Weird new symptom - quick feeling of blacking out and losing control

I don't have a diagnosis of Hughes but I do have a precursor disease - UCTD. I thought this might be a good place to ask my question.

I have a new weird symptom and I have no idea what it is. Twice today I have just been doing normal stuff (standing up and sitting at the PC) when very suddenly my eyes lose focus, I feel myself tilt like I will fall over and a funny feeling comes over my head, like how I used to feel when I was anemic and I bent over and I would feel like I was going to black out. Only I'm not bending over and I don't actually have that blackness come over my vision. It's actually gone in a second.

I have had loads of weird niggling symptoms lately and I have been thoroughly tested - every thing is fine, TSH, blood sugar, blood pressure. I feel like it would be another waste of time to see the doctor again and I'm sure they would roll their eyes at me.

I'm really kind of worried it's a stroke-like event. How can I tell?

I have had a rapid heart rate recently and had a rheumo say I have slightly sticky blood in the past (4 years ago!) so any light shedding would be appreciated.

10 Replies

  • HI, are you in the UK, and do you have a designated Hughes Syndrome Specialist? With symptoms like that you need to be seen! Are you on Aspirin, or anticoagulation of some sort, it is crucial that a specialist is managing your Hughes Syndrome/APS and this in turn helps your GP. MaryF

  • It sounds to me that you are experiencing TIA'S, small strokes that clear up on there own.I strongly suggest seeing ur dr today or going to the emergency room. If you are on blod thinners be sure to let er know so they don't just give you blood thinners to much is a very bad thing!

  • Thanks for your answers - I went to A&E and the doctor seemed to think I was fainting. He says if it happened again he'll get the GP to give me a heart monitor, so obviously he thinks it's more to do with the heart muscle than blood.

    I haven't been diagnosed so who knows what's going on.

  • What you describe could be a condition called POTS. This actually is not uncommon with sticky blood. When the Dr says you may be fainting he is almost right but what he is not explaining to you is that its your autonomic system that is not working correctly so that your BP falls suddenly which causes you to feel faint or actually do so. If it was POTS then it would not be necessarily your heart. Im wondering if this happens more in the morning too?

    You may like to try doing a few things to see if it helps improve things.

    1. Raise the head of your bed by around 6 inches if possible.

    2. Drink a glass of water before getting out of bed in the morning. Also keep hydrated during the day.

    3. Put some good quality sea salt on your food or in your cooking. Not a lot but just a little more than you are doing at the moment.

    Those three things helped me quite a lot, however I found this helpful link which also gives not only the above but some more. If you do try the above and they help, then ask to be referred for autonomic testing.


  • Thanks for these suggestions. I do already use a good quantity of pink himilayan salt on my food but will be more conscious of it and try your other suggestions too. Thanks :)

  • Just reviewing your article - I've been trying to eat larger meals lately (3 weeks?) and been trying to eat my meals within a 6 hour window (12pm to 7pm) in order to lose weight. It's supposed to be like intermittent fasting. I guess this isn't helping me? I've lost about 5 pounds.

    I eat a Paleo diet but I struggle not to eat sweets and soda too. And I've been eating considerably more cheese lately as part of my diet routine.

    I also have a problem with lying down with my head higher up, just because of the pain in my back and legs which gets considerably worse when sitting up in bed. So I will have to try being slightly elevated and hope I can get away with it. Prolonged standing is also painful for me because of my back and legs so that's easy to avoid.

    I see tachycardia is a feature, which has been a problem for me lately, which has been dismissed by the GP. So I will go back to him armed with this info.

    Sorry for not replying before - my internet access was down all friday and I was out all saturday. I really appreciate your advice and insight :)

  • I will also add a paper to back up the advice from APsnotFab MaryF

  • It's a little scary but that's a good quote I will be taking to my GP "Numerous recent works have made it clear that connective tissue diseases correlate with cardiac rhythm disorders, which can be due to endocarditis, myocarditis, or pericarditis, or to coronary thrombotic events or autonomic dysfunction".

    My ANA has been 1:2560 for 4 years and they test it yearly. Whenever the test result comes back they then automatically test my dsDNA antibodies to no avail. but they haven't been testing my lupus anticoagulant or anti-cardiolipin. I know I should be making them but there are so many other random symptoms and they get sick of me and my requests for tests and my knowledge that I don't follow up everything for fear of alienating them.

    Maybe I should ask to be referred to the rheumo again. I haven't seen him for 2 years, since my MRI came back clean and they referred me for physio and nothing has happened since....

  • Great article Mary.

  • Don't forget compression stockings, they can help a lot too.

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