I have now been having attacks every 2nd day - Last night was so bad, I honestly felt like ending it all. I am lucky to have someone who can hold my hand during this time and put me to bed. But my life has become so different the past few weeks that I need to find the impossible. What is the impossible? A recommended physician or Ent somewhere? I will travel, I will take out a loan to pay whatever. Is there such a person? My ENT here comes highly recommended but nothing has worked for me. I have tried the Betahistimanes. On last visit he recommended steroids? Has anyone tried them? Currently I am managing my own meds and herbs. Valocyclovier, lauricidin, Johns Regimen and nothing is working. The only observations I have made is that attacks come on more frequently if: - I get a cold or sinus headache. - moving my head a certain way - looking at a phone or computer. I am almost a senior so having surgery is probably not a good idea. Besides this wonderful forum I dont know where to turn.
Dr Rauch in Boston. Get your life back . I am atypical but if this ever starts to stop my life I will go for surgery . Almost a senior is still young . What about gent shots if you do not want surgery ? Good Luck do not give up !!!
Dealing with Meniere’s is counter-intuitive. The less you think about it the better it will be. Concentrate on your general health and wellbeing, and in so doing, boost your immune system. Avoid stress, eat well, and exercise in moderation. Try anti-virals, betahistine, diuretics, MAV medications. It is a beast, but it can be tamed....
You should try an upper cervical chiropractor. Many have found success with NUCCA certified chiropractors. Www.nucca.org
So sorry you are having such a hard time of it. It can be overwhelming but it can also get better. The only thing I could suggest that you ask your doctor to check you for BPPV,because you say it is positional. You could also have this and it is easily fixed.The crystals can get into the wrong canal. I wish you good luck and to better days ahead.
I agree, dont diagnose yourself. Go to an expert such as dr rauch, and see if this can be sorted out. Go to more than one doctor if you need to. Where do you live? Perhaps someone here can make a recommendation. I first went to a (actually 2) highly recommended doctors and they could not hlp me at all. I got help from dr derebery at House Ear in LA. Antivirals are what workd for me but happening when you move your head suggests bppv which as the other poster said, is fixable without surgery.
Jen, Sorry to read this. If you live in the Boston area, pick up the phone and call Dr. Rauch at MEEI (Harvard). I would get my diagnosis from him and follow his plan. There is no Bullshit with Dr. Rauch, he will give you your life back and you will be in the hands of one of the best Oto's in the world. He understands mm and "gets it" so to speak. He has seen and treated the worst cases in the world. PS: don't be afraid of surgery/I had the labyrinthectomy and so have so many others on this board but most are long gone never to be heard from again because they are out living their lives as normal people do. If you live in Boston area I recommend Dr. Rauch at MEEI
Thank you all. Some good advice there. I think part of me is not accepting the illness yet - doing some soul searching and shedding many tears... I live in Vancouver, Canada. Have started looking in Seattle and even the UK where I am originally from. My ENT cannot see me until July 22nd and another recommended specialist, Dec 2016! Unreal! I have had the Epley Manouver for the crystals and it didnt work. My latest thought is to have my husband drive me to emergency when I get the next severe attack. That way I figure I will be seen to by neurology and otynology depts. Will look into the Nucca but sometimes I simply wake up in the morning spinning.
Hi Jen- I see Dr Alan Langman in Seattle office right by the Northgate mall. He is a kind and thoughtful ENT. I am on antivirals. Good luck. https://www.healthgrades.com/physician/dr-alan-langman-x6t4f
low dose Xanax darling. It's that simple. Keep it in the back of your mind as a last resort. It's been my regimen for years and I get things done with a full life. I'm getting ready to take Salsa lessons next.
I can't really offer much advice since I'm still pretty new myself. All I can say is to just keep pushing through it. Push as hard as you can. I've made probably 4 emergency room visits since January. My old ENT sent me to an oto because he said he couldn't help me any more it had gotten so bad. I just finished my second gent injection and still have some mild symptoms. I'm going to push for one more shot. If that doesn't work I'm going for one of the more major surgeries. I'm only 42 and can't live the rest of my life waiting for the next episode to happen. Keep digging, researching, find a new doc that doesn't want you to wait until you are half out of your mind with this disease before he sees you. Good luck and good wishes coming your way..
Thank you all for your encouraging comments. I wish I could write more, but not very strong yesterday and today. I have left a message for Dr Rausch in Boston.
You may want to talk to your dr about trying treatment for MAV. Many hav both Menieres and MAV. But symptoms for MAV can be similar. I do second trying Nucca (or similar). Highly recommend Dr Fryer at The Balanced Spine in Issaquah. As others have shared, stress can be a major trigger (it is for me for sure), trying to find a way to minimize stress is key. If you don't already have it, I have a prescription for Ativan that I place under my tongue if the room starts to spin - it shortens my attack by at least 2/3. However, it is highly addictive so definitely something to take only as needed.
I went thru 2-3 attacks a week for at least 6 months before I was able to start to slowly get it under control.... For me Decadron shots every 6 weeks ( haven't had one in 7 months now), LOW-sodium diet - strict 1200-1400 mg a day -and that means reading EVERY label on everything that goes into your mouth - or into making whatever meal you make- I basically never eat out unless i just get a salad with oi & vinegar but have become a more creative cook at home making my own dressings and marinades etc... REST!!! Getting enough sleep very important. Lipoflavoids to help with the ringing..... valium to help when i start to feel dizzy... and to help with stress when needed.... vitamin B-12 for energy and C. ( I did use the meniette device for 8 months but haven't used it in 5 months). So far I haven't had to use antivirals but I would if I thought I needed them. I have only had 2 attacks in over a year. It does get better- you just need to find what works for you - for me - it was a lifestyle change for the better.... No alcohol, no caffeine, trying to exercise when I am not exhausted..... Good Luck!