Seizure after brain injury

My husband is 36 & 7months on from a traumatic brain injury & a few days ago he had his 1st seizure. I was so un-prepared & just panicked!!!!

I have 3 children 4...7 & 11 & they were screaming as I was ringing for an ambulance. He was foaming at the mouth & turned very blue😰

He's scared this is gonna happen again & right this minute is feeling very strange in himself & worried. Has anyone else experienced this? Is it likely to happen again so soon? So worried xx

26 Replies

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  • I am sure that his doctor or neurologist will put him on some medication to stop these seizures from happening. They are very scary, but don't usually last very long. With my husband, by the time the ambulance arrived he was almost back to normal.

  • I am not surprised you panicked; can you speak to your doctor or nurse who can advise you how you can be prepared if it happens again

  • So sorry to hear this, this must've been so scary & horrible for all of you. Do you have support from Headway & a consultant neuro? As the others have said, there should be some anti drugs. Do hope you can find help & support. It's so very difficult, especially with a young family too xx

  • I have the neuro psychologist coming on tue & they come regular. They've put him on carbamazepine which I'd only just weened him off & he's bin off them 2 weeks. He originally went on the tablets for his agitations as when he gets fixed on something he won't let go xx

  • I understand this as my husband also suffers with rumination & cant let things go.

    Really hope you get the help you need. I'm always here if you need a chat xx

  • Thankyou, I really appreciate that. I'm new to this so I'm struggling to find my way around it at the min🤦‍♀️

    Are you still with your husband? I read a few things but wasn't sure if you worked it out? It's so scary, at times I've not known if I could cope with this for the rest of my life. Sometimes it tears us apart & it's a constant battle. He's had very temper & his sex drive has bin zero which is not like him xx

  • This sounds familiar. No, sadly we are not together anymore. It ripped us apart. We had such an amazing relationship before. Mikey has frontal lobe damage. So he is very different from the man I married. I miss him every single day :( xx

  • That is such a shame😔 so sorry to hear you parted. My partner has frontal lobe damage aswell, it's bin horrendous I'm not gonna lie & until the recent seizure I would say he's 90% the man he was so that's good going after 7months. He was horrible, stressed & didn't seem to give a shit about me or the kids..... however since his seizure 5 days ago he's a lot more loving to us all. I think it scared him half to death. When he had his accident he was unconscious so he didn't have a clue. He only fell down some house stairs whilst having drinks with his mates. He had to be air ambulanced to QMC in Nottingham & had a blood clot the size of a fist removed from his brain & I was told it was 50/50 to wether he was gonna make it or not xx

  • Omg that is terrible. We had a car accident on our honeymoonin Mexico, it was also touch & go for mikey :( they also told me I was pregnant.. now we have a beautiful 4 year old daughter, who is our silver lining. After about 18 months mikey became very dismissive of me & I thought he didn't love me anymore.. it was horrible. Like he had no love anymore, which was the complete opposite from before the accident. I had a breakdown in the end after desperatelytrying to make it work for 3 years :(

    I don't think I'll ever get over what happened to me ..... x

  • It's brought tears to my eyes reading that you still love him & you'll never get over it. I came on this site as I felt no one in my normal life....... (family/friends) NO ONE completely understands how I am feeling or what I go through 24/7. It's so refreshing to hear other people's stories & to know that I'm not alone. Which town do you live in? I'm from skegness xx

  • You're absolutely right... no one understands. You & I understand each other for sure. Thank you. I'm in Poole Dorset. Such a long way from each other :(

  • Omg yes that is a very long way haha, how old are you & your ex husband if u don't mind me asking. You both look quite young. My husband it 36 & im 40..... 3 children.

