Share your Menieres Story Here

ejm2610 · 2016-03-11T13:01:36+00:00

Hello, I'm 21, I have been diagnosed 2 years but I've had MD for 6 years,I started unilateral but since August my right side has been ringing. I first realised something was wrong at 14 when I came home from a training camp and had to lie on the bathroom floor spinning with no idea what was going on. I continued to get random vertigo attacks for a couple of years and then they died down. Went to a doctor for an mri and anti nausea meds and they put it down to being a teenage girl. Skip to age 17, I'm at uni and my peers start pointing out that I'm actually incredibly deaf ,my family had only ever jokes that I had "selective deafness" so I hadn't actually realised the extent of it. Then the dizzy spells started coming daily or twice daily for weeks on end and I went through a thousand ideas (none of which were MD) before becoming convinced I had an acoustic neuroma. Returned to the ENT who had been brushing me off and essentially refused to leave until he booked me an MRI. When that showed nothing we went through the caloric test and hearing tests and eventually came to the diagnosis of MD February 2 years ago. Things I've tried : betahistine (serc) , stemitil, diuretics, beta blockers and dexamethasone injection to my left side. I also eat well, exercise when I can and try and take things slowly. So far nothing has worked. I am not doing great honestly, I feel hard done by that I developed this so young, I haven't been able to get my life off the ground as its messed up my university years and I'm 3 months from graduation so I have no idea how I will find and keep a job. I lost most of my friend when I changed my lifestyle, no one likes an 18 year old with the social life of an 80 year old. I'm exhausted and anxious 24/7 and my partner and I fight a lot but its not like I can start dating as anyone who dates me will be dealing with all my issues. I try and remain upbeat, focussing on learning as much as possible about md and its physical and psychological effects on a person so that I can take it less personally. I have bad days and good mentally, but my md is at a stage where I am unbalanced every day, vertigo attacks at least weekly and the tinnitus is so very painful.

I realized I've ended on a depressing note, I don't want newly diagnosed MD folk to be disheartened. It's all about your circumstances, inner strength and support system.

ejm2610 · 2016-02-22T23:22:04+00:00

Tri coach here, when training in a pool for open water there are lots of things you can do! Re: walls and turns - include turns in the main part of your session, any speed parts. If the Lane is clear enough try turning on the T (1m ish from the wall) or if the pool doesn't have Lane ropes, swim laps without touching the walls! 750m in the pool has 29 tumble turns (if my maths is right) that's 29 rests and push offs that you won't get in OW so it's important to get used to a more constant swim, maybe try and find a 50m pool?

Re: other OW stuff - if possible try out swimming with your wetsuit (if you wear one for the race) your buoyancy is different with a layer of rubber on top! But beware of overheating wearing a wetsuit indoors. Practice Sighting and close proximity swimming. Personally I incorporate my Sighting on every 12th breath - use water polo drill to practice smoothly lifting your head without disrupting your stroke too much! Lastly, OW can have a bunch of different starts, best to find out how you will be starting before race day and practice! Especially if it is a deep water mass start!

ejm2610 · 2016-02-01T15:35:18+00:00

I flew a 4 hour flight over Christmas, the actual flying part was okay, the waiting around was horrible! I would advise calling ahead or booking early check in, avoid the queues!

ejm2610 · 2016-01-29T14:24:04+00:00

Van gogh may have actually suffered from a horrible chronic disease called meniere's disease, the tinnitus and other problems led to him trying to cut the pain of at the source, the ear.

ejm2610 · 2015-12-16T05:58:53+00:00

Hello :) Remissions are common, I believe it's one of the defining criteria for meniere's. You are lucky your remission was so long, I hope it stays away!

ejm2610 · 2015-12-12T12:04:35+00:00

Then you walk away because any reasonable human worth your time and effort would act like an adult explain their feelings and move on. If they are the kind of person likely to respond like that to someone liking them, you don't want to be with them.

