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

SammyJ profile image
5 Replies

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.

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SammyJ
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5 Replies
MaryF profile image
MaryFAdministrator

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

SammyJ profile image
SammyJ

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

Salty profile image
Salty

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

SammyJ profile image
SammyJ

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

JaneFletcher profile image
JaneFletcher

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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