Update 'n stuff (possible rambling)

[Loopy Lou]

Sooo yeah i'm pretty aware that i've not really been on here much lately, apart from "The Midnight Club" so i thought i'd let yous know how things are going.

Vimpat doesn't seem to be working for me. Side effects are there but manageable, but unfortunately it doesn't seem to be doing the job. Looks like my neurologist has sent me into that big ole black NHS hole of no-appointments too, so i've got to call and nag his secretary for my twice annual appointment.

Had a tc the other night. I'd had a few drinks, but not a major amount. I don't often drink now, usually only when my brothers visiting and then we'll have some rum in the house and watch movies and stuff. I think i probably drank quicker than i normally would do though because i was angry and stressed with work, fed up and wanted to be "normal" again. Yup, silly. My brother had to go get my mum because apparently i wasn't breathing, and then my mum had to undress me and put me to bed. I still have a headache and the achiness now, and for some reason a nice dent in the side of my head onder:

Question - anyone get periods of extreme shivering (as though you're cold) after a tc? Apparently i just wouldn't stop shivering even though the fire was up full and i had a blanket over me. That's happened before when i was at the dentist and had to have a load of work done too. Wonder if it's a "shock" thing.

Hmmm what else... oh yeah, didn't realise how much i was withdrawing from everything until my brother pointed it out to me. Just don't really want to spend time with people or do anything really. I've contemplated giving up work completely because i feel like i'm struggling to cope with even 20 hours a week and yet bizarrely i'm going for a more high pressure promotion? Madness.

I worry that i'm scaring my brother and my mum and dad. They know i'm not quite "right" but i find it hard to talk to them. Luckily Rae was on hand and had a good chat with my brother online after i had the seizure the other night, and i felt it easier to talk to him after that. (Thanks Rae x)

There just seems to be loads of little things at the moment that are building up and it's just become a massive pile that i don't know how to begin sorting through. Those little things sure get on top of people, eh? I'd settle for a decent night's sleep and a break though.

Perhaps i should have put this in the Padded room? Not entirely sure this whole post made sense.

 

[Endless]

Lou,

<<<<<BIG HUGS>>>>>

Your post made absolute sense.

When the meds aren't right we feel like c*$&. I don't know about you, but I get so overloaded when I'm pre-seizury, headachy & in pain (from IIH), recovering from a seizure from the night before, not to mention the large number of side effects from seizure meds. Then add in sensory overload from the environment and the people talking and asking and wanting, and it's one big mess. It's hard to take care of one's self, let alone take care of the job.

I'm off work right now for those reasons, and others, like right now no sleep - only about 2-3 hours per night (walking zombie due to IIH condition).

Lou, I recognize some of what I've felt in what you describe - overwhelmed, withdrawal, wanting to give up on things, confused about what to do next, just wanting to curl up and hide from it all. It turned out I was depressed. Topamax had twisted my brain around. I'm not a doctor and that may not be what's happening with you and Vimpat, but a doctor needs to know how you are feeling. Maybe your meds need changing, or addition of an anti-depressant, or whatever is needed to make you feel better.

And you need a new doctor. Seriously. For now call in and ask to talk to your current doctor's nurse. Tell her how horrible you are feeling and ask her if she can fit you in soon. Please ask your mum for any help she can give in this, because you deserve to have this addressed ASAP.

As for being overwhelmed. I still get that way. I keep lists. Everything is on a list, then I'm not stressed out by having to remember them, and it's easier to choose what to do next. I also keep an extensive calendar with what I'm supposed to do, when, with who, and all the details like what to bring and the phone number in case I get lost or need to reschedule.

Sleep... it could be the seizures, the vimpat, or if depression is involved it could be that. Wish I could send a massage therapist over there for a lonnnnnnnng massage. Maybe that would make you fall asleep?

Question about work: if you didn't have to deal with the swings and difficulties of your clients, esepcially the violent outburts, would you job maybe be less stressful? Maybe the promotion would help protect you from those things? Any way the boss could negotiate on the hours, so it's not 40? Maybe 30-40, or some work from home? If you think so ask right after you get the job, not before.

<<<<<MORE HUGS>>>>>

Know we love you, we understand, and we are all here for you.

.

 

[Nakamova]

Hi Lou, Im so sorry that things have been tough, but I'm glad you're posting here to let us know what's going on. Sometimes we don't notice when our moods are changing. It can happen so slowly that when someone points it out, it can be like a light turning on. (That happened to me when I was on Zonegran -- 7 months of gradually increasing crankiness and low-grade depression).

I hope you get some relief soon, both health-wise and with the job issues. BTW, the shivering you mention is not unusual for a post-seizure reaction, although it sounds like it's new to you. The autonomic nervous system gets messed with -- sort of like someone playing with the thermostat -- and it can take while for it to get properly re-set.

 

[Loopy Lou]

Well, I remembered after posting that that I was also shivering after one I had when I was still living in Ireland. I remember my cousin telling me that when the ambulance turned up I was just shivering, and they said that it wasn't a seizure and I was obviously just cold and drunk (seizure had ended by then, I wasn't drinking and it was a very hot day in the middle of July) this was before I was diagnosed, a good few years ago.