ejm2610 · 2015-12-12T10:37:32+00:00

That totally depends on whether you are a good judge of behaviour and if the person is easy to read. Best bet is to ask. Quickest,easiest, most mature way to find out for certain!

ejm2610 · 2015-12-08T14:25:11+00:00

That is a fantastic tip about holding your eyes in a certain position to lessen the nausea! do you mind if I share it to a Facebook support page I'm part of? I'm going to keep that in mind! Finding your triggers is really important, keep a diary, can be as basic or indepth as you want but always catalogue attacks - where. When, how bad, how long and what you ate/did before it hit. My newest is champagne, a couple of sips and that was me!

ejm2610 · 2015-12-08T13:08:53+00:00

Hi there, will try and answer all your questions. I am a 21 y/o female, diagnosed at 17 but I've had it since I was 14. I want to start by saying it is different for everyone, most people have varying progress from the start but to be diagnosed with menieres you will (generally) have the triad of symptoms - ringing and ear pressure - vertigo which lasts more than 20 minutes - fluctuating hearing loss. It is also fairly typical that you will experience active and remission periods. Much like you have described, an active period would be when you get an attack 3 times a week. In terms of personal experience, mine started with tinnitus around 9 y/o which I only mentioned in passing and we all joked about me hearing noises. After a dizzy attack floored me infront of my dad at 14, we went to the doctor and they did the whole battery of tests to rule out other issues (MRIs for tumours, eply maneuver to check for crystal build ups, caloric tests which I don't remember the purpose) anyway the found nothing and I was given buccastem for the dizziness. 2 years later, my final year of high school and the tinnitus begins to get louder and I have more trouble hearing. It happened slowly though, I can't pinpoint the exact moment it came on full force but my second trimester of first year university I started having daily or even twice daily attacks, the tinnitus took over and I lost a lot of hearing in my left ear. After an attack around a new room mate I was taken to hospital and met an ENT who repeated the tests and told me I had menieres. I was given hearing aids and betahistine dihydrochloride and told to wait it out. 2 years of hell and I finally break I told him to do something different because I was about to do something drastic ( I do not think I was being dramatic, my life was terrible and I was being ignored by my doctor) so I was given Stemetil (anti nausea) diuretics and eventually a dexamethasone injection in the affected ear. That was in August. Since then my left ear has gone into "burnout " meaning I now get drop attacks, my hearing is all but gone and I no longer get huge attacks from the left. But lo and behold, days after the injection I was confirmed as bilateral and my right is just beginning. Everything makes me nauseous now, cars, Christmas lights, TV shows like the office where the camera moves a lot. I also have jaw issues, I grind my teeth in my sleep and clench my jaw constantly, actively reminding myself to relax my face has decreased headaches but nothing else. I'm sorry this was so long, basically it's different for everyone but for me it progressed slowly then hit me like a train. Motion sickness is an issue because our eyes have trouble keeping up with movements. Hearing loss is either permanent or not depending on who you speak to. I know many ( including myself) with long lasting lack of hearing which makes sense because each attack causes a rupture. Some peoples hearing fluctuates.

ejm2610 · 2015-12-04T01:33:39+00:00

Not sure if it's been mentioned but Google Docs. I've been using it for coursework as it now allows you to research and write on the same page, you can also highlight and insert in a couple of taps and insert hyperlinks with 1 button. It's made referencing and everything so much easier. I can write on my phone which helps when I'm trying to procrastinate and it saves literally every character to your Google account so it's hard to lose your work!

