Hello all! I posted this in the wrong forum, so I'm reposting here. Sorry for the error. I'm so happy to have found this forum. I was just recently diagnosed with Meniere's and have been struggling quite a bit. I thought I would give you the run down of my story and then I had a few questions. In September 2013 I had a single case of vertigo. I went to my primary doctor who thought nothing of it since I had just come back from a summer vacation road trip (lots of time in a car, lots of roller coasters, lots of swimming). In January 2014 (on New Year's Day even) I felt some pressure inside my ear and did the general ear wax removal regimen. Having suffered from migraine's for several years, I had a previously scheduled appt with my neurologist. She mentioned it could be Meniere's Disease, or many other things and to see an ENT. The first ENT I saw had no bedside manners. I had my first round of audiology tests done and they showed some low frequency hearing loss. I did not mention the vertigo because I had no real understanding of the disease. He said to see him in two weeks. I came back and my hearing has worsened and he mentioned steroids but said there could always be risks and I didn't feel comfortable with going that route. He still did not mention Meniere's Disease nor did I mention the previous vertigo attack. He told me to come back in two weeks. Because I was getting impatient with his "wait and see" attitude, I went to see a second ENT. A marvelous doctor who did a series of tests (MRI, allergy testing, etc.) He finally mentioned it might be Meniere's Disease and wanted me to see a specialist. At this point I had started looking things up online and getting very nervous. I finally went to the referred otolaryngologist (again a very nice doctor) who did some more audio tests and concluded it was in fact Meneire's Disease. He prescribed me some steroids and Xanax (though mentioned if I had persistent anxiety I should start an antidepressant in a few weeks) Having a history of substance abuse and now 8 years sober, I was not comfortable having a full bottle of Xanax around yet I took it a few times when I was struggling with the anxiety now that some tinnitus had set in. Two weeks later I went back to see the doctor and the tinnitus was gone and the hearing was improving. Even with this good news I was still catastrophizing the worst: I would get vertigo so bad I would be housebound and unemployed. Later that week I went to see my primary care doctor who if I wanted to go on the antidepressant I had previously been on for four years, Lexapro, and I said yes. For some reason, I had a very bad reaction to it this time and my anxiety shot through the roof. My tinnitus came back stronger and I lost 22lbs in the matter of 4 weeks. I had to see a psychiatrist who put me on two new meds to help me sleep and to counteract the anxiety. I seemed stable for a few weeks. Fast forward a month and one trip to the ER because I though I was having a heart attack (just a panic attack) and I'm now on: the diuretic of course, Valium, Lamictal and Remeron (for sleep). I am a wreck. I still haven't had another attack of vertigo outside of last September, but I can't handle this constant tinnitus, fogginess, fullness in the ear and migraines. I feel like I'm at the edge. I am also really disappointed as I worked really hard the previous two years with a therapist to finally remove Lexapro from my life and now I'm on three new medications. I guess I have a few questions and need some encouragement: Did I miss my window of opportunity in March when the tinnitus was gone and my hearing improved? Does tinnitus just ever go away like the other symptoms of Meniere's? I just feel like these sensations I've had for the past 3 months are permanent. I'm a writer, and I haven't been able to concentrate since March on anything. I have tried acupuncture and JOH's regimen (thus far two weeks in) but has anyone ever had success with a chiropractor and are there specific things I should look for in a search (I do have terrible posture and work in front of a computer all day)? Does stress tend to be a main trigger for this to initially appear in one's life? I have struggled with anxiety/depression my whole life and this type of disease seems to be well-suited for me to obsess about and to feel isolated by. For those that are in relationships, how do you handle your anxiety/depression with your significant other? I have had an enormously supportive boyfriend, but I can tell the last few weeks that its finally really starting to take a toll on him emotionally. Finally, I am super encouraged by those that have shared their struggles and successes with this condition. I'm definitely in the dark valley right now and though there have been some really hopeful things discussed in here, there are also some really terrifying experiences. I worry about, as much as I sympathize with, those that experience months of vertigo attacks, surgeries and other failed procedures. I would like to be able to stand on my own two feet in the near future (without psychiatric meds) and work through this to only learn more about myself and maybe overcome some other things I've struggled with the last 37 years. Obviously, I want most to heal and I would love to hear some encouragement from you all. Thanks for reading this rambling introduction, it's been a long 6 months in my head. s
Admin Post Ooops, I deleted it per sleep's request since it was a dupe. Could you repost your reply here, BumbleBea? Thanks.
