I'm struck at times with how young some of you are. The young fellows in their early twenties, and you Emsybobs, it seems like all of your young adulthood years have been afflicted with this monster. At an age when the world should be your oyster and to be contending with this!!! What's that old saying "whatever doesn't kill you makes you stronger". It takes courage & character to cope with adversity and I'm sure every one of you young adults will be more compassionate people when you finely get the better of this thing. Take heart, time is on your side.

Bless you Nina...thanks for that. I must say oneof the worst things for me is how old I am - my friends are off socialising, meeting men and havin fun and I'm stuck at home with the parents with life on hold! I often get down about it but as you say, what can I do, I have to keep thinking I will be a better person when I walk away from this, which I know for certain I will be.

My friend recently said to me "there is no good time for labyrinthitis" when I said to him why did I have it so young. I actually think he's very right.

But yes it certainly does get to me...my career and plans are all on hold and I feel like I'm waiting for that bus which is incredibly late.

xxx :wave:

Exactly how I feel emsybobs. This hit me when I was 22 and hasnt left and im now 24. All my friends are off travelling, going out, drinking, having fun and i am........ watching tv with the folks! I love them but not what I was planning to be doing at 24 on a Saturday night! But what can you do. The person who I feel sorry for is my boyfriend! His girlfriend went from 22 to 82 overnight! It has been tough trying to make our relationship work through this.

Thanks ninamarie for your thoughts, I sympathise for all of us inner ear sufferers.

Hi star yep your situation is v similar to mine...I dont have a boyf and sometimes I wish I did have so that I'd have more support but I have a few v good friends who've been v good to me - also like you say, I'd worry about making the relationship work, I dont think anyone would put up with me at the mo! This is a real test for a relationship so brill that yours is working. Guess you'll know that its the real thing if he sticks by you and supports you throughout.

Another thing I have found (have you star?) is that because people know I cant do things they dont invite me, so it ends up being a cycle of isolation. Where as infact a bit of normality, however hard for me, may actually feel like my life is a little less restricted.

I do often have times of thinking ITS NOT FAIR that I have this, but I just remind myself that I'm alive, there are far worse things to have and hopefully this wont be forever.

xxx

Hi,

This hit me at the age of 27 and at the time I had two little kids under 4. NIGHTMARE.
I have then gone through another preganancy (very very dizzy and disabled by it) and stuck in the house with them feeling like the worst mother in the world. Thankfully I am married but all of last year my dh was away mon through firday and I literally was house bound, scared and v lonely.

I too though this cannot be happeneing........but it was. I felt all that you too said above, just the same.

BUT i am way better now (3 year mark) and you two will also.

The funny thing is that these boards and sepecailly our chats etc emys have made me feel that all; this weird and horrible symptoms are actually quite common and not so unusual after all. Thank god for these boards!!

xxxxxxx

Emsy - I just had to add to the bit about not being invited to things. This happens to me too sometimes. A group of my friends recently went away on a weekend mountain biking thing. They were camping etc. While I am ok on a mountain bike, I wouldn't be ok about a weekend away biking and camping, particularly when I don't know what will happen from one day to the next. So they just didn't invite me this time. That really ticks me off that I have to say no to these events but like you said, it could be a lot worse.

I can imagine it would be difficult to have the confidence to start dating with this nightmare hanging over you too. I'm not sure I'd be up for it either. Luckily, my girlfriend knew me before I was struck down by this and has had infinite patience with me. For that I am blessed. By the way, we are now officially engaged as of last week!!! I never would have thought I'd be a dizzy proposer. Imagine if I got down on one knee? lol....I'd have keeled over...LOL. Wooohooo. :D

Take care.....Scott

Scott,

Congratulations!!!!!!!!!!!!!!!!! I'm not much older than you (40), but I've been married for 18 years to the most wonderful, love of my life person that I can't tell you how great it is. I hope you will feel the same. Luckily, like you said, I knew him a LONG time before this nonsense hit, and he's been so supportive and understanding. I particularly remember those moments last year when at a friend's cabin for the weekend (just me and my Tom), I sat at the dining room table and just cried into my breakfast because I was so scared and depressed about what was going on with me. It was only my first time to that cabin and my brain hadn't locked it in yet (gladly, it has now), and, hell, I didn't even know what "locking in" was then!! I was walking around there like an emotional space-cadet. Thank god for Tom and his caring demeanor!!

