I’m hoping someone has advice for me. I had a mini stroke on Monday. Tuesday I was in hospital for tests, and on Friday I go to a TIA Clinic for more tests. I am triple positive along with all the rest, LA, sjogren’s, hashimoto’s, etc.
I don’t have any residual symptoms, but whatever showed on my hospital tests resulted in this referral to the clinic. The doctor never spoke to me so I had no chance to ask questions.
If you’ve experienced this or you have any advice, I really appreciate it. I don’t know what to ask, what to watch out for, anything. I think I’m just too worried to think.
Thank you so much, Anita
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Hi, I hear your stress and understand. It's the fear of the unknown that knocks are self confidence. And our body throwing in curve balls.In between my 2 strokes, prior to triple positive diagnosis, I had a 3 mth period of multiple tias. Most of the time I was in hospital, frightened and so scared - roll on 25 years I still can't explain what was going on but I'm still here.
Not sure if my story helps but my only advice is stay calm (as much as you can) - write everything down, what your feeling, your questions, our symptoms your, your fears - hopefully you will be able to discuss with your medical team and get some answers.
When the same happened to me I hadn’t been diagnosed or put on Warfarin. If you were diagnosed already and still having TIA’s I reckon your INR (clotting levels) are too low. I’m in the UK. Here we’re told only Warfarin should be used for APS. If you’re not on it maybe you should ask why not and get regular INR checks. Here post TIA the worst thing I found was being medically banned from driving for 30 days each time. Good luck!
I am in UK. Have APS ( negative in blood 6 monthly tests 3 years but still on Rivaroxaban reduced 20 mg to 10mg . They did have a ‘chat’ saying Rivaroxaban was not advised after being on it for 2 years and happy . Reasons were blurry , as widely used in USA. ( I think NHS cost ) I refused to stop , absolutely refused Warfarin . Only had 1 clot years clear . I guess not just the APS but clotting and INR daily Fluctuations . Mandate Warfarin rather than just the APS ?
TIAs can be really scary. I have had a few but each time they have been put down to my INR levels being too low. Like Madmumma says, here in the UK we take warfarin as an anticoagulant and the INR measures effectiveness. It is difficult to maintain a therapeutic level in my case so I am always worried when it is too low (or the risk of bleeding when it is too high). I think taking a list of questions is a great piece of advice and perhaps take someone with you to the appointment who can be your advocate if you tend to forget things. Hoping the appointment goes well.
First I ask: are you on meds for APS? If yes and you still had the stroke, then you need something else. And if on warfarin, you may need a higher dose. These are issues doctors must address.
I had multiple mini strokes. The damage that showed up on my MRIs was down right scary to see! But that was 22 years ago. The strokes stopped when I started warfarin and follow up MRIs taken 1and 2years later have shown most of the damage repaired! The doc, as he showed me the latest MRI, theorized that I kept my brain active, I exercise and/or walk a lot, and I eat vegetable salads every day. I did and I still do.
So I have felt your fear and distress. I know. But if you are on meds to reduce clotting, and you eat right, challenge your brain with reading and puzzles you can fix all or most of the damage!
I can tell you that for me, if any changes need to be made to your anticoagulant, I know you dread ( Absolutely and rightfully so! ) the migraines you had with warfarin.
Take heart that there is a new breakthrough in migraine meds. They are CGRP .
They act in a totally different way. My migraines were debilitating- like yours.
You will need a neurologist. ( with a TIA I think you now have one, or you should have one.)
If you can- go straight to Aimovig injections 140. ( the reason is migraines cause nause/ vomiting- so you can’t loose the warfarin.) use either ubrevly or nurtec ( both are tablets) for abortive break through migraines should one occur.
Or, you could try this same migraine approach with twice daily ( every 12 hours) lovenox injections.
A hematologist can guide you the right way- but with a TIA , it’s possible a change could be needed in your anticoagulant. Just know there is a new hope now for migraines, so I don’t want you feeling despair about that.
Update - apparently I did NOT have a TIA, which is great news. I had several more tests yesterday to check my heart and brain (no PFO, cholesterol okay, no aFib and no high blood pressure and no sign of a TIA on the scans).
I was put on Lipitor generic as a precaution because of the clotting issues.
The neurologist said I most likely had a migraine. He said a TIA would not start out with the shimmering visual manifestation that I had (since that is a stimulation in the brain, I could still see something), as opposed to a TIA where the vision or portion of would gray out or disappear. So seeing anything=“positive”, disappearing=“negative”. I hope I've said that well.
I've been on apixiban for about 6 or 7 years, and a baby aspirin and have done very well on those. The neurologist said this is the best for stroke prevention in my case, with the addition of the statin. I've also been on Aimovig for almost 2 years which has helped the migraines tremendously. Warfarin (for over 10 years) gave me horrendous almost nonstop migraines, with very unstable INR's and endless blood draws, so I am relieved that was not recommended. I'm grateful this alternative is available for me.
I have follow ups to do and a couple more docs to see (opthalmo, my auto immunologist and another radiologist) but all in all, I am very thankful for this news, and very thankful for you all with so much wisdom and advice. Kelly I'm so glad the Aimovig helps you too!
Don’t stress as will make you feel worse. My mantra is: I refuse to think about it right now. Later. With all your autoimmune conditions, your immune can have a ‘glitch ‘. Were you pushing yourself ? Now try to rest , distract yourself with nice things . Eat a healthy treat mine is frozen fruit yoghurt sticks . Good luck rest up and be kind to yourself .
It is important that you are given a specialist with full up to date working knowledge of this condition. Do visit your doctor with symptoms and medical history written out, and if you say which area of the USA, perhaps a new post, you may get localised knowledge from others on here. MaryF
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