No problem. I sympathize with all of your Dr./diagnosis problems. I, too, needed to see a psychiatrist. Maybe I can help you with that aspect. I had been on Valium for years. After awhile I started taking more than was diagnosed. I was also taking Vicodin for some medical issues. Needless to say, I was on too many chemicals and needed to wean off on the advice of my OTO who is terrific. Finding a Dr. You are comfortable with and will answer all of your questions is key! After all of that, the panic attacks started. You know how it seems like it's been an hour when it's only been ten minutes. You feel like you're having a heart attack or are dying. Been there. So, I finally saw a Psychiatrist. I now take Lexapro-10mg., Lamictal-75mg, a diuretic, and I have Klonipin. I take one a day and can take another if needed. I realize how hard it is to take meds when you've have prior issues and have had to wean off but if you take the meds properly, you'll be fine! My Oto has tried a variety of things to help my Menieres, but it wasn't until I was put on the antivirals that I noticed any improvement. It didn't work right away. It took months, but one day I realized I wasn't having vertigo anymore. Stress is a major trigger for me and many others. Stress will also bring on those panic attacks. My Oto once told me, "stress feeds the panic attacks and that feeds the Menieres symptoms." As you read through the threads here, you will find that many people have had many treatments with many different results. My Oto believes you try the less invasive treatments first. So as far as having Menieres change your life, it probably will, but it doesn't have to be a death sentence unless YOU let it. I know it's scary at first, but at least you now know what it is and have a place to research and be with people who understand exactly what you're going through. You're not alone in this! I hope this has helped in some way. Bea
Thanks so BumbleBea - its been so tough and as I've said, i've struggled with addiction, depression, anxiety for many years. At the root of all of these things has been fear. And this condition has been feeding that machine to max. I think ultimately it will maybe help me overcome these things but it seems so insurmountable from where I stand today. I really appreciate your kind words and suggestions, I'm being more selective with what allow myself to read online regarding the illness, because up until very recently did I realize that there can be so many various triggers, causes, forms of relief. I still struggle mostly with that day in March when I had several symptoms in remission (tinnitus, ear fullness) and I decided to run back to meds which made it worse. I am praying its just a setback in this first serious episode of this crazy condition. I am considering taking some time off from work in July to work on some mindfulness training and get away from my job (stress), commute (stress) and new york (STRESS). We'll see how that goes.
Read about AntiVirals. Then ask your Dr. About them. They have helped many people here. The dosage is different. I take 3-400 mgs of Acyclovir everyday. It has also helped maintain my hearing which is important. You have a good attitude. If you can take some time away from work and it will help you feel better than do it. It sounds like it's stressful for you. I think the most important thing for me was accepting it, then dealing with it. I didn't mind the tinnitus or even the pressure, it was the vertigo that did me in. You'll get through this!
Sorry you are suffering at the moment. There are plenty of people here that have menieres and mav or just mav. Have you considered treating your condition as mav. If it is mav, food and drink triggers could play a part. I hope you find your answers. Avoiding certain food triggers helped me alot.
Thanks jaypr, I eat so little these days because of the panic, that it would be hard to identify what it might be. My allergist has been trying a few things with me, but argued against LEAP testing which I've read has helped some people to identify allergens. She said, all people will test positive for some foods and its really expensive. I think what I struggle with most right now is my decision to go back on an antidepressant in March. The week prior I had gotten a good report from my oto and the ringing had subsided. Why the hell didi I choose to go back on an antidepressant that seemed to make everything worse again. Did I lose my chance of being one of the lucky ones that it would quickly go into remission? I struggle with this on a daily basis since now I'm on so many medications to suppress the anxiety as we move into month 7. My boyfriend is at his wits end because of this obsessive thinking, my work has suffered, etc. I am having such a difficult time accepting where I find myself today. s
I know that it is much easier said than done....but the one thing that can really start to make a difference is if you find a way to relax and just take a deep breath. Early on after my initial diagnosis I was researching everything and trying to "fix" this thing. Work was stressful (always), my personal life was stressful (my mom had major health issues) and then this darn thing that comes out of nowhere. And the days where I didn't go full vertigo, but my ear pressure was high, hearing lower and the ringing...felt like I was always waiting for "it" to happen and I go dizzy. Stress is such a major factor in this disease/syndrome. I think where I finally started to get some relief is when I was able to appreciate the good things. My mom would ask me every day if I had a vertigo attack; the days I didn't she would say "it was a good day". Initially it was hard for me to accept that being so darn tired every day, struggling to hear and do my job over the darn ringing and dealing with that heavy pressure was a good day. But slowly I started to think of it the same way. Appreciating the small victories seemed to help. Maybe because I stopped focusing on trying to control something that was not controllable. With regards to the meds, what I will say is that there should be no stigma or issue with taking them. Nothing to feel bad or guilty about. I will also say that if there are so many different options for medications and perhaps you need to talk to your doctor about trying others rather than sticking with one and adding three others to help with what the one isn't doing. Also, it is an "old school" drug but I have heard that amitryptiline seems to work well for some people. My mom was on it for years for her depression issues but it is also prescribed for some with Meniere's as it seems to control some of the brain signals that may start a vertigo attack. Good luck. Don't beat yourself up!
