1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Dizzyness on lowering my head

Posted , 12 users are following.

ricky23486
ricky23486

after 3 years on prednisone  for pmr I have tapered from 15 to 8 mg daily.  A few days ago I noticed a new symptom ....that my sense of balance is impaired when I bend down or bend my head  forwards.  I wanted to read what others have said in the past about dizzyness but don't know how to find the discussions.  I know that if it is not pmr related that it could be caused by pressure on the blood vessels. But I wonder what it indicates ...am I developing something new? . Or is it typical of pmr / prednisone / and if there is anything at all that I can do about it?    

 

0 likes, 61 replies

61 Replies

Prev
  • Reeceregan
    Reeceregan ricky23486

    Posted

    Not too sure Ricky, I haven't actually mentioned it specifically to him, I've just assumed it was another side affect that I have to put up with. Having GCA as well meant I had to stay on the high dose of 50mg for 2 months before he started the reduction plan for me and I wasn't in a hurry to rush things, given how serious it was. I still have blurred vision but all the other GCA symptoms have gone, so I'm grateful for that. I will mention it when I see him next visit though. 

    • lodgerUK_NE
      lodgerUK_NE Reeceregan

      Posted

      Can I just put this out for you all to think about.

      It is currently thought that the percentage of people, presenting with GCA and complaining of deafness is minus 2%...............now research is being undertaken to see if that is accurate  as that figure is in doubt......the research is being done by the NHS and it would be lovely if everyone would take part.

      PMR & GCA,=  oxygen supply impaired to muscles etc.............so what have you in your ears.........and the whole of the rest of your body..............muscles, even on the root of every hair.

      Try this, when your head aches......spread your fingers through your hair, and gently tug........feel the pressure release......do it all over.

      Japanese have Shiatsu and it is a bit like that............

    • ricky23486
      ricky23486 lodgerUK_NE

      Posted

      That is an interesting way of  thinking ... so if  the oxygen supply to muscles is impaired that would  explain why  movement makes me feel better.... so  could that be why pain is worse at rest.....  

       

    • Dirk_St._Clare
      Dirk_St._Clare lodgerUK_NE

      Posted

      Hi, I live in the U.K. How can I get involved in the research, Who do I need to contact ?
    • lodgerUK_NE
      lodgerUK_NE Dirk_St._Clare

      Posted

      Dirk,

      The research into Your Ears, is only for people in the UK.  It is being carried out by the NHS R&D Queen Elizabeth Hospital. 

      However, I have sent you a PM with a link to a website where there are two research surveys running, one of them was devised in collaboration with a charity in the UK.  Elliot lives in the USA and he has been running this since August 2008. 

      If, the critieria change to include non-UK, you can be sure we will be calling on you all, which we did for the basic survey last year.  The result from that basic survey lead to this 'pukka' research now being undertaken.

      You can read the hows, where's and why's on the website link I have sent you in the Summer 2017 Newsletter.

      Thank you.

    • lodgerUK_NE
      lodgerUK_NE ricky23486

      Posted

      Yes, but never ever overdo the exercise, they must be given a chance to what I can only describe, as 'catching their breath'.  Gently does it in every way,,,,including reduction.

      By the way, I have no medical training whatsoever, just a person who had GCA for Five years and coming up to end of 6th in remission.

       

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      Eileen

      I just checked, it should be nhs.net. after Susan.Pugmire@

      Will try and make contact with moderator.

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      Oops, I thought USA. mind I am getting to be an ancient Brit.

      I sent him a pm as well.........rolleyes

  • ricky23486
    ricky23486

    Posted

    In continuation of the forum's advice to consult a doctor  about the balance issues... today I began with the ear nose and throat specialist who decided that it is not coming from his field but thinks that there is something going on somewhere in my head.....referred me for a neurological examination since he found some weird responses to the tests he did....which could either be congenital and normal or something more challenging.  Anyway, next stop is the neurologist and only after that the rheumatologist.  Incidentally when I asked the ent specialist about  the prednisone as being a possible cause he said that the opposite Is the case........ that it often helps ......

     

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.