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Moose here - again. Following on from my epilepsy thread.

(639 Posts)
moosemama Thu 14-Mar-13 16:45:40

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

giraffesCantDateDucks Mon 25-Mar-13 02:17:09

leonie You said you had snot. How bad? The bad snot, pain around eyes, worse when bend forward all very sinus infection like.

Could have had sinus infection at same time that made the headaches even worse?

LeonieDelt Mon 25-Mar-13 07:17:15

possible, though i'm not a very sinus infectiony person - when i get snot, i get some snot in my nose but usually it goes straight past my missing tonsils, and down to my voice box, and makes a lot of pus.

i slept better. with less clonazepam (back to my .5mg). my neck didnt spasm and cause agony from 4-5am onwards. i didnt struggle to lay down. I was able to lay down and sleep. I dont remember waking up at all - i know i did, cos my propranolol's gone so i swallowed it, but i dont remember when.

That stuff seemed to amplify pain - why? Its supposed to make pain BETTER.

And omg out washing machine went batshit the other day and washed one load about ten times? It was on when i left - and it was STILL on, on the same load, when i got back 8 hrs later. I have no idea what it did in that time but hte clothes came out smelling of nothing, as if the soap, everything, had been washed away so many times there was nothing left but water.

Sorry you had trouble with the washing machine couthy. Sometimes they seem to go berserk!

Not looking forward to doing the school run with a pushchair and several inches of snow on the ground, and an unploughed cul de sac and paths sad

ariane5 Mon 25-Mar-13 08:48:44

Hello, have been reading with interest about keppra and vit b6- dsis takes keppra maybe that is causing some of her problems? I will speak to dm about it as dsis away and never likes to discuss things anyway as gets upset.

We had a busy weekend, dd2 was not brilliant had to watch her/check sugars all the time and ds2 poorly but I feel better now that things are out in the open. Will be back later as hoping to get gp appt.

LeonieDelt Mon 25-Mar-13 09:16:13

since the GP issued the topa rx, do i tell the GPs i didnt get on with it, or phone the neuro's sec?

LeonieDelt Mon 25-Mar-13 09:59:30

ok, told neuro's sec. they'll contact me. so, i'm washing out, and waiting to see what happens next.

LeonieDelt Mon 25-Mar-13 10:10:38

i feel like i am a house of cards. A very delicate balance. you can't just "bung some pills at me" and see what happens - upset one thing in the balance and the whole thing comes crashing down.

The secretary sounded very... annoyed with me. She took my number so maybe they'll phone me this time instead of dragging me across the city to another appointment, which will save me £6.30 in bus and train fare (which is a good thing!) and save me from having to arrange a babysitter...

i do hope they're not mad at me / annoyed with me. its worrying. i dont want to be seen as difficult, but i have a very difficult life which i cannot spend crawling up walls with pain or worry - i'm at my baseline.

Why oh WHY did the lamictal have to blow up like that?? Damnit all to hell, it was working! I had no head pain for 9 days! It was a miracle. sad

i could cry this morning. Sorry for the pity party. I just feel like they're gonna get annoyed with me and quit and i'll never get a solution i can live with...

LeonieDelt Mon 25-Mar-13 11:37:47

the new ep consultant phoned me! he said if i dont like the topiramate, then lets try something else. i said i need a lamictal without the reaction.

he said lets try zonisamide.

he'll write to the GP, and then they'll issue the script.

LeonieDelt Mon 25-Mar-13 13:13:03

half life of 60 hours? omg. Jesus christ

BeeMom Mon 25-Mar-13 13:21:56

Tell the annoyed secretary to sod off - it is nice that the consultant seemed willing to work with you. When speaking to Bee's neuro, we discussed side effects... as she says - you can not have a drug that affects brain waves without noticing it. Some times, the effects are minimal, and very tolerable, occasionally, they are seemingly absent, because the brain wave effect is seen before the side effects, and you never get to "that dose". Occasionally, however, you have a reaction like Bee did... and whether the drug is effective or not, it is not effective - you have to be able to live with the side effects to live with the drug.

