Okay so I am newly diagnosed and my hardest part is explaining things to my husband and children. I am in the middle of a "bad time" with very frequent vertigo episodes tinnitus and fullness. I am not sure of the lingo to use to explain things fully to my doctor and I am finding myself slowing sinking into depression at feeling like a burden. I need people to help me get started on this journey.
First, take a deep breath. You have come to a supportive place here. Nobody else can understand what this hellish disease takes from us. I have been dealing with it for almost two years,and it seems like it's getting a bit better. I am still having vertigo on a weekly basis, but I'm not panicking as much and that seems to shorten the episodes. You do have options for treatment. There are supplements, traditional mm meds, and some people on the board take anti-virals. It's hard for my husband and kids to understand as well, but I've found that if I ask them for help, they will do whatever needs to be done. On good days I make sure to give them lots of love and attention, so that I don't feel so guilty on bad days. Read through the posts on here. They're helpful in terms of understanding the lingo you need to talk to your doctor and your family.
There is a lot of treatments to help you out I see a lot of people here find the anti virals work I wasn't one of them tried for several months The steriods help me the most and lots of vitamin C is helpful. I think it takes a few months For your body to adjust to either diet or diuretics I'm New to this as well. I thank god for this Forum I have had more help here with questions Then my doctors .it's Comforting to speak to others who Actually understand what you are going Through.
B4kids-------before kids as in B.C.=Before children That's the way my wife and I describe life B.C. and with children. As cjbeau says Read as many posts on this forum that you can. You will see that many and I do mean many have improved their lives to the point where we are happy again. I don't know how many have actually been cured, but most have gotten better. I suggest looking at posts that talk about valacyclovir, acyclovir and JOH's Regimen. These are anti-virals and supplements to improve circulation. Most on here agree there is a virus causing our problems. Be persistent. Viruses are tough. You need to be tougher to beat it. Good Health to You!
Next time you are at the dentist ask for a TMJ evaluation. If you are at a point where you are looking for non traditional methods you could see an upper cervical chiro (NUCCA) especially if you have neck/back pain, or other alignment issues that preceded your ear symptoms.
In addition to all of the suggestions made so far you might want to consider food and drink triggers /mav. Discovering that for me was my saviour. Wishing you well
When you talk to your doctor you should share how long the vertigo attacks last (full vertigo, room spinning), is hearing impacted prior and during attack, does your ear ring, etc. For me I was prescribed Ativan that I place under my tongue if a full vertigo attack hits. It will shorten my attack to an hour or so vs 4+ hours. Stress and lack of sleep/insufficient sleep are major triggers for me. Extremely loud situations can set my ear off as well. For the days that I am "off" but not full vertigo, Meclizine helps with that. Meclizine is available over-the-counter cheaply and some stores have it in store brand. I tell people that when the vertigo hits it is like an amusement park ride spinning so fast you can't see...but you can't get off the ride. Anti-virals have helped me significantly. The earlier you can get started the better. Take care.
Try to see a neurotologist/otoneurologist. They have specific training and experience with menieres. They'll know which questions to ask and will understand what you're trying to say.
Everyone has given you good advice. I will add that there are many articles and posts that you can print to show both your loved ones and Dr. The first that comes to mind is one called, "Before a you Judge Me." I've always found that one in particular to be very helpful in explaining to loved ones what this disease is all about. I used to carry it in my purse! There are also posts about cognitive impairment, which is one that many people do not know and will explain to you and others how your thought process is affected. Cut out coffee, caffeine and the like. This always exasperates symptoms for most of us. Stress is a key factor for so many here. Stress feeds Menieres and Menieres feeds on stress. Your family loves you, you are not a burden. This is your guilt and you need to learn it is okay to depend on those you love. Most importantly, Do NOT be afraid to let them see you at your worst!! Sometimes seeing you that way has a greater impact than any words would. This is a very informative and supportive forum. Try not to research everything at once so as not to become overwhelmed. Deep Breathes and Baby Steps, take each situation as it arises and do not try to anticipate when the next attack will come or how it will be.
For me what has worked the best - and the longest - ( I haven't had a full blown spinning - vomiting - laying on the bathroom floor for hours attack since the beginning of April) -- Low sodium diet ( I can't take a diuretic because I have a bladder disease called Interstital Cystitis) so I really have to drink alot of water and stay between 1200-1500mg of sodium a day - I am very diligent about that- and yes I freaking miss Doritos!!! LOL - But I know its not worth what will happen if I have too much sodium... I take 6 lipoflavanoids a day ( 2 morning - 2 afternoon - 2 at night) - but they aren't cheap so I buy them 500 at a clip off of Amazon and save about $27..... I also take 1000 mg of B-12 a day which helps keep up my energy - sometimes the fatigue and brain fog is crippling - and Valiums when I start to feel dizzy and that seems to quell the episode..... I also use the Minette Device 4 sometimes 5 times a day... and I have gotten the Decadron shots in the past - my first shot was in April after my last big attack - and I started using the Minette Device at that time -- the shot lasted 21 days then I had another smaller attack - not as bad as the big one but still bad enough to end up in bed for 6 hours -- got another shot - while still using the MD --and so far so good.... so Idk at this point if its the MD - if the shot lasts longer - a combo of everything...Not sure how long I have to use the MD to notice if that is helping so I am trying to hold off getting another shot ( cuz yea - they really hurt- lol ) to give the MD a chance -- the bitch of the disease is its so much trial and error -- what works for you for a few months - or a year or even two - may stop working and you have to try something else.... everyone has different regiments.... try some of them out and see what works for you..... I can tell you that many people I have talked to who have followed a low sodium, low sugar, low alcohol diet have significantly less episodes ( I can't drink at all because of the bladder disease so I can't attest to that personally - maybe someone else can).... I have to say I am not as good with sugar as I should be so I am trying to be better about that..... I haven't had to try anti-virals yet - but I am not opposed to that at all if that's what I need to do. Good Luck!! Everyone here is so wonderful and it has been a God send finding this forum - I don't get a chance to post much but the information I read is invaluable -- I have passed much of it along to my ENT and he is very open to reading and and trying it with his patients....
Hi B4Kids, We understand how overwhelming this disease can be and how it totally disrupts our lives, so do not feel alone you are at a great place for support advice and treatments! I strongly suggest you try and get a doctor to prescribe an antiviral, many of us including myself have gotten symptom relief from them I have been vertigo and symptom free for over 2.5 years. You should read the articles in the forums database and read about MAV, at times Meniere's is diagnosed when it really is MAV and some times we have both MM and MAV, I have both. There is a wealth of information on these forums and treatments you will not hear about from doctors. But they work. But one treatment does not work for everyone, but with patience and trial and error you will find what works for you. This is the study by Dr Gacek who is a firm supporter of a viral cause for MM, his protocol for antivirals is on page 104 http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf this is a thread about MAV Migraine associated vertigo (headache NOT required) http://menieres.org/talk/index.php?topic=32.0 This a letter written by someone that explains how we feel and what we go through, which might help if you show this to your family. http://menieres.org/talk/index.php?topic=65.0 This is a thread for people new to the disease: http://menieres.org/talk/index.php?topic=264.0 All of these links are in the forums database. But I suggest you try to get an antiviral and follow Dr Gacek's protocol and take it from there.
Thank you Vicki for bumping these up as I requested. I feel certain these links are a great place for a newbie and not be as overwhelming to research themselves. You're the best! B4kids. Read and learn! Print, too. That's important.