Here some suggested organisations that offer expert advice on SN.
Moose here - again. Following on from my epilepsy thread.(639 Posts)
Hi folks, we were up to 995 posts, so I thought I'd better start a new thread
I know that feeling, Leonie, I really do.
And since they've upped my dose of Gabapentin on Wed/Thurs last week, I have been unable to do anything except stuff my face with excessive quantities of carbs.
I've put on 4lb in a bloody week.
Getting even fatter and blobbier...
Couthy, if it helps, the weight will be water retention from the carbs. You would have to eat a few thousand extra calories to gain 4lbs of actual weight/fat in a week.
I read somewhere they have changed the way they categorise epilepsy, so you wouldn't get a dx of TLE, just a dx of the type of seizures you have.
Can't remember where I saw it now though - frustratingly.
Just had a quick google but can't find where I read it, sorry.
I have found references here and there suggesting the guidelines are/were changing, but not what to, iyswim.
I'll have another look tomorrow if I get time, have a humdinging headache at the moment, which isn't helping me search.
It IS an unpleasant merry go round...
I haven't tried Trileptal / oxcarbazepine before, no.
My meds have been :
Lamactil / Lamotrigine.
Epilim / Sodium Valproate.
Tegretol / Carbamazapine.
Topamax / Topirimate.
Gabapentin / Neurontin.
I'm guessing that my next med (after a chat with the GP, he's still waiting to hear from the Neuro, I have to see a different GP about my epilepsy to the one I saw today for my joints), is likely to be Frisium / Clobazam OR Keppra / Levetirazetam.
I'm VERY concerned about the Keppra rage though, so my preference would be Frisium.
That should have read 'levetiracetam'. Fat fingers.
. I know, it's a choice between crappy seizures, or crappy side effects.
Sometimes I really hate it...
I wouldn't be looking at the frisium as a stand alone med - it would be as an adjunct, as I've had to finally accept that my epilepsy is currently bad enough to warrant an extra med in the week before my period.
I would still be on the Gabapentin. The only issue I've found with the Gabapentin is that I almost seem to develop a tolerance to it.
So 600mg/ day dealt with the majority of my seizures for about 3 months, then I started having breakthrough sz. So they have upped my dose.
But the same thing will happen, and if & when I hit the maximum dose (and have turned into someone with the brains of a jellyfish), I won't have any sz control again.
I need to do some research to find out if that's common when using Gabapentin as an AED.
When I have time...
Right now, since they upped my dose to 1500mg/day, (touch wood), I don't think I've had a single sz.
I'll know when my dose needs raising again...because I'll have sz.
I know, Leonie. It's a very particular sort of headache too, isn't it? Feels like your head has been squashed in a vice whilst simultaneously being burnt from the inside out...
I feel bad saying that since they jumped my dose up, aside from the side effects
of getting even lardier, I'm now nearly 13 stone when my usual weight is just over 10, I feel better than I have in ages.
If it wasn't for the residual pain in my foof, I'd be painting my front room!!
I do think it IS a massive case of trial and error when it comes to finding the right AED at the right dose for each individual with epilepsy.
MyGranny has been fine on Tegretol for decades, and is 98% seizure free unless under severe stress or driving at normal speed over a particular bridge...
Yet Tegretol made my liver start to fail.
Gabapentin seems to work ok for me, until my body gets used to each dose except for the week before my period.
I think you WILL find an AED that helps, but it may take a while - I was dxd in 2003, and it wasn't until 2008 that we hit upon the Gabapentin for me. So it took 5 years.
And then I had a med break for 2.5 years from 2009-2011. Went back on the Gabapentin, and dose rises each time szs break through.
It just takes time - each person has their own body chemistry, and so different AED's work better for different people.
I know of 3 people on Keppra - 2 get the rages, 1 doesn't...
Are you getting enough sleep? <<Nag, nag>>
I always find that lack of sleep is a MASSIVE trigger. You do NEED to be aiming for 8 hrs a night. Every night. I don't manage it, some nights I'm lucky to get 2 hrs, but that's down to DS3!
GP has basically told me that he will rise my dose of Gabapentin each time my szs break through, until either the breakthrough szs stop, or I hit 3600mg/day.
Though apparently a Neuro can prescribe up to 4800mg/day. I wouldn't want to take that much though - I'd rather they added an adjunct.
I'm already a space cadet, I can't imagine how dippy I'd be on 3600mg/day+!!
I have my bus pass!!
AND, and and and...after EIGHT years of waiting...OT have FINALLY called me about getting a wet room fitted, I will have an assessment in the next 4-6 weeks. That will also help me with my housing, because they won't do it till I've moved, so it will push me up the list by necessity!
On the downside, I got my Council Tax bill that tells me that I'm going to have to start paying £3.80/wk from the 1st April.
And the ASB case against my neighbour (playing music so loud it shakes the house till 3-4am every weekend) seems to have been dismissed by my Housing Officer after she spoke to them - all I've been told is that 'The tenant denied the allegations and have an explanation that at this moment in time I am satisfied with'.
But this neighbour has had ASB complaints from OTHER people in our street too. So how can the Housing Officer be 'satisfied'?!
Just takes the piss. I bet she whacks the music up extra loud tonight because she knows she can get away with it. And I just have to put up with it.
What's the point of putting it into the tenancy agreements that the tenant is responsible for anyone making noise in their property if the HA don't actually MAKE the tenant responsible?
Ugh. I didn't sleep well last night, and keep crashing out today.
And I can't stop myself from eating horrific amounts of carbs.
Is there anything I can eat that will fill me up like carbs but won't make me fatter? I can't not eat carbs right now - the hunger is do intense, and bready things are the only things I've found that remotely help.
I have had two bowls of cereal, and 5 slices of fruit loaf already today - and I'm still starving. The hunger is making me really short tempered too...
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