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Hughes Syndrome - APS Support

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dizziness and light headed

JOEW profile image

Hi there,

Has anyone else experienced dizziness or severe light headedness? I have been experiencing this for about 4 months. No change in my medication in that time (take plaquinil every day). I have been diagnosed with Lupus -20 years ago and Hughes- 2 years ago. Recently is was discovered that my potassium was very low and required an IV and they thought that may have been the cause but my levels are back up and the light headed sensation is still here. Recent lab worked has also showed Aldosterone/Renin Ratio to be high so I am being sent to a nephrologist to see if there is some kidney stuff going on- but for the most part kidney function looks normal.

Any thoughts on this? The light headedness is really throwing me off- almost feels like a panic feeling.

Thanks in advance!

15 Replies
MaryF profile image

Hi, it is possible to have really low cortisol to do with your adrenals struggling to cope, and is often linked with thyroid problems and or autoimmune problems it is vital that they regularly look at your levels of cortisol, the adrenal glands of course sit on top of the kidneys. patient.info/doctor/adrenal...

Do push them to look into this, be aware that the TSH test for Thyroid is not great and it is better if more extensive testing is done, same with cortisol better if a 24 hour test is done. MaryF

JOEW profile image
JOEW in reply to MaryF

Thank you so much Mary. I will look in to having some more testing done.


I do suffer from light headedness but not constantly. It's usually related to my INR levels or if I have an APS flare where all symtoms seem to come at once.

Hopefully you can find a resolve soon.

Thanks Kim. It's usually my Igm that is high (usually over 100) but they have not checked it in over a year and it was normal a year ago. Think it's probably time to get it re-checked. Thanks for the response!

As I read what you wrote 2 years ago the diagnose of Lupus was changed to that of APS instead. Is that still correct? Do you have the same Rheumatologist as earlier and do you think that he/she is a Specialist of APS?

I wonder if you have tried Baby-Aspirin for the dizziness? When you take new blood-tests ask them to test all 3 APS-antibodies (Cardiolipin, Beta2Glycoprotein 1 and Lupus Anticoagulant) also. If you start an anticoagulationdrug like Warfarin you can not rely on the bloodtest for Lupus Anticoagulant. Therefor better to take them now. Perhaps you need to start anticoagulation and Plaquenil is more for Lupus and tiredness and pain.

You do need to speak to a Specialist of APS who will also understand Lupus.

Best wishes from Kerstin in Stockholm

JOEW profile image
JOEW in reply to Lure2

Hi Kerstin,

Thank you for your response. They are not very clear on whether Lupus is still in the mix. I have not tested positive for the Lupus anticoagulant in many, many years. Do I have it right that the Igm falls under the Cardiolipin test? From what I can see, I have never had the Beta2Glycoprotein test. I will inquire about his when I see my Rheumatologist next week. I have the same one that I have had for years still- we do not have many here on Vancouver Island.

Thanks again for all the support.

JOEW profile image
JOEW in reply to Lure2

Hi kerstin,

Can you help me understand the effects/ symptoms ( if any) of elevated PTT ( mine has ranged from 36-118). I most often hear people on the forum speak about side effects of their INR (mine is always normal at 1.1) but not about PTT. Really trying to get to the bottom of the dizziness and just waiting on some more results. I will ask for the tests you recommend when I see my rheumatologist this week.

Thanks again

So you have tested positive for Lupus Anticoagulant earlier? LA is not the illness Lupus but the antibody for APS. It has nothing to do with Lupus!

Yes we test Cardiolipin IgG.

Read on the Charity site here. A lot of info. hughes-syndrome.org

You need a SPECIALIST!!


In what way are you anticoagulated and what does your APS-Specialist say about the whole thing?

Kerstin in Stockholm

Thanks for the reply. In did have a 24 hour urine but that was looking at just potassium levels I think. I have been having abnormal Ecgs though (left bundle branch block) but they do not seem concerned with that.

So hard to tease everything a part. I was also diagnosed with epilepsy 15 years ago but have not taken any medication for that in 8 years. Hopefully we can figure out something soon. Hard to work and parent little ones when feeling so lousy!

What is your therapeutic INR-level?


In 2014 I had a year almost to the day of dizziness. They reckoned it was the crystals in my ears out of whack and I had all sorts of physio to reset them and nothing worked. I had acupuncture and that didn't work. My INR was within range of 3 to 3.5. Nothing worked to fix it but it eventually just went and I only sometimes get it now.

APLS can affect any part of our body so I think can present in a lot of weird and baffling ways.

I am talking about your lightheadedness, Vertigo and "passing out"-feeling not your pain.

I also wonder how often you test your INR because an INR of 2.0 is far too low if you have neurological issues. This is a strange illness and I have read that prof Hughes himself has been surprised sometimes how many symptoms that disappear when anticoagulation is started.

Could you ask for a higher INR and see how it works. When I have an INR below 3.0 I must take a Fragmin-shot.


When you exercise your INR goes DOWN not up (I read in those papers we got when we learned about selftesting). The high bloodpressure can be a symptom of APS. I had that and now I have Pulmonary Hypertension caused by APS. My bloodpressure went to normal when I started Warfarin at the right level.

12 weeks apart for testing your INR is not acceptable!

You must do something about your anticoagulation!! I do not think your Specialist understands what is wrong with you. Not good!


Hi everyone and a belated happy New year to you all ...

I haven't posted on here for a while but I do read the comments and I am interested in other peoples experiences. I was particularly interested in the comments made by Dobiedogz as I can relate to to the joint pain INR thing. I feel absolutely ill when my INR is high (over 3) my level is betwen 2-2.5 and I quickly become very dizzy and disorientated above this. I have had so many problems with warfarin and have felt unwell for the past few years since diagnosis of APS in December 2012 and all medications do have side effects but for some people they dont have problems and I acknowledge that. My APS consultant will not try me on anything else until it is licenced for APS and more recently he seems to be only concerned about my liver function, which after an unexplained bout of hepatitis last year has been normal for a year. I have started to feel less positive about my APS after lots of unexplained joint pains, eye problems and a recent bout of cellulitis in my dvt leg which has never been right since the clot in 2012 and subsequent PE's. My APS consultant is quite dismissive of my thoughts about the reasons why I am having problems, he also said that the cellulitis I had was less severe than post thrombotic disorder although my symptoms were exactly the same. I tire of being told what I can and can't eat or drink due to warfarin and after suffering with a cough, fatigue and other symptoms over the Christmas period, I caved in and bought a load of over the counter products designed for "normal" people which alleviated all of my symptoms in a couple of days. My INR dropped to 1.7 but I felt so much better in my self.

My GP practice is great and they see me every week for my INR when its unstable and recognise that lifestyle, etc affects it. I've also noticed that there are lots of differences in the way my APS consultant wants to treat me in comparison to my GP who see me regularly and who are very keen to understand and explain symptoms. Oops sorry just realised this has turned into a moaning session but so be it, I'm sure you all will understand x

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