So, when's the wedding??? Just HOW did you ask if the knee thing wasn't doable?? :)

The upside is that she's already been through the "worse" of "for better or worse," and also the "sickness" part of "in sickness and health." You'll make it for sure. :D

Terri

My social life has certainly taken a battering! I don't get invited to very much at all these days but even when I do I can never commit to going anywhere! My common response now is that I will let them know on the day - never knowing how you will feel one day to the next is tough!

In one respect I agree with emsybobs about being annoyed I am not invited lots of places anymore but on the other hand if it is something I would love to go to but just cant sometimes I get down over the fact I am stuck at home dizzy all the time.

Its hard because my boyfriend still goes out lots, previously I would of been there too but this evil dizziness stops me. At least I can live vicariously through him I suppose!

My vrt guy keeps asking me when I am going to go out clubbing! Somehow I don't think it will be anytime soon - I can't think of anything worse these days. Low lighting, flashing lights, lots of people, loud music. I feel so old!

Congratulations to scotsman!

And thanks to willsmommy for all the positive thoughts - keep em coming!

Hey Terri,

I chuckled at the "for better or for worse, in sickness and in health" - she's had it all in spades from me already that's for sure. It can only get better from now on in. Well, I proposed on a beach actually. I figured if I fell over I'd at least hit something soft...lol. No, really that wasn't the reason for the beach but we laughed about it later. No date set yet but I would sure like to be rid of this monster before such a day...imagine if I couldn't have a glass of wine at my own wedding?....or had some freaky anxiety wash over me standing at the altar :eek: (although that could happen lab or not...lol).

Cheers......Scott

Hey Scott, just want to add my congrats. Sounds like you have a really great giancee there. So let us know when the wedding is.

Madeleine

Congratulations to scott...Fantastic news. I hope I find someone supportive to put up with my dizzy rubbish or hopefully it'll have gone by then! I am still young! How long have you been with your girlf scott and how did you meet?

Laughed a lot about dizzy proposer thing and star's vrt guy!! Mwe too star - feel the same about clubbing. Yuck with a capital Y.

xxx

Congratulations Scott, great news.

Emsybobs, I bet in no time you'll be sat in your garden having a glass of wine, watching your two kids playing (ever the romantic!!) and thinking back to the horrible time you had with this dizzy stuff and being so thankful its all over. Bet ya!!

Lizzy x

Thank you lizzy, that really cheered me up :) xxx

Congratulations Scott!!!

Re: "There's no good time for Labyrintitis". That is true. I thank god that my children are old enough (17, 14, 11) to take care of themselves. I couldn't imagine having this happened to me when they were babies. But on the other hand we've lost a lot of income because of this and my oldest is going to university soon!!! Another type of stress!!!!

I thank God for my wonderful patient husband, because sometimes I feel so useless. This fall I intend to try to take a full time job and hope with all my heart that I will be able to keep it!!!

I know where you're all coming from. I'm 27, but had just turned 23 when this all started, and I sometimes find I'm totally perplexed at where the old me has gone. I sort of shot myself in the foot because I (and my girlfirend) had just moved to a new part of the country (and didn't know anyone) when I started having problems which mean't that we didn't know anyone, and of course these problems are isolating anyway so this led to it's own problems, so just me and girlfriend everyday mean't things got a little tense. After a year or so we couldn't hack it and had to move back towards my girlfriends family, apart from a couple of friends visiting I haven't really socialised in the entire time I've had this (I used to be out 4-5nights a week). Our relationship is has not been so good (it's been pretty much tested to the limit...), but bless her heart she stayed with me. Things are made more complicated now because 18months back my girlfriend, while going on a plane flight (I sent her on holiday with her friend as a break from me&my illness) managed to get a perilympth fistula (probable) and has been suffering from vertigo/pain/deafness brought about by changes in air pressure (ie, weather changes, climbing hills in cars etc. etc.). So now theres two of us..... me with constant wooziness and her unable to go more than a few miles in the car (we live in a valley).

I often wish I was a different age when this started. If I was older I wouldn't feel like it's stolen my young adulthood (just as I was getting my life together), similarly if it had started a few years before I would had to have been on my feet more and had more friends about me (which means I might of recovered quicker).. But in reality I'm just kidding myself and I think it's a case of the grass is always greener, there really isn't any good age to have these kind of problems.

