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An inner ear dysfunction is a tiring business

Posted , 5 users are following.

DizzyDarren
DizzyDarren

For anyone that reads my stuff my intention is not to come across as negative person but simply to share my experience of how the effects of a balance dysfunction can take its toll on you.

My wife is the best and she is so supportive. Today I am particularly proud of her as she did the Bristol 10k in just over 60 mins, shaving 20 minutes off the last time she did it in 2011 and to be honest I am a tiny bit envious.

The reason I am envious is not because of the run itself, but because all I can do is watch from the side lines, but it’s not really watching from the sidelines that bothers me, it’s having to idly stand. This process of idly standing seems to physically and mentally fatigue me. My brain is clearly working its nuts off to keep me upright, and it seems that even if I have something to lean on this only offers a small amount of relief.

The only time I seem to be free of this fatigue is when I am sat down and it’s as if my brain breathes a sigh of relief and says it’s ok, the old boy is sat down.

Today was particularly vile for me as I was on my feet practically all morning and if I am honest it feels as if I’m getting worse. I am getting travel sickness while standing, how ridiculous does that sound? and now I am writing this while sat on my couch with all the feelings of someone who has just been to the fairground.

The reason I know I’m getting worse is because I also did the Bristol 10K in 2011 (2 Years after VN was diagnosed) and although at the time I remember feeling not too great, I did get through it. I just don’t understand why I feel worse 3 years later. Is it because I am sat on my backside at every opportunity? Is it because I’ve given up on exercising (because it makes me feel sick)? I jumped on my treadmill the other week and that made me feel vile for about 4 or 5 days. I went out on my bike the other day and that also made me feel vile for a day or 2….. or is all this just a compensation process I am still going through?

I think I am going to give up on doctors, I’m gonna try a vet instead. A few months ago my cat was very ill. He didn’t tell me he was ill because cats can’t speak, but he looked so ill so I took him to the vets. He didn’t tell the vet what was wrong because cats don’t talk to vets either but the vet was able to fathom out what was wrong and after 10 days the cat was fit and well again.

…..and if the Vet can’t help, I’m gonna ask my mechanic who always good at fixing my cars.

Anyhow tomorrow is another day !

2 likes, 30 replies

30 Replies

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  • gillian76726
    gillian76726 DizzyDarren

    Posted

    Oh Darren, i really feel for you as i know only too well what yopu are talking about.  I am going through a similar situation with a referral to a gym i was given by a physio last year.  12 sessions that i didn't get round to starting until march but due to fact some weeks i just can't bear to go as i know it will make me feel worse later.  I am counting them down, but have lost track now, around 4 more to do i think and i will not be renewing - it will probably cost more anyway, so that'll be my excuse!!  Its not that i cannot do the exercies that have been given me (I flat out refused to go on machines that would be sharp movements and had to explain why), so they gave me floor ones etc,  But it still aggravates things.  ie today, i cleaned 1 room in my flat, took about 3/4 hour as did it thoroughly due to not doing last weekend.  \i am not feeling like shite!  But do GP's understand this, no!  I once told one of the, 'when i walk out of this door, things don't change for me, it will all still be going on every single day when you don;t see me!!'  just needed to rub it in even though i know i;ll be forgotten until next time i go somewhere.  Then when i complain they try to say i'm 'anxious' , depressed, etc etc and the same dr (male) i told once' i'm 'f.......ing fed up, I'm 'f.....ing aNGRY' - I am NOT depressed!!!!!  He still gave me anti depressants (i chucked them out)

    You are right about the Vet, wish i could afford private dr as bet they would at the very least direct me in to the right type of consultant and not just your run-of - the-mill ENT who are rubbish at vertigo!  I'd like to see an Otolaryngologist as they do much better, more in depth testing, but not holding my breath getting a referral as i've had too many (as far as they are concerned), and now they are in charge of the money, i may as well give up mate!

    Sorry, i am banging on now, but it really cheeses me off how fobbed off we all are and i hope some medical person is reading these posts!

    • Babz36
      Babz36 gillian76726

      Posted

      It is horrible to be fobbed off! My dr said to me last week "I'm not sure what else you want me to do for you?" I just sobbed at him! Get me well was the answer he got! Xxxx
    • gillian76726
      gillian76726 Babz36

