The disorder is called Tuberous Sclerosis Complex better known as TSC.
Hi Karen,
I am so glad you were able to say what you have, which is rare - many people do not disclose a rare disorder, which is understanderable in many cases. I looked it up on the NHS website, it is certainly not a nice disorder (but then again, what is these days?). I try and keep up with disorders, because they interest me, and how people cope on a daily basis, I am no stranger to rare disorders.
When I was initially diagnosed by a Professor in Neurology and his team from New York, USA, I had to meet him in the Queens Hospital, Queens Square, London which is situated just around the corner from the Great Ormond Street Hospital for children - it took them nearly 2 years to diagnose that I had a form of Dystonia, and at the time I was only the seventh known case at the time.
It is still not a very well documented disorder even now, in England I am under the top British President of Neurology Dr. Geraint N Fuller. He is a well liked professional in his field of work, and been in newspaper headlines for curing a woman with MS.
A poem Dr. Geraint N Fuller wrote in April 2013, which captures many people with nerve related disorders is this:
I Come Armed With Words
Starting with the history, your story,
I help you find the words to capture
Unfamiliar feelings of disorder or disease.
A translation of sensation to explanation.
Words of kindness, thought and hope
Can give the desperate some rope
To hold above the bleak abyss
When future becomes but prognosis.
Warm words can wash away
The wailing of a weeping woman
When bitter pills and sharp scalpels
Treat the heart though not the spirit.
As but a mortal and physician
The tests and drugs I know are flawed.
And therefore to complete my mission,
I come armed with words.
Many of those words are so true, not just for my condition but many others as well.
These days what people used to class as "old wives tales" are not at all what they seem. Getting awareness across to people is difficult, when people ask me what is wrong, as in the main disorder they always think it is either MS or ME, none of which are even close. If I tell them the correct medical term then they are totally lost.
What got my attention with your rare condition was the fact Epilepsy is a side-effect of your main condition, which is exactly how mine started, but I was not born with it. I had an accident in my early 20's which disabled me for life, and I was told it would become worse the older I got, which was correct as well. But having Epilepsy and living with it on a daily basis is a nuisance because you cannot tell when a seizure is going to happen, if you did - you could plan around it - but our lives are not that simple, are they, and never will be!
I guess we could hope for a miracle drug to cure all ailments - which would be nice, but not in my lifetime.
There are quite a few rare disorders I have come across, one of which is my nieces daughter, who was born with Beckwith-Wiedemann Syndrome. This normally affects infants more than adults, but the danger period is "0" to "8" years old. My nieces daughter had cancer at just 6 months old, she had 3 major operations in her first year - she developed cancer in 3 areas, she is now 4 years old and in remission for another 3 years before she gets the all clear. Everyone loves her to bits, she is such a character.
Well, what a nice start to the day, a really depressingly dull looking one at that, jolly old England for you. I wonder if we will have the hottest Halloween on record and the 36 days of snow forecast, probably not, considering the forecasters never get anything right.
Anyway, Karen I wish you well (okay, as well as can be expected! lol) - that bugs me when I'm in hospital and you get visitors asking "How are you?", well I could go in to detail and bore them to death, or just say I'm fine, even though I feel bad - but then I would be lying! lol You cannot really win with that question. 
Regards,
Les.
Hi Les, I want to thank you for your kind words 😊. I'm not going to delete the notification I got via email because they're so appropriate. As you were saying 'how are you', what I never say is 'good luck' because there's no such thing. I always say you make your own luck in how you manage life. So best wishes to you Karen
Hi everyone,
i want you all to know this morning I decided I'm going to do whatever it takes to find one "positive" a day through this...
why?......because I've been angry with myself all night about being taken advantage of by a close family member o the tune of $205.00 yesterday and it's my well being that's paying the price for it.....
unless anyone objects I'm going to list them here every day one at a time..
