Hi . Has anyone had or been diagnosed as having a stroke but have not been given a reason for it?
July 2021 I woke up , made a coffee and my left eye started blinking on & off then stayed at off. I’m not one to usually make a fuss, so ignored it as I had a regular eye hospital appointment in a few days. Over the next few days I was confused, couldn’t understand people speaking & kept bumping into things. At the eye appointment I mentioned to the consultant that can’t see out of my left eye & keep bumping into things. He checked out my eyes then said he was sending me for an MRI but didn’t say why. Ok I said & left the hospital, tried to cross the road & walked out into traffic . Again as I’m not one to make a fuss I just thought to myself that was a weird thing to do.
I had my MRI 2 days later where they told me I had had a stroke. My initial thought was how? I had none of the FAST symptoms but was told I had to stay in hospital to be check out & was sent home that evening. All was well until 3 weeks later I had my first seizure and spent the next 2 weeks in hospital unable to move or speak. I was also diagnosed with Miller Fisher syndrome. I spent the next few months at home having rehab etc until I was fit to go back to work in November on a phased in basis. Just before Xmas I didn’t feel well but ignored it, but on 27th December I phoned the GP who sent me back to the hospital where I stayed until 3rd January with a 2nd bleed. I was told I may have a cavernoma & they will continue to investigate. I was referred to a neurosurgeon & the stroke clinic signed me off. The neurosurgeon says he doesn’t think it is a cavernoma but doesn’t know what caused the strokes. Last month I had a headache for 4 days straight & my GP sent me back to the hospital where they did a CT scan which found no bleed. The neurosurgeon sent me for another MRI a few weeks ago which I’m still waiting for the results.
I take my anti seizure medication, pain medication & there isn’t one day I don’t feel right but I battle on going to work & raising my son ( I’m a single parent). 18 months down the line I stilll have pain in my limbs, headaches, nerve damage in one eye & ear yet no explanation as to why this has happened.
Hi Michelle-- Firstly, I am not a doctor . You didn’t say whether you had an ischemic stroke (one caused by a clot) or a hemorrhagic stroke (one caused by a bleed). I had an ischemic stroke 4 years ago. They told me in the hospital that as soon as I got out, I needed to see my GP, a neurologist, and a cardiologist, which I did during the first week or so. The cardiologist did a complete study of my heart. He picked up that I had afib (a common cause of ischemic stroke)-of which I was completely unaware. He put me on medication to control the afib and a blood thinner, as well as blood pressure medication–all to prevent future strokes. It’s important to see whatever specialists are necessary to try to get at the root cause of the stroke if possible. That’s the only info I can offer. Perhaps others on this website will have more. I’ll remember you in my prayers tonight. Jeanne
@michelle.active sounds like you’ve been through it a bit. I’m no expert but I know sometimes they can’t find a cause for a stroke happening. It’s frustrating when that’s the case as we all like answers and like to know if we can do anything to stop it happening again. I had a dissected carotid artery which they say caused my stroke but no cause for the dissection has ever been found.
Have you had any heart tests done to see if that could be a cause? Make sure you’re getting or have had all the relevant tests.
Wishing you all the best.
Hi, I had 2 hemorrhagic strokes. I do take high blood pressure medication but my blood pressure was ruled out as it was high enough to cause the bleeds. Thanks for your reply.
This MRI was for my neck & back. Hopefully I’ll find out more when the results come in. It’s strange saying hopefully, as part of me doesn’t want them to find anything & another part of me wants them to, to make sense of it all. Thanks for your reply.
Hi Michelle,
They sometimes can’t find any reason for a stroke. After I had mine (clot) they ran all the routine heart and sleep tests, but couldn’t find anything. I had no family history of stroke and a recent health check at the surgery showed no problem with blood pressure and cholesterol levels. It was stressful at first, not knowing whether I might have another stroke, but 8 years+ down the line I keep taking the tablets and I hardly think about recurrence any more.
