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Just can't seem to cope

Posted , 14 users are following.

emma93780
emma93780

I've posted in here a few times and met some wonderful people with great words of advice however I'm still really suffering!

I don't know what to do or where to go anymore as I've had quite a few tests some that have come back normal and some that have not, I've had ct scans which are normal but never had an Mri, I have been having dizziness for about 6 months now with not very much let up or break, I have tried numerous things to try and improve it and nothing works.

I'm getting myself so worked up about it as I have 2 young children to look after and need there mum to be well, I have been to the doctors to many times to count and they don't know what is wrong with me I'm sure they think it's not as bad as it is but honestly it is, it's getting to the point where I can hardly stand up for long periods of time and I am having to walk holding on to walls etc, I even feel dizzy when I'm sitting down, yesterday I felt as if the blood was draining from my head to my feet and went all lightheaded luckily I was sat down at the time as I think I may have fallen otherwise.

I don't know where else to turn all I know is I just want to sit and cry it's that bad. Xx

1 like, 41 replies

41 Replies

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  • gillian76726
    gillian76726 emma93780

    Posted

    Hi. Emma ,,i know how you fel, but my sympathy and understandng wont help much i know.  when you say you've been to,loads of drs,,are you talking about gp?  hAve you sseen a neuro otologist yet?  Because really ifyou haven't  you need to see. A specialist in vestibular problems, a gp or ENT even will not be much good to,you.  Can you,let us know whomyou've seen?
    • emma93780
      emma93780 gillian76726

      Posted

      I've had 2 ct scans, seen 2 ent doctors, had a echocardiogram, 24hr heart monitor, had a wisdom tooth out, seen maximillo facial doc, had 2 scans on my neck, had a camera up nose & down throat, physio, accupuncture, nuerologist back in 2014, im taking sertraline, propanranol, Stematill (occasionally), folic acid and having b12 jabs due to low blood tests last week, seen my own gp about a hundred times (well feels like that anyway) and they don't know what it is, waiting to go to a balance clinic & see nuerologist again and nothing still the same as I have been they pin it on anxiety but I'm only anxious because I feel so bad not the other way round..! The ent doc was pretty useless tbh he was pretty vague, they just don't seem to understand how bad this is or can make you feel x
    • gillian76726
      gillian76726 emma93780

      Posted

      oKay,well as most of us have discovered all these scans and MRIs really arentvery helpful, just really done to,rule,things out as opposed to,diagnose. and as i've said before ENTs and even straight Neurologists are more than useless.  ENT,s. Are just that, Ears, Nose and Throat. they have no real knowledge of the Vestibular system as thy dont learn it, thats why he would have been vague. (I saw two different ENTs and an Audiologist)   a neuro Otologist trains an extra 4 years!! and a regular Neurologist is into the brain, not the vestibular system.  my experience with the drugs was they made it worse, especially Propranol and the Stematil is just for nausea i believe?    The balance clinic may be mire helpful Emma, so give that a try.  also for anxiety that this conditon causes (And NOT, as you say the actual cause of the physical,problem  as I have told them all countless times, they don't like me saying it cos they know its true)!  i did find the Cognatve behaviour Therpay usful despite my own misgivings, for the anxiety,,so,if youre  offered that. Take it!  But you relally need to bang on about seeing. A Neuro Otologist Emma!!
  • Gilly_flower
    Gilly_flower emma93780

    Posted

    Hi Emma , like other s , I know how you feel , it's a horrible illness and unless you have had it , no one understand , I've been like this since October , I'm sure the doctors don't realise how ill I have felt with this , I'm so anxious to , which don't help , I want to get back to work but just can't see it happening , I have 2 beautiful granddaughters , who I look after , but can't at the moment , so it must be hard for you with young children , I'm having a MRI scan wed ,though but it's been a long wait , audiology as well , I first had this in 1998 and it did improve after a while , but I just really wish I could find answers to be able to help myself , I also feel like I'm on a boat when I'm sitting down ,, wish I could say something to help you now , just hope things improve for you soon , take care 
    • emma93780
      emma93780 Gilly_flower

      Posted

      How long did you have to wait for your mri? I had the opportunity to have one last year but freaked out when I got in the machine I'm so determined now to be brave and just do it for peace of mind at least x
    • Gilly_flower
      Gilly_flower emma93780

      Posted

      Hi Emma , saw the ent consultant before Christmas , she requested it , so about 6 weeks , I know if it s to rule out anything sinister , which I hope it isn't , but my fear is I'm I am going to be left like this with no help , I'm sure my doctor is putting it down to anxiety , I just want to scream at him , it this horrible illness that is making me anxious , not the other way round , I was fine , until October 12 th and wham get out of bed and I'm like this , it's affecting everything I do , 
    • emma93780
      emma93780 Gilly_flower

      Posted

      I know how u feel, my ent didn't order an mri but wish he did so now I gotta wait to see neuro then still no guarantee he will do one either. X
  • alison17886
    alison17886 emma93780

    Posted

    i really understand where your coming from ive been suffering for 19mths ive had all the tests lost my job and virtually housebound ive give up trying with the doctors i paid to see a specialist no use paid to see a homeopath no good even gon for healing and acupuncture i havent had a diagnosis they really should start looking into this dizziness more cos no1 knows nothing hope you feel better soonbute x
    • emma93780
      emma93780 alison17886

      Posted

      They really should they just keep say that dizziness is a generalised term and it could be caused by so many different things and once they've ruled out the worst then they don't seem to care, which to us who are suffering doesn't help much at all as we are the ones living with this appealing condition which takes over your life xx
  • Gilly_flower
    Gilly_flower emma93780

    Posted

    I also agree with Alison , so many doctors have told me , that dizziness and bppv is so common , so why don't they look into it a bit more , 
  • jan1958
    jan1958 emma93780

    Posted

    Hi Emma, I fully agree with Gillian, a neuro otologist is the specialist you do need to see. I cant  recommend the balance centre at Medway Maritime Hospital enough, the team there including the consultant  are fantastic in thier understanding, advice and support. You need to get your GP to refer you, they see people from all over the UK and beyond. Take care now. Jan.
    • emma93780
      emma93780 jan1958

      Posted

      I've booked an app for later this morning with my doc see if he can do anything else x
    • jan1958
      jan1958 emma93780

      Posted

      Get him to refer you Emma. I found the journey a huge challenge, but worth it to see the right people for the right help. I too went round the houses with ENT neuro etc etc xx
    • gillian76726
      gillian76726 jan1958

      Posted

      HimJan, can you tell me what do at  the balance centre that is different from, say, the usual VRT exercies we get given?
  • helen91488
    helen91488 emma93780

    Posted

    Oh Emma I wish I could give you a hug I know. How you feel. Plus Ive still got flu which is horrendous. I just try lying very still and taking deep breThs. The feelings do pass xxx
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