its not new.: hi all. last yr before i... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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its not new.

chapman profile image
12 Replies

hi all. last yr before i found out about my p.e then i couldnt sleep on my left side, all the spmptoms start such as racing heart, pins and needles in hands,body,weakness, head frobing,weezy so on. im on warfrin (5mg at moment). i do have a pain on left side of head constently. i have numbness in right arm. its like a balancing aked.ahah. i have told gp and others of this. anyone with simlour syptoms?. stacey.:-)

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chapman
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MaryF profile image
MaryFAdministrator

Hi, are you due a check up soon with your specialist or GP? Hope so. Let us know how it goes. Mary F x

chapman profile image
chapman in reply to MaryF

hi mary. iv got 2 appontment in june. one for romy and other about kidnys. going to see docter in morning (friday and going to ask to be referd to heart docter that i spoke to last year about my pulpution. thanks stacey

MaryF profile image
MaryFAdministrator in reply to chapman

ok.. and make sure you mention thyroid also.. as that can cause palpitations - and is common with Hughes Syndrome, best of luck with GP. Mary F x.

laserlight profile image
laserlight

Yep. GP or specialist ASAP. Ask about atrial fibrilation (I get this) and ventricular fibrilation too. VF is much more serious and urgent. Good luck but don't delay. John.

Cherrydi profile image
Cherrydi in reply to laserlight

Do you have VF & AFib I have just had 24hrs ECG as I am having AFib it is awful, and I am giddy most of the time.

laserlight profile image
laserlight in reply to Cherrydi

Hi Cherrydi

I'm sorry you feel giddy and you may get palpitations too; that can feel very worrying when it happens. I sometimes go into AF but rarely these days as I was prescribed sotalol (other beta-blockers are available!) on diagnosis in 2005.

If you're not currently on an anticoagulant (I'm on warfarin) this may become part of your treatment. The concern is that if and when you go into AF, you may throw off clots that travel through your bloodstream and can cause serious damage.

I don't go into VF, thank God, as that would be much more serious and require immediate medical attention. You could ask your specialist or GP to explain the difference between AF and VF and why one doesn't necessarily lead to the other. This should put your condition into perspective.

You sound like you're on the right track! John.

Cherrydi profile image
Cherrydi in reply to laserlight

Hi John I am on warfarin & aspirin and have been since1997 but since Dec 2011 when I woke with the room spinning I have not been right, we shall see what tests show, as to the AF as for the dizziness they don't have an answer yet, but I have not seen a specialist who deals with us Lupus/APS patience, just general hospital doctors, I am seeing an APS specialist at the end of May, I have only have the AF for 2 months so not since the worst dizzy spell in Dec 2011, not much fun for us all is it. You are right about the clots being shot off from the heart, so thankfully I am on meds for that already.

chapman profile image
chapman in reply to laserlight

hi iv just made app for 8.30 (friday) tmrw.going to ask for another monitor on heart. had one 2 yrs ago and thay said it was fine but its not fine and its sore, tiring. . thanks for promting me. stacey

Paleosooze profile image
Paleosooze in reply to chapman

Defo ask to get your thyroid checked as well, like Mary suggested. I had similar symptoms, all cardio tests were clear for me and the cardiologist put it down to my under active thyroid. Being on thyroxine has helped. The other thing that causes similar symptoms for me is low blood sugar. Obviously you have to have your heart checked, but if that's all fine, there are other things that cause these symptoms. Oh and low iron is another one.

All the best

chapman profile image
chapman in reply to laserlight

hi took ur advice and going to see docter in morning. thanks.stacey

GinaD profile image
GinaD

I get pins and needles on the back surface of my head if my INR is low or if my pillow is not the right depth. Good luck and do run your symptoms by your doc.

Cherrydi profile image
Cherrydi in reply to GinaD

Hello GP and hospital have looked into it, since it happened as I have said above to John, it is fun and games isn't it ?

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