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Sticky Blood-Hughes Syndrome Support
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I'm confused

I think I had a stroke in the night, I woke up needing the loo at 4 am, got up but my right leg wasn't exactly co-operating. Managed to get to the loo and headed back to bed dragging my right leg. Went to get back in bed and ended up on the floor smashing a full length mirror in the process. Dragged myself up and got back into bed. Rang my son who works nights, told him what happened and said I need to go to hospital. He came home, sorted a bag for me and took me off to hospital. I had my Inr tested yesterday and it was 3, today in hospital it was tested twice with a reading of 3.8 and then 4. The stroke team refused the triage nurses request to see me twice as I had none of the fast symptoms, this is my third stroke and never had any fast symptoms so I stood my ground and refused to leave without seeing someone.

I was sent to majors, tbf they did a chest x ray , bloods, urine and eventually a CT, they all came back clear. They called a Neurologist who checked everything again and offered to admit me but said they couldn't do an Mri till Monday and as I already had an Inr of 3.8-4.00 and taking warfarin there was nothing they could do. So after about 7 hours I was sent home on the understanding I would not be alone and I would return on Monday at 8.30am for the Mri.

I'm home, there's no improvement in my mobility and my arm and hand on the right are both affected, tried making myself a drink and spilt it everywhere, really is there no treatment other than carry on with the meds. That's scary cos I was on the meds when it happened so carrying on isn't going to change anything. I don't care what the ct says I know I've had a stroke, it's the same as the last on except the last one affected the left and this one affects the right. So I'm already compromised on the left I don't need it on the right too. So what now wait for it to happen again?

15 Replies

Hi, Was you symptom yesterday like that when you had your stroke before? Were you on Warfarin when you had your other stroke? If so, did you then have the same low INR of 3.0 as you had this time.

It could perhaps been a mini-stroke or perhaps a stroke when you are on an INR of 3.0. I have had symptoms several times when on an INR of 3.2 and even 3.4.

It is good that your INR is higher now. What therapeutic level of INR has your Specialist (do you have one?) put you on?

If you selftest take an extra test before Monday so the INR stays high enough. Myself I have micro-clots and emboli and they are not seen on Scans etc as they are too tiny.

Good that you are going back on Monday for an MRI.

Take care and let us hear how it goes for you!

Best wishes from Kerstin in Stockholm


I'm so sorry you have had this experience again, I know how scary it is. To answer your question about what can be done, well of course that's up to your specialist. From experience I can say that if you have had a clot whilst on warfarin, then the options would be to raise your INR target range, add in an antiplatelet like clopidogrel, or possibly swap to LMWH.

Don't worry too much till Monday as it might be a TIA but even so you must see your specialist soon. Get your son to video your mobility too so you have a record in case things improve.

Let us know how things go.

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I wasn't diagnosed with Aps when I had my previous 2 strokes so wasn't taking anything at that time. My target range is 2.5-3.5 and I try to keep it as close to 3.5 as possible.. The symptoms this time are identical to my second stroke and I'm still struggling with disabilities from that one. This time it's swapped sides so potentially I'll have disabilities on both sides. I think they should have given me something in addition to the Warfarin but they are concerned about bleeding. If my symptoms go untreated till Monday I think they'll be permanent just like last time. I just can't believe they still think if you don't have "fast" symptoms you didn't have a stroke.


The video is a good idea thanx I hadn't thought of that.


You should have a Doctor who is not afraid of bleeding when you go over an INR of 3.5. I feel best at an INR of 4.0 and I selftest.

As prof Hughes often says: "we do not bleed from APS but clot"! We have very thick blood and he also says that we need to be on an INR OVER 3.5 to avoid emboli and clots.

I suggest you work together with a Doctor who is specialized in autoimmun illnesses like APS. Perhaps selftest, if it is possible, as you can follow your INR better or change to (as APsnotFab suggests) LMW Heparin which is easier to handle and as good as Warfarin.



The damage will be permanent by the time I see a specialist.

You can't convince A and E doctors we are not at risk of bleeding.

The stroke team wouldn't even see me as I had no fast symptoms.

It's not a tia there is no improvement but I knew that anyway.

I'm thinking of making a complaint tbh.


You need a Specialist if you are diagnosed with APS. Who diagnosed your APS (Hughes Syndrome)?



