I have read a lot of posts over time with people querying symptons and wondering whether they have MD. I have come to the conclusion that people's experience of the disease varies considerably from one to another.
i have had MD for approx 30 years and apart from my constant tinnitus, on a day to day level I am really not too bad. I cannot cope with heights, down escalators or boats but that's it. My attacks when I get them are severe though, raging tinnitus being the warning signal. I have no option but to lay as still as possible on the floor until the spinning stops and it is safe to move. For me the spinning is so violent i am unable to focus on anything. Not only do i vomit throughout these attacks but nearly always lose control of my bladder and bowel as well. It is a most undignified illness to have and each attack leaves me in a highly distressed state. It is often 5-6 hours before i can move from the floor to my bed. These attacks are thankfully not that frequent but do tend to appear in clusters. I have anything from two to five attacks like this a year. It might not sound much but the severity of the atracks means i am left feeling very vunerable and it takes a while for my confidence to return to return to my normal daily life. Thankfully every attack i have had to date has been at home and i cannot even begin to imagine how i would cope if one came on and i was in a public place or at the home of a friend.
My tinnitus is relentless, sometimes disressingly loud but most of the time I am able to 'tune it out'. My hearing though has not really been affected by this and shows only minor hearing loss.i am very happy that this is the case but many drs would say that the hearing loss is a classic sympton of MD.
i read an article a while back on the stages of Menieres and seriously wonder how many MD sufferers find the course of their MD follows these stages? I certainly can't pinpoint where my illness is on this scale.
Does anyone else have MD that sounds anything like mine where you function pretty well on a day to day basis but are knocked for six by these major attacks?
Hi Linda
My husband suffers in a very similar way to you. He was diagnosed 6 years ago. He tends to have clusters of attacks.....in fact he's in one right now. He can go months between, the latest calm period lasted 20 months and we're thankful for that. He is a builder and has his own business so it's very worrying when he's I'll. He has lost 70% of hearing from his affected ear and struggles with tinnitus on a daily basis. He describes it as being so loud, that I think if it weren't for me and his family he would've 'put himself out of his misery by now', which is very upsetting. I do worry about the future and whether at some point, he is going to deteriorate but for now, we just carry on. My sympathies are with in this terrible disease.
Hello Linda.... in answer to your question, I can only confirm that my attacks sound as intense as yours, e.g. up to 5 or 6 hours on floor, unable to move or see. It then takes weeks for equilibrium to settle again, but then no 'major' attacks for many months. There was a two year break between attacks once. Like you also, my hearing has not been greatly affected, but can certainly fluctuate at times. There were a few period where my ears were totally blocked for several months. For the last few months I feel the best I have felt in 11 years and am now functioning fairly well, but still need to pace myself to a degree. From my understanding also, hearing loss is one of the classic MD symptoms, but there are so many variables and I've been told I do not have classic MD symptoms, yet still have MD. I would be interested to know if you have seen any specialist since your original diagnosis? My tinnitus used to be chronic to the point of awakening me at night but that has virtually gone now. As for the stages of Meniere's, mine certainly appeared the other way around to most. e.g. drop attacks were the beginning of my journey whereas they say to expect them later down the track. I'm fairly convinced that the neck area has been my main culprit causing all the problems. Oh to be different!!
Hi Angie,
Thank you for your reply.
i am sorry to hear your husband is struggling so at the moment and his hearing is so badly affected, it is a very stressful but 'hidden' illness. You feel awful yet can look normal. I am never without my tinnitus and over the years it appears to have got louder. Oddly enough I have become more sensitive to sound since having Meniere's and yet I try to avoid silence as I need noise to detract from the tinnitus. Having the radio on helps. it is indeed very distressing and it does help to have family around for support but i can appreciate they feel quite helpless at times. I wish your husband well Angie, he will come through this bad patch and hopefully all will settle down again very shortly.
Best wishes Linda
Hi Cary,
thank younfor your reply.
i have only ever seen a specialist once in thirty years and that was at the outset and i have not pressed to see one as i do not believe anything can be done. There is no cure and i will not undergo surgery. A very severe drop attack was the beginning of my journey. I was taken to hospital, treated like a pariah because of the state i was in and told i was suffering from from food poisoning! I knew then with all the spinning it was nothing like food poisoning but was way too ill to challenge them on this.
On these blogs people recall such different experiences it is clear that all MD sufferers do not follow the same path. My attacks frighten me as I am rendered helpless within 30 secs of the increase in the level of my tinnitus. I live in fear of them but I am thankful that my daily life has some semblance of normality. The tinnitus I am used to and the nausea and balance are manageable .
i suspect the 'stages of MD' are relatively accurate for some sufferers but there are always going to be those who are different.
What do you mean by your 'neck being the main culprit?
I suspect there is ongoing research into what causes our immune systems to become so compromised to make so vunerable to these auto immune diseases. I believe there are over 80 of them! It is interesting that it is quite normal to have two or three auto immune diseases as well but I guess it makes sense as to our auto immune systems are compromised. I suffer from vitiligo and hypothyroidism as well.
Most of the time I am on top of MD but occasionally it does really upset me knowing that there is no medication available to prevent these these awful drop attacks doesn't help.
It is interesting to talk to other sufferers and share experiences and it does seem vaguely comforting to know you are not alone!!! Or maybe that is just me.
Hi Linda,
I agree, it is comforting to know one is not alone on this very difficult journey. You are no doubt smarter than me in having seen only one specialist in your 30yrs of MD. I was always searching, but after visiting a few different specialists have finally concluded, they just don't know! It's an expensive excercise as well.
My thinking has always been to find the cause first and then work from there no matter what it is, but I appreciate the mechanics of the inner ear is incredibly complex. Also, like you, I do not wish to undergo surgery.
Apart from a severe ear infection at the beginning of this road I also had a bad ski fall around the same time and hurt my neck. Thinking it would all 'come right' (as I generally do) I didn't get it checked out properly at the time, but had severe pain for at least a week. When I fell I literally heard my neck go crunch, crunch, crunch.
For the last six months I have been working with a wonderful neuro muscular therapist and her theories seem to make sense to me. Anyway, the main muscle she has been working on is the sternocleidomastoid (SCM). Amazing results!! So that's what I mean about the neck being the main culprit......in my case anyway.
Like you also, I do not take any medication for MD. Years ago, I tried, but side effects were so bad I stopped shortly after. My system is very sensitive. The one thing I have found extremely beneficial though is to take half a clonazapam virtually the moment I feel any imbalance occuring. It is a huge preventative of attacks. In fact, my last major attack which landed me in hospital six months ago was helped with an IV drip of clonazapam as that's the only thing that works for me. So, perhaps that may be worth considering? I only ever take the equivalent of one to two pills per month.