      Posted

      Oh Babz, i understand only too well - i broke down once and he just put me on anti depressants which i did not take! as i knew that wasn't what i needed.  How dare they say that - i've had that too, once dr said to me about the dr i was seeing 'well he's done everything he can' as if he'd given me the world and i was being ungrateful!!!  I am going to write a letter to this dr from the Daily Mail - Dr Shurr - i drafted one out to him 2 years ago and never sent it. He doesn't write back, but often prints an edited version of it.  I we all sent one, he may just at least print and answer one.  He's really good,not like our gp's.  The reason i thought of him was beasue there was a question on there once about vertigo and he suggested to this person to see an Otologist (more tha ENT), and since then i have discovered there are also Otolaryngologists that do even more in the testing department!!  So look that up on Google and see what you think okay!   Meanwhile i have found taking extra supplements at least help with my energy a bit.  Good quality B complex m(ust have B12 in it at good strength!), at least 1000mg Vit C daily, Vit D is a big must!  do you take any of these??  I was worse (if that's possible) when this all started and swear that at the very least i am a bit better now i take them.
    • marlene21102
      marlene21102 gillian76726

      Posted

      Why do they think these tablets are the B all and end of people's conditions, 

      just not so.if it's people's nerves doing it well sorry won't have that like you Gill.time to move away from these pills and get back to basic medicine.i hear and see what affect these tablets have on people full stop,not good for some, these tabs change people totally,and lots become so dependant there to fearful to stop them as time passes.That alone speaks volumes. Drs haven't got the answers full stop.but you still look to them to send you to the people who do know.Think that Dr scurry knows his onions read him every week Gill.and so another week begins xx 

    • gillian76726
      gillian76726 marlene21102

      Posted

      Yes, just been having very interesting 'chat' with someone who picked up on one of my questions on the Veda Facebook page.  Will tell you more tomorrow as must get off here and go to bed, my eyes are all over the plcae
    • Babz36
      Babz36 gillian76726

      Posted

      I take a really good multivitamin daily with all of those in it. I read ginkgo biloba is fab for increasing the inner ear blood flow too but I can't take it as I take Citalopram and they don't go together well. On Friday the dr gave me betahistine but I'm not going to take it as apparently that's a vestibular suppressant. I just can't wait for the day I was up and think "oh it's gone!" I'm not expecting it any time soon sadly! Xx 
    • gillian76726
      gillian76726 Babz36

      Posted

      yes, do not take the Betahistane - it made mine worse and evern the Audiologist who i do not have much faith in, said 'no', and agreedsaying 'of course it will make it worse.'  I take a natural thing for rhinitis/hayfever type symptons which keep the congestion down without drugs.  If you are o facebook, go onto the VEDA vstibular page - it's got interesting reading on there and i got 'chatting' to a good guy last ight who gave me some good info to follow up on.  you'll see some of them (some were on PMess though) - on the bit on right where is it says 'see all' posts.  i tried gingo biloba i think ages ago and had to stop but can't remember why!  Is Cit.....an anti depressant?  if so do you really need to take it, they can actually make vest worse too apparently. 

      Like you i wish i could wake up and it's gone - i wonder how many people actually experience that eh??

    • Babz36
      Babz36 gillian76726

      Posted

      I'm long term anxious and depressed I've been on it for a while and yes I need to be on it. I suffer severe social anxiety and have been agoraphobic in the past. Citalopram is one of the better anti anxiety/anti depressants for people with vertigo. It's better than being on diazepam as that is a vestibular suppressant too xxxx 
    • gillian76726
      gillian76726 Babz36

      Posted

      oh okay. understand.  Yes i was given diazepam, low dose and after just one tablet i felt absolutely terrible - vertigo etc of the scale. And on telling the Ausiologist this via e-mail to his sec) i got one back saying ' sorry i have no new ideas at the moment'!  Meanwhile in a chat session with chap on VEDA facebook page, he has mentioned all kinds of testing (think he's in US) that should be done and i have never had!! (or any of us i doubt)
  • DizzyDarren
    DizzyDarren

    Posted

    Jenny pass on my best wishes to your son and I hope he makes a good recovery, you can tell him with confidence that he is not alone.

    What I have often wondered is what split of the sexes are more susceptible to getting an inner disorder. Is it more women than men or is just a case that men are less likely to talk about? I mentioned this to my GP and she says that she’s people with vertigo all the time at her practice. It’s very common, very common indeed so I said I live in the area in which you practice and I never bump into anyone and she replies, it’s a bit a like piles, it’s not something people want to talk about. So there you are my dizzy friends. Vestibular Neuronitis and Labrynthitis is like getting piles….dear oh dear….see what I’ve got to put up with.

    I’ve also wondered if it’s any age thing. It started for me when I was 40, Jenny’s son is 35 and some of you ladies are older than me. I’m not sure about you Babz but with a young family I guess you are a bit younger. 

    I despair of our health service. You’ve got the GP’s receptionist that will try and prevent from seeing the doctor and then you got the doctor preventing you from seeing a specialist and then you got the specialist who thinks he’s too important too see you a second time. I hate it when the GP palms me off with pills. Don’t forget they will take 6 weeks to kick in. So you have to wait 6 weeks to find out they don’t work. Babz I was given Betahistamine and they didn’t seem to do anything for me.