    Devon (girl 11)

    Marlee (girl 7)

    Hudson (boy 4)

    We've been together 11 years in September & married 8 years this July xx

  • Mikey is 27 & im

    41... we were together for 3 years & married 6 months

    :-(

    It's just so cruel what life has done to us & our families too, I also lost my mum, my rock 2 years ago

    Your children..bless them, how are they? You can email me on daniellef@hotmail.co.uk xx

  • Ok thankyou, Christ you've bin through a tough time. The kids seem ok but you never know, the two older girls are having counseling at school. Oh you do suprise me that we're a similar age I thought u were younger than me 😊

    My email is staceybroom@mail.com

    xx

  • So sorry to hear that Stacey, and I know how terrified I was when my husband had his 1st seizure. He had a SAH and stroke in 2012, and after 5 months in hospital, had the seizure after about 3 days at home. Even though I had been told it might happen, it was terrifying. He went on to have a dozen or so more over a period of about 12 months, until the neurologist finally found the correct medication for him, and, touch wood, has not had another since. Sometimes it does take a little time to get the medication just right, so hang on in there. I found each time that it was less frightening and I knew I just had to talk to him and try to keep calm until he came round, which was sometimes 15 to 20 minutes. It must be so hard when you are young and have children too, very distressing for them. Fingers crossed your husband's seizure was a one off and there will be no repeats. Take care, Molly

  • I've been there. I had my first seizure 9 months post injury and had them reasonably regularly for about three years until a suitable medication was found. If you want or need to chat, just yell....

    Andy

  • I've had 4 seizures over the last 3 years since my TBI in January 2014. Last 2 occurred after 11 mths and a number of opinions suggested they were stress related. Correct medicine for each of us is of course important as is creating a positive, solid mentality. Recommend you & your husband read 'The Secret'. Good luck with it xx

  • Thankyou..... I'll take a look at that & yes he's bin very stressed so that makes sense xx

  • Oh Stacey, I'm so sorry about your husband. It's been 32 years since my first BI in 1985. That was on the right temporal lobe. The epilepsy from that was extremely severe until 1999 when the correct meds were found to control it (almost). I still take them but more. Then I had a subdural haemorrhage on the left lobe. Last week I received results of an MRI scan saying that somehow I've had one on the frontal lobe. I think I've adapted to it now, just needing some support now and again, because I don't get any support from off the state. However, I read healthunlocked every day. Anyway good luck to your husband, and the rest of your family. Dave x

  • That must have been very scary for you and your children. So sorry that happened. My wife had a seizure one night that woke me from sleep (no children as they are all grown on their own). It was definitely a very upsetting experience, feeling very helpless in knowing what to do. I wish you and your children comfort and peace in dealing with this.

  • Unfortunately seizures aren't terribly well understood, it could just be a one off or the start of more to come.

    Everyone has a seizure threshold and generally one seizure isn't diagnosed as Epilepsy unless you have a few, since people do sometimes get seizures for any number of reasons.

  • Sorry to hear about this but I would just mention one possibility that is easily tested/ruled out. My neurologist totally missed it. My TBI lead to me not breathing enough (Central Alveolar Hypoventilation). It was only when a new GP referred me to a Respiratory Consultant that I was sent home with a little gadget with a finger clip that measured my blood oxygen level for 24 housr and showed how dangerously low it was particularly when asleep. I have now been on oxygen for a couple of years but have had two episodes of fitting/seizures requiring 999 calls. Sadly if it is this and it goes unrecognised brain damage occurs so do get it checked out (it costs nothing compared to an MRI which shows nothing that is not major!).

  • Caroline, I am so pleased to read this. My husband has had three seizures now and I was putting them down to stress but the last one was right out of the blue. I have been noticing recently that he is breathing in a very strange way with quick, shallow breaths. I tell him how to breathe properly but I am afraid he forgets all the time. I shall certainly bring this to the medics attention if it happens again so he can be tested for it.

    Thanks for the information.

  • Oh well get a finger pulse oximeter straight away and slip it on him when he is asleep and at other times and check his blood oxygen. If it falls below 92% saturation he is hypoxemic - mine was down into the 80s and I have permanent brain damage now. So don't delay!

  • Thankyou for your advice & help. I will do xx

  • Thanks Caroline, I'll chat to the doctor about it at our visit this afternoon. What an incredibly useful forum this is!

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