Hi @michelle.active sorry to hear you’ve been through so much. While in hospital my consultant thought I probably had a tiny whole in my heart that had caused the stroke, there’s a proper medical name but I forget it, he said it was common in younger people with strokes. Once home I went for cardiology tests, everything came back clear. I’ve never been given a definite reason why it happened, I was very stressed at the time so it’s really been put down to that. I hope you find some answers and stay well
Welcome Michelle
I too don’t know why I had a stroke. My GP thinks I may have cricked my back while driving (well I definitely did do that and saw her colleage about the pain) but if it did release a clot I don’t know where. I also had a health check just before the stroke and nothing was discovered. I had heart tests afterwards including tests for AFIB and fortunately I don’t have that either (just as well as it took over a year to test for it) so who knows. I still worry about a recurrence a bit, but there’s really not much point. I take my medication (blood thinner, statin and PPI) and try to take each day as it comes
I had a TIA at the end of August; no obvious reason why, no blood clots, high blood pressure etc but I got the impression that’s quite common. I have an appointment for an EEG at the end of the week although, to the best of my knowledge, I don’t have any heart problems.
I’m going back to work next week - it seemed like a good idea when I suggested it - fortunately on a phased return and then Christmas hols - so we’ll see how it goes.
I’m not sure I ever expected an explanation, a mix of knowing the family history and really not having much expectation from the medical profession generally (that isn’t meant to be as catty as it sounds).
Hi, after my stroke I too went back to work on a phased in basis in November last year. Unfortunately for me I had a 2nd bleed over Xmas’ probably over did it although only part time then. I’ve been back to work full time as of Aril this year & sometimes it’s hard, I feel tired & physically weak on occasions. It’s really frustrating not knowing the cause and wonder whether it will happen again. Take things easy when you go back to work & hope all goes well.
@michelle.active Hi, i too have not had a cause for my stroke (clot). I am 45 and just rolled over in bed one night and that was it… I have since had MRI/CT/Bubbles test/2 X Echocardiograms and countless bloodtests - all coming back clear!! Its been 7 months now. At first i was concerned that it will happen again - but positive thinking really is key here. I just believe that it was just one of those things.
Im pretty much back to normal (which i am astounded by) - and i may be back driving trains next month too!!! Please try not to focus on the past - but what lies ahead…I sometimes wonder if i wouldve preferred to have a definitive reason - but ive decided that its not going to change how i feel now or in the future.
Dont let there not being a reason to get you down… Easy to say, hard to do… but this forum is fantastic for support. I hope you improve very soon
Hi Michelle
I had a stroke end of August. Had ecg heart doppler but no appt with stroke team until march next year! So far no cause found for my stroke. Apparently you can be very unlucky with a one off bit of clag in your blood. Looking forward i now consider myself extremely lucky with the outcome as speach is back more or less and mobility fine. Just got headaches which seem to be reducing over time. As someone said to me " you cant drive a car just looking in rear view mirror… you crash!" So im trying not to look in my life rear view mirror too much🙂
Hi Michelle and Adam – The cardiologist did all kinds of cardiograms on me and found nothing. But when I wore a heart monitor for a while, it picked up afib. Afib can be hard to find because it comes and goes. Some folks wear a monitor for a long time, before it is found. My afib was found after a couple of days. Afib is one or the main causes of ischemic stroke (clot). I was put on medicine to prevent afib, and also blood thinners. Jeanne
Hi, I had my stroke in June this year and to date they are still investigating the cause. I have been referred to Cardiology and to date have had tk wear a 7 day monitor and a have had Bubble Echo Cardiogram but nothing has been found to explain the stroke. On Weds I am having a Reveal loop recorder fitted to provide long term 24/7 monitoring of my heart. Its difficult not knowing the reason for a stroke. As my Consultant said after my release from hospital" the good news is the tests are clear, but the bad news is we don’t know what caused your stroke and need to keep looking".
. Again as I’m not one to make a fuss I just thought to myself that was a weird thing to do.
Jeanne