Cerebral Palsy
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Adult-onset temporal lobe epilepsy

KylieGirlKylieGirl Member Posts: 12 Connected
I turned 43 in October. I have recently been diagnosed with TLE, (still waiting for MRI date).

First of all, is anyone else in the same position as me? I have spastic CP,

Second, this has only happened in the last few months. Having done some research this morning, I found out that TLE is caused by scar tissue that has arisen from the original brain injury. And it can spread, so shouldn't this be something to be considered when telling patients that CP doesn't get any worse? Ok, so as they keep saying, "the original brain injury doesn't get worse, it is the effect of it that makes a difference." But this is something that in the brain, this isn't to do with surgery, wear and tear on the body etc this is neurological. It has really got me thinking, since the neurologist told me that CP can cause it.

I would be really interested to hear your opinion on it.

Replies

  • April2018momApril2018mom Posts: 2,869 Member
    Hello @KylieGirl

    I am tagging @Richard_Scope as he might be able to help. Have you contacted Action CP or not? https://www.actioncp.org/
    Good luck for the upcoming MRI scan too! 
  • Eve53Eve53 Member Posts: 15 Courageous
    I was also told the same, that adult onset seizures can be caused by an old injury. Thankfully I’ve just had the one partial seizure, but it was assumed to be due to CP. 
  • KylieGirlKylieGirl Member Posts: 12 Connected
    Thank you April and Eve. I really appreciate your input. Eve, what do you mean by a partial seizure? The deja vu episodes are getting more frequent but the amount of lamotrigine is still only on the initial dose.

    Best wishes and thank you

    Zoë 😊
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @KylieGirl, I imagine this must have been frightening! I hope the MRI is able to prove useful. Are you under an epilepsy team that you con contact if you have any concerns?
    Scope

  • KylieGirlKylieGirl Member Posts: 12 Connected
    Hi Chloe

    Thank you so much for your message.

    No, the only person I have looking into this it's my neurologist. All I know is that they suspect it to be TLE and the MRI is just to confirm it. I know that this is the most common form of epilepsy, and I haven't (thankfully) had a full-blown seizure, just déjà vu episodes, the record being five in one day. I don't know if they are classing it as actual epilepsy.

    To be honest, the neurologist didn't go into any great detail about it, and I only know what Dr Google has told me! (Mind you, he did ask me if I had done any research, I told him what I thought it was and he said he was thinking exactly the same thing.) 

    Thanks again for your message, any help and support is gratefully received. 

    Best wishes

    Zoë 😊

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @KylieGirl, please do let us know how you get on and I hope they are able to give you more information when things have been confirmed. :)

    If you have any questions then this number might be helpful:

    0808 800 5050

    The Epilepsy Action Helpline is the only epilepsy helpline providing information accredited by the NHS England Information Standard. We're open Monday to Friday 8.30-5.30pm on freephone 0808 800 5050 or by emailing helplineepilepsy.org.uk.
    Scope

  • KylieGirlKylieGirl Member Posts: 12 Connected
    Hi Chloe thank you so much I really appreciate the information😊
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Not a problem! Please do let us know how you get on @KylieGirl. :)
    Scope

  • Hannah2610Hannah2610 Member Posts: 12 Connected
    I have TLE. What started off as partial seizures eventually generalised and then I was diagnosed. Years of fear and not being able to talk about what I was experiencing through fear of sounding crazy.
    partial, temporal lobe seizures... I get a rising in my stomach, a sense of doom, all these thoughts go through my head that don’t make any sense. I used to get deja vu but that element seems to of faded away over the years. I used to feel euphoric during partials, but eventually that turned to DOOM.
    My MRI, CT and EEG came back clear....but I was diagnosed when put in a coma to stop me keep going into status at 29. When they woke me up I spoke to a neurologist, told them about the “moments” diagnosed with TLE. I cried with happiness. The TLE in the end had a huge impact on my personality. I was losing the plot, my memory and emotions :/ I felt blessed, I’m not crazy.., I don’t have brain cancer.., I have temporal lobe epilepsy.
    the issues surrounding the seizures for me, are harder to contend with than the seizures themselves. There is a page on Facebook, temporal lobe epilepsy. All the love, understanding, and support in the world. So much understanding for a complex condition xxx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Thank you for taking the time to share this with us @Hannah2610! I cannot imagine how difficult and scary that must have been. You are very welcome here. :)
    Scope

  • Richard_ScopeRichard_Scope Posts: 2,830

    Scope community team

    Hi @KylieGirl, it very much depends upon which area of the brain is damaged, as you probably know. Not everybody with CP will develop TLE so unfortunately at the moment it can only really be identified after the first seizure and an MRI scan is carried out.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • KylieGirlKylieGirl Member Posts: 12 Connected
    I have TLE. What started off as partial seizures eventually generalised and then I was diagnosed. Years of fear and not being able to talk about what I was experiencing through fear of sounding crazy.
    partial, temporal lobe seizures... I get a rising in my stomach, a sense of doom, all these thoughts go through my head that don’t make any sense. I used to get deja vu but that element seems to of faded away over the years. I used to feel euphoric during partials, but eventually that turned to DOOM.
    My MRI, CT and EEG came back clear....but I was diagnosed when put in a coma to stop me keep going into status at 29. When they woke me up I spoke to a neurologist, told them about the “moments” diagnosed with TLE. I cried with happiness. The TLE in the end had a huge impact on my personality. I was losing the plot, my memory and emotions :/ I felt blessed, I’m not crazy.., I don’t have brain cancer.., I have temporal lobe epilepsy.
    the issues surrounding the seizures for me, are harder to contend with than the seizures themselves. There is a page on Facebook, temporal lobe epilepsy. All the love, understanding, and support in the world. So much understanding for a complex condition xxx


    Hi I've just seen your message, thank you so much for sharing. Sounds like you have been through a terrible experience and I really hope things have settled down for you.

    I have joined the Facebook group, and as you say they really are amazing. Such a nice group of people. Xxx
  • KylieGirlKylieGirl Member Posts: 12 Connected
    Hi everyone sorry it's taken me so long to get back to you all.

    Thankfully, the MRI scan found nothing sinister and I have now been referred for an EEG.

    I'm on my 4th round of medication as the other three have not worked or caused unwanted side effects. The highest number of episodes I've had in a day has been 9. With everything that's going on, it could be months before I get the EEG, but I have decided not to increase the medication so that I can get an accurate reading, I know what triggers me so I'm going to make sure I have plenty of that with me! (Certain TV shows and music). The epilepsy nurse has spoken to the the consultant and he agrees not to try to alter things just yet. They are going to give me some emergency meds for when the days are really bad.
    Thanks so much to you all for your interest and support xxx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @KylieGirl, I'm glad the MRI was okay. I hope you are keeping okay in lockdown. :)
    Scope

  • KylieGirlKylieGirl Member Posts: 12 Connected
    Hi @Chloe_Scope coping well thanks, very lucky to have my wonderful husband with me, I know that there are a lot of people who are struggling with the isolation. How about you? 😊
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Glad to hear things are going okay. I'm good thanks, although I would like to meet up with friends and family!
    Scope

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