1- if this hadn't happened I'd never have known you good people exist and that we're all unique with our on individual story ....... I'm well aware that there'll be days when trying to find that positive thing will be difficult but I'll do my best.......have a great day :-)
Stress and epilepsy is a Bad combination so take care Allen. Anything that reduces your stress can be a bonus. ☺
yeah.. people are so thoughtful - my own favourite 'least favourite' is "hope you get better soon".. like, i've had my head cut off but they "expect you'll manage to grow another one in a week or so, dear"! ..lol
Hi Karen
You're so right and you've dealt with it far longer than I.
God bless😊
5 days to go till you up the meds.. we'll all be around to hear how it goes when you do. i for one will be counting those 'one a day' positives as you list them along the way!
winnie's thoughts above are great but i'm a little worried about lines like "we deserve a weekend of happiness". blimey, if i'm going to get what i deserve i'm DEFINITELY in trouble!! 
..and karen - i believe you just hit the nail right on the head re the epilepsy/stress thing. well said.
Hi Allen,
Being "positive" get's me through most days, even though I have had a bad one, probably sounds stupid.
Take yesterday as an example, it was all going well until I tried to do something that a person like me should not do. I have to use a Zimmer to get around the place, regardless if its a short or long distance, well I class it a long its only a few metres. I decided to try and go to the bathroom without no aids, instead use walls and other furniture - but I mis-calculated the distance going in to the lounge, lost my balance and fell down, banging one knee on the door frame as I went down. I got back up with the aid of my son and into my chair.
So, today I got a nice black bruise and grazed knee - because I tried to be more independant. With me though, it's a kind of fight - I am continously fighting Dystonia all day, it always wins, yet I never give up - regardless of what happens.
I used to look at life with a "negative" attitude, but all that did was get me down, depressed and totally unhappy.
I started reading books on the web, true stories which interested me, and because I am creative anyway, I try to write my own stories, but it is difficult. There is always one thing trying to stop me, Dystonia - it's like everyday, I must fight it, and come out feeling "positive". Day in, Day out - but then I think and know there are many people out there much worse than myself. I know many people think how do I cope, but after 30 years with it, and still progressively becoming worse I will not let it beat me.
I look back over the years, and thought no way will I ever sit in a wheelchair, because I seen how people treat you - it is like being 'alienated'. But that day come, I had no choice and thought what the hell, other people are in wheelchairs and they may feel 'alienated' but they do not let it show, so why should I be any different!
Allen, we are unique for a reason, hence it would be a boring world if were all the same. I know there's no one like me, even my own Neurologist calls me a complex case, but he always shakes my hand everytime I see him, the same applies to my own Doctor, she even asks me to go and see her, so she can get new training doctors to meet a person with Dystonic disorders, and which ones I suffer from.
I know people should not take others for granted, and even being Epileptic should not mean they should take advantage of you, but look at it from a different perspective and what would you have done with the $200 yourself, I know that is quite a substantial amount of money in our currency - if it was me, I would class it has a "loss" and just avoid the person, and never have anything to do with them again. This day and age, people like ourselves think we are easy prey, hence take liberties, when they shouldn't - if someone gets me to irrate then I will shout at them why. But that's me, I have learn't over the years - people see me as an easy target, or my wife - then again, nobody would cross my wife if they know whats good for them.
One thing that really bugs me, is these people in large BMW cars, park across 3 spaces for disabled people. It is annoying I have to pay £15 for the EU Exemption Disabled Parking Badge and you get these stuck up people with nothing wrong with them apart from being too lazy to park their cars properly.
Enough rabbling from me, read the Poem my Neurologist wrote that I replied to Karen's message, it will calm you down and put you in a positive mood.
Hope the rest of your day is better, I started writing this message hours ago, but I cannot type that fast and suffer from spasms in my hands, which is why I write long posts, but take hours to reply! Can't win really, but I get there in the end, that's what counts. 
Regards,
Les.
Hey Les,
i enjoy reading your stories and "instances"
you must have a million friends
Allen
Hi Allen- I wish you well with the Keppra. I was on a similar increasing graduated dosage of Keppra but unfortunately had too many side effects and wasn't able to reach the higher dosage so had to shift to other medication. I suggest you inquire about clobazam ( 2 tablets of 10 mg each is the dosage without Keppra so could be lower if in combination with other medication. The other medication which neurologist is enthusiastic about is limotragine but while the latter can be taken with clobazam , at least during a titrating up on the latter and gradually weaning away from the clobazam, I don't know if limotragine ok to take as a companion medication with the leviteracezam ( Keppra).
