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Anyone else with epilepsy on the forum?

alpacasqueak

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Been thinking for ages about starting a little thread asking, but as above?! :hmm::)
Not sure if I’m the only forum member that’s a sufferer from epilepsy? Talk about it all the time on here of course, not ashamed at all, but just my curiosity and would be lovely to know it’s not just me!

(In case people don’t know) I was hit by a car when I was 13, my head went through the windscreen and I broke my right arm in three places, burst my right eardrum and was in hospital for a week. Off school for six weeks, the worst thing at that age was my mum having to help me in the bath!:yikes:
Thankfully ear and arm healed sort of ok. But I started having what I now know are ‘partial’ or ‘complex partial’ seizures. I’d had depression and anxiety after that so we thought it was that really. And a big white spot on my frontal lobe (in my brain) that I got scanned every 6 month for years. (I refused surgery about 8 years ago, couldn’t leave my beasts and everything else!)
At about 16/17 I started having fits and finally got diagnosed with it at 18 and started on meds. Since then it’s up and down, I have a great year then a bad one, but annoying with it being damage to my brain it’s a bit out of control at times! Even with meds!

So yup, it’s hard at times but if I make a joke on here about it I do mean it, feel free to laugh everyone! :D It’s hard but it’s been me for years now, got to at least get a chuckle about it!:D
 
I started having seizures when I had just turned 17 (some full some partial upwards of 20 a day) most of them didn't last long at all but there were some that lasted for a couple of hours where I was in and out of tonic clonic seizures but not really regaining consciousness in between. It came on out of nowhere with no explanation and was really scary for me and everyone around me. After a few months of this I had a seizure in a swimming pool and the lifeguard insisted an ambulance was called. The paramedic advised my parents that the quickest way to get me on medication was if I went into hospital then and so I did. I spent all Easter in hospital but i came out and was on medication that really worked for me. I had occasional seizures but as my dosage of medication increased the seizures decreased and I'm proud to say I've now gone 2.5 years seizure free. I'll be on medication for the rest of my life and I sleep a lot but most days I don't think about it much.

I have autism, anxiety and depression which all come with their own issues aswell and tend to cause me more struggles than the epilepsy does these days but just like you I find humor is key to dealing with having a bit of a broken brain.
 
I’m not sure what I prefer, the tonic clinic because you get it out of the way a bit, or complex partial so some of it comes back to you and you know where or how you’ve lost an hour!? I’m definitely a cluster-seizure person too though, what I’m going through atm, just have a few good days in between rather than nonstop like years ago!
That’s so amazing for that long @Sweet Potato 🥳🥳 If you’re anything like me when I’m having a good month I don’t like to talk about it, but obviously makes no difference really! But go you! ❤
So great when it’s under control, I’ve had so many different meds and combinations of them. So glad it’s working for you:hug::luv:

That’s why I like to call this the wonky house! Broken brain runs it of course! :))
 
I have epilepsy too. Mostly trying to live a normal life. Take my pills, avoid triggers, take prevent measures when in danger.. I was really bad, but had a VNS put in and am on the keto diet at the same time. A lot better now. I generally keep it to myself. Family knows of course.
much love and blessings
 
I’m not sure what I prefer, the tonic clinic because you get it out of the way a bit, or complex partial so some of it comes back to you and you know where or how you’ve lost an hour!? I’m definitely a cluster-seizure person too though, what I’m going through atm, just have a few good days in between rather than nonstop like years ago!
That’s so amazing for that long @Sweet Potato 🥳🥳 If you’re anything like me when I’m having a good month I don’t like to talk about it, but obviously makes no difference really! But go you! ❤
So great when it’s under control, I’ve had so many different meds and combinations of them. So glad it’s working for you:hug::luv:

That’s why I like to call this the wonky house! Broken brain runs it of course! :))

Not sure which I prefer either but I did used to do wierd things when I was approaching a partial and then not remember after and I can do without all the stories of crying at a shop assistant adamant that there was a bee in my ear.
 
I have epilepsy too. Mostly trying to live a normal life. Take my pills, avoid triggers, take prevent measures when in danger.. I was really bad, but had a VNS put in and am on the keto diet at the same time. A lot better now. I generally keep it to myself. Family knows of course.
much love and blessings
So glad you’re getting better with it and with meds too, it can take a while to get the right ones (especially as they’re all brain ones!) but keep trying even though they make you feel terrible at the start :doh: x
 
Not sure which I prefer either but I did used to do wierd things when I was approaching a partial and then not remember after and I can do without all the stories of crying at a shop assistant adamant that there was a bee in my ear.
It’s bizarre really what we put up with! The deja vu thing brings me horror! You can’t explain it to non-epileptic, not the same, just makes me ill!
 
My 3 year seizure free break is over 😭

I had a partial seizure on the bus home from work. I think I forgot to take my meds last night which made me more vulnerable. Luckily some very lovely strangers got me to my mum and I slept it off at home. Just devastated to have one after 3 years seizure free and now I'm just embarrassed and worried about going back to work (mums making me take tomorrow off).
 
I am so sorry to hear you have had a seizure @Sweet Potato . Such a shame after a 3 year break, hopefully it's a one off. I am glad you got home safely. One of the things that has impressed me most during COVID has been the kindness of strangers, there are some really lovely people out there.
 
Oh I’m so sorry @Sweet Potato :( It’s so gutting when you’ve gone so long without them. I’m glad you had some help to get home, some people are so lovely. Don’t be embarrassed at all, you did nothing wrong. So sorry for you, massive hugs x
 
The majority of people are so kind. One day I'm sure I'll get my phone stolen seen as my only way to help myself is to call my mum and pass it to anyone close by when I feel myself getting worked up and upset and can't get my words out or if I feel a seizure coming on and can't get my words out. Without the help of kind strangers I couldn't be as independent as I am.
 
My 3 year seizure free break is over 😭

I had a partial seizure on the bus home from work. I think I forgot to take my meds last night which made me more vulnerable. Luckily some very lovely strangers got me to my mum and I slept it off at home. Just devastated to have one after 3 years seizure free and now I'm just embarrassed and worried about going back to work (mums making me take tomorrow off).
I am so sorry to hear this, but hopefully it was simply a one off because of the forgotten meds.
Or maybe something else has changed that means your meds need adjusting?
I know for a lot of people it can be a very fine balance getting the ratios and doses right.
I guess it's hard because everyone has a totally unique seizure pattern and brain response.
I have have had several close friends who have had kids with epilepsy and it can be deeply overwhelming and scary, particularly before it is properly under control.
I hope today is a better day :hug:
 
I am so sorry to hear this, but hopefully it was simply a one off because of the forgotten meds.
Or maybe something else has changed that means your meds need adjusting?
I know for a lot of people it can be a very fine balance getting the ratios and doses right.
I guess it's hard because everyone has a totally unique seizure pattern and brain response.
I have have had several close friends who have had kids with epilepsy and it can be deeply overwhelming and scary, particularly before it is properly under control.
I hope today is a better day :hug:
I'm feeling fine today just a bit drained and have a slight headache. I'm just getting fed up with being patronised by my family but I know they mean well. I'm hoping it's just a one off I hate the idea of having to up my meds again so I'm just going to carry on like nothing happened.
 
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