On Tuesday I had an emergency appointment with my epilepsy nurse, after he picked up the frantic message that I left on his system over the weekend. He decided not to let me wait another couple of weeks for the appointment he had me scheduled in for, as he felt it vital that the neurologist was available to confer with (epilepsy nurses aren’t qualified to recommend drugs or write prescriptions – their job is to take notes, listen, offer support, ask questions and generally take as much of the load as possible off the neurologist, who has other patients to deal with besides those with epilepsy).
I was lectured on my alcohol intake (again) and I explained that I am dealing with this issue. Old habits die hard and, when you’ve used something as an emotional security blanket for 20 years or more those habits die even harder. He compared the blood tests results from my visit to A&E to the blood tests taken at my surgery a couple of months ago and my hard work is paying off – the results are still abnormally high but considerably lower, which means that my liver is slowly but surely beginning to repair itself.
Not at all what it sounds like!
After a bit of a conflab with my neurologist, the epilepsy nurse handed me a prescription for Vimpat – which are these pretty little purple things here and not a soft blackcurrant drink. It’s about all they can give me that won’t hurt my liver further (we’re trying to make it better, please and thank you), won’t make me psychotic (Keppra), won’t make me miserably fat with water retention and tendonitis (Lyrica) and won’t inflame my eating disorder (Topiramate).
Yes, we’ve been through several options here. The Keppra had the unfortunate side effect of turning me into a female Norman Bates (except that I didn’t actually kill anybody – just tried to) and the Lyrica side effects caused me so much pain that I couldn’t walk. There was emotional pain too; imagine how it feels for an ex-athelete to suddenly find themselves five stone overweight through no fault of their own, and in so much pain that they can’t even walk. Yes, that was me two years ago.
Ironically, these were the two drugs that kept me relatively seizure free – but if it’s at the cost of your mental health and general well-being it really isn’t worth it. I’d rather have seizures than be constantly attacking my husband or hurting too much to get off the sofa or even out of bed.
Disclaimer: The psychotic side effect of Keppra is extremely rare and I was one of the very few unfortunate victims. Please do not be put off this medication if it is working for you.
I’m to take 50mg at night along with my usual dose of Clonazepam. It hasn’t fully kicked in yet, obviously, and I’m waking up with a drug hangover and dizziness, but this happens to me every time my medication or doseage is changed so I’m used to it.
Hopefully it will put a stop to late night visits to the hospital where I end up like this:
These people obviously think I am either a pincushion or a Voodoo Doll!
I so hope this drug works for you. Btw your arms look very thin in that photo.
My arms are naturally thin and wiry. Even at my fattest on the Lyrica, I never developed bingo wings. They probably look thinner here than they really are because of the way I’ve turned my wrists to show the injection sites.
Dear Missus Tribble,
How’s it going?
Love Dotty xxx
Dear Dotty,
Thank you for caring – I genuinely appreciate it.
Aside from being stoned in the mornings I think it’s going fine
Love, Gemma xxx
I’m sorry you are going through so much! I have a lot of catching up to do with your blogs, too. Hang in there – hope you feel better soon
xxx
Thank you. I think it’s all in hand now, but I won’t know until Friday, when I get the results of the blood tests I’m having in the next 20 minutes!
YIKES (hides) better you than me! Good luck!
I’m so used to needles; I have B12 injections every eight weeks and have regular blood tests because of the medication I take. Show me a needle and I don’t even blink any more. My phlebotomist is really nice too, which always helps
es, I’ll need the injections for life as my body can neither make nor absorb B12 on its own. robably the blood tests will be lifelong too, as some of my blood results are off the charts (I like a drink, but even that doesn’t explain why my GGT readings are so high) and I have mild liver damage (although that seems to be slowly repairing itself).
While the phlebotomist was prepping, a receptionist picked up the phone (our room backed on to reception). Suddenly the receptionist said “I’m sorry, I don’t understand you – you sound like a DALEK”!!
