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Fainting with Hypermobility?

Posted , 3 users are following.

ciara49064
ciara49064

I have Hypermobility & recently been referred to Rheumatology querying Ehlers Danlos Syndrome. My question is has anyone experienced symptoms of dizzy spells and fainting and how do you cope with or manage it?

The pain and fatigue I'm now kind of use to, but for past 16 months the dizzy spells and fainting have been dreadful to point of loss of driving license and independence really.

Any help or advice greatly appreciated. Thanks.

0 likes, 3 replies

3 Replies

  • erykah71
    erykah71 ciara49064

    Posted

    Hi Ciara,

    Sorry to hear you've been having a hard time. When do you get the dizzy spells? Does it happen when you stand up? 

    There is a condition which a lot of people with EDS/JHS get called PoTS (postural orthostatic tachycardia syndrome) which causes a fast heartbeat, dizziness and/or fainting on standing. It has something to do with the way the blood pools in the lower part of the body on standing. Best to google to get proper info as I'm still learning.

    I have hEDS and am currently being investigated for PoTS because although I haven't fainted, I regularly fall over due to dizziness when I stand up. (just spent eight weeks in plaster after falling and breaking my leg in two places)

    I was referred to cardiology for a tilt table test, which I finally had yesterday and after 20 minutes resting in an upright position my heart rate was between 134 and 139 bpm, I felt lightheaded and my blood pressure never dropped. Now waiting on another cardiologist appointment for results.

    There are a lot of symptoms, many which crossover with EDS so it's best to read up and talk to your GP. Potsuk.org is a good website to start with.

    Good luck and keep us posted with what happens

    Erykah71 

    • ciara49064
      ciara49064 erykah71

      Posted

      Hi Deborah,

      There seems to be no real pattern to the dizzy spells and fainting. I could be sitting on sofa and whole room start spinning or get up of sofa go to next room and then whole place to black pulsing in ears and get dizzy. Sometimes sitting in stationary car I have to check did hubby put handbrake on properly, if I concentrate on something for long periods it can start then too.

      I've been through all cardiology tests and all clear which I guess is good as heart is ok but still leaves me with no answers. Currently being investigated with ENT as I'm having a lot of ear pain with it all but the consultant not convinced it's anything to do with ears & balance but has ordered MRI to get clearer picture of what's going on. It's all very frustrating.

      I am reading lots about EDS and Hypermobility and the more I read the more all my symptoms from childhood to now make sense and unfortunately my kids have inherited my Hypermobility and one been referred querying EDS also.

      Appreciated your response and help.

      Ciara

    • ciara49064
      ciara49064 erykah71

      Posted

      Hi Erhkah,

      Apologies I've only just realised my tablet spell checker changed your name. It's a pet hate of mine getting names wrong.

      Ciara

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