My heart goes out to you Billy. I have kids your age and I know how i would feel if I had to watch them suffer this awful thing. I can understand your frustration as to "why now?" Can you or your girlfriend get any sort of VRT? Just some simple exercises that might help deal with the imbalance and unsteadiness, and give you a feeling of being in control, at least a bit in control anyway. Thank goodness you and your girlfriend at least have each other. Are you seeing any doctors? Doing any tests? Although I'm sure you are sick of them. What is the latest on your situation. And can your girlfriend get any treatment for her problem?

Things do get better for people here, even if not perfect, at least to a degree where they can have some sort of normalcy in their lives. I sure hope this will be the case for you too, Billy. Just come to the boards whenever you feel like sounding off - anger, frustration, anxiety, despair. We are all here for each other.

Madeleine

The last bit of your message was right Billy – there never is a good time for this. I’m 51 – coasting towards a hoped for early retirement but preferably a dizzy free one!!! While I was writing this I see that Madeleine has replied in a similar vein……….we do tend to agree on here!!! My children are also close in age to you and I’d hate them to have to go through this. At least your girlfriend has stuck with you…..and more to the point can understand what you’re going through. I’m sure many of us have partners who struggle to understand what this is like – I’m sure there must be times when my husband wonders if I’m exaggerating. As Madeleine says – hang on in there and come on here and vent at all of us when it gets too much :)

Sorry Scott...............meant to say congratulations :D Put it down to a senior moment...............definitely made worse by the odd dizzy spell!!!!

Madeleine,

Thanks for the reply. I was sounding a bit negative - I'm having a bad day.

Thanks too for the suggestions, but I've been down that road. I've mentioned all this before in another post, so feel free to skip if yo've already read it. I have been up and down over the last few years, I was best six months into this, when a lot of my symptoms had reduced (I could almost function normally- I still felt bad but just not awfull), then things got a little worse again and sort of stayed there, then last christmas everything got a whole lot worse. I managed to teach myself a lot about VRT and that is what I put my initial recovery down to, but even so I keep having a number of setbacks (sometimes suddenly like at christmas), I haven't seen a doctor about it for 2 years or so because I wasn't getting anywhere and my "homemade" VRT (I have a book) was far more specific than the generic exercise plan they wanted me to do (which I could do standing on my head most days, then it'd just get worse again), so my docs suggested not seeing me again. I was origionally diagnosed with vestibular dysfunction probably caused by a virus, so either I keep decompensating (which is possible I suppose) or I have something else instead, though over the past few years I've picked up lots of other wierd symptoms, which may or may not be related (and possible be another illness causing me to decompensate). To add to all that at christmas I managed to injure one of the disks in my back because I was trying to do too much when my dizziness was bad, which is causing me a problem, and over the past few months my balance seems to have got pretty bad (seems to be from lack of coordination in my legs and doesn't seem to come from my ears) which I hoping is partly caused by the back problem - I see the back specialist in a week or so, then I'm hoping to go back to the neurotologist.

My girlfriend has seen a specialist locally who fitted gromets (ear tubes) but they just made her worse, so she went to see another specialist in London (we live in the UK) but they sent her away so they can arrange some more tests, however the journey and her having a sensitivety to pressure didn't mix well and it took her a month or so to recover (pressure, pain, deafness, severe vertigo), once the pain and pressure goes she is left with residual mild imbalance, which I'm sure VRT could help, however, as soon as shes exposed to any kind of ear pressure (weather, hills) or loud sound then shes back to square one, things aren't helped by the fact shes a piano teacher so noise is pretty unavoidable, so VRT at this stage would be futile.

I don't think that having an insight into what it feels like helps any. I might be feeling bad one day and look at my other half walking around looking like theres nothing wrong and I can't help but think "she can't be feeling this bad", and I think she must feel the same. I think it's invisible to everyone.

I can only sympathise with you because I haven't suffered anything like you are doing, or for as long. However, although I was having some positional vertigo (only in bed or getting out of bed) last summer, things got worse when I got a herniated disc. I was then juggling between my back getting better, then epleys and VRT then back got worse and I was too scared to go for more dizzy treatment - the positional stuff came back meanwhile together with days of imbalance. Between the two I was miserable and couldn't see me ever being ready to go back out to work (I'd been fired when I got sick). So I went for treatment for my back, and when that was better, went for more epleys and VRT. It was a juggle between the two. Now thankfully I am feeling pretty good and have regained my confidence.