I didn’t dare laugh unless the phlebotomist did, so I was relieved when – after a short pause while we registered what we just heard – she collapsed in fits of giggles! We were both still crying with laughter during the blood draw!
Oh dear hahahaha that sounds hilarious (the Dalek bit!) imagine that happening when you are such a fan, too!
I’m sorry you will have them for life, it sounds like you have been through a lot of struggles health wise. All we can hope are that your body gets stronger with time and that medical science advances enough to help you heaps more!
Honestly, I damned near split my sides – almost exploded whilst waiting to see what the phlebotomist’s reaction would be (it would have been rude to laugh if she didn’t) but we were in fits!
I just take every day as it comes; today is the only day that matters, as the saying goes
So true. We only have right now! We can’t make right now the best we can if we are fretting over tomorrow or yesterday
Exactly. my Nan always used to say “There’s no point crying over spilt milk” and she was so right.
I became very depressed when I realised I’ll never work again, but then I thought “But I can use my experience to make someone else’s life better” and so this blog was born. I used to be a carer to elderly people with dementia. I’m still a carer; I just use the internet to perform the same service and try to make people smile.
And believe me, I even managed to find the funny in breaking my toe – I was all “Hey world; check out these awesome bruises” – because it’s laugh or cry
You are such a precious spirit, too many people are so ‘woe woe woe’ and you have so much on your plate and you face it with a smile and good humor – so inspiring
It must have been hard to know you would never work again. But I’m glad you can see you can have just as useful and important a purpose without it being work 
I wanted to train to be a staff nurse like my Nan, or an RGN – with a view to running my own home some day. A local home near our house offered me employment, and then they panicked about my epilepsy and withdrew. I was so hurt. In hindsight they were right to be concerned, but they should never have got my hopes up like that with the promise of a job.
I have the right people reading my blog – people who specialise in both autism and epilepsy. I’m being heard in the way that I always wanted to be – just in a different way than I imagined
It is really sad that they got your hopes up.
It’s so true that we often do not expect how things turn out to be!! It sounds like you are finding you are here for a very important reason – just not what you thought it was
You know you’re doing it right when a complete stranger who found you via another complete stranger’s retweet on Twitter stops by and thanks you for helping them understand their child or helping them feel less sorry for themselves. When I began my funny little blog I never dreamed it would get out and have such a positive impact!
YES so true! You totally are doing it right
Thanks! Autism and epilepsy are so feared and misunderstood by so many. I wanted to add my voice to those already out there, and I’ve been noticed by the MD of Epilepsy Action, and the charity (which I’m a lifetime member of) give me their full backing and permission to use their logo and web address in my epilepsy-related blog posts. I was over the moon when all these people from the charity started contacting me and asking “Can we link to this blog post?” – it’s wonderful to know that I can still make a difference in the community from my perch on the sofa
That’s incredible stuff indeed!! You are right that there is still a lot of stigma – and the way to decrease stigma is to increase understanding and education – which you are doing
I like to refer to myself as “Spock’s Granddaughter”. People seem better able to relate to that and it fits my obsession with sci-fi.
Basically, nasty stuff can happen but essentially I’m Gemma, the likeable, geeky, clumsy nerd.
I think it’s very important to be able to laugh at yourself; it’s how we stay sane
Most definitely
Here is my beautiful toe: http://rosewinelover.com/2012/03/31/epilepsy-the-consequences-of-seizures/
I was quite serious in the blog entry because people need to know how serious epilepsy can be and what it can do to you, but as the weeks went by (and the agony subsided) I was able to progress into making liight of it.
Honestly, I was fascinated by the bruising. It was pretty and I wanted pictures for posterity
I can see why you wanted the pictures – OUCH
I am sending a LOT of positive energy and healing your way… my goodness, you are such a toughie my friend! What an inspiration to us all!
Thank you Lori. I just live day to day and take life as it comes, because that’s all any of us can do
Good luck! I hope the new meds solve things for you.