Hi guys,
I've not written on here for a while. I suppose that's because I've been ok. That's until last week. I got really tired at work and noticed my tinnitus getting worse... Didn't think anything of it. Then it hit on wednesday, all of a sudden. I thought I felt weird and there it was, the brain fog, the weaknes, my right ear being full and going eeeeeee I've been off work since and I can't seem to be getting any better. Some days I think I'm ok then it hits me again, I'm floating, I feel weird. I actually went to work this morning thinking I'd be ok but had to be driven back home as I just burst into tears and apparently looked really white and unwell.
I am so fed up of this disease!!! The ENT have discharged me but I feel like there must be more they can try and do for me. All I have is betahistine and they have not done any further tests just hearing test and because my loss is not typical of Ménière's, nothing else. I feel like I've been had by lazy doctors who can't be bothered! Even if it's not Ménière's, surely they can rule out other things at least? Should o just go back and annoy the hell out of them and demand answers? Or should I just accept my fate? I'm only 38, have three kids aged 3,10and 14 and I hate being unable to work, play or cook for them. I should have the energy to be there for my kids and instead I feel like a complete failure and am now crying my eyes out in bed.
Sorry about the moan but I know only you guys understand.
Has intratympanic steroid injection been tried or considered?
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
Brookiana sorry your having so much trouble. I totally know what you're dealing with I have been out of work 3 years I also have 3 kids 15,14and10 and I was always the fun dad out and about going to their ball games doing outside stuff always on the go up till this now I feel like I'm letting them down they understand but it's still very hard I feel like I'm missing so much of their lives. I also get the weakness very bad that just hits out of nowhere I think that's the worst part of it my dizziness usually doesn't last long but the weakness and brain fog can last for days. I have a new doctor I'm going to on the 14th hopefully he can figure this out. I have gotten so bad at times I have been to the ER no telling how many times over the passed 3 years and I know my regular doctor has got tired of seeing me but I to feel like it's more that can be done a person is not supposed to be like this everyday well most everyday. And I also get to feeling like I'm going to faint and my heart will race really bad my regular doctor says that panic attacks but I think it's all from my ear I just don't know anymore so many symptoms it will drive a person crazy. I sure hope you find relief soon.
Thank you for replying Daniel. That's exactly how I feel, the way you've described it. My heart was racing when I was talking to my boss earlier and I was shaking like a leaf even though I had just eaten and I wondered if I was just going to collapse which is how I ended up bursting into tears. I suppose it can be panic settling in but it didn't feel like it. There were three people in the room and they were shimmering, as in their contour wasn't steady. In fact the whole room was shimmering and I was just floating in it. How horrible. My two eldest children do understand my condition and have seen me cry many times over it but my little girl has no idea, she's three in two weeks time. I feel like I should be going swimming with her and to the park but I just can't. I stay at home, tidy up and clean but that's about it. I sit next to her and try and engage in whatever she is playing but even that is hard.
I actually thought I was better because I haven't had many incidents for three months but this illness is just so cruel! I've not been to ER or A&E as we call it here in England like you have but my boss was so worried about me she wanted to take me straight to the doctors this morning. If I hadn't been feeling so bad I would have laughed , I just told her no, they don't care, trust me they won't see me. It's so disheartening. I'm going to go back to ENT or at least demand another referral when I manage to see a doctor because I feel like they haven't even investigated so for all I know it could be something else than Ménière's causing similar symptoms but that is curable ? I'm hoping for the impossible here, I'm sure you can tell but what else can I do?
Nothing has been suggested , trust me, they just discharged me after seeing me twice and not doing anything.
I totally understand how you feel I have thought about everything in this world that it could be with the heart racing I have been to 3 heart doctors had 4 stress test done and have done the monitor for months and it all comes back clean can't find nothing wrong with my heart they say. I have ask about the weakness and the shaking and they say it's from my ear but I know it is so scary when it sets in. And your right everytime I have went to the ER they look at me like I'm crazy cause all blood work and test comes back normal and I'm sitting there so weak and shaky I feel like I'm dying. Not to mention the ringing and fullness I get in my left ear that can last for days. They did the ear purfuson where they put steroids behind the eardrum but I didn't think it helped much also they put me on steroids but I couldn't take them cause they really made me shaky also they gave me Valium but I haven't took none in awhile in fear of getting hooked on them. When I told my doctor how the steroids made me feel he said well just take them that's really the only thing for this grrrr. So I'm like you at a dead end I'm praying this new doctor I'm going to see the 14th can work a miracle and get me back to normal.
Good morning eleftherio! What exactly is this you talking about intratympanic steroid injection? I'm just wondering is it the same thing I had done where they injected Dexamethason in my ear. I had it done in 1998 and after for all those years I was back to normal didn't have not one problem then 3 years ago it come back so they did it again about 3 years ago but I'm still having major problem so I'm guessing it didn't work this time some people say they might have to do it up to 3 times for it to work. Any thoughts on this?
All my blood tests always come back fine too. Every time I say I'm just feeling so weak and shaky they want to do a blood test and it comes back fine. One doctor tried to put me on some different medication once but after I read the notice and realised they were a very addictive sort of psycho drug I just didn't dare so I understand what you mean about the Valium. I've been given cinarizine in the past but my god I was just stoned. I slept them woke up and raided the cupboards for food then slept again. After three days of that I decided not to take it anymore, that was totally insane!!!
