Hello All! So, what a strange 10 days it's been about 4 weeks ago, woke up one morning to some slight deafness in my left ear. Didn't think anything of it, had this happen on and off over the years and it's easy enough to ignore. Fast forward to ten days ago and it's night time, I'm brushing my teeth and suddenly start wobbling! Weirdly I'm unable to balance very well. Didn't think much of it, just grabbed the wall to steady myself. As I walk to the bedroom I can barely balance, staggering like a drunk. Soon as I lie down BOOM the dizzyness hits me and the room is spinning. Loud tinnitus in my left ear, barely able to move my head without everything going crazy. Had this wave of panic hit me, flushing red hot whilst trembling and a weird feeling of doom. Managed to sit up but that bit of movement brought on huge nausea, crawled to the bathroom and for the first time in years I threw up. This carried on for the next 2hours before finally managing to fall asleep on the bathroom floor ;D Next morning and I felt like I was hungover, feeling fragile and nauseous for half of the day. Went the docs who mentioned menieres. Got sent for blood tests and everything came back normal. Was given some prochlorperazine tablets in case it happens again. few days later and I'm woken up at 3am by what sounded like a high pitched gong going off in my left ear, flushing boiling hot, dizzyness kicking in....swallowed those pills and luckily the spinning didn't start. Couple of hours later and I was able to fall asleep. Saw another doc and she seemed to think it's an infection (despite no infection markers in the blood tests) so I've been prescribed Amoxicillin antibiotics. (hate taking any antibiotics, kills off all good gut bacteria ) Worst bit so far though is the fatigue. Normally I'll hit the gym several times a week as well as calisthenics and rock climbing. Just attempting pull ups or push ups leaves me light headed and exhausted despite feeling fine before I started. I've also been feeling a lot of pressure (on and off, mostly on)in my left ear since this started. I'm really hoping it's a simple infection, never had anything like this before. Does all this sound familiar? Thanks for reading!
Is the Dr you're seeing an Oto? Do they claim they specialize in Menieres? If so, what is their standard treatment for Menieres? You can ask these questions before you make an appointment. You don't want to waste your time, or the Drs which is what you can tell the receptionist. Sounds like Menieres symptoms to me, but it could also be an infection that the blood tests wouldn't pick up. Do you have allergies? That can cause a sinus infection. Try to antibiotics. If they don't help, ask for an antiviral. Viral infection verses other infections. Many of us have had success with long-term antiviral treatment. If you read through the threads you will see that. There are other possibilities to treat Menieres symptoms, just as there are other causes. You need to research and be pro-active. Don't get hooked into anxiety as then you will have another symptom to deal with. You have a come to a good place for research and support. Good Luck to you. Also, a Dr who gives you a diuretic and narcotics to treat Menieres suggesting a low sodium diet MAY not specialize in Menieres, since that seems to be the protocol for Drs not informed or knowledgable about current treatments.
No, the Doc was a normal GP. When I described the symptoms she did the same thing I did, went on google Next step is if these antibiotics don't work, I'll get referred to an ENT specialist on thursday. However knowing how slowly our NHS system works that could takes weeks for an appointment. Luckily I have some private healthcare cover through work so will be putting that to use. I've done a bit of reading around this forum and some other sites, I've already ordered some of the stuff JOH recommends and thought I'd give that coconut thing a shot as well (forgot the name of it now) that all should be arriving in the next few days. Totally agree about being pro-active and finding treatments out yourself, certainly not going to sit back and just wait. It interferes with my life far too much! I need to get back in the gym/up the climbing wall ;D As far as the anxiety goes, after that first attack it did scare the s**t out of me and I was worried about going anywhere out of the house in case it happened again. Now though I know I have 10mins or so of warning signs before it gets nasty, enough time to get some pills down me and find a corner to sit in, lol. No allergies that I know of. Some food intolerances but I'm careful to avoid them. Don't drink alcohol, take drugs or smoke either. My diet is pretty good to begin with and quite low in salt so that shouldn't be an issue. Don't fancy the diuretics route unless other avenues have been exhausted first. Thanks for the reply, this does seem a great place. 8)
It could be several things, Meniere's which I hope it is not for your sake, Vestibular neuritis or labyrinthitis which are disorders resulting from an infection that inflames the inner ear or the nerves connecting the inner ear to the brain and have same symptoms of MM but curable. Try and find a neurOtologist they usually know more about these illnesses than regular ENT's. Or a doctor that specializes in vestibular disorders. Testing should be done to rule out other causes. Good luck, keep us posted
Hi I'm also from the UK and sorry to say that it seems typical menieres symptoms to me. Now is a very important time for you because with each menieres attack more inner ear receptor hairs can potentially flatten causing less hearing ability. I tried to get antivirals from my GP and ent without success to counter the herpes virus from ruining my hearing. I am deaf in one year but I am very well now. Suffered horrible vomiting and vertigo attacks from 2005 to 2009. I would like to tell you alot more on how I have come through the other side but its 1.30 am so I'm going to bed. You are very welcome to send me a pm and I will try and help you if I can. My Name is Frank and I am from Liverpool and I stick around to try and help others, just as I was helped so much by this forum
With your antibiotic, make sure to take a probiotic (not within 2 hrs of the antibiotic). It will help to "replace" the good bacteria that the antibiotic kills off - and minimize some of the negative side effects. Learned that the hard way. I would ask your GP to start you on antivirals. It can't "hurt" and if you can get started early enough - if it is Meniere's - it could help to protect your hearing and may minimize your Meniere's symptoms and attacks. I would recommend printing out the protocol that you can find here by searching and present that to your doctor. As your current doctor is not familiar, he/she may be more open to starting the a/v protocol than an "expert".
