Hi just wondered if anybody has suddenly had a seizure out of nowhere with no warning.

I had the most awful day yesterday,and still can't quite believe what happened.I was driving home,turned into the road we live in and that's the last thing I remember.I had crashed my car into a neighbours parked car and ended up on the pathway.

When I came round was very scared and confused,as I remember nothing about what happened.

Partner had to take me to a&e,after lots of tests they think I had a seizure at the wheel.

Nothing like this has ever happened before,and I felt fine before it happened.

25 Replies

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  • I'm sure I have just read a post on here where someone developed seizures with one of the meds she was on for lupus - they stopped when she stopped the hydroxychloroquine but returned much later.

    I did, here it is:

  • Thank you for replying,I have been taking hydroxychloroquine for 20 years now since I was first diagnosed.

    Never had a problem before,but saying that I have developed allergic reactions over the years to meds I have taken lots of times with no problems.Some have been very severe reactions as well.

  • I know how you feel. In my early days I was getting up to 15 a day.

    It is firmly under control with hydro hollowing. Sorry it has stopped. Working for you.

    Go back to go/consultant urgently.

    Regards Diane

  • Yes, as George says, it could be the medication or something else - which I should have made a bit clearer when I gave the link where she says the seizures stopped initially but returned much later so there was possibly a trigger effect for something else. Either way, you need to get it seen to quickly.

    I don't think you have to notify DVLA unless you have a second within a month or they find a specific cause. I was told at one point not to drive until I had a diagnosis - I hadn't had a seizure, but the doc didn't listen to what I said to her. I notified DVLA and sent my licence back - in fact they told me later that I shouldn't have done so immediately but waited for a month to see if I had "another" before acting. Once you send the licence back to DVLA it is far more complicated to get it back, stopping driving for the month first is far easier.

  • I was told by doctor at hospital last night not to drive for 1 month,or at least until I have seen neurologist next week.

  • That's good - at least you had a doctor who was more aware of the rules. Mine denied all knowledge of anything when I saw her for follow-up - wasn't her place to say anything she claimed!

    Hope it all works out well - it was a very interesting 6 months for me as they lost results and letters I had to have to get my licence back! No wheels meant I couldn't go anywhere as I also had an undiagnosed inflammatory arthritis so couldn't walk.

  • Hi mum-two,

    Sorry to hear about this, you must be shocked. You should go to see your GP and tell them what happened. This might be related to your medication, but equally it might be related to your lupus or completely unrelated.


  • Thank you for replying.My partner spoke to my Lupus consultant and on his advise took me to a&e last night.

    They did a head ct which was all clear,also blood tests.Which the only thing showed was infection,but could be from a problem I've had with my ear for the last 8 weeks.

    I will get an appointment to see neurologist next week for further tests,like brain activity.

    I'm just very shaken up by it all as there was no warning sign anything was going to happen.

    It also doesn't help matters that my immediate next door neighbour stood watching it from her window and did nothing to help.The only thing she did do was take a photo of my car smashed up on the path outside hers so her husband could put it on his Facebook making a joke about it all :-(

  • That's awful, sorry to hear this.

    I hope your appointment goes well next week. It might be a good idea to read our 'LUPUS and the Brain' factsheet as some background information before you go to the appointment. You can find that here: Keep us up to date.


  • Neurologist said pretty much what I knew she would,I can't drive for 6 months.She is arranging a MRI scan just because she said I'm young lol.She doesn't know the cause of it,she said because nobody witnessed it happening so we don't know if I was convulsing or not.She said hopefully it was a one off and won't happen again,but if it does she will have to start me on medication.

  • I'm sorry to hear this mum-two. Do you have a date for the MRI scan yet?

    Keep us up to date.

  • Haven't got a date yet,I will get a letter in the post.

    Will definately let you all know what happens.

  • Yes some years ago I went to an out of hours doctor and the last thing I remember was the doctor taking me in a wheel chair to a and e the next thing I knew I woke in the neurology ward in a different hospital two weeks later . I hadaperntly had two full seizures, have never had another and am on treatment twice a day ..I have no recollection of the seizures and was also told I had probably had a heart attack aswell as seizures which were five minutes apart I still don't believe I had them but it was put down to vascullitis

  • I did have a seizure in the ER that was seen by the doctor. I never have had another one 3 years later. I was in the hospital for 10 days and I do not know to this day why. I also went blind for10 minutes and that never happened again, either. I have weakness in my legs that has gotten worse, and this at least shows up in EMG with weak reflexes. When I have ANAs they are low, so I just never really get an answer, except I'm depressed (even if I am not remotely depressed). Fortunately, since I do get weird neuro symptoms that don't reoccur that at least provides some comfort.

  • I had migraine and general vagness, whilst still at work. I thought was stress. EEG revealed "changes". Diagnosed with migraine/ temporal lobe epilepsy. Since then when my lupus flares and I am fatigued I drop to the ground. I have had mixed advice re driving. I do not go near my car when low. And are now since medication symptom free other than headaches. Lupus medication can have these side affects but mine was pretty hydroxy. Wait for your test results, try not to stress as it definitely increases the risk. Please stay away from the car as frustrating as it can be. As this has now occurred you will be wholly responsible. Good luck.

  • Thank you for your reply,I have been told by hospital no driving for a month at the moment or at least until I have seen neurologist some time next week,and see what they say.

    Hopefully they will get to the bottom of what caused it,just a bit scary at the moment not knowing or incase it happens again.

  • Seizures in any form are scary for you and those around you. If long term they are manageable. I'm many years on now and even my dog knows before me. On the whole still not the worst thing I find about lupus, just sudden and uncontrollable in the beginning. Things get better and neurologists are great.

  • Hi mum-two it is scary. When I had mine I was asleep and and I was in hospital at the time and didn't know why there was blood all over my bed because I bit my tung while I was having my seizure hope yours isn't epilepsy the won't take me off the medication because the consultant said there is a 1 in 3 chance I would have another seizure and I haven't had one for years now good luck xx

  • I believe it's after the first seizure, fits or convulsion that you will need to inform DVLA. Not the second.

  • The doctor at the hospital told me they don't have to inform DVLA after just one seizure,but do if you have another.

    However as my neighbour called police because he didn't know if he should phone an ambulance or not,they said because they attended they do have to inform DVLA.

    I haven't heard anything from them though.

  • I had seizures after all my metabolic were low I was diagnosed with tonic colonic epilepsy I only had 7 seizures altogether that was about 5years ago and only when I was asleep I just had a provisional license and had to hand it back I was banned from driving for 1 year not had one since the 7 and still have to take the medication I was put on hope you are ok

  • I had them a long time ago. I had them in my sleep and about 2 while I was awake. I was told I had epalepsy and I was on tablets for about 14 years. Them I saw a different consultant and he said I didn't have it and took me off the tablets. It was an awful time when I was taking them. I couldn't remember anything and kept losing every job I tried to do. I was so confused all the time.

  • Thank you everybody,I have my appointment with neurologist on 27th this month.

    I really hope I will be able to drive again,it's my little bit of independence as we live in the middle of nowhere.

    The doctor at the hospital said sometimes people have one,but then never have anymore.

    Nothing has happened since,so hoping this is the case with me.

  • Good luck!

  • Neurologist said pretty much what I knew she would,I can't drive for 6 months.She is arranging a MRI scan just because she said I'm young lol.She doesn't know the cause of it,she said because nobody witnessed it happening so we don't know if I was convulsing or not.She said hopefully it was a one off and won't happen again,but if it does she will have to start me on medication.

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