My ENT Doctor also gave me some vestibular rehab exercises to do but warned me that I would probably end up collapsing and that I should do it with someone there or sitting down. That didn't sound great either. In Belgium, where I'm originally from, you do these exercises at the physio's surgery, with the physio. Not on your own at home. So my mum (who's had to have this several times) forbid me from doing it on my own. She was so panicked that she called me three times to make sure I wasn't going to do it without a doctor there.
I really hope the new doctor can help you or find something to make your life better. Three years off work is such a long time. You see, I'm the main bread earner in my house because my husband is self employed so we never know how much he's going to bring home. At least I have a regular wage. But I'm so scared that if I carry on like this they'll have to do something about it... And if I quit, who else will ever employ me with a track record of weeks off work? It's very scary.
Yes it is very scary I sure hope they get you better. And I was going to vestibular rehab and it seemed to help a lot I was back out doing things some but then my insurance changed so I had to stop going but I got new insurance the first of the year so I'm supposed to start back going tomorrow actually I was supposed to start last week but I just felt to bad to go so I'm hoping I can go tomorrow. It's kinda of scary starting it back because I don't want to do anything to aggravate it but I also know it helped a lot last time so we will see.
Does a doctor do it with you then? It sounds like my mum was probably right!
Ask your doctor to refer you to another ENT or Aural physiologist, in another hospital preferably, for a second opinion. This will hopefully include an MRI scan to exclude other possible causes.
If betahistine has worked for you in the past stick with it as it takes at least 4 weeks to become fully effective. You may well need to increase the dose from the standard 16 mg tds. I am currently taking 64mg tds on the advice of my Auralphysiologist consultant and am fully controlled, although left with some hearing loss and low level tinnitus.
If betahistine does not help then intratympanic streroid injection is the next step and is said to give excellent results.
If you are in the UK and get nowhere with your local NHS a private consultation may be your best option.
Don't give up - you have got better before and can again.
Yes I go to the hospital and do it the lady that works with me is great.
Thank you. I am determined to go to the doctor tomorrow and ask for another referral. I shall take my husband with me as he never gives up whereas I tend to just crumble and can't think straight!
Yes please don't give up hopefully they can figure something out for you.
Thank you Neddy!
You're right, I'm going to ask to be referred again as no tests were ever done . I think I need it for reassurance also as I feel so weird I've managed to persuade myself that I was probably dying of a hundred different diseases (and googling my symptoms hasn't helped at all) ... I am on the NHS yes. Although my audiologist is very good, I find that the two different ENT doctors I saw were useless. The first one delivered the shock of my hearing loss and the need for hearing aids so I never really got to ask anything because I was in utter shock but the second one just dismissed me, gave me a piece of paper with vestibular exercises, told me to just take more betahistine and said he was discharging me. The problem is when I'm feeling like this I have no fight left in me and just accept anything. I will take my husband as backup in future.
Brookiana, I am so sorry you are suffering and know how hopeless and despairing this can make you feel. Meniere's Disease is a nasty one and difficult to cope with. I have been dealing with it for many years and can tell you that what has helped me the most is being very (and I mean VERY) strict with my diet. I limit my sodium intake to at most 1500mg. a day, have no alcohol, and no caffeine. I also limit my sugar. It's hard to have such a strict diet but it generally keeps me going well. I also use wrist bands (available for people who have motion sickness...in all pharmacies), ginger (if I feel queasy) and avoid situations that trigger attacks (like large, noisy crowds). Perhaps you already know all this, but in case you did not, I wanted to share my thoughts with you. I wish you well.
Naomi does sugar effect Meniere's? Cause if so that might be hurting mine cause I love my sweets I gave up caffeine and that was very hard I miss my coffee I try to watch my salt intake that's hard to cause everything has it in there but I don't add any.
Yes, sugar does indeed affect Meniere's. I, too, love sweets but I'm careful to limit it to about 10 grams a day. With salt I am very strict (as I wrote) and it make all the difference. Check the labels on everything you buy...you will be shocked at how much sodium there is in everything. I eat no processed food and nothing from cans unless it is low sodium labeled. This strict diet is very difficult but I have not had a vertigo attack in over two years following this way of eating.
Hi Naomi, yes I do know about the strict diet and I will hold my hand up and say that I am rubbish at it. I drink , have coffees and smoke so it's probably all my fault 😩😩😩
I have seriously cut down on all three fronts though but I am finding it incredibly hard to give it all up. I suppose I did when I was pregnant , three times, but it made me feel so miserable. I'd need hypnotizing to be able to accept a strict diet as my life consists, when I'm well , of going out to gigs and nice restaurants (where I'm sure they add a stupid amount of salt to their cooking) , having a drink with my husband in a pub or things like that. I think I might as well end my life and live as a recluse in a monastery -or at least that's how it would feel like. I admire people like you who can do it!
Guess there goes my sweets that's gonna be harder than caffeine but if it works I will do anything. And I know when it gets summer time it will get better because we eat a lot out of our garden