I wonder sometimes if stress is one of the main triggers of this condition's onset. I am having such a heard time these days even without vertigo, like others have said, until I can really accept this, I don't think I can start to heal (for whatever that means). I am so grateful that the low wooshing noise has gone from my right ear, but these higher pitched sounds that seems to resonate throughout my head are the ones that I just can't seem to distract myself from. I think this type of sound is the type of tinnitus that more of the general population has - several of my relatives have described this same sound to me. My friend has been very helpful in regards to this, she suffered for many months with tinnitus until it became almost in-perceivable. I hope that day comes, and the vertigo continues to stay at bay, but acceptance is a very difficult thing to wrap my head around right now - knowing (or at least feeling) that I could have done things differently from the beginning not to exacerbate this condition. Thanks for your words nicmge, I should be grateful as I feel that my symptoms have so mild to those I see on this board. I will discuss more with doctor in the coming days about options. s
I don't think you could have done anything differently that would have made a big difference so let that one go. I don't think it's a big deal you're on new meds after getting off of one so let that go. Tinnitus is just tinnitus. It can be annoying but if it continues you'll get so used to it you won't be bothered by it so let that go. Since you said you've had stress for a very long time, I don't think that in itself brought on Menieres so let that go. Now you need to talk to your Dr, maybe your Psychiatrist and get a handle on some treatment plans. I remember the beginning when I couldn't eat and was dropping so much weight. It passes. It's all in how you think about it, stressing definitely won't solve anything but may make matters worse, So Let It Go!! I'm not being mean! I'm giving you advice that was given to me and it really made a difference. I hope this helps.
Stress absolutely is a trigger. It is a MAJOR one for me. The thing with this darn disease is that it is so random. We have to use every tool possible to not let it stress us out everyday. It is not predictable - but for me, too much stress (also if I get tired, not enough sleep) can absolutely bring an attack on. Don't get me wrong with my earlier post. Yes other people may have it worse than you..than me...but we are still living through this thing so it is still bad to us. My big point was to focus on what is good "today". If the whooshing is better than yesterday, it's a good day. If you didn't go dizzy, it's a good day. No doubt that life has a lot of difficulties and sometimes sucks wind. LOL But what I have found (and do my best to remember) focusing on and dwelling on those bad things doesn't help; only makes it worse. My mom (and friends and co-workers) always laugh at me because no matter what the situation - after a minute of thought I will always have a "on a positive note". Some of those positive notes take longer to find than others - but there is always a positive somewhere. This thing can make people depressed and anxious; then the more depressed we are, the less we see positive, the less we do other things; which then makes the depression worse. I am still early on trying anti-virals but so far so good. The ringing in my ears is not as bad. If you have not tried them, it may be worth talking to your doctor about. In the meantime...focus on trying to relax and lower your stress.
Thanks BumbleBea - I have been living in the actions of the past three months and the choices I made so much, its really eaten me up. Its obviously compounding the stress that I've already felt in my life for a very long time. I may have said this earlier but perhaps this condition will finally make me changes in how I handle stress, now that I type that, I know it will make me make changes. I wish it wasn't something so intrusive, but its not cancer either. nicmger - enjoying today or at least trying to stay positive goes hand-in-hand with the above. For a long time, I thought positive/happy people were just naturally born that way (and some probably are) but for the most part, it takes work and work I must do. I was able to speak with my boss at work and get two weeks off starting next Thursday. I hope some time away will bookend this diagnosis reaction phase and I can work out what I need to do going forward. One week in Boston to see the family, and then I rented a cabin in VT for a week just by myself (and my white noise machine).
Stress was a very big trigger of my mm, when i was first dx in 2011 was but on a nn salt, no caffiene diet with HCTZ (fluid pill) now I am on diazapam 5 mg 3 times a day still on the fluid pill. The depression is really hitting y hard now, going to go se about getting help with that. My tittunis is constant with fullness in ear 99% of the time. I just try to go somedays minute by minute just to get thru the day