I woke up a week Tuesday ago and lost my sight in my left eye... When talking a while later to my partner he asked why I was sluring my words and wasn't making any sence! Four days later it hit me that I may of had a stroke? I told my partner that I lost my sight the same day he said I was talking funny and not making any sence! It then hit me again that I have had a strange sensation down the left side of my body! I called my GP and was told to go straight in to see her. By the end if her examination she called an ambulance and within an hour I had had loads of tests inc a brain scan. ( CT) no stroke but possibly a TIA? I am not waiting to see an neurologist and will prob have to have a MRI. I had two heart attacks in April and just been told I have lupus and Hughes! Has anyone else had heart attacks or strokes due to Hughes? Many thanks. Jo :0)
TIA (mini stroke) : I woke up a week... - Hughes Syndrome A...
TIA (mini stroke)
Hi Jo
Yes, I have had TIAs and one of the members of our patient group her in the Bristol/bath Area has had a stroke and a heart attack due to APS.
Who is managing your APS treatment and what medication are you on?
Dave
Hi dave,
Been on warfarin for about a month now. I am seen by heamotolagist doc Evens in canterbury kent, she is listed on your recommend list which is good! I'm 37 and this has all come out of the blue! Tho there is a lot of blood clotting problems with my parents and grandparents I expected something later in life not now!! Jo :0)
Hi Jo
I'm glad that you have a good consultant.
Many people with APS do seem to need an INR nearer 4.0. When I was on Warfarin I cetrainly knew when my INR dropped bellow 3.5 and below 3.3 I had to give myself Fragmin injections until my INR was back at 4.0. I'm now off Warfarin and on Fragmin full time.
I think people tend to push their INR up gradually until they find a level which keeps them reasonably symptom free.
Best wishes.
Dave
Hi there, I am glad your GP moved so swiftly to help, I hope your actual consultant can see you sooner rather than later, please do keep a list of exactly what happened, you are certainly not the only member on here with the dual diagnosis and also the heart attacks as well a stroke symptoms. You may need your medications tweaked a bit. Glad you are seeing somebody recommended off the list. Let us know what they say. MaryF
Hi Mary f , the day this all happened was the same day I had my INR checked at the hospital and it was 2.9. My heamotolagist did say on my first visit 4 weeks ago that my INR my need to be higher between 3-4. I've read on here a few times that people saying that they feel better with it higher? Why is that? I have another app on the 23rd July and it couldn't come round quick enough for me. Just would like some ans!! Jo :0)
I have had many TIA's and I have Hughes/ APLS. It is almost always my left side that is affected. My left side of my face goes numb, sometimes my left arm. It has affected my memory also. It's quite scary cause you never know if the TIA will become a full blown stroke. I have had them for 10 years.
Hi, You are saying you have had TIAs for 10 years. Who is managing you APS?
I had TIAs but they were gone when I was enough anticoagulated.
Best wishes from Kerstin in Stockholm
They had a lot of trouble getting my anticoagulant where it needed to be to stop them. I have to keep my INR. Between 3.5 and 4.0 if the level falls below 3.5 then I start having them again. I've been much better lately. Best of luck to you from Pamela in Palm Harbor, Florida
I have had numerous TIAs and a small stroke 3 years ago. All of them affected my left side. Inr was therapeutic and not exactly sure what caused it. Apart from the obvious. I did have a hole in my heart as well (PFO) and an aneurysm (asa) they said the APS and those combined contributed. The PFO was closed and the aneurysm was removed 6 weeks after my stroke. I since have had TIAs again and a couple of odd episodes. Try to keep my inr 3-4 now and feel better in general. Although I am going through a "flare" right now and feeling rough with lots of muscle and joint pain. Brain fog and had an incident tonight where for a few seconds I wasn't sure where I was while in the supermarket. Then got very confused over my pin #. I used the total of my grocery bill as my pin!!! Got a dull headache and numbness that keeps coming and going
Hope you have got an APS-doctor that understands this illness. You say you try to keep your INR 3-4. What is your therapeutic range?
I selftest and have had a lot of TIAs before warfarin but as i selftest I have noticed how the INR changes in only two days sometimes.
If you cannot have a selftesting machine I suggest you ask you APS-doctor to be tested more often.
Best wishes from Kerstin in Stockholm
Hi had a severe heart attack before being anti coagulated with Warfarin / Clexane my INR has to be between 3-4 if it goes lower than 3.0 I have Clexane injections that I can give myself, I have my own anticoagulant machine which is very reassuring.
Unfortunately they are so expensive.
Since being on Warfarin even after my heart attack, which wasn't painful I am no long breathless.
My brain has been damaged as I have cerebral APS too, that was before I went on Warfarin, I think if I had been on it earlier it wouldn't have been so bad.
