Epilepsy and Osteoarthritis - how do you cope?

Trish9556
Trish9556 Member Posts: 884
edited 12. Jun 2025, 06:46 in Living with arthritis

Hi all

I was born with Temporal Lobe Epilepsy 69 years ago and throughout my childhood I was given an increasing cocktail of Phenobarbitone, Mysolin, Ospolot, Dexadrine and a host of other drugs to help me through the thousands of grand mal seizures I had. Jump to age 19 and I was admitted to hospital, petrified after being told I had days left to live and being very poorly due to mismanagement of the cocktail of drugs I had been given for 19 years by my medical team.

After being taken off of all those drugs and having to do cold turkey in hospital as they needed to get the drugs out of my system quickly my seizures gradually ceased and I went into remission which is where I have been for the last 40 odd years - there has been the odd blip which i can count on one hand and all minor.

Jump forward to my sons 40th birthday party and my body decided I should have the worst seizure I have ever had, 5 paramedics keeping me alive and a helicopter en route which luckily was cancelled.

So today, sat here with a hip about to celebrate it's first birthday, two dodgy wrists and the other hip complaining increasingly loudly I am absolutely petrified about future seizures, falling and injuring myself even more than my OA is doing and being told to start taking a cocktail of drugs just for the Epilepsy as well as all the other stuff I have to take for Asthma, bronchiecstasis and pain relief.

I cried myself through my GP appointment, she was very sympathetic but seemed to think I should start meds sooner rather than later due to Neurology not being able to see me until July.

I'm petrified, it's taking me so long to get over this seizure, my husband wants me to sit in one place and not move in case I hurt myself, I need to try and get back to a normal life but the Epilepsy and OA are not a marriage made in heaven and I'm just wandering how everybody else copes….I'm assuming there is somebody else like me that has both and like me has no warning of seizures happening so i am unable to get myself into a safe place. I know I should buck myself up and get on with it but this one hurts more than the rest.

Can anyone offer me any real life help or advice? Please? Sorry this is so long

Trish

Comments

  • Wobblylegs
    Wobblylegs Member Posts: 177
    edited 16. May 2025, 18:27

    Hi @Trish9556, I waited a little while before replying as I'm hoping someone else will have more experience than me. As you know my seizures have been intermittent, but also gand Mal with no warning. Mine are because of where my MS lesions are in my brain and are left temporal lobe. So I'm dealing with MS, OA, spinal stenosis and epilepsy. My seizures have never been as frequent or as long lasting as you described.

    What I can relate to is the fear in your message. Every time I've had a seizure I've been terrified for a very long time afterwards, months and sometimes years. The only thing that helps that fear is time. The longer you go without a seizure the better and more confident you will become.

    Do your research, as you have on OA, make sure what the doctor says is correct. As someone who has frequently had to surrender their driving license I do know that if you haven't had one for a year you can get your driving license back and if you haven't had one for 5 years they treat the next one as your first. So you may not have any more?

    I've now agreed to take a small amount of a drug as a prevention, although it doesn't guarantee that I won't have a seizure plus I react to drugs quickly so I don't need much to work. I've just agreed to that because of fear of falling and having what my neurologist described as a catastrophic fall because of my age.

    So I just wanted to say, I hear you and I'm here as others are anytime you need to reach out. You need reassurance but no one can give it as your situation is unpredictable and that's been my problem too and it takes a lot of facing but I know you can do this. 🤗 🤗

  • Trish9556
    Trish9556 Member Posts: 884

    Thank you @Wobblylegs

    I don't know what it is about this relapse - I've had four over the last 40 years and know how it works but, I think it's the severity of this last one which has knocked me back so much and the fear of future seizures with OA, the fear of damaging my joints further or even the hip I had replaced last year. I can almost hear my mum telling me to get up and not be so stupid and to get on with it as if she was packing me off to school the morning after. I don't know if I have the strength for another battle with the DVLA to get my licence back as it will be just before my 70th birthday when I would have to reapply anyway. The last time I had to reapply they wrote to say I had been approved then days later said it had been refused, the original letter was a 'mistake'.

    If I can get over the fear factor - fear of seizures and falling and the fear of being overdosed on anti convulsants by the GP's again which happened when i was 19 I can start to get work through everything.

    I think once I have fully recovered from this last one - two weeks on and still a way to go I will be able to start getting my head right and tell my husband in no uncertain terms I'm not an invalid!

    thank you @Wobblylegs , I do appreciate your reply.

    Trish xx

  • claudsl
    claudsl Moderator Posts: 214

    Hi @Trish9556

    I'm really sorry that you are going through this. I don't know much about it but hoping others can give their personal experiences and offer some advice to you.