A lot of it has to do with metabolism. When Bee has an anaesthetic, she requires a MASSIVE dose - she responds quickly, but just burns through it - and after a longer procedure (she is expected to be under the anaesthetic this week for about 3 1/2 hours) she has gone through what an average sized adult requires. Because she burns it so quickly, the drug blood level skyrockets - and with the Lacosamide, at least, what they think happened is that even at a partial dose, her body was metabolising it so fast that she was essentially overdosing with each dose.

As odd as this may seem, with the reaction she had, I am still considering talking with the neuro after this set of procedures to see if there is any way we can try it one more time - the promise of fewer seizures leads me to be willing to try (cautiously) one more time... with an even slower introduction.

Does that make any sense?

LeonieDelt Mon 25-Mar-13 16:05:10

Half life of 60 hours. It takes 13 days to wash out. I am extremely concerned about that, and the fact that the side effect profile is almost identical to Topiramate's.

Why would i hate topiramate, and then want to move to something like this?

Wouldnt it make more sense to try something with a shorter half life in case it goes tits up, i can quit it and not have to suffer for 2 further weeks??

i have phoned up and told them i have reservations. I havent heard back, which is fine.

LeonieDelt Mon 25-Mar-13 17:35:31

i just want my lamictal back. i could cry sad

LeonieDelt Mon 25-Mar-13 18:37:52

the consultant suggested in our phone call me going back on the lamotrigine - i asked if i would react to it again and he said probably yeah, so i left it...

but what if there was a way back on it withOUT reacting to it?

What if the goddamn smugass cuntface GP was right and the reaction was coorelation, not causation? Just shitty timing? Something that can be mitigated? Something that was unrelated altogether, just bad timing??

I wonder if it is worth trying lamotrigine again, slowly, on the valproate schedule, with antihistamines to hand, and seeing what happens?

I am just very, very wary of a 60 hour half life on a drug that from all accounts is a bit like scratching an itch with a cat o nine tails...

LeonieDelt Mon 25-Mar-13 18:59:48

where's everybody gone?

i've run them all off with my whining sad

LeonieDelt Mon 25-Mar-13 21:02:19

ariane5: been reading the crazymeds website. apparently the B6 doesnt help as much as 3x / day dosing for keppra. apparently the halflife is so short, that's why. the Anger / depression pops up in between the twice a day doses.

LeonieDelt Mon 25-Mar-13 21:08:15

Bee: i'm not even sure they offer lacosamide in the uk?

You're in London? Gosh. HI there. smile

LeonieDelt Mon 25-Mar-13 22:35:30

happy purple day tomorrow, guys. as happy as it can be, anyway.

listening to my favourite epileptic before bedtime - Neil Young.

I think I need a damn good cry' and some time to think. that's not unreasonable, is it?

sorry if I've monopolised the thread and bored you all with my witterings.

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:09:56

Sorry, not bored just browbeaten by life. Got notes from DLA. Never gonna win. Their own medical officers report is totally contradictory and beers from me needing no help at all (because I can push a fucking pram. Yeah but I can't walk around outside without it. And she saw me on a bad day for my joints) to me needing help often from my Ex.

From me being able to bath safely to having to sink wash.

From me having no seizures to epilepsy /NEAD.


Then theGP note says "epilepsy (uncertain)"

And arthralgia.

But I'm only 'mild to moderately affected'

And he asked me repeatedly to provide witness statements but patient has not done so.

Erm, that's because I'm not Dr fucking Who. He wrote that letter on 16/01/13, and asked ME for the witness statements on 19/03/13.

That's some timey-wimey shit right there!!

And to top that off, I got a lovely letter from the DWP saying that because I'm over the benefits cap I will have to find £50 A WEEK top up on my housing benefit.

Except I'm either not over the cap or I'm exempt from the cap...

£71 IS + £217 CTC + £60 ChB + £130 HB = £478. NOT OVER £500 a week!

So, they MUST be adding in my severe disablement top up on my IS. Which isn't being paid. Because my DLA isn't being paid. And you can't get the severe disablement top up on your IS if you are not in receipt of DLA.

