For some time now I have been getting to many headaches they will be very piercing and make me quite nauseous enough that I just cant complete any activities and end up going to sleep. No sort of pain relief works for me I have tried them. It has even lasted two weeks without giving me a break that was awful and still didn't respond to any pain relief I could provide. On the other hand I have also come across times when my memory is not bloody working right losing my marbles type of thing forgetting simple things misplacing things losing bank cards medical card to the point iv handed them to my mum to look after, I forget to take tablets unless someone reminds me, put food in the oven with no gas on until I take it out and see its still frozen. Also just yesterday I got tired like us lupies do so I had a lay down during that time I got really dizzy where it felt like the room was spinning I got up to get to my mum and seemed to stumble backwards like I couldn't control my balance and landed on my back crying for my mum to come (owwww).
However yesterday was my follow up outpatient appointment to st Thomas hospital lupus clinic and I only explained about my headaches and memory loss and there said they wasn't stressing there selves out with this as its nothing that didn't explain what may be causing it. However did give me the option of a brain scan MRI to reassure me, now I am (beeeeep) myself if there is anything that could possibly be wrong after all these symptoms they join together to seem like something is wrong with me bloody brain I also have Hughes syndrome the blood clotting disorder could this be connected at all. Has anyone on here been like myself and what was the outcome if not what can I expect any ideas of what could be causing it. Thanks for reading
P.S this has been posted on the lupus uk page to I have put it here as others with Hughes syndrome may relate to me
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Danielle2419
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I think many of us relate to the dizziness, brain fog, forgetting things and constant headaches. I suspect many of us have also had all sorts of tests that may or may not have shown anything.
I have had all of these things happen at various times, the headaches being the most common. Constant 24/7 headaches for the last 3 years that nothing shifts. So far scans have shown nothing to explain them and I suspect they will be just one of those things I will have to put up with.
Some here find that when their INR is adjusted they can be headache free but that doesn't work for everyone.
Metoyou, all of the symptoms you describe are common in Hughes syndrome and importantly they are treatable. I had all of the symptoms you describe including status migrainosus for two years before being diagnosed with Hughes syndrome. Now on heparin and plavix (an anti platelet agent), I never have any of those symptoms. You are lucky to be in London where there are many highly experienced APS physicians. It doesn't seem, however, that the physician you saw recently at st Thomas' was one of them!
Hi I have had a brain MRI /scan their is nothing to it.
I was given it because I have epilepsy too, I think caused by Hughes syndrome. This was from my local Hospital under my Neurologist who unlike St Thomas didn't know what he was doing.
I respect of the dizziness. I would highly recommend seeing Peter Savundra at The Portland Hospital in London. Peter is a Consultant Audiovestibular Physician and I was sent to him by Prof Hughes. He is very patient friendly and takes great care and time when he sees you. He explained in precise detail what happens in the ears of APS patients that causes our dizziness, which, in turn, causes other symptoms.
Sympathies for the migraines. I've had them and They. Are. Not. Fun. Mine went away when I went on warfarin. Keep up the physician route. I hope eventually you land on a med that works for you.
But no, you are not alone.. Many of us on this site have experienced some, or all, of the symptoms you describe.
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Can anyone help me understand the test results I have just received?
Could I have hughes syndrome? Help
have you been made a Brain SPECT?
Help - such pain - has anyone else experienced this.
Do I need ongoing consultant support?
