I am 59 years old, and started with light headedness in 1969. Spent 10 years searching for answers. Finally was sent to University Hospital in Boston for testing. Of course, everything was normal. Well, they were neurological disorders, thank God they were normal. When I was released, I was told my diagnosis was Vertigo. The doctor said " It's a minor inconvenience, go home and live your life". I was so shocked. I could have pushed him out the window. After that, it was lots of docs, and lots of meds, and finally a break through. I was diagnosed with diabling positional vertigo. I was happy to be told a name, but now what. I had many episodes of crawling to go to the bathroom, stayed in my bed, walls moving, floor moving, holding on to walk, etc. I was so sick, and this doctor sent me to another doctor who opened my head. He operated on the 8th nerve, did a decompression. I hemmoraged (spelling), so they could not do what was planned. I was told it went fine, and the doctor went on a ski trip. He was back on time to discharge me, and I was home 2 days and started with an infection in the wound. I spent a month being treated for the infection in a room that was sterile. I felt so much spinning and was so weak. The movement was terrible. Felt worse, but lived with it until a therapist started treating me for the illness. I was doing much worse, but able to work off and on. I was a partner with my sister in a flower shop, it was hard not to work. Everyone at work said it was all in my head. Had another surgical attempt in 1984 in Pittsburgh. Dr. Peter Janetta and Margaretta Moeller were teaming up to help vertigo patients. I had 8th nerve surgery, again. It seemed to work some, but the symptoms returned within the first year. They offered to do another surgery on the other side, but I said no. I went back to work, and tried to work through it. It has been so hard as I look back to act normal. I mean, not dizzy normal. I mean, able to think normal. It is getting worse once again. I no longer fear it, I try to rule it, not it rule me. I have recently seen a doctor who is very well known in the northeast. He did 5 hours of testing and has just called to let me know the results. I have vertigo, but I also have Meniere's Disease. I have another appointment to see him to discuss this further. He wants me to start therapy for the vertigo, and it going to use medication for the Meniere's. This is my story, I would love to hear from you. It's been a long road for me. I have deafness in my right ear, and tinnitus on the right. I can't wait to see the doctor so we can talk. My headaches have worsened, too. Jeanne
Hi Jeanne - It sounds like you have been through the mill. You certainly deserve a break. I was dx within 3 months of my first vertigo attack in 1975. I've managed without meds and surgery, going deaf along the way. Thank goodness there is such good technology now and I'm trying to cope with the deafness. So far, so good! Please keep us posted on your treatment progress.
Hi Jeanne and welcome to the forum! It sounds like you’ve had quite the ordeal with dizziness and vertigo. I have been much more fortunate in that my condition is no where as severe as yours. I was treated with medications to help lessen amount of vertigo. Also, I made adjustments to my life style to help remove things that exacerbated my condition. I am sure you will have a lot to add to forum and I am looking forward to reading your input. Joe
Hi Jeanne, Welcome! You sure have been through it all - good for you for hanging in. It sure takes a lot of strength. I hope the new medications give you some much deserved relief. Please keep posting and let us know how it goes. Amethyst
Jeanne, Welcome to the forum. There are lots of friendly people here who will help you feel that you are not alone with your illness. I am sure your doctor will have lots of information for you to help you deal with MM. You will learn from the board not all docs treat MM the same, and sometimes you need to speak up for you. Most docs agree to low sodium diets and diuretics as the first line of treatment. Canada and Europe docs use a rx called Serc, not available in US except by compounding pharmacies. The board crashed a few weeks ago while they were attempting to save some files in the archives, so lots of valuable info. was lost. I'm sure others will come along to post their experiences. Post any questions you have, someone is bound to be able to answer them. KareBare
Jeanne, Welcome. Be prepared. The therapy will likely make you feel a lot worse before it makes you feel better. But hang in there! It can make all the difference, because not only do you get better now, but they give you skills to use in the future to help you recover from attacks faster. Good luck, Tracy
Hi Jeanne and welcome to this great forum. It does sound like you have been through so much. Hope your new doc and the diagnosis helps you get answers and some relief. As the otheres have mentioned the therapy really makes a world of difference withthe dizziness.
Hi Jeanne and welcome ! At least here you will never be judged or made to feel insane. We have a disease. One that others may not be able to see or understand, but one that is extremely difficult to deal with just the same. Hopefully, this new doctor will be able to help you. I've been doing the doctor thing for many years. I certainly understand your wanting to push the one inconsiderate "healer" out of the window. I've been told that I'm just depressed! Bull!!!! I'm coping the best that I can. We all are. While I don't wish this on anyone, it would be nice if just as Nasa trains the astronaunts in simulations, doctors could experience one trip with MM. Perhaps, not a fair statement but some of them need to know what this feels like. Maybe Tucker's DVD will make it into med school! Keep us posted. Hugs, SherryC
Hi Jeanne. It is terrible what we have to go through to get a diagnosis and even then the treatment can be just as bad. I hope things work out for you. I also had attacks off and on for years before it progressed to what it is now (lot's of dizzies and tinnitus getting worse). You have found a great place for information, questions, support and just about anything you need. We understand and are here for you. Keep on posting! Good luck
Thanks so much for the welcome. It makes me feel so good. When I read the postings, I felt a relief. There are other people like me. I don't feel like I am talking to someone who has never had the movement before. Today is a light headed day, feel like I'm being pulled to walk another way. It is the feeling you get just before the spin begins. I feel like I have finally come home. Jeanne