    Wishing you all the best, Claudia x

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Wobblylegs
    Wobblylegs Member Posts: 177
    edited 17. May 2025, 14:45

    @Trish9556 I completely understand - all these worries, thoughts, drawbacks racing through your head. It's very normal and I'm sure that at this moment it feels a huge mountain to climb. Also, if you are anything like me, it takes weeks for your brain to feel as though it belongs to you again. I'm usually quite poorly for at least 4-6 weeks or more after a seizure. I would give yourself a break currently and don't try to solve this problem. Just get through each day, maybe the answer will come when your brain isn't so tender. A seizure of that type seriously messes with your problem solving skills.

    When you feel better make a list of your options and work though them slowly. I had a similar experience with drugs when young and wouldn't take any, not even antibiotics, for many years. I've now agreed just to a small amount of Pregabalin as it calms the electrical activity in my brain and also helps with nerve pain. But I won't take anything else, it won't guarantee no seizures but it's better than nothing. I just got my license back 2 years ago and I hit 70 last month, so also need to sort mine. Take lots of care of yourself at the moment, your body/brain need rest. Sending hugs Pat x

  • Trish9556
    Trish9556 Member Posts: 884
    https://community.versusarthritis.org/discussion/comment/734325#Comment_734325

    thank you @claudsl, I am getting there albeit slowly

    Trish xx

  • Trish9556
    Trish9556 Member Posts: 884

    Thank you @Wobblylegs

    I am getting there, very slowly but I'm still struggling with the effect it's had on me this time. Just have to wait and see what Neurology say in July. Off on a cruise at the end of the month so open seas and fresh air will do me good

    Trish xx

  • Wobblylegs
    Wobblylegs Member Posts: 177

    Have a lovely time and get well soon xx

  • Trish9556
    Trish9556 Member Posts: 884

    Thank you Pat @Wobblylegs

    xx

  • frogmorton
    frogmorton Member Posts: 30,418

    Hi @Trish9556 I am so sorry to hear that you had such a terrifying tonic clonic seizure. No wonder you are so scared I would be too.

    Just quickly going to share this with you. As you probably know my youngest had leukaemia at 16 resulting in damage to her left hip and right shoulder. Avascular necrosis. She has had hip surgery and then a shoulder replacement. She also has epilepsy.

    When she had her shoulder done that was the consultant's only real worry that she might damage the shoulder replacement post surgery. He was only worried about the initial 6 weeks if that helps at all.

    Lucy's seizures are also tonic clonic with absolutely no warning. I've lost count of the black eyes and split lips, but she lives alone now and is doing well working too. I rather think it's me who worries most. She takes sensible precautions including showers not baths and has an I-watch with a seiz-alert app on it too.The good news is that medication has improved since you were last on It I think quite a bit. She takes levetiracetam, lamotrigine and clobazam now.

    I hope in time once you have recovered and got your strength back you will feel a good bit better yourself and your husband will too. Sending you some strength and ((()))

    take care

    Toni x

  • Trish9556
    Trish9556 Member Posts: 884

    @frogmorton

    Thank you so much Toni, you have really reassured me and I do feel so much better even if you have made me shed a tear. I hope your daughter is doing well.

    I'm also being allowed to have two of my grandchildren for a sleepover this weekend so between you, everyone else on here and my son, I am feeling happier.

    We are booked for a Norwegian cruise next week and as neurology still haven't responded to me Dr's request for advice, they're not bothered so I'm going to go and enjoy myself especially as we've been upgraded to a suite free of charge, just what the brain needed!

    Thank you again

    Trish xxx

  • frogmorton
    frogmorton Member Posts: 30,418

    Trish thank you I hope the cruise went well? Yes very very good for the brain 🧠 Totally what the Dr ordered

    We did the race for life on Tuesday myself and said daughter. Lucy jogged - I went with the walkers group so steady enough.😉 Both were worried about each other! Silly aren't we?🤭

    I hope no more episodes for you and that you are doing well ((())) xxx

    Toni

  • Trish9556
    Trish9556 Member Posts: 884

    Thanks Toni

    The cruise was wonderful and exactly what I needed. A very stressful week before hand when we had informed the pre arranged cruise insurance, that included Epilepsy, that there had been a change in circumstances but, because of the routine follow up appointment after the cruise, they refused to insure my Epilepsy - despite my wonderful GP providing a letter saying I was safe to travel and all the tests were normal. I ended up 5 days beforehand, over the long weekend, having to find alternative insurance. Found a wonderful company called All Clear who provided better insurance than the original one who we will never use again.

    The original company would not accept the GP letter saying it could be a fake and anyone could have written it!!!

    Keeping fairly well with no more seizures, my consultant appointment has been put back a month to August which I could do without but they can't/wont change it, just have to get my Asthma and Bronchiecstasis sorted and tell my GP that my other hip is definitely worse for wear!

    Trish xx

Categories