Unfortunately I can't change neurologist. I have to go to the one that the NHS decides. It is in the neurology centre of the northwest though, but it seems like they keep forgetting about me! I would love to get a private neurologist, it would take a lottery win. But... that's the price for free health care. Long waiting lists, and you go where they send you.

I rang the e nurse and spoke to her, she's getting onto the neurologists secretary for me, and she gave me the number to call them too.

Because of the nature of the work I do, working from home would be out of the question. I would also still have to work in the same house as I do now and deal with a lot of the same issues. There'd just be a lot of paperwork and organising staff etc too. The reason why I want it is because of what it could do for my cv and future job prospects. I've heard that the company is making cutbacks, so they may actually welcome a part time deputy manager. And it may just mean that I don't have to deal quite as much with the clients. Hmm I don't know.

Thanks for your replies guys x

 

[Loopy Lou]

Just got back from work, feeling extremely grumpy and not sure why. Comments from my mum and dad about how grumpy I am just make me feel worse, and now I also feel angry.

Ok, I'm in a bad mood, I know I am and I'm trying to keep it to myself. People pointing it out all the time does not help!

 

[Nakamova]

I get grumpy when I have low blood sugar and/or am low on sleep. Don't know if either of those apply to you right now Lou. And yeah if someone points it out it makes me grumpier too. I hope you can relax and unwind.

When I'm cranky I sometimes watch "America's Funniest Home Videos". They really do make me laugh out loud. Maybe you can find something similar to do the trick for you.

 

[Loopy Lou]

Well its nearly half one am and I am literally doing nothing apart from going on my phone every now and then. Might go play some Sims 3 on my ps3, at least then I'd be lying in bed. Got a headache again and am tired but don't want to sleep. I do have an urge to eat everything in the kitchen though lol. Better not, I have my weigh in for weightwatchers tomorrow! (wish me luck, I may need it lol)

 

[Nakamova]

Luck to you! I've been trying to shake the weight I gained from the holidays. Not easy.

 

[Endless]

I admire your will power, Lou! (I say as I munch on a square of chocolate)

 

[Loopy Lou]

Well I didn't lose any weight lol. Oh well, this is a new week!

Going to try for a doctors appointment tomorrow to see if anything can be done about my headaches. They seem to be radiating from a point on the left side of my head which just happens to be where I have a mystery dent on my head. Wondering if I've bashed it on something during a seizure. Headache doesn't seem as bad when I'm lying down. If nothing else, maybe I'll get some painkillers for it.

Endless - where's my share of chocolate lol? X

 

[Endless]

You could eat this stuff, too. Not as many calories. Hardly any sugar, almost no extra cocoa butter. Just straight rainforest choc. You eat one little tiny square and it feels like you've had too much. lol...

Edit: you'll note in other posts I said I had given up chocolate. Alcohol was easy to give up. Chocolate, much harder! I fell off the wagon and am now allowing myself one little 1-inch square of high quality chocolate a day. Heaven!

 

[Nakamova]

Maybe this will help curb your chocolate habit: Chocolate's about to get more expensive. Almost 40% of the world's cocoa comes from the Ivory Coast, and recent political instability there has significantly reduced the number of certified fair trade cocoa farmers. The net result is a shortage of fair-trade cocoa beans. Prices have already jumped 10%.

Time to start hoarding.

 

[epileric]

Maybe this will help curb your chocolate habit: Chocolate's about to get more expensive. Almost 40% of the world's cocoa comes from the Ivory Coast, and recent political instability there has significantly reduced the number of certified fair trade cocoa farmers. The net result is a shortage of fair-trade cocoa beans. Prices have already jumped 10%.

NOOOOO!!!! I'll either go nuts or broke so quickly... maybe both.

 

[Meetz1064]

Me tooooooooo

 

[Loopy Lou]

Oh noes! Not the chocolate!

Went to docs today, got me some headache-be-gone pills (hopefully) dent in my head is actually where I have a big bump next to where two of the plates join together in the skull, probably banged it during a seizure, doc thinks the headache is Vimpat related though. Heading to work later, just wanna go sleep!

 

[Endless]

Maybe this will help curb your chocolate habit: Chocolate's about to get more expensive. Almost 40% of the world's cocoa comes from the Ivory Coast, and recent political instability there has significantly reduced the number of certified fair trade cocoa farmers. The net result is a shortage of fair-trade cocoa beans. Prices have already jumped 10%.

In order to have chocolate, I will give up food.

Oh, wait. Chocolate IS food.

 

[Nakamova]

I agree -- even if I have to give up something else, I'll find a way to keep chocolate in my diet. My aunt was a committed chocoholic, very rarely ate vegetables of any sort, loved putting heavy cream on her raspberries. And she lived vigorously into her mid-80s, clogged arteries and all. I think the chocolate was the secret.

 

[Chris515]

I'm sorry to hear it's been rough for you lately Lou. I hope things turn around soon.

I've had that shivering after a tc as well. It's awful. I'm sweating but shivering at the same time. Lasts for about 5 minutes or so. But at the time it feels like forever..

I need to lay off the chocolate, so maybe the higher prices will entice me to buy fruit instead. lol.