What I'm really trying to say is that because you're dealing with more than one ailment - back and dizziness - it's all taking longer, plus the setback is understandably depressing and scary. The morning my disc got herniated I just collapsed on the bed in terrible pain and my leg was jerking in spasms from my hip all the way down and it was totally uncontrollable. I still have the odd discomfort in my leg. So it could well be that the lack of coordination in your legs is from your back. Both my GP and the orthopaedic specialist told me that "lower back pain can't possible cause dizziness, imbalance etc.", but my Feldenkreis practioner said that of course it can and then I did find one article on the Web that said LBP can result in vestibular disorders. So hopefully as your back gets better, your vestibular problems will lessen or even disappear. I'm sure given time, you will improve - hopefully complete recovery. There's a lot of truth in that old song "your thigh bone's connected to your hip bone".

Your girlfriend's case is obviously different and I don't know much about her sort of condition though I'm sure there are plenty of people here on the boards who can offer sound advice and encouragement. I can only pray that she - and you - will get suitable treatment and make good recoveries. Can she still teach piano?

Hope I haven't bored you - just trying to show tha tyou are not alone in this.

Madeleine

Hi Madeleine and Billy. Also having a negative moment but wont go there! Dizziness just got bad again this eve and just feel awful...

Billy...Can i ask what other symptoms you have developed?

Weird about your girlf getting an inner ear prob too. Glad you have her to stick by you. I dont have a partner but I am blessed with a couple of v v close friends who would do anything for me. I wouldnt have got through this without them.

I would return to London to see luxon...

Keep smiling, we are all here for you xxx

Aw Ems, sorry to hear the dizziness has kicked in again. Hope you can sleep it off and have a better day tomorrow.

'scuse ignorance and nosiness - but what is luxon?

Sleep well

Madeleine

Sorry madeleine - a neuroto who I and Ilia saw and Billy also saw 2yrs ago...

Off to bed! :eek:

xxx

Ems - How are you feeling today? Hope it's a better day for you.

Hugs
Madeleine

Thanks madeleine, not much better, period started so dont think it'll get better til that ends now...Was so bad couldnt do vrt last night but resumed it again this morn. Hpe ur ok! xxx

Madeleine: Thanks again for the kind words. Yes my girlfriend is still teaching piano, I keep telling her to take some time off though, the sound really sets her off, she can be having a good day then the sound of piano from teaching will start her symptoms again, I think shes not giving herself long enough to recover between playing. She can't practice playing as much as she likes (she used to perform so she had to practice 1-2hrs a day), but we've just a digital piano so she can turn the volume down which helps.

Ems: Luckily, I don't have the period thing to contend with which I understand really knocks the dizzies around, so I hope things have eased up a little today.

As for my "other" symptoms, on top of all of my vestibular stuff (dizziness, visual perception problems, lack of balance etc.) 8-9 months after getting sick I started getting episodic aching/spasming in my legs (for no reason my legs start to hurt like I'd been lift wieghts), skin rashes (looked like misels), lightheadedness/fatigue (new type- not vestibular), all of this has never really gone away. I've also developed swollen painfull lymphnodes. Prof luxon thought it might all be autoimmune related, but the tests didn't show anything up, so then they suggested it was a secondary illness (which I suppose is possible) which needed to be investigated separately, however, my GP decided it was all because I had a "stressful job" and refused to follow it up.

Hmm must say those new symptoms do throw a spanner in the works somewhat...what about lymes disease? Been tested for that and other such things? Thyroid??? I bet these new symptoms confuse things a bit for you? xxx

Congratulations to scott...Fantastic news. I hope I find someone supportive to put up with my dizzy rubbish or hopefully it'll have gone by then! I am still young! How long have you been with your girlf scott and how did you meet?

Hi Emsy,

I missed your note hence the late reply. Thanks for the congrats. We've been together 4 years and met in a restaurant where I worked for many years (until i was wiped out with lab). Hoping to go back soon and do my weekly shift again for some extra cash.

Fear not emsy, you'll find someone. It must seem impossible to even try with this head monster but you might be surprised if you put yourself out there again. Someone will come along who could care less about your dizzies I bet. Problem is where do you meet someone with dizzies going on....a club or pub is probably out of the question. I've almost always met people through work. Are you working at the moment with this?

Best.......Scott

Just very part time scott but will do (am hoping) about 3 days a week in sept. There are mainly females in my profession! But I am yet young, 15 your junior so I guess no panicking yet...My main concern is getting rid of my health nightmare!!! Everything else takes back seat at the mo. xxx