Hi All, I am so new to this I can't even spell Meniere's right yet. 3 weeks ago everything was fine - then I noticed a pressure change and ringing in my ear which I thought would go away but much to my dismay continued and continues to this day. The dizzy spells don't always make my world spin but they definitely transport me to another place. It's like I'm completely out of it when they happen. So far I've taken blood tests, had a brain MRI, and have a VNG scheduled for Tuesday. My ENT has prescribed me a tapering dose of Prednisone which has been the biggest hurdle. I feel like it's side effects are worse than the disease. It has caused me dizzy spells (not as bad as the ones before I started), nausea, vomiting, night sweats, and lack of sleep although I continue to my Ambien on a nightly basis. I am trying to hang in and have missed 4 days of work from testing and side effects of the medicine. I'm afraid to go out anywhere for fear I may have a vertigo attack or one of the Prednisone side effects causes a scene. The other hard depressing part is the low sodium diet. I have never cooked this way before and I'm having to cope with that now as well. Any positive thoughts or comments would be appreciated. I am feeling most helpless right now and depressed. I've already been diagnosed with fibromyalgia almost 10 years ago. Possibly having another chronic disorder just takes a person down a few pegs. Thanks to anyone who took the time to read this.
Welcome! First poitive is that your ent is doing what s/he should do. An immediate try of prednisone, an mri to rule out other possible causes etc. At first it is daunting and seems hopeless but if you read here, there are many many successes even for people who don't respond to the first pass of treatment. Try the low sodium, if it helps, great, you will adjust and if it doesn't, then you won't have to go tht route. The idea is more to keep the sodium even throughout than ultra low. Soo count the mg odf sodium and spread them out. Sodium didn't make any difference to me but eliminating caffeine did so give that a try too. The treatments that helped me were antivirals (acyclovir and famvir) and allergy testing nd shots although I don't have classic hay fever. Other people have found relief from other approaches. Keep reading and try to be patient. I believe things will get better.
I used to feel the same way you do its always the first reaction to this illness so good news your normal! One thing I did for self was buy a nice walking stick from brazos a .com store. my stick is more like having a wall with me at all times. I get a lot of complements on it and I mean ALOT. I thought my self weird for it and decided after hurting my wrist trying to balance with a cane that I was to young for a cane anyway. Seems to me this illness is all a chess game of the mind. Don't feel defeated and take one day at a time. save your seat work for days that you just can't get up and pick up a hobby that you can gain some confidence with. It really helped me to start quilting again. On days I feel good I the things that would be hard on days I feel bad. Chin up keep positive and don't break under the bend. I can tell you it gets worse then better.
Welcome. Oh my can I relate. The dizzying feeling and side effects from the prednisone and later the dexamethasone shot were worse than the disorder itself. I felt awful and will never take prednisone again. I too felt out of it at first. And really tired. Clarotan and the JOH regimen changed my life. I still have issues now and then but overall feel much better. Much luck as you work through this.
Oh and I also keep a low salt diet of no more than 2000 mg a day and try to stay under 1500. It does make a difference for me.
A low sodium diet is probably one of the hardest diets to maintain since sodium is in just about everything. It's not until you start reading labels that you realize how much sodium foods contain, especially in things that you wouldn't expect to have a lot of sodium. You can adjust to it even though it may involve more home cooking than you are used to. One way to compensate for salt is to spice foods up a little. If you look for them, you can find salt-free spice blends by brands such as Mrs. Dash and McCormick. I was even able to find salt-free taco seasoning and chili powder at a local health food store.
Sorry you are beginning this journey. Hopefully it will not worsen for you. But I agree with June, your ENT is doing what s/he should be to start. I did it all these past 12 years. Without the gory details, let's just say prednisone was a disaster for me, actually added severely to my tinnitus and some other things. Other experiments did not work. Had a labyrinthectomy in my left ear a year after I was diagnosed, because the vertigo was so bad I could barely get out of bed. Have a cochlear implant there that never worked. I am severely bilateral, and like you, have not one but several other chronic/autoimmune illnesses, which some research suggests tend to reinforce Menieres and vice-versa. And I have a brand new pacemaker now too! I mean, the fun never stops. You just have to take it day by day, experiment, do your own research, find what you can handle and what you cannot, what helps and what hurts, identify "triggers" if possible. I do very low sodium (usually under 1000 mg, though I aim for 500, which means I eat nothing processed and pretty much make all my own food from scratch, which not everyone can do.) And i take a diuretic, as I have all these years, and pretty much all of John of Ohio's regimen. I think I have arrested the worsening of some symptoms, but I know I will never get better as such. So I do my best to find satisfaction in little things in life, such as it is. Doing internet things, watching TV, talking quietly with my wife and helping her with paperwork and such. Limited exercise for a variety of reasons. It's enough to keep me going, though I cannot do 95% of what I did before this curse struck me. My bottom line is that while my pit is spectacularly black, I keep my eyes lifted up to see the sky. And that is what so many of us do, when giving up would be far easier in many ways. And good luck!