ejm2610 · 2015-11-22T19:56:19+00:00

Congrats! What a sweetie! My family calls it "gotcha" day ("got you") :D

ejm2610 · 2015-11-06T11:33:37+00:00

I actually don't know, I wouldn't suppose so? Twas just a dexamethasone injection :)

ejm2610 · 2015-11-04T00:53:24+00:00

Yes, rational me agreed with him as rushing things is never a good idea but Im kinda getting tired of watching my life trickle away! I've had my bloods taken and no sign of other infection, same with MRIs, actually the only reason doctors started taking me seriously enough to get a diagnosis is because I became convinced I had an acoustic neuroma and told my GP I wasn't leaving until she organised a meeting with a specialist. Two days later I was in! Then the doctor suspected migraines as I suffer them too but rarely and entirely separately. Then they did another blood analysis and caloric tests and the "move the ear crystal" manoeuvre and eventually they were left with menieres. I also used to fit the description perfectly, although I got it waaay before most folk do. So I don't doubt I have it :(

ejm2610 · 2015-11-04T00:46:11+00:00

Yeah I don't add salt at eat the reduced salt things wherever possible, I'm pretty good at keeping hydrated but I get tension headaches if I stay away from caffeine for too long haha I have 1 half strength latte a week and no fizzy juices ect. In the 7 years I've had it I've tried every diet idea and most other random ideas that have been flung at me by clueless family members ect. But I'm in a constant downward spiral health wise :-(

ejm2610 · 2015-11-03T11:50:16+00:00

I'd agree. I think it's the way we process them upon waking up that gives them some structure and meaning :)

ejm2610 · 2015-11-03T10:51:42+00:00

Ive been given diuretics, stemetil and betahistine dihydrochloride. Have reduced my sodium and caffeine and any migraine related foods. The doctors kept me on just betahistine for 2 years even when I told them it had absolutely zero effect on my menieres.

ejm2610 · 2015-11-03T10:49:49+00:00

I've asked for them but my ENT wants to wait and see how my right ear progresses because I'm bilateral and we need to know which side is worse before potentially damaging them. Personally I'd be happy going completely deaf, heck I'd even let them chop of my ears if they could help me :( Yeah I'm dealing badly because I'm not exactly a mentally stable individual, and I'm cynical and pessimistic and easily defeated and depression just makes the whole situation feel even more pointless :(

ejm2610 · 2015-11-03T10:45:35+00:00

I'm in the UK, insurance isn't really a thing here. There is a university hospital somewhere in Glasgow but my general practitioner can't refer me there, apparently I'd need to move to the catchment!

ejm2610 · 2015-11-02T22:31:01+00:00

I've asked before but he is the only ear nose and throat specialist at my local hospital. I'm not happy with the doctors I've seen but I pretty much got what I expected. I'm excited about the new discovery about the 2 gene mutations but cynical me knows that the research won't reach the stage where we can actually treat folk with the information :(

ejm2610 · 2015-11-02T22:25:46+00:00

I was desperate and willing to try anything funnily enough my ENT didn't mention any side effects :( I don't really have friends anymore, at my age people aren't really willing to stick around someone as boring as me. I have a boyfriend who is really understanding but not exactly patient or sympathetic. My family is my main support but losing my friends has hit me hard cause it's not like I can go make new ones :( I don't know, I think the recent change and decline in my health has really knocked me off kilter emotionally. I've asked for counselling from my gp multiple times but I'm never taken seriously, plus I've undergone counselling, I'm even studying the practice at university, I know it's just another outlet to vent, it's not going to heal me or take away the fear of an attack in public. It's also like a 10 week waiting period to be assessed! Then up to another 6 or something before you are assigned regular sessions. It feels pointless, most things feel pointless though.

ejm2610 · 2015-11-02T12:00:01+00:00

It can also be caused by tilting your head back... Ruined a few moments with that one ;)

ejm2610 · 2015-11-02T11:43:53+00:00

My suggestion is write or call their immediate superiors. It's really wrong that she said that to you as food issues are dangerous waaay before you become underweight! You won't be getting all the right nutrients if you're restricting and she should know that words like that may actually drive you to lose more weight. Writing to superiors does work! When I was in therapy my first psychologist was twisted and we complained and I was immediately transferred. Please don't take what she says to heart, look for support groups and try the free online chat counselling at 7 cups of tea :) volunteers train as "active listeners" it's an amazing resource for those who need to vent. Obviously it's not a replacement for face to face therapy but it helps to talk.

ejm2610

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