advice /Second opinions sought .

[wul004]

helo everyone! would really like some comments please on impending Radical changes to my usual medication,(long term!), regime;- am currently taking,(when I remember to!!?),..

200mg Lamotrigine...1500mg Keppra.....Tegretol retard.1200mg all Daily...Changing to;- 200mg of Lacosamide Daily.???

Never heard of this drug and am not Looking forward to the forthcoming trial & Error of 'coming off' existing drugs!!

I done it at the age 30years old, I am 56 Years OLD this time but now live Alone.

..Gulp..!! Any comments/advice Gratefully accepted..

[EpilepsyAnne]

Hi.. I'm afraid that I don't have any knowledge re your new medication but hoped you don't mind if I comment on your 'if I remember' bit. I know it is absolutely vital to take your meds for epilepsy at the same time every day, properly spaced out. Not doing this can have real consequences on their effectiveness, much more than you would imagine.

The way I do this is to set alarms on my phone. These, for me, go off at 9am and 9pm exactly and I take my pills right there and then....no matter where I am! I play poker a lot in the casino and when my alarm rings I now get calls of 'take your pills Anne' as they all know what the alarm is for. At first I didn't want to get out the meds and pop them in a public place but when I realised that I was not spacing them out properly - and I could very much feel the effects - I said 'sod it' - and don't care who is there. My brain comes first!

Is there any chance that you are being so irregular with current intake that it could be having a detrimental effect? Is there any chance that if that is the case, and you tightened that up as I have done ( to amazing success) you might not need to change? I found that nobody really stressed the importance of this and I worked it out myself. Hope you don't mind me picking up on that, as I know it's not what you asked!

[wul004 in reply to EpilepsyAnne]

That's Kool Anne! Tanx .V. much for taking the time to reply! most Hearting to know I do not live in 'splendid isolation' as regards excercising a little 'non selfish' T.L.C. towards a complete stranger!!,(that being me of course!!)..gasp!!.

anyhoo! is all by the Bye!!..as my seizure set-up was fine Untill I was forced to take H.M. Government to the High Court as part of my appeal process for Dvla payments and official recognition of my status regarding fitness to work...I was Victorious ,(by the way).

in my Appeal!!.and beat the Bastards!! on May 5th last year,(2017).

when I had a Massive 'absence' lasting 2hours after I opened the envelope containing the courts final decision!!! --Coincedence??? think not!!?----Don't Believe in them!!

the Blame for my current predicament is down to H.M.Goverment's Heartless policies regarding a persons ability to work .??!!

So there!! prime minister.

Sorry for Going on Anne ..I Never even relealised how I realy felt till I started Writing!!!

Embarrased silence descends upon the reply box??!!

[EpilepsyAnne in reply to wul004]

Hi again. You're absolutely spot on re what's a 'disability' and what's not in the eyes of the Government - well done for winning your appeal. On the subject of my response ...not a problem. Nobody should ever feel alone when they have an illness - talking is good. Even just to know that someone is there who has 'been there, done that' does help. Feel free to yak at any time if you are feeling isolated.

[wul004 in reply to EpilepsyAnne]

Hi Anne thanks for your wee nuggat of Wisdom in reply!..i'm a Shy person by nature so usually just reply to my pals with nods / Grunts/ eyebrow lifting!..etc.etc…

Or the usual 'textbook' meaningless platitudes if I think they are looking especially worried....I also think to realy heal yourself 90% of the process Starts Within your own Brain,('Mind over Matter'??)..

This Leaves me preferring to 'Seek out' the company of people in 'good Health' if I can,(be bothered!!)

This attitude usually is Positive and works for me!!!

only Downside is I am forever getting myself into trouble,(healthwise!)..by doing the most idiotic of things just to show i'm Normal,(?), for example;- 6 month ago I fell 30 feet out a tree I then impaled myself onto a small tree at Ground Level Forcing 8 inches of wood into my Lower torso via my Scrotum!!..my Life was saved thanks to a Six Hour Emergency operation performed by a Beautiful 6 man Surgical Team right here in Sunny Kirkcaldy./ Fife ./ Scotland.!!!.followed up by a Seven week stay in the Local N.h.s. Hospital. Where I was spoiled Rotten by the most Excellent attentions of the Nurses..Doctors..Caterers...Cleaners!!

[Beansheen]

Hello,

It’s never easy changing a drug regime you’ve had for so long - I’ve been in that position too and and resisted for some time my neurologist’s advice to take Clobazam. In fact, once I tried it, it has worked well for me. So, changes can help! However, are all those drugs you’re taking being dropped slowly leaving you with just 200mg lacosamide? If the neurologist feels that’s enough then brilliant as I guess the amount you were on was quite tiring? Whatever the procedure, I totally understand you’re worry at the moment but do advise you to follow advice.....I also agree with the previous comments regarding regular timings of taking the daily drugs, I have an alarm too....vital for evening tablets in my case! Good luck and hope all goes well.

[bowland]

Hi,Just read your post and like our other friend l haven't got a lot of knowledge myself about changing medication for Epilesy . The nearest to this is when my Phenytion waa changed to the generic to save money ,I had been on this medication for 20 yrs and my body told me of and my doctor put me back onto the original but this wasn't without a fight tooth and nail urrg.

Congratulations about your High Court Appeal ** Been there and done that myself .My Epilesy came after removing my Brain Tumour and after years of starting with your a lucky lady to now sorry you have five tail extensions hard to reach areas (sorry I'm changing the subject)

About taking meds like your other replies your body does tell you to have a routine . At first I didn't like the public eye to see me taking them out of my beeping medication box ( I have been left quite deaf ) but it continues to make noise in intervals till you take them . Just wishing you good luck and keep talking xx

[wul004 in reply to bowland]

Thanks bowland your comments and 'self truth(doms!), all well read, Slowly, obviously! ..have other people noticed that your brain's internal speed/reaction! totally dropped at least 2'gears'??? or is it Auld Age?!.

[bowland]

Hi as the saying goes ""You are what you are "" and if people can't take it change friend's . From my Brain op I couldn't do A to B or pick the kettle up so had to get around that bought a device were you put the cup under press a button viola your brew is made ...Sending best wishes hope you medication will get sorted , sometimes asking the chemist questions ( depends if you have a helpful one) good luck

[wul004 in reply to bowland]

once again! bowland Ta V.much our kid!!.I have a superb pharmacist(?) Only person that

a...believed me!!

b...Helped me When I was bitten by an adder few years ago!,(Exceptional conditions for snakes this area of Scotland!!)..Even my Doc had a wee chuckle when I showed her me bite marks!!..auld family friend Great G.P. !!,(think it was my usual 'good luck')..

one Million folk in Scotland am about the only one Actually Bitten by an Adder!!..Story for another day!!?

anyhoo Chemist??… Neil..Extremely helpful on all matter of subjects!!...pity he has taken year 'off ' to See the 'world'!!!

p.s. bowland ?? hope am not overstepping the mark??...am 56year old well worn Mr !!

Pictish by birth and temperament..