CP and Seizures advice

DDN1429

This is just a general query to see if anyone here has both of these conditions.

I'm 36 year old, have mild cp affecting right side, I had a TC seizure when I was 10, but after scans and tests came back all clear, parents were informed this most likely one off and would grow out of it. Fast forward to now, after having over a dozen over the years (not a lot compared to other people I know, and 5 of them witnessed) I had always been told these were faints, but after that last two, one where I lost consciousness in kitchen falling to the floor, then a nocturnal one where I was incontinent of urine couple weeks later, I now have been initially diagnosed with epilepsy. 

My CT scan came back clear as expected, my ECG showed my heart is in pretty good shape, and my EEG was normal. I was started Keppra in April, and seems to be working in sense that I am sleeping better, have more energy through the day, but still getting (what I now know to be) auras. I've had one definite, and maybe one more nocturnal seizure as woke with inside of cheek badly bit.

Seeing Neurologist next week for consultation, so got my list of questions for him lol, but I guess I'm just looking to see if anyone has similar experience/issues.

Was unsure if this should go in Cerebral Palsy or other section, so apologies in advance.

SaraC_Scope

Hi @DDN1429

I'm Sara and have right sided hemiplegia and epilepsy.  I had my first seizure at the age of two and continued to have focal seizure, tonic clonic and abscence seizures until I found the right medication at the age of 30.  I've been seizure free for 16 years now.  I also take Keppra, alongiside Lyrica and clobazam.  I experienced an aura before each seizure, so this was my warning to get to a safe space.

I occasionally get auras if I've had a difficult week, so understand the need for self care.

I volunteer with Epilepsy Action and they have been a great support to me.  It might be worth visiting their website if you haven't already https://www.epilepsy.org.uk/

If you have any further questions about CP and Epilepsy, just ask.

Best of luck with your appointment next week.

Sara

Hannah_Alumni

Hello @DDN1429

I hope your appointment with your Neurologist goes well Please keep us updated.

DDN1429

SaraC_Scope said:

Hi @DDN1429

I'm Sara and have right sided hemiplegia and epilepsy.  I had my first seizure at the age of two and continued to have focal seizure, tonic clonic and abscence seizures until I found the right medication at the age of 30.  I've been seizure free for 16 years now.  I also take Keppra, alongiside Lyrica and clobazam.  I experienced an aura before each seizure, so this was my warning to get to a safe space.

I occasionally get auras if I've had a difficult week, so understand the need for self care.

I volunteer with Epilepsy Action and they have been a great support to me.  It might be worth visiting their website if you haven't already https://www.epilepsy.org.uk/

If you have any further questions about CP and Epilepsy, just ask.

Best of luck with your appointment next week.

Sara

Hi, thanks for your response! I'm still in the process of learning different seizure types, so apologise if get terms wrong or jumbled. I used to as my mother would say "zone out" but has never been something I've thought about. I've fairly recently found out about Deja Vu phenomenon, and can say I've definitely had more than "normal" over the years. The only way I can describe my TCs, I've either been ill to begin with, lack of sleep (worked night shift for several years) and could happen any time of day. I've always had poor sleep regardless, and due to feeling as though sleeping better think I might have been having nocturnal seizures..

I have reached out to Epilepsy Action, and have been given some good advice on there.

I've always been "clumsy" and again, always put this down to hand to eye coordination, poor fine motor function, but there's been a few fairly serious injuries and some near misses shall we say that I'm not sure have been absences rather than unexpected movements, or "not paying full attention".

I'll be bringing all this up next week, but appreciate your response 🙏

SaraC_Scope

@DDN1429 It definitely is a learning process.  As a child I used to refer to my seizures as "pains" even though they didn't hurt.  I didn't call them seizures until adulthood.  I also experience weird De ja vu and didn't know until much later it was part of epilepsy.
I'm glad Epilepsy Action has given some useful information.  They really helped me and without them I wouldn't have had the confidence to apply to work at Scope.
Best wishes

DDN1429

Hannah_Scope said:

Hello @DDN1429

I hope your appointment with your Neurologist goes well Please keep us updated.

Thank you, and I absolutely will keep you all updated.

VANGOUGH

IT CAN BE QUITE COMMON TO HAVE BOTH CONDITIONS AS IT IS A COMMON COMORBIDITY  I HAVE BOTH MYSELF AND KNOW THAT YOU CAN HAVE NORMAL EEG MRI IS A CLEARER RESULT  ALL MY LOBES ARE AFFECTED
HOPE ALL GOES WELL FOR YOU

DDN1429

Just an update for everyone. Had consultation on Friday, and got some answers, discussed whether what I have been thinking are spasms (some do lead to very painful cramps/muscles seizing, usually right calf), could they possibly be something else and he asked me if sometimes movements like this, *then did a jerking action with arm* which I said yes, to which he then said quite possibly and explained that both conditions are, as @VANGOUGH said quite common comorbidity and went on to say basically, does it matter which are which? (I had to bite my tongue at that moment)

Was also told that even though tests have come back clear, I do have clinical diagnosis of CP and now Epilepsy, which is great, but led to me questioning how it's took so long for diagnosis, given I've obviously been concerned and sought advice after each "big ones shall we say", but this was kind of dismissed again.

My Levetiracetam is being gradually increased again and he explained can gradually increase if needed to.. can't remember max dose on top of my head 🤔 

Definitely can't do night shifts again and quite a few other practical implications which I was expecting, but still bit of a sting.

Forgot to ask a question about rescue medication due to living pretty rural, but I've spoke to his receptionist about this and he'll get back to me next week-ish. But he did say he would fill out bus pass form, and do a letter of sorts to aid my PIP appeal (been meaning to do an update thread about that).

Hannah_Alumni

@DDN1429 I'm glad you finally got that consultation and got answers. I hope the gradual increase will help, do you have an appointment to go back and monitor if / when that works? 

I'm sorry it'll effect doing night shifts. I hope the receptionist gets back to you asap and your PIP appeal goes well too! 

SaraC_Scope

@DDN1429 Good to hear your consultation went well.  I hope the gradual increase of medication helps you.  I also take Levetiracetam and on Max Dosage.  It helps control my seizures along with two other drugs.
If you need any other support, feel free to ask.

Chloe_Alumni

Hi @DDN1429, thank you for taking the time to update us. I have left hemiplegia and have had seizures, athough it was concluded to not be epliepsy. I hope you hear back from the receptionist soon and can continue to seek support and advice from the online community.