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Stuck in the labyrinth

Posted , 6 users are following.

charlie49460
charlie49460

It's almost three months since I first went to A&E with dizziness and palpitations, fearing I was having a heart attack. Since then I have seen about six GPs (it's the nature of London doctors that you rarely see the same one) and have had blood tests and a 24-hour ECG which produced nothing of note. Second A&E visit (this time with numbness in left-hand side and nausea, fearing stroke) said I likely had labyrinthitis and gave me prochlorperazine and suggested reading up on CBT. At follow-up GP visit doctor said it should be over in a few weeks, and (again) refused to refer me/MRI etc. Seventy-five days have now passed: the strange sensations are still here, and the doctor today said that probably meant it was Benign Paroxysmal Positioning Vertigo instead, but that it  wouldn't explain the heart issues or the muscle weakness in the legs or the numbness on the tongue or various other weird sensations. I have another appointment with a GP who specialises in ENT next week (each appointment takes two weeks to get and lasts 7 minutes) and am very much hoping for something more substantial!

I feel as though I am stuck in going round GPs, none of whom know that much about it or think it is very serious, and want me to just sit it out. Perhaps that's fair enough in the underresourced NHS. Meantime it's driving me round the bend. If anyone has any advice on how to get through the GP gatekeepers to, say, a neuro-otologist at UCLH, I'd love to hear from you. Plus does anyone else have those symptoms: muscle weakness, twitches and nerve pain in legs, pins and needles or strange-feeling tongue?

1 like, 21 replies

21 Replies

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  • kathie37110
    kathie37110 charlie49460

    Posted

    I had muscle weakness and nerve pains.  Went the round of doctors, neurologist, rheumatologist, physical therapist, back specialist.  The one that has helped - a chiropractor.  In three months with her I feel better than I have in the past three years - and I really only went to see her out of desperation.  She isn't the bone cracking kind - more gentle manipulations.
    • charlie49460
      charlie49460 kathie37110

      Posted

      Thanks for responding kathie. Sounds like you had a disc or back problem - or did it have a ear/dizziness/balance component too? Have read people have sore leg muscles because they are trying to compensate for lack of balance, but I don't know how widespread that is.
  • helen91488
    helen91488 charlie49460

    Posted

    Hi Charlie. 3 months tomorrow I was first floored  with dizziness, ear pressure neck ache etc etc. Labrynthitis, vestibular neuritis, etc etc. Like you back to GP. Am taking betahistine and buccastem if I really need it.  I returned to work last week but get very tired very easily and then the symptoms return. I was told maybe it was positional vertigo too but nothing shows on scan or my bloods? So it's a virus! And it will go eventually! . Lovely waiting! I work in a hospital and I'm learning that this is a very common complaint. Our ENT dept sees many people weekly like it.  Gives me some reassurance I guess. Just keep plugging.with your GP. Request firmly an ENT referral xxx

     

    • charlie49460
      charlie49460 helen91488

      Posted

      Hi Helen, that's great reassurance thanks. Three months in, the moments of massive anxiety (like, am I about to die) are over and it just becomes a boring and frustrating how-long-can-this-possibly-last feeling. My "firm" attempts to request a referral have had no effect so far but next time will plan to chain self to the GP's desk until they succumb. x
  • isabel72115
    isabel72115 charlie49460

    Posted

    I'm so sorry you're having such a bad time, my doc said labrynthitis straight away, no tests, nothing, meds dont seem to be helping, just been to supermarket, BIG mistake, had to stop & hold on to trolley as if my life depended on it, won't try that again anytime soon! I don't have a lot of your symptoms apart from a wierd weak feeling in my left arm, but no tingling, hope you get sorted out soon
    • charlie49460
      charlie49460 isabel72115

      Posted

      I had weird weak left arm too! But now that's not at home and this week it's weird weak legs. I have a theory it rotates around your body doing in one thing at a time. Am glad you got swift diagnosis. Mine maybe not helped by going into hospital saying it was weird heart and dizziness too. Keep up the good fight.
    • kathie37110
      kathie37110 isabel72115

      Posted

      For a long time grocery stores were a big trigger for me.  Too much eye stimulation looking up and down the aisles.  Don't try it without a buggy.  The eye exercises helped me with that - where you sit in a chair and stair at a focal point about six feet away.  Keeping your eyes on the object move your head up and down and then side to side, 30 seconds each, three sets.  Then do it with your eyes closed.  I did those three times a day for weeks and finally that helped. 
    • isabel72115
      isabel72115 kathie37110

