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Benefits

Posted , 9 users are following.

tanya49316
tanya49316

i was diagnosed with Menieres 3 years ago. I am currently holding down a job of 35 hours a week, although this is becoming increasingly more difficult to do as I am having to take more and more time off with the dizzy spells. I have a second appt next week with the works occupational health nurse who is going to deem me fit or not to carry on working. My question is, if I have to give up my job, what benefits, if any, are any of you lovely people out there claiming. I have no idea what I'm entitled to!!!

1 like, 35 replies

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  • lyndsey54
    lyndsey54 tanya49316

    Posted

    If in the US, app,y for Social Security Disability.  Meniere's Disease is on their list of conditions for immediate approval PROVIDED all testing they require has been done. Go to the SS page and you will see what testing is required.  I was approved in less than 3 weeks.  I also received long-term disability from my employer.  I will collect until retirement when benefits change to normal SS and I will start to receive my pension.
  • fil39169
    fil39169 tanya49316

    Posted

    I would be interested to hear the answer to your question.
  • wen06862
    wen06862 tanya49316

    Posted

    Hi all,

    At the moment the benefits vary as the Government is changing them (they've been doing this for the last 4 years)

    Areas across the U.K. are still on different benefits (really helpful that!)

    I was on Incapacity Benefit and Disability Living Allowance - How much you got depended on how bad "they" considered you to be. You get points for each key word you write on the form.

    Now I'm on EESA - Employment and Support Allowance and DLA  - there are 3 levels of payment (which is changing to PIP - I'm not sure what that is yet - I've not been sent any info.

    You get sent for a medical - and even though I had a full blown spin at my first medical, they weren't convinced. It is the most stressful thing I have been through.

    At my last medical I had a drop attack and they had to get an ambulance - my stress levels went through the roof. Since having MD I've had 6 medicals, yet my partner (has MD also) has had just 2.

    I made the mistake of saying at the medical, that I wanted to work. They took it literally - be careful how you word things. (I'd been in a new job for 2 years and loved it. The boss kept my job open for a year until we both realised that I wouldn't get back to work.

    My dad had MD, he was self employed and a sole trader so when he was ill (every day for a year at a time with breaks of a few years inbetween the cluster of spins), no money came in, he lived on savings and when he worked he saved money for the next time.

    The Meniere's Society do free leaflets for benefits and will help with advice

    It costs £16 a year to join. It has been a lifeline for me - I met my partner through them and several friends which have helped with advice through the years.

    Take care

    Wen

     

    • wen06862
      wen06862

      Posted

      Hi, 

      Regarding the keywords

      The only one I know for sure is -use ~"Vertigo" instead of dizzy, as dizzy can mean other things.

      I think that putting "violent vomitting" helped too. along with "I do not leave the house alone any more" after having a sudden attack in our town centre. I had to phone my dad to come and get me AND 2 policemen walking past thought I was drunk!!

      It took me 5 days to complete the form, I have nystagmus all the time not just during attacks.

      Tell them your worst day. E.G laying on the bathroom floor for 12 hours (that was normal for me) and even if there was someone there to help you, it doesn't stop the problem.

      If you have had a diagnoses from your GP or specialist, get them to fill in that part of the form.

       

    • fil39169
      fil39169 wen06862

      Posted

      Thanks wen, I think you've told me what I had already guessed at.  Anybody applying for anything is always advised to describe their worst day. I'm keeping a diary of my attacks, which is useful too I should think - my consultant suggested I should do so, so I did.
    • tanya49316
      tanya49316 fil39169

      Posted

      I've been keeping a diary too this year, but I'm finding it quite depressing when I look back and realise  how many bad days I have 😕
    • wen06862
      wen06862 fil39169

      Posted

      Best to, I've got all my diarys from 2000 when my MD started.

       

    • wen06862
      wen06862 tanya49316

      Posted

      It's depressing filling in the forms too, when you realise that you cannot do what you could.

      I tried for a year to get back to my job but I just couldn't do it

    • fil39169
      fil39169 wen06862

      Posted

      I've been doing mathematical calculations about incidence of attacks, drawing graphs and diagrams etc and working out percentages whilst on various medications!
    • wen06862
      wen06862 fil39169

      Posted

      The problem is, my MD has varied over the years anyway, so has my partners.

      I had attacks every night at about 5pm for about a year. Then in July they disappeared for two weeks - it was hot that year. In September I was on holiday, relaxing, it was hot. my attacks came on in the morning for a few weeks, then a gap of about a month. Then I had attacks which lasted 6 hours, the others had been 12 hours or more.

      I told the specialist and he said, that is why it is so hard to treat.

      I went on a really strict no added salt diet, no caffeine, no chocolate, had acupuncture, massage, more exercise, less exercise, etc. but it made no difference to my attacks, they were still random, as they are now, 15 years later. Just one thing has improved it, I had Gentamicin op on left ear in 2004, killing off all hearing and balance, it stopped the attacks in that ear, 6 months later MD started in right ear

      My partners attacks come out of the blue too, he's tried everything too.

      I stopped taking Serc for a time and things improved !, I lost that woolly head feeling and could think straight, and my attacks decreased!!!

      My dad was completely different again, so are my penfriends I have who have MD

    • fil39169
      fil39169 wen06862

      Posted

      Hi wen, I was on serc for a while and it was worse than useless.  Like you, I suspected it was making me worse.  This was from the consultant.  I was so fed up and depressed, with bad attacks (and I mean puking, can't move, sweating, darkened room etc) every third day, that I cried in my GP's and she put me on Cinnarizine and Ondansetron and I have improved a fair bit.  Still get the attacks, but they are milder and less frequent (of course, this might coincide with them getting milder and less frequent by themselves so I might be assuming wrongly the efficacity of my new meds!).  Saw the consultant who told me they never prescribe cinnarizine for MD (what a lie, I googled it) and wanted me back on serc, so I flatly refused.

      My first attacks, when I first had it about six or seven years ago, I got loads of warning, build up of pressure, tinnitus got worse etc, but now I just get them completely out of the blue, no warnings, so I live in fear of being somewhere totally inappropriate and having one.  Sainsbury's for example.  Really bad as when I get a really bad attack and am sick from the bottom of my belly I wet myself.  Not always, just in a particularly bad attack.  I would just die if that happened in public.

    • wen06862
      wen06862 fil39169

      Posted

      My trouble is that I only get about 5 seconds warning of attacks too. I always have, Then I fall to the floor and well you know the rest.

      It terrified me when I was in my city centre with an attack. it's only happened 3 times as I do not go out on my own anymore and have a "help" system in place with my carers

       

    • fil39169
      fil39169 wen06862

      Posted

      No, I don't go out on my own either and I never drive any more.  I always take my meds with me, and a bottle of drink to take them with and if I get any warning, I take some stemetil.  If its a bad attack, I get a stemetil injection, but if I'm out, we have to find somewhere quiet to do it which in itself is stressful, crammed two of us into a loo, feeling dizzy and sick, worried someone will think something odd is going on inside that loo!
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