Good luck finding the effective medication and dosage that gets you to a seizure free place and sustained... I am not there yet either, but promising signs of ever longer intervals between seizures at least. I am same age range as you. Stress reduction efforts also reasonable and characteristic advice!!
Hi Evelyn ,
I'll be up to 1000 mil a day on Monday and still phasing out of the depakote....
geez I don't know I'm trying to stay as upbeat as I can but today has been lousy 
continual petit mal seizures from 8:00 this morning until about 9:30...
then again this afternoon another episode and I've been in the tank ever since....id set a personal goal yesterday to find at least one positive a day thru this but today it not happening.....
i have another appointment with the neurologist a week from Monday and will keep your suggestions in mind,
thank you dear lady,
allen
hello again allen
first re evelyn's - does lamotrigine 'go' with keppra..?? i've been doing both together since the beginning of the year; was on 1200 tegretol / 2g keppra at its worst.. last year was spent with them reducing the tegretol and when i was almost off that, started with the lamotrigine. as i said above they're not great but are light years better than what i have been on over the years.
had thought your 14 days meant you upped the keppra midweek but see it's sooner - yes, the raise may well knock you for six for a while but you're probably used to the disruption of med changes - chances are it will settle before too long. i can only speak from my experience but i'd say hold onto a little hope that they'll do more good than harm.
i'm so sorry you're struggling to find even a single positive through the flood of episodes you speak of.. it says you wrote that 13 hours ago so 'today' is probably now 'tomorrow', if you see what i mean.. hope you're having a calmer time of things.
as ever, all our best wishes go with you; you must surely feel as though it's all resting on what happens this coming week. take heart and make it a good one!
Hi mo..
im watching the lions and chiefs in wembley stadium right now and it's almost 10:00 o'clock .....
kinda helps me distract my mind a bit...
thanks mo
ur welcome allen 
"rah.. rah.. rah! ..go chiefs"!!! (or should it be "go lions"??!! ..hahaha
ps. ..no idea how second 'wink' smiley thing appeared there.
anyone else noticed they don't even give us a regular, honest to goodness, straightforward, simple "smiley" option???
curious.
D-DAY +1
hey allen..
hope upping the dose yesterday hasn't left you too battered; who knows? you may even feel it counts as your "yesterday's daily positive" if it hasn't hit you too hard. do let us know how you're getting on with it all.
Mo-jas, the smilies appear because certain characters, rephrase that, combination of characters together are parsed when posted within a message. In the database, they are stored as normal characters, but change when displayed in new messages.
The actual coding of these message boxes is one that is coded in to forum scripts, there are numerous functions with the one they use on here, but they keep it very simple and most of the functions which were good are not even enabled.
If there was enough of us, we could ask to have a certain function enabled, it only takes one person to put the idea forward and others need to vote on it. Then it is put to the developers, whom hopefully would put it in place.
The character problem is caused by "parsing" code incorrectly, it is easy to fix, I only know because I used to code add-ons for forums.
Hi mo,
Day two just taking keppra.
What an unpleasant ride.
I'm very tired and totally bummed...
Actually looking forward to doc appt next week.....
Does anyone ever feel like what did I do to be blessed with this "life altering nightmare"??
I go to Hospital Thursday 5th November I jusy hope when I tell them what amount of Keppra and phenobarbitone I am on they will listen to me !! pig just went over my head lol
Keppra made me zonked out and all I did was sleep was on 750 am and 750 pm and on phenobarbs of 120 pm and 120 am. Doc up hospital told me never too take more than 90 phenobarbs in mornings so I am down to biting the bitter pills in half yuk. Phenobarbitone works with it but it's an old drug they give dogs .. No Comments please !! ha Do you have them every day Allen ? if so must be awful for you ..just an update on my pills so I remember what to tell Doc on Firework Night Day xx Bye All, Karen be well xx
Mumbles Keep Well All !! as I dont know how to end it lol xx