What I need is swift treatment not to wait until I have another stroke or it's too late to reverse the damage. If I have a stroke with an Inr of 4 why wouldn't it happen again, you shouldn't be sent home and told to carry on with exactly the same meds, they didn't stop this one so why would they stop another maybe worse one. Clearly it's not just about keeping the Inr in range cos it was and it still happened. I can't go above 4 as I suffer gastric bleeds if I do.


Who diagnosed your APS? Several years ago?



diagnosed with 2 positive tests a year after my 2nd stroke when they finally realised it was not my lifestyle causing the problem. Diagnosed by my Heamotologist as apart from the strokes I had no symptoms, still don't tbh. I've had a few symptoms over the years but once I convinced them to raise my Inr they all disappeared. It's been 4 years since my last stroke almost to the day, and my Inr has never been higher apart from the occasional spike.


How often do you test your INR? Do you selftest? As you have a therapeutic range between an INR of 2.5 - 3.5 you have a too low INR to begin with. You should have an INR between 3.5 - 4.0 as you still get strokes. I understand that they are afraid of gastric bleeds. Have you had that? On what INR?

The INR change from day to day and when you get your stroke you are probably too low in INR at that moment. Do my thoughts make sense to you? I am selftesting every second day and follow my INR all the time. I take a Fragminshot when too low.



Yes it makes sense the gastric bleed was at Inr of 4.2, it doesn't matter if my range is 2.5-3.5 because I try to keep it at 3.5. I haven't been below 3 in years and it mainly 3.5 and above, last week it went over 4 which isn't good for me and as I said the reading at hospital yesterday was taken twice 3.8 and 4.0. No I don't self test, it's never seemed relevant as my readings are so stable.

Sorry typing is difficult I keep having to redo it so it makes sense.


Hi Tucson I hope you understand what Kerstin is saying as she is very experienced with warfarin. If you are continuing to stroke on warfarin then obviously something is not working. At the moment we don't know that has happened and I understand your frustration at having to wait until Monday. Hemiplegic migraines can give very similar symptoms to strokes, for days on end so sometimes its not always the case that you have had a stroke even though it may look and feel that you have. I also understand that its really frustrating that they seem to prioritise signs of FAST and ignore you if you don't have them. I know this because it happened to me when I had a stroke and was told I was having a migraine!

Unfortunately we need to educate people and that sometimes comes down to money. The Stroke Association probably also has limited budgets to get their message out and has to prioritise the most common signs, so unfortunately lesser signs can be missed. Again it then comes down to us to educate about APS and how we can present. We all do our best, including you. Hang on till Monday. You will not have permanent damage by waiting till then I can assure you, the brain has fantastic capabilities to remap, I know that from personal experience. You must remain positive as hard as it is. We are here for you if you need support. Big hug from us all.


I've never had a migraine, but my previous stroke presented in exactly the same fashion, Treatment was delayed for two days and I've been left with disabilities as a result. Yes there were some improvements but they were slight.


Well I knew I was right and the Mri this morning confirmed I have had a stroke on the left hand side of my brain. They wanted to admit me but when I asked what I needed to be an inpatient for they didn't give an answer that even they could justify. I would have accepted being admitted on friday but not today after being left to my own devices for 3 days.

I have another Mri tomorrow morning concentrating on the area of the clot.

The treatment is to continue on the Warfarin for now but I've persuaded them to add 75mg of Aspirin into the mix which they reluctantly agreed to, still banging on about possible bleeds.

As for the damage being permanent or not only time will tell but if the brain remaps in the way you say I wouldn't still be dealing with the disabilities caused by my last stroke of 4 years ago. The treatment needs to be swift not delayed for 3 days.

When the person claiming to have had a stroke presents with the same symptoms as they did 4 years previously when they had a confirmed stroke and hasn't been back and forth with false alarms maybe they should listen to the patient and shelve their preconceived ideas.

I do have a very positive attitude but tbh this latest event has come as a shock as my Inr is in range in fact it was slightly over and I have had no reason to doubt everything wasn't chugging along nicely. Stable Inr and no Symptoms leads you to believe it's being dealt with appropriately. I don't make a fuss but when I know I'm right I stand my ground. It would have made life easier all round if the stroke team who should know better had agreed to see me on Friday morning rather than leaving me all weekend.


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