Sticky Blood-Hughes Syndrome Support
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Has anyone had a stroke and then really and truly believed something occurred in your life, then found out it didnt

I ve just realized this has happened to me twice now it is scary. Now I am worried that other things I thought were true aren't? But how do I know until something occurs and I get set straight/right. This is frightening. Please share if this has happened to you. I am feeling a little crazy.

Someone I worked with in my past, I thought had also worked with me when I had my stroke and it was just revealed to me that this was not correct by this person. I simply said. Ta da di da when we worked at... and she said " we" never worked there together.

I was shocked, embarrassed, them quite humbled. This just occurred today and I am having difficulty getting passed it. She was very kind but I wanted to fall in a hole.

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When I had TIAs or mini-strokes or whatever it was, I also was not properly anticoagulated. I was on baby-Aspirin, my "events" were not seen on any Scans, I had a lot of them and was tripelpositive with high titres.

I had neurological symptoms and my memory was not to be trusted at all. Those years I remember today very vage and if I did not make notes I can today not be sure of what really has happened.

It can be difficult for relatives and friends and mostly to myself to understand. I tell them that I have had a stroke when a thing like that happens and it is people I do not know well. I do not remember places I have been to during those years.

What is important is that you today when anticoagulated you do not have those "blackouts". My memory is not firstclass but I also start to grow old and can blaim it on that which I hate (!)

You are not crazy. Do not get stressed about that!



I have had many "strong" experiences like this. We knew something was neurologically wrong and I was under the care of a neurologist. ( before APS was finally diagnosed as the true source of all evil...) in 2011 I was diagnosed with right temporal lobe epilepsy. Mine are partial complex, so I don't have grand mal. This was confirmed with EEG studies. The first 30 min was suspicious so it went to 72 hour study. I was having thousands ( onset) a day- but most aborted. We know know due to micro clotting .

The temporal lobe epilepsy - partial complex- also causes symptoms very much like this. I've also likely had a TIA in August 2016. My MRI I had done about 3 weeks ago shows clean- no whire spots or any lesions of any kind at all, but I'm well aware that TIA scans may not leave evidence.

I have to wonder, both Kersten and Cindy, if for some reason these symptoms worsen, you might speak to your neurologist about the possibility of partial complex temporal lobe epilepsy. This is the most common region of the brain for Hughes spndrome to present with micro clotting/ temporal lobe seizures according to my neurologist. He emailed me an article Prof. Hughes had published stating this.


I think people who have never had a stroke can have memory problems so it may not even be related. I've been lucky with my strokes as my brain hasn't really suffered, my memory is excellent, shame about the rest of me.


I'm not sure you all understand... I would have sworn she and I had worked together here. I " remembered" it!


If it continues once the INR is at target range... that's far more concerning. Then you might strongly consider speaking to your neurologist about alternative causes like perhaps partial complex seizures? ? Like I've experienced? Only a thought if you can't shake the concern.

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Hi Kelly,

I meant to say that those days when I had neurological symptoms if I then had not made notes i would today not remember what happened those years. Today my memory is so much better but must be in range with the INR.



Yes, I'm so glad to hear that! I had assumed you were no longer experiencing problems. It is such a strange feeling when we realize that what we have perceived as "reality" may in fact might not have been, and therefore, how can we trust the truth of the day to day reality in which we are currently living? I have told my neurologist it's like ,"a glitch in the matrix" if you are familiar with those very famous films! It's extremely discombobulating for the intellect and spirit to reconcile. But now that there is an explaination and a " fix" - it does / should help tremendously.

Living for brief moments in "the Matrix" with no idea why or no plan of how to fix the problem was THE WORST! Anticonvulsants did help some, but not completely for me. Tremendous hope now!

Now Kersten- we have to get my INR up! It's only at 2.3!!!!! It's less now than when I left hospital in November with DVT.

Bad news. My team here is not comfortable with my INR at the range the London Lupus center has suggested. ( 3.5)

They have set it here at 3, ( close to 3 is what they say...????) despite advice from the Hughes team. Also, they do not want to prescribe fragmin. ( London advised injections if I drop below 2.5- which is basically every day.)

They are afraid of a brain bleed. So migraines, ear ringing, very dizzy when I lay down and turn to right side, or get out of bed. ( probable micro clots in ear- I told them about this as a common complication of APS and they said yes- probably- but INR raised will fix it - and soon it will be at 2.5-3.0 so don't worry!

I see a new hematologist today- hopefully he will be comfortable. ( currently on 15 mg warfarin 4 days a week and 12 the other 3)


I think as the brain recovers there can be some muddling and on a bad day, but hey some people are like this and have none of our medical problems, please don't worry about it. MaryF


Thanks for everyone's replies, Cindy


Have had this more than once, I think, but before stroke and not obviously more prone to happening after stroke. I have remembered ex-colleagues as being in meetings they couldn't possibly have been in because they didn't work for that company. On one occasion I told my wife I remembered her being with me at a certain place where, according to her, she had never been. Figured out it must have been an earlier trip with an ex. That didn't go down especially well - which is why I remember the incident...

I think I have done similar things before and since, and my wife might admit (if she were pushed, and in a good mood) that she has done it to me, remembering me being on trips with the kids which I didn't go on.

I think this is an artifact of the ways our brains and memories work as we age and try to fit more memory into the same brain. I don't think we store memories like video recordings and throw out the old ones to make space for new, more like features of old memories are merged with new and eventually old memories lose their accuracy and clarity, but where clarity is gone our brains fill in from fresher memories - but that may mean you remember someone who wasn't there or someone wearing the clothes they usually did rather than the clothes they actually did.

My first neurologist told me that often the biggest loss after stroke is confidence, a few weeks after I didn't really believe him, two+ years later I definitely do.

I've had full neuropsych work up because I thought I had short-term memory issues and other stuff after stroke (TIA) - result, discharged as all tests well above average (and also pointed out stroke was in wrong area of the brain). Am I as good as I was? - unknown, can never be known as I never had similar tests before, but I have lost confidence that I am as good as I was.

Similarly I am sometimes clumsy (which I _was_ during the TIA, so it was that area of brain), instinctively I think it is the stroke, but actually I was clumsy sometimes before and I have no idea how often because I never recorded it. I have less confidence with a lot of physical things, e.g. doing the washing up, so I no longer do things instinctively the way I used to and try new/safer ways, which then don't work so I break things, then I blame the stroke and lose even more confidence...

I am now hyper-sensitive to all neuro stuff (I bet you are too) and first instinct is to blame anything I notice on the stroke but if I am being rational cold analytic and honest, I have absolutely no idea how often the same things occurred before the stroke.

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Thanks for the input. I have had neuropsyche testing also, told same as you, above avg...

My scans showed however " it looked like a shotgun went off in my head"😕. So, I can't say which if any particular area.

Yes, I am hyper critical of myself! Everyone tells me I shouldn't be because I am so much better than I was initially after the stroke, when I was stuck in a w/c. You know what they say though: it's easier to believe the negative then the positive.

That being said, I really do try to stay positive, but it isn't easy sometimes. Thanks for responding


I'm just old enough to remember those Virginia slims cigarette commercials from the '70's:

"You've come a long way, baby!"

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I have never had stroke but many TIA's. However, over the years, have had instances where I thought 'something' happened but was embarrassed to find out it had not. I have just thought that 'I must have dreamed it.' I've never met someone else in this situation before until you! Nancy

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