    Gill I’m with you on the anxious and depression thing. We’re NOT depressed, we are ill and the reason we are anxious, again is because we are ill but then GP makes you think (well me anyway) that the anxiety and depression is causing the vertigo. Don’t asking me how or why but I must have been at the end of my tether but my GP somehow referred me to a counselor. In the end it was quite clear I was wasting my time she saw me walking like a drunk man and she said we could talk about this all day but it won’t fix that. So I cancelled all the following sessions. My GP clearly sent me on another pointless route which wasted even more time. Again I see it as palming me off and then I am out of hair for another 6 or so weeks. Call me sceptical but it must be a cost thing with pills being the cheapest and specialists being the most expensive with other trades in the middle like physio therapists and counselors, If they can send you off with a packet of pills someone in the health service has saved a few quid.

    Babz interestingly since this all kicked off for me, I now suffer with social anxiety and agoraphobia.

    Any how it’s great to get this off my chest and talk to you all and if you are a GP or a ENT professional, please take note and read what we are saying here...Pleaaaasssee !! 

    • gillian76726
      gillian76726 DizzyDarren

      Posted

      Yess Darren, i know what you are saying re the receptionist, gp, consultant thing.  I have thought the same too and yes the prescription pill scenario is a joke and quite frankly i find it insulting they do this and think we don't notice what they are doing!!  As for sending youto a counsellor - that's another bloody wheeze isn't it.  and yours actually admitted it - that's the thing you have to do now is get the 'professional' you are seeing to admit they cannot help you, cos then the gp has to accept that coming from a professional colleague and it opens the door for you to push for other tests.  Also as you say they conveniently forget, even though i am sure they are aware, that all this time in between waiting for things to 'work' or not etc eats into our lives.  i am nearly 66 now and this started when i was 62, so 4 years of my retirement i was looking forward to have been ruined and not much to look forward to if it continues as getting older and more infirm is only going to exacerbate it isnt it.  I even have said to one gp at my practice - 'i don't want to go into my 70's and start having falls due to my balance problem, because you know what that means!!!!!'....and they just look at you with this b.....y vacant, unresponsive face, because they damn well know i am right!  I'd love to be a fly on the wall in the tea room, or wherever they discuss us and hear what they say wouldn't you.  bet that wouldn't surprise us.

      I have a friend who has a similar problem in Endocrinology with Thryoid problems.  This is also an underdiagnosed, undertreated condition that is a 'one size fits all' scenario and a limited approach to diagnosis, treatment and the drug Levothyroxine being the only thing used to treat it and doesn't work well for a hell of a lot of people struggling with Hypothyroidism.  And considering the Endocrine system and one of the most important systems in or bodies and consists of more than one gland, they only treat the thyroid!!

      Another thing that gets me mad is when a new wonder drug is announced in the press, and i think 'well we won't be getting it mate' cos it will be too expensive.!!   Rant over, now going to take dog out and pull some weeds out!!!

    • Babz36
      Babz36 gillian76726

      Posted

      I'm 36 Darren :-) I've been referred for CBT as well as the dr thinks my anxiety is making the vertigo worse so that needs to be settled to help the vertigo!!! I've found a private clinic in Liverpool who specialise in vestibular disorders. It's £120 for a 2 hour vestibular assessment then £50 each appointment after. I'm seriously thinking about giving it a go as I've still had no appointment for ENT and I want my life back! Having a bad day today, my son was up poorly most of the night. So I'm really tired and really dizzy today. Just so frustrated and fed up with it all. Xx
    • DizzyDarren
      DizzyDarren Babz36

      Posted

      ENT will probably refer you for VRT so I wouldn't start spending your money just yet. What would be interesting if you are speaking the the private clinic is to ask them if they have any testimonials and that demonstrate positive results and what the average timeline is for a full recovery. I hope your son gets better soon, becuase you need your kip. Sleep is so vital for people like. I was tossing and turning the other night and I paid for it all day yesterday and still I am still paying for it today. I nearly didn't go into work today and maybe I shouldn't have but I just can't bring myself to take a sickie.
    • Babz36
      Babz36 DizzyDarren

      Posted

      I've stopped work for now. I had 4 weeks off on the sick and then I saw my boss and handed my notice In. Im a massage therapist so I just couldn't cope with 8 hours a day on my feet pampering people when I feel horrific myself. She's said there will always be a job there for me for when I'm better. Just don't know when I'll be better ! Driving is a challenge for me as I don't feel my eyes are working together and like I'm looking at the world through lenses or eyes that aren't mine. So I just drive locally at the moment as I'm too scared to go far! I'm just feeling very fed up today! Xx
    • jenny07787
      jenny07787 DizzyDarren

      Posted

      thank you for good wishes. I think every one should get together and form their own clinic that way at least others around that understand.

       

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