One thing I'd suggest is not panicking. You're going to get a lot of information, get a lot of suggestions, things to try, etc. Find a good doctor that has experience with MD, and get all the tests required to make a proper diagnosis first. You could have a few other things causing the same problems and you'll want to get checked for them first. (Someone had started a list but I can't find it off-hand.) If you see an ENT that just says, "Sounds like Meniere's .... take this pamphlet and eat like a rabbit for a while. We'll see you again in three months" find another doctor. (I've been to four and even the last one hasn't been that helpful.) If it comes back as MD - Which is really a diagnosis of omission instead of something you can get tested for - then you can start trying things to see what might help. I'd suggest getting that squared away before you start taking 10 vitamins, antivirals, antifungals, Monolaurin, French Marine Pine bark, all while having your upper cervical spine adjusted, flying to Germany for Regenokie making sure to get the low sodium meal, and talking with the guy in Australia that can't be named. One thing you can start doing right away is keeping a journal to track what might be causing your symptoms. (Something I've been negligent in doing myself.) Here's a more recent one. http://www.mindovermenieres.com/a-free-tool-to-identify-your-menieres-disease-triggers/ (Though I'm not sure why I had to subscribe just to download a PDF ...)
tmcmahon2: Ha! I like that. Glad to see someone can still poke fun and have some humor in the face of this retched disease.
More jokes, less stress. I was a bit of a wreck between the initial decongestants and steroids to try to clear my ear up, running around to doctors, going into the tube for an MRI, and being told it's probably Meniere's. The sooner you get over the "holy crap this is horrible my life is over" stress and start moving forward the better you'll feel. I've noticed my slightly abnormal symptoms have improved as my stress has gone done. ("Slightly abnormal" being another thread.) Stress causing more problems? Sounds like an autoimmune issue, right? Right. One other thing from earlier in the thread - If you're going to take a probiotic after a course of antibiotics make sure to get one as few fillers as possible *and* as many organisms as possible. I've taken this one though I'm not sure it can be found in the UK. http://www.amazon.com/gp/product/B000H3B0CW
tmc: PLEASE, TELL ME...how does one get over the "holy crap, my life is over"? Conceptually, I understand it's necessity, but I don't understand how one goes about actually DOING it. Can you tell me your secret?
Not sure I should be considered an expert. I've only been at this for a few months and, as of yet, I'm more of a secondary hydrops profile than Meniere's. Also, I apologize upfront if I'm veering into "what are you talking about you don't have it anywhere near as bad as I do" territory. I'm mindful of the fact that I'm not as impacted by this as many of the people on this forum are. That all said ... It's a mental switch. You can sit and dwell on how bad it is, how it could get worse, what it might do to your life and dig yourself into a bottomless pit. I did that for a few weeks while scrambling to figure out what I could do or even what I did. ("Who did I piss off in a former life? Was I Nazi or something?") Then you realize that such behavior is self-destructive and not helping in the slightest, either with the symptoms or your life in general. In fact, given stress is a major influence on the immune system it just makes you physically worse and then it's easy to fall further down the spiral. Take that energy and do the things that are beneficial. Get a great doctor, cut out the stress as best you can, get tested for the litany of things that present as Meniere's, and start trying some things that *could* help. In my case I was convinced to see a chiropractor and he discovered my neck was a mess and could be causing my symptoms. (Could being the big word in the previous sentence.) At the very least I'll work on getting my neck squared away, take some of the supplements he suggested for a while and see if they help. If not ... I'll try something else. Why? I have no other options. Accept that you have it and move forward as best as you can. I'm not saying you should be blissfully ignorant and pretend it isn't there but you can't focus on it so much that you form a black hole that eats your entire world.
acujen, I will reply in that other thread rather than hijack this one any more.... http://menieres.org/talk/index.php?topic=1209.0
Hi Frank! Thanks for that, would definitely be interested in hearing more about your journey with this. I'll drop you a PM Any recommendations for the probiotic? There seems to be dozens out there. Sorry I'm not familiar with the 'protocol', what is that?
Haha, well I've already jumped in at the deep end and ordered a load of stuff, but you're right, before taking them I best try and find the route cause for this before just throwing everything at it. I'll check out that PDF, thanks!
I dived in a bit myself but don't get too carried away. For example - Getting some routine blood work and talking with your doctor *before* you start taking anything is a good idea for multiple reasons. One, you have a baseline to compare with. Two, you may catch something that wasn't caught before. Three, you have advice based on your medical history and background to keep in mind. For example, If you had some pre-existing liver function problems and started woofing down a ton of supplements it could be a bad thing.
Bloodwork all came back fine - white blood cell count, liver, thyroid and a ton of other stuff i couldn't remember. But yeah, I'll be gradually trying things one at a time rather than taking everything i can get my hands on ;D