Hi everyone I've just signed up today as I found a link to this forum in my travels around the interwebs looking for information on Menniere's disease. I have not been formally diagnosed yet. I have appointments with an audiologist and an ENT specialist next week where I hope to get diagnosed. I have had 2 very nasty episodes of what I have come to believe is Menniere's disease. The first was several years ago. I was so ill I couldn't walk and the slightest head movement would have me vomiting. My partner took me to the hospital. I had very high blood pressure and they pretty much diagnosed that as being the reason for my vertigo and vomiting. It was hideous, and it took several weeks for the dizziness to go away. A few weeks ago, I had the same experience, but this time, I actually woke up to the world spinning. I started to get ready for work, but then couldn't and went back to bed. The cornice in my bedroom was spinning around at a terrible speed, and this time the vomiting was much more severe. My partner drove me to the hospital, and by the time we got there, I couldn't get myself out of the car.. I felt as if I might be dying. I was very frightened. They gave me IV fluids, something to bring my blood pressure down (a patch thing) and also an injection of stemetil and some other anti nausea drug by injection. After about half an hour, I was able to move myself again, without vomiting. It was such a relief. The Doctor I saw said that it looked like a text book Menniere's disease episode, and sent me away with a letter for my GP to refer me to an ENT for further investigation. I'm still not okay, and my hearing on the right side has been badly effected. I can't hear much at all on that side. I have had tinnitus for a number of years, but right now it's really bad. It has usually just been a sort of background thing, but now the noise on the right side competes very successfully with people's voices, the tv, music, anything really. I'm still dizzy to some degree, sometimes are worse than others, but there's no rhyme or reason to it. I've never been a big salt eater, but I'm not eating salt at all now on purpose, but I haven't noticed it making any real difference to how I feel. It's been a few weeks now, and it just seems to be lingering on. I can't contemplate that this is it for the rest of my life.. that's just an unbearable thought. Moments of respite give me hope that it will improve over time, but I'm not really seeing that right now. Anyways, sorry for the whine.. and I look forward to joining in on the discussions in the community. A couple of boring things about me - I'm 48, partnered, have 5 beautiful grown up children, and I'm about to move states to live in the country and raise a few goats and chickens, and grow my own food.. something we've wanted to do for a very very long time. I have to say the timing of this awful thing really sucks, as most days, I can't really do much of anything because I'm so nauseous and dizzy. I've lost about 10kg in the last month because eating has been very unattractive most of the time. Other times I'd be happy about that, but now it is just another thing on my list of complaints!
Hi Mrsgruffy Sorry that you find yourself here. You don't have a diagnosis yet but it sounds like classic menieres symptoms. The majority of people who suffer with menieres or migraine associated vertigo or another strain of the same symptoms average about age 50 although with an average there are some unfortunate people who suffer at an earlier age. You may not think so right now but there are positives that I can see from your situation. The first positive is that you have come to this forum in the early stages ( if it is menieres or associated or masking as menieres ). I am a success story but I wish I had found out about antivirals early on as I would have possibly saved my left ear hearing as I have lost 90% of it. Antivirals are alien to most doctors but if you can manage to get some if your diagnosis is confirmed it would certainly do you no harm. Did you know that you can get the stemetil in tablet form which is dissolved between upper lip and gum and as you have already discovered will stop an episode or shorten it. Serc or betahistine which is a preventative is the first medication that is used in Australia and Europe but not so in the USA. I'm from the UK so I was lucky. I think that it is unwise to cut out salt altogether as the body needs a certain amount and you could make yourself very ill. Other medications and things to try are the JOH ( John of Ohio )regime which is a mixture of supplements to combat this horrible affliction. You could have BPPV or migraine associated vertigo which is what I had in addition to menieres and it was avoiding dietary triggers which finally made me well again. Neck and shoulder problems can make symptoms worse or even be the cause. There is alot of reading here. You are welcome to pm me if you would like to know how I have tamed the beast. Wishing you well Frank
Hi MrsGruffy so sorry to hear what you are going through, we all understand. You came to a good place. Many of us have symptom relief and some have had their hearing improved as well. As Frank mentioned the 2 things to look into are antivirals for Meniere's and MAV and its triggers. There is info about both in the forums database. I have MM for 49 years and started antivirals almost 2 years ago and been vertigo free since taking them. There is hope for you to get symptom relief, its just trial and error to see what works for you. Hoping you find your relief.
Thankyou very much for the welcomes I am very happy to have found the forum.. what a wealth of information in the one place, from real people, at that! I still feel rather overwhelmed, to be honest. I didn't plan on this as being part of my future, as I'm sure none of you did either. I guess I'm in a holding pattern until next week when I see the specialists and get my diagnosis confirmed or not. I've read some wonderful tips and especially the information supplied in John of Ohio's(?) treatment plan. I will definitely be looking at that very closely once I've been to see the Quacks. I've never really been one for medicine, including alternative medicine, but it also looks like karma is a biatch and I'm going to have to eat my words about it all.. because right now, I would do just about anything to feel "normal" again. I will never take for granted another non-dizzy moment of my life, if I should ever be so lucky as to experience that again!
Hello mrsgruffy, What I would like to share is that what the "Quacks" have to offer is likely only temporary, limited and toxic. What JOH has to offer is holistic and in my experience far more effective and sustainable than what my "Quacks" had to offer. None of it is quick. I found Vertigoheel is helpful to take the edge of the dizziness which for me is no longer there. You have to have it sent from Eastern Europe here in the US but you can get it on Amazon. Yes I get about feeling normal! Had no idea who good that could be!