Mini strokes in SLE

[LalSD]

Hi everyone, hope you are enjoying your Sunday. A quick question.

I have been OK with SLE and in fact lately quite stable with little pain. Its almost as if I am tired but not much to report. This is great.

However I have these mini strokes all together 9 times since the age of 16. In the last 4 years, 5 of them. Doctors can't not relate but have been diagnosed when I was 26 with TIA and advised aspirin and some other med which I can't remember. My 26 year old is different and I was not aware I had SLE (I am almost 51 now).

So I don't know what to do. Stroke clinic says I don't fit in the mini strokes, which I am certain they are. The typical pattern of long winded diagnosis process, I spouse. I can't take aspirin as it hurts my stomach and have been on it long time. I drink plenty water (which I rarely feel thirsty). Queen Square Stroke clinic is great for those who has visible stroke signs. But for me they are not effective. I am also not your average patient.

The problem is before these episodes, my watch gives signals that my heart rate is below 50. And it is consistently around 50 for sometime, prior to the events. Then I have a visual problem where one side of objects is dark grey (right side). I lose perifiral vision, followed by numbness in my right arm below elbow, numbness in the right side of my face, nose and lips, difficulty speaking but can remember things, just can't speak and slurring of speech at times. At that point, I take a large dose of aspirin (so far have been carrying them with me), and memory effected and I train it back to remembering things. I believe I had one in my sleep in June and three weeks ago in the office.

Doctors did MRI and said my brain is not effected. Ia m afraid I will have a major stroke, last one being the 9th times since the age of 16.

I don't want to say doctors are useless, but few can be. In the worst case, I will fly to home country but I don't want to take a long flight, given the current blood circulation problems.

I know I have thick blood and registered at Royal Free for Lupus at the time which was confirmed. But this doctor did not even believe me and said we don't have your records for your SLE. Wow!.

My heart rate falling is a concern. Any advise is much appriciated.

Thank you very much in advance and kindly note I will be able to reply later today, not immediately if anyone replies L xx

[Dogsaremybestfriend]

Hello L, nice to meet you. I don't have any advice for you, but i will say that with a diagnosis of SLE, you may have CNS involvement. The mini strokes are a symptom of that. Is your Lupus well controlled? That would be the first thing I would monitor. CNS Lupus can have many symptoms and yours inparticular. I can definitely understand your fear of a major stroke. Talk to your rheumatologist. They do have a blood test more specific to this Lupus. Good luck and let us know how things go.

[LalSD in reply to Dogsaremybestfriend]

Thank you very much for your reply. Much appreciated. I have been using alka- seltzer in terms of aspirin to prevent them but they are becoming more prominent and often and cause stomach problems and same goes for aspirin. I will see a consultant in November and will follow it up with them. Thank you very much for your kind reply. L

[Fitzc12]

Hi. With the heart rate dropping it may be a cardiac cause. Have you had heart tests done in last few years? Or spoken to a cardiologist?

[LalSD]

Thank you for your reply Fitzc. Yes I am mindful that the drop in rate might cause the lack of oxygen and trigger a stroke or related outcome. I have an appointment with a Cardiology in Nov as well. Both the comments make sense. Thank you again. Bydicardia was mentioned at the GP.

[dg70]

Interesting. I didn't measure my heart rate when it happened but recently I had several migraines in a day and I lost the ability to speak but I could understand. I spoke to someone a couple of days later and they told me to ring the gp straight away in case of stroke. I got fully checked out the next day in the stroke clinic but nothing showed, even had a brain scan and doppler on the neck. It was probably too long to tell so they put it down to migraine complications. I think SLE and minor strokes are more common than you think. My friend had SLE and had what seemed like strokes for a few years on and off, she'd be hospitalised but no evidence found. unfortunately she did get caught by a major stroke and hate to say it that was it. I don't know if there is any research via Lupus UK into this happening and how common it is to have no particular evidence afterwards. I will now take my blood pressure when it happens again. Unfortunately I have had a brain haemorrhage in the past so that's in the mix with me too. I hope you can find a route to go down re. stroke as it's not something to be ignored in my experience. Unfortunately our bodies are like a war zone so anything can happen out of the blue at any time and you just don't know the damage you are carrying around with you. Take care and keep seeking answers, anything out of the ordinary needs a follow up.

[LalSD in reply to dg70]

Thank you. This is exactly what's happening. Small strokes and I take large dose of aspirin. But almost know that unless I get help, I am heading for a major stroke. They are too close apart and I never had a migrane and they initially thought that. People don't get 9 migranes in 50 years. I will fly to a specialist overseas. Your note put things in perspective.

Thank you.

[dg70]

I know not to ignore any signs of stroke now, my Lupus group leader has taught me that and losing my friend before I knew anything about Lupus is a further warning. I did ignore what could have been a stroke and now I definitely won't. I had a mini stroke when I had a brain angiogram but it only lasted a minute or two, I should have been more aware about it recently. We live and learn. Go get yourself checked where you feel happy with the medical care. Better to be safe than sorry. Hope all goes well.

[DogHospiceMom]

I was diagnosed with chronic strokes several years ago. In addition to Lupus and Sjogrens, I also have MTHFR. This is a genetic marker and affects people in different ways. My MTHFR mutation inhibits me from metabolizing B vitamins. B vitamins take homocysteine out of your blood stream and converts it to healthy new cells. However, if you don’t metabolize B vitamins, the homocysteine builds up in your bloodstream and causes strokes, blood clots and heart disease. I take a supplement called Homocysteine Supreme as well as vitamin B supplements that are methylated. Methlycobalimine is also a supplement that helps.

[LalSD in reply to DogHospiceMom]

Thank you very much for this information. I think I will add vitamin B to my recovery and mention to my consultant.

[Wiley1]

Hi I’ve just seen your post. I have lupus and APS, I experienced similar issues and was initially told they were mini strokes, however nothing showed up on brain scans. Eventually I was diagnosed with hemiplegic migraines possibly linked to antiphospholipid syndrome. The symptoms of HM mimic a stroke I get slurred speech , numbness down one side of my body and visual disturbances. It might be worth seeing a neurologist to see if this could be what you are experiencing.

[sabrinapwalker]

Hello! I saw your posting and had to respond as I’ve experienced something very similar for years and finally got to the bottom of it. Two of my primary doctors thought I was having TIA/mini strokes. These episodes would come out of the blue, leave me lethargic, experiencing impaired vision and numbness down my body. It’s incredibly hard to speak, read or form a sentence during it and although I’m lucid, it’s tough for information to register to me. It would usually pass between 30 mins to an hour and afterwards my head would be really sore. All brain scans looked normal, no damage. I’m located in the states and was finally seen by a great neurologist. She told me with certainty that it’s migraine aura, and that the likelihood that a stroke would occur every single time in the same place, leaving me with the same symptoms and no serious damage, is near impossible. I now have a medication I’m supposed to take at the onset of my episodes, and it apparently shortens the length and strength of things. Thankfully I haven’t had to take it yet, but am relieved to have a better understanding of what’s happening. I hope this helps with your search or at least brings you some solace that you’re not alone. I understand how scary it is to experience and am sending you all the best as you look for answers!