      Posted

      Thanks kathie, I'll give those exercises a try, I've got to the point where I'll try anything, feeling really down just now, it's difficult trying to get on with life when your world is spinning around you. 
    • kathie37110
      kathie37110 isabel72115

      Posted

      I completely understand.  Having to ask people to help is really hard for me and I have sure had to do it.  Keep with the exercises - will take a few weeks.  Or it took a few weeks for me.
    • charlie49460
      charlie49460 kathie37110

      Posted

      Isabel, I found it very hard not to get down. I think the anxiety/depression it seems to encourage is at least as bad as the actual thing itself, if not worse. Plus the fact that there is nothing tangible to show other people you are sick – so they are sceptical – and the length of time it seems to go on. Things that have worked have been reading CBT things online (and a book called the Little CBT Workbook) for anxiety. Ginger tea seems to do something, drinking a lot of water too, and the prochlorperazine, though I don't often take it. I haven't really done the VRT exercises rigorously yet – am still waiting on a proper diagnosis, as I don't think it would help for some varieties. Hope you feel better soon..
    • isabel72115
      isabel72115 charlie49460

      Posted

      Hi Charlie, I think part of my problem is I'm not sure what kind it is,as my doc just said labrynthitis without any tests, gave me a nasal spray and betahistine, it may be my imagination, but I find both of these tend to make things worse shortly after I've taken them. I'm considering going back to doc to see if I can get an appointment at ENT clinic as I personally feel the problem is in my ears, no pain, but a feeling of liquid trying to get out. Anyway, onwards and upwards as they say, though in my case it's more like round and round!
  • kathie37110
    kathie37110 charlie49460

    Posted

    Charlie - I fell and hit my head pretty hard about 11 years ago.  A year after that I had mild vertigo and it went away.  Three years ago I had a three month period of severe vertigo and fell about 15 times.  That messed up my back and hip pretty bad - they got out of whack and the muscles moved out of whack to support them.  I'm finally now getting back into alignment.  My continuing problem is my balance, not from vertigo, just from who knows what.  I do okay inside now, but I can't walk outside without holding on to a banister or someone's arm, and it's exhausting.  I use a cane but that doesn't always give me the strength I need.  I am hoping that I will find the right combination to build my strength back up on my left side.  I can't climb stairs or step up on a curb on my own right now.
    • charlie49460
      charlie49460 kathie37110

      Posted

      Yow am so sorry to hear that kathie. Sounds really hard and painful, but like it's - hopefully - something that you will learn to adapt to. I have read strange things about chriopractors but clearly  working in your case. I wish you the very best at ironing out your kinks and building up strength.
  • susan556
    susan556 charlie49460

    Posted

    Hi Charlie, reading all the replys on the vertigo subject is horrendous. i wasnt expecting to see just how bad this can get and i thought i had problems with an attack, my third one with just the dizziness followed by the being sick. i felt teriible and weak for days afterwards, the palpitations just before and whist i was being sick. been given the prochlorperazine as well, told ive got Miniers disease, dr gave me a print out and that was that, no tests, nothing. I get the pain in legs but then i have M.E. as well, arnt i lucky. id be worried about the pins and needles and the strange sensation on thr tongue which i had as well. You cant help but think its a strok i know as both are similar, My mum was like me in the begining and ended up have several TIA s, she is now on cloberdogerol tablets and hasnt had an attack in yesrs now but still gets the days when her head dont feel right but then she is 85!  I think we all need to be 100% sure it is vertigo, miniers disease or what ever, its very scary when the symptoms are the same as a stroke isnt. How do they ruke this out i wonder?

    Sue 

    • charlie49460
      charlie49460 susan556

      Posted

      Hi Sue, thanks for replying. I had very similar doctor experience – only when he was going to give me a printout from a website he found the printer wasn't working so he just showed me the web page! I mean we can all type it into google, right? At least am 100% sure not a stroke now because otherwise I wouldn't be here discussing it, but it was very scary at the time. Glad (I mean in a good way) to hear you get the weird legs/tongue symptoms too as that has been an extra worry. I hope you don't get too much anxiety and get better as soon as is possible. C
    • susan556
      susan556 charlie49460

      Posted

      Thanks Charlie, yes of course if  it was a stroke you wouldnt be hear now thats true.  I actually wonder if stress can cause this as prior to this happening we had a few family upsets.

      Sue 

    • charlie49460
      charlie49460 susan556

      Posted

      Maybe Sue yes. In my exp stress makes you more likely to be ill, and viruses seem to be what often cause these problems.
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