Phenobarbitone since 15 now an oldun with epilepsy

'ho ho ho' and merry christmas, all ..oh no ..it's new year - have a good one of those instead! ..lol  ;o)  hi winnie and sorry to hear you had such a ratbag of a time with your meds ..especially considering it's the time of year for goodwill to all men - don't imagine you've been able to include your docs in that!!  mine's been a mix of a great christmas and a little run of seizures threading through to spoil it a bit ..nothing bad and no injuries so kinda counts as a success! ..hmmm  

and hi again to allen - sorry been so slow getting back on your remarks about the specific 'welding' smell.. auras - frequently herald the onset to a full-on seizure and are absolutely well observed.  mine became everything from an 'early warning system' counting down through 'the beast is in the room' to 'here we go'.  the irony was that the first thing the meds did was take them away so for a year or two i was just going face down in the furniture and breaking things!  seemed to have got better at spotting them heading my way eventually so i hurt a lot less now.  mine were, amongst other things, the taste of a battery on the tongue.. crazy fairground music with a 'waltzer' roundabout, horses going up and down and the oddest one was standing right next to a rocket as it lifted off - all accompanied by that 'deja vu but can't put my finger on it' thing they're always banging on about.  if you can spot auras, make them your allies - they might just save your life one day.

oh blimey steve.. hello, but i REALLY coulda done without looking up the stevens-johnson thing.. firt wiki item in google showed a 'so wrong' picture! ..lol  on the other hand, i'm sure i remember one of my med's info sheets had the line 'and other possible side-effects up to and including causing death'.. thankfully i look at all that kinda stuff and think 'nah.. they're talking about the other guy'.

i'm on keppra and lamotrigine too ..it's interesting to see how each of us react to the things and the common themes ..speed of changes, different drug combinations and especially of inexplicable anger bubbling under.. i characterise mine as 'frustration' but it's all the same thing.

right now tho?  happy as larry and only hope all you good folk are too!

so happy 2016 and hope we can all look back in a year's time and can say 'made some progress; things are better'.

jas. x

Hi Winnie,

Dang he must have an incredible voice!!

 ..yeah rite ..'the man' ..hahaha

Hi mo-jas and the Etc's

I didn’t mean to scare anyone with the Steven-Johnson syndrome, but Lamotrigine seems to be the highest risk of developing it. The percentage is very low, but I thought I’d mention it. My Dr never brought the subject up. I only know of it by reading the same warning literature that comes with each prescription refill. Then I had to look up what Stevens-Johnson was on the web. Drugs have such marvelous side effects, NOT!

 

I don’t know where it originated, but everyone have a Happy New Year, whatever that means. The sun didn’t turn purple or rise in the west this morning. Gravity didn’t change, unfortunately I still weigh the same. My coffee doesn’t taste better.

One or two glasses of red wine may be relaxing and reportable may be a benefit for some epileptics. A few years ago my Dr mentioned this in a lecture given to a group of epileptics. He’s never recommend red wine in my office visits. I stayed home last night (as usual) and for New Year’s I had a couple glasses of red wine. I have a slight hangover this morning. What’s up with that? Apparently my lamotrigine and levetiracetam doesn’t agree with a couple of glasses of red wine.

 One of my New Year’s resolution is to be neater and more organized. Hades has a better chance of freezing over.

 I don’t want to offend anyone, but I’ll post a little humor from the comic George Carlin to start out the New Year. His voice presentation really makes it really funnier than reading it. I have shortened 3 words to dk, fking and _ _ _ but you can fill in the blank. I think the promise of medicines have the same ring to it. They say humor is the best medicine. No offense intended, just humor, sarcasm of the potential promise of Dr’s and meds like a sells commercial on TV. (Over here in the U.S., drug companies are allowed to advertise their prescription drugs. The list of side effects seem to be worse than the benefits).

 

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awwwww steve... you missed it - it was a spectacular purple sunrise out to the west to wake up to ..well actually, woke up cos i found myself floating round the bedroom ..would havve told you earlier so you didn't miss it but couldn't get to the keyboard ..it kept floating away!

one good thing, the coffee tasted awesome!!

haha.. yeah, g.k. rocks ..bet you can think of 7 dirty words to call your tele-selling doctor friends, too!    ..lol - absolutely no offence taken.  in fact, i'll throw a bit of bill hicks straight back at you on the subject of advertisers and marketing..

"By the way if anyone here is in advertising or marketing… kill yourself... I know all the marketing people are going, “He’s doing a joke… He’s going for that anti-marketing dollar”.

funnily enough, not as biting as george's but i remember south park using the same gag.. old ones are the best, huh??

can't speak for wine but since i haven't drunk alcohol in over a decade (no go with tegretol retard).. upside is i swear i got drunk on the brandy butter with my christmas pudding!

lastly, no worries steve ..don't panic - you're not actually going to really, definitely, have to get neater and more organised - i had a word with the boss at head office and he says it's still warm as toast down there!    ..nyahaha!  ..phew.

​given it's 1 a.m. here, to finish on another quote - "and so to bed!"

nite folks.

 

* 'not as biting as bill's' rather than george's ..tchaaa!

..yeah - it really was too late to be typing last night.. should have known better!

typo #1 ..g.k.  - since when was carlin spelt with a 'k', huh? ..apologies george.

come to that, the southpark tale wasn't as savage as bill's or george's spiels but it was a pretty full-on indictment of the television shopping channels, nevertheless.

..funny, too.

hmmmm.. southpark is in colorado, isn't it allen? ..lol   

 

Allen

When you mention CBD, I don’t think many people know what it is. It’s a chemical compound in mj (can’t spell it out over the censorship) that doesn’t give a “high” effect. That award goes to the chemical compound THC (recreational use). You could swim in a vat of CBD and not get high. CBD has shown to be successful in some severe forms of epilepsy. The most famous case of using CBD was reported by CNN’s (news) Dr. Gutpa, a neurologist, who covered the story Charlotte, a five year old with a severe form of epilepsy known as Dravet Syndrome which begins in infancy. She went through an average of 300 seizures a week. An experimental drug, Epidiolex, which is 98% CBD and only approximately 0.1% THC, decreased her seizure activity to once a week. Ironically, GW Pharmaceuticals is based in the U.K. but they are developing Epidiolex here in the U.S. From what I know, they are in the final testing stage.

Epidiolex, like other meds, hasn’t been successful in all cases. I don’t know why, but the test studies have been limited to those of 18 and younger.

Both CBD, THC, or a combo of both have been shown to effective or at least beneficial to a wide range of medical conditions. MS, PSTD, pain med, brain injuries, lessening the bad side effect of chemo therapy, etc.

Years ago, I asked my Dr about mj before it surfaced as a potential use in medicine. He didn’t believe in it. I doubt he has changed his mind.

One drawback of an open market of mj, CBD or THC, there is no guarantee of strength and purity. Allen mentions purchasing his patches from Colorado. There is one firm in Colorado that originally supplied GW Pharmaceuticals with a high purity of CBD before GW farmed their own. (can’t remember the name of the co.) They still sell it to the public over the net. Legal in your area? I would do an internet search to find out what company originally supplied a high purity of CBD before I bought it. I think they have purity standards… the rest? I’m not promoting everyone use mj, just from what I’ve read.