But everyone is different
Wishing you well
You asked why people often feel better at a higher INR? It's complicated. We don't entirely understand all the mechanisms that cause our blood to clot too much. But some of us have blood that's sludgier then others. So those patients need greater coagulation -- or a different coagulation.
And remember: an INR is a blood test preformed outside the body -- away from many of the systems and triggers that may be active in exacerbating a clot.
There is still so much that is not known. Why, for example, do I do ,just fine on warfarin, but others here must take an injectible? ? ? ?
Hi, Sorry about your adventures with APS!
I had my right side of the body numb (even the right side of my tongue) and I could not see on my right eye. The eye came later on.
I Always talk about a good book about this illness. The author has had similar symtoms like you have had. Also a heartattack!
The book is called: "Sticky Blood Explained" by Kay Thackray. It is in pocket and not expensive and availabale for sale on Hughes Syndrome Foundation Charity website.
Best wishes to you from Kerstin in Stockholm
I had a stroke in March and just my speech was affected which is slowly returning to normal I hope. I was told I had a stroke. I was diagnosed with APS. I thought a TIA was a stroke. Have to clarify on my next visit to my Rheumatologist in Sept or my Neuro in November. Glad you got right to the hospital. APS is scary. I think they understand APS and INR levels better in the UK. Im in the US and they have my desired INR levels at 2-3. I was told my stroke was due to my APS which was diagnosed after my stroke. All the best to you.
Yes 2 strokes in 2 years from sticky blood. I was told by my specialist no such thing as a mini stroke??? But I'm just a minion and know nothing. X
Generally, a TIA is defined as a brain clot which may produce noticible neural deficits, but which go away quickly and completely. In other words, the clots are short lived and produce no damage. A full blown stroke is the scary, multi-symptom event which often kills and otherwise lands a patient in a hospital for emergency treatment and a long rehab process. A mini stroke is an event somewhere betweeen those 2extremes. But both stroke and mini stroke involve clear, demonstrable damage in the form of leisons founds on an MRI, CT or some such scan.
But often the lines among these 3 diagnoses is in the opinion of the doctor. In my case, there were 3specialists looking at the same data; one said TIA and 2said mini strokes. --and one of those 2said there were so many leisons on my scan that he was surprised to see me walking in a straight line, standing on one foot, talking normally and finishing the " To be or not to be" soliloquy. He ( and he was the neurologist , and on this forum neurologists are often found to be APS symptom skeptics!) was the doctor who ordered follow up MRIs 3months and 1year after I started warfarin to make sure the leisons were getting smaller, not larger.( they were!)
It is important to consult with a doctor who has been around the block, so to speak, with APS as some of us, ( for reasons unknown to me, and perhaps unknown to everyone at this point,) do better on injectibles, or have problems achieving a stable INR on warfarin no matter how careful they are with the diet.
Coping with the details of this disease is intimidating at first, but we humans are adaptable. I predict, ( and hope,) that you will hit your maintanance stride.
Yes. I've had two TIA's and 1 stroke. Luckily have only been left with slight left sided weakness, thankfully. The most concerning thing was I was on warfarin at the time, I'm now on clexane and haven't had another - very frightening and horrible. I have lupus and Hughes plus other haematological conditions. Waiting to see cardio at St Thomas after an ECG picked up some abnormalities with my rhythm, following severe anaemia.
Thank you all for your responses it's much appreciated I'm learning all the time from others who have lived with this condition a lot longer then I have. I have sticky blood explained on order! Looking forward to reading it! thanks again all! Jo :0)
Some of your symptoms are all too familiar. I have had Hughes for over 40 years and prior to 2009 had a stroke (in an airplane) and multiple TIAs over the years. My last lot were thoroughly investigated by a stroke specialist who was able to tell me that I had experienced three TIAs on one particular day - such is the capability of all the diagnosis procedures available these days. He also suspected a hole in the heart, and was proven to be correct. I am told that about 20% of the population can have such a heart defect and are never be affected by it. However, it can be a source of clots for those with Hughes. Mine was closed at Bristol heart unit by a procedure in which they insert a device though an artery and , in very basic terms, put hi-tech washers either side of the hole and close it. I had an INR of 3.3 at the time of the TIA's, I haven't had a TIA since the closure. You might like to mention excluding a hole in the heart (patent foramen ovale/PFO) to your people if they think you have had a few TIAs.
Hope your ok now, I've had tias & they are scary & leave you confused....more than usual!
Usually if my inr is above 3 I don't have them often.
Look after yourself, sue
Hello Jo. When I was in my early twenties, I had an episode of loss of sight in one eye, difficulty with swallowing, and difficulty holding items in my hand. I underwent various electro-diagnostic tests which all turned out normal. However, the MRI of my head showed a dime-sized infarct (presumably resulting from a temporary loss of blood to that portion of my brain). Several years later, I was diagnosed with Hughes. I have been controlling it well with Warfarin for close to twenty years now.
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