress was the cause so I went to see and ENT (ear nose throat DR) Since I was having all the pressure and ringing in my ears I felt this had to be inner ear related.

The ENT ordered an ENG, and several other hearing test. The results told them that I had vertigo but they did not know why and said there was nothing they really could do for me and chances are this would pass. It didnt! Months later I was still extremely dizzy so back to my DR I went, he still was pushing the stress diagnosis and wanted me to try an anti-depressant.. I said OK, Prozac was his drug of choice, after a week on the Prozac I felt as though I was going to jump out of my skin, it wasn't helping the dizziness it was only making me feel worse so I stop taking it. I went back to my DR and at this time he referred me to a specialist in Philly, so off to Philly I went. They repeated the ENG and other testing and also said that I had vertigo but they still could not give me a reason why.. The Dr at that point gave me some eye exercises to do at home that he felt would help, I did these for several months and they made no difference at all.

During this time I tried to keep working and doing the things that I normally did but it was getting harder and harder. I had to hold on to the walls at work just to get around, if I went into a big store with all the lights and the noise everything would start to spin and I would have to leave the store. I felt as though I was starting to loose my mind, no one could tell me what was wrong and people were starting to look at me like I was crazy because no DR could give me a diagnosis or help me.

Then it really hit me, I went into work one Saturday morning and within 30 minutes of being there I went to answer the phone and when I looked up the whole room started to spin. I ended up in the ER and they gave me some meclizine which they said would stop the spinning. It made me very sleepy but I still felt like I was spinning. Once I got home from there I ended up being in bed for 3 months. The spinning sensation would not stop, I could not walk 10 feet at that point, I really felt as though I was dying.

I called my Dr nearly every day, but he kept saying its just stress, and kept pushing different anti-depressants on me. The side effects from them were awful, one actually made me feel like I was floating right out of my bed. Then one day he suggested that I try xanax (tranquilizer) He said this would work different then an anti-depressant, he said what it would do is desensitize the nerve ending in the inner ear and in return I would feel less dizzy. So I gave it a try, and after just one I was able to get out of bed.. I still felt very unbalanced and had daily spins of vertigo, but at least I was out of bed. Soon after I returned to work, it was horrible, I tried so hard to keep going but driving was becoming a nightmare and once I was there I could not concentrate and still had to go around holding on to walls.. The xanax was helping but it sure wasn't a cure.

I was lost at this point and didn't know where to go from here, until my sister recommended that I saw the ENT she was seeing, she really liked him and felt he would be able to help me. I went to him and told him about the pressure and the ringing in my ears, and the constant dizziness and mini vertigo spins I was having. He glanced in my ears with a little light and said everything looks fine, he then scoped my sinus's and decided that going in and opening up my sinus's may help to relive the symptoms. At this point I would have done anything to get rid of the dizziness so I said Ok lets do it. Mistake! I ended up having 3 sinus surgeries with in a year and a half, after each surgery I would develop scar tissue and he would have to go in further.

He kept sending me for C-Scans of my sinus's and I kept asking him if he could do one of my ears because that is what is bothering me and he said no your ears are fine.. Finally he said OK if you think its your ears lets try putting some tubes in them. I said Ok, bad idea, within seconds of having the tubes put in I was extra dizzy and could not hear anything. He said give it two weeks for the hole around the tube to heal. So for two weeks I could barely walk or hear and at the end of this time I returned to his office and made then take the tubes out. He wasn't real pleased but he took them out anyway.. Later on I found out if you do have Menieres Disease the tubes can make things worse.

At this point I was too dizzy to return to work, and went out on temporary disability. I could not tell them when I would be feeling better since nothing was helping so at the end of the temporary disability they had to let me go.

At this point my ENT suggested that I go see an allergist thinking allergies might be causing my sinus's to stay inflamed, so off to the allergist I went. It turned out that I did have your basic mold, and dustmite allergies, so they recommended that I try allergy shots. I gave the shots a try each week I would go and each week they would increase the dose, the higher the does got the more my body started to reject the shots, so after nearly passing out in the office more then once my allergist finally said that she would not give me anymore shots. .

I was still seeing the ENT who did my surgery on a weekly basis. At this point he was getting frustrated because he could not get me better and so he had his receptionist call me and tell me that I was hurting his reputation as a Dr and they felt it would be best if I went to see a psychiatrist, because he thought this was all in my head. I was deeply hurt by this, but I made the appointment anyway, I figured once and for all let me see if this could possibly be from stress. My psychiatrist was the only DR I had seen in all this time who didn't feel this was stress related at all. He was very understanding of what I was dealing with and it help to talk to someone who understood and could give me some suggestion on where I could go from there.

I went to my eye DR who after checking my eyes said I was seeing double in one eye and he felt vision therapy would help me. So I went for vision therapy for 3 months 3 times a week and at the end of this time there was no improvement and I just could not afford to keep going so I had to stop there.

At this point I applied for Social Security Disability, it took 18 months to be approved, during this time I had to stop seeing DR's because I had no money left. Once I got the disability I found a new ENT. He ordered another MRI and more hearing test. This time I had started to have some hearing loss in my right ear, so he wanted me to see another DR in Philly who specializes in patients with dizziness and balance problems. It took about 5 months to get in to see him and once I did he ordered 18 different test for me go have before he would even begin to diagnose the cause. It took 3 months to get all the testing done and at the end of the testing he said that in one ear I have menieres disease, but my blood work showed there were signs of an autoimmune disorder, so he did another blood test called the Eastern Blot test, the results of this test take up to 6 months to get back. It came back positive and showed that I have what is known as an autoimmune inner ear disorder.

The treatment for this would be six months of a drug called Methotrexate (chemo drug) and prednisone (steriods) . I was having a very hard time tolerating the steroids, but was determined to stick with the treatment until I had a very bad allergic reaction to the methotrexate and had to stop the treatment. From what I have read many people cannot tolerate the treatment so there is research being done to find a new medication to treat this.

So for now all I can really do is wait and hope for the best.
Its hard to live with this but not half as hard as the not knowing and living with the fear of the unknown. I have pretty much excepted my limitations at this point and I do my best to make the best out of everyday, but I will never stop fighting and never give up the hope that one day I will be dizzy free.

I put this website up because I will never forget the fear and the frustration that I felt in trying to find out what was wrong with me, I felt so alone and so misunderstood and I knew if I went thru this that there had to be other people out there going thru the same thing. I just wanted to reach out to as many of them as I could to let them know that they are not alone and someone out there understands what they are going thru.

JND1993@aol.com