APS, Lupus and Vasovagal Syncope - Anyone else got all 3?

Hi, just wondered if anyone else has got any links with APS and Lupus and Vasovagal Syncope, I have a pacemaker which I have had for over 13 years due to the Vasovagal Syncope but I am now starting to wonder if there is some sort of llink with all 3 of my medical conditions and have decided to go and see Professor Hughes for some help as I seem to be getting nowhere at the moment, I am just given a cocktail of medication to take and am in chronic pain on a day to day basis.

If anyone has any help, similar experience I would welcome your comments, advice.

Many thanks Samantha.

7 Replies

  • Hi Sam - Welcome to our friendly group. Im glad that you have found us and I hope that others will be along soon to answer your question as we have a mixture of people on here with a number of different conditions along with their APS. x

  • Actually its me again lol. Now that I actually understand what Vasovagal Syncope is I can answer this a little better. Prof Hughes often sends his patients with autonomic issues (which that could be a part of) to Prof Mathias so you could see PH and get him to refer you or get a referral straight to Prof Mathias as I understand he is the expert in these things.

    Hope that helps a little.

  • Hi, thanks for your help, I have had vasovagal syncope for over 15 years so I know of proff Mathias, I saw dr Adam Fitzpatrick who is also specialist in this area, I have only had lupus and anti phospholipid syndrome for a couple of years, well that've as when they diagnosed me, although I think I have had it for longer. I am seeing proff Hughes in feb so am hoping he maybe able to help, in a lot of pain after the pe and fed up of being drugged up with all the medication I have to take, keeping positive he can help. Thank you

  • Hi there, and a big welcome, autonomic nervous system disorders do at times crop up with Hughes Syndrome and also other autoimmune diseases... Professor Hughes will indeed be able to shed some light on this for you. Mary F x

  • Thank you very much, be great to hear from anyone with similar experiences, sometimes Im sure you will understand this you do feel a bit alone with everything that goes on but its nice to know other people understand, thank you x

  • I Sammy. I recently saw Professor Hughes for APS and an autonomic disorder and he felt strongly the autonomic disorder was due to APS.

  • Hi SammyJ I have all three and the chronic pain. It has been a few years since your original post. How are you doing and what have you found to help manage them?

    I don't do well with narcotics but have found a shot of Toradol to be effective for all over pain and migraines.

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