So, either I am UNDER the cap, because neither DLA nor severe disablement top up on IS is currently being paid OR I am OVER the cap because of severe disablement top up on my IS but am exempt from the cap because I get DLA.

It has to be one or the other.

But neither DWP not my local HB can tell me who has worked out that I am over the cap. Nor can Shelter's Welfare team. Nor can the community legal team.

Someone, somewhere MUST have decided that I was over the fucking cap, but WHO FFS!!

And as for £50 rent top up. Hahahahahahaha.

I worked put that out of £71 IS, that would leave me £21. My electric alone is £25 a week. That works. Not.

Then there is all my other bills. Which I am meant to pay out of my CTC and ChB?! That money is meant to feed & clothe the DC's. If I spend that on bills, how do I feed or clothe them?! confusedconfused

Tbh, they're all incompetent bastards. And I'm sick of it. What is the point in fighting all the time if I'm going to end up losing the DC's anyway when I can't afford to house AND feed them at the same time?

Shitty day. Shitty week. Shitty month. Yet another Shitty year.

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:16:00

I saw him in February 2012 about my seizures and he stuffed me back on Gabapentin.

I saw him again about my epilepsy A WEEK BEFORE MY LLETZ, on 05/03/13. Over a year later.

For a whole year, I'd just been bunging in repeat prescriptions in at Tesco pharmacy. They got sent to him to sign. He signed them. For 11 fucking months.

Not once in those 11 months did he ask to see me, or ask me for cunting witness statements BECAUSE I HADN'T SEEN HIM.

I'd seen one of the other GP's about my joint issues. And then another.


CouthySaysEatChoccyEggs Mon 25-Mar-13 23:17:00

11 months should read 13 months. Anger is making the (tiny) mathematical part of my brain implode, obviously.

CouthySaysEatChoccyEggs Mon 25-Mar-13 23:18:26

I might take up banging my head repeatedly off concrete. It'd achieve the same effect without being anywhere near as stressful.

LeonieDelt Tue 26-Mar-13 07:31:26

Goodness Couthy. The DLA stuff is very very stressful. I'll need to re-read with a cup of tea before being able to contribute in any meaningful way myself.

But i can say this: How can so much contradictory stuff fit into one report??

They really are determined to undermine all of us arent they? SIGH.

Re the joint issues, i'm also hypermobile as are both of the girls but no EDS that we know of (???) saying that i wonder if the neurontin is "helping" your joints to hurt? Just a thought.

My fucking sternum is playing up something awful last week and this - makes me think i'm having a heart attack while i'm out carrying something or walking, when actually, its just pain IN my sternum where those 2 little bones join up and all the other little bones connect to it, cos i can duplicate the pain just by touching them. = costochondritis. But you try telling my brain that while i'm out walking, i instantly think its angina and therefore i'm going to die.

and they wonder why i cant take a med that is agitating like topamax, and dont WANT to take a med with a similar side effect profile like zonisamide, which i cant get rid of for 13 DAYS?!?!?!

(i read up on crazymeds on zonisamide too - its like topamax-on-steroids, i really really dont need that)

LeonieDelt Tue 26-Mar-13 07:32:41

sometimes i think my life was better when i was focussed on the kids and ignored my own body. Cos when i listen to it, i struggle to know how to decipher stuff.

I've missed Moose. Beetlejuice! WHere are you, Moose?

LeonieDelt Tue 26-Mar-13 07:33:43

Erm, that's because I'm not Dr fucking Who. He wrote that letter on 16/01/13, and asked ME for the witness statements on 19/03/13.

Hang on, you mean you cant time travel??

hmm hmm hmm


CouthySaysEatChoccyEggs Tue 26-Mar-13 08:49:23

I know! You'll have to excuse my sarcasm mixed with geekiness wrt the Dr. Who reference, but it's how I feel!

LeonieDelt Tue 26-Mar-13 09:08:36

(Who-geek here since 1991)

that would take some serious wibbly wobbly timey wimey to pull that off... Efkin bizarre.

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