Advice pls , just started on Clonazepam

6mg of Clonazepam a day is very low, some people may benefit on that small amount, some are only on 4mg which I think is the lowest for Dystonic disorders.

I started on 2mg years ago, with Artane for Dystonia, but now that is shot to over 30+ tablets a day, and 6 botox injections every 10 weeks for dystonia. The problem with BoTox is it has a 2 week cooling off period and a 2 week cut in period, so the BoTox only works on the Dystonia for 6 weeks. The BoTox hurts like hell when injected, because it is injected into muscles that are in constant spasm, and are solid, basically it causes muscles to swell outwards, with me thats my neck and shoulders. The Botox doesn't help my spine, or joints, so Tramadol, Amitriptyline and Paracetamol was introduced - this works but does give me some very weird side effects. Some of which only 1-3% of people get!! Typical of me..

Regards,

Les.

2mg is the standard start off dosage of Clonazepam for Dystonia. Every medicine you mentioned I have been on. Have you never seen a Neurology Professor? There are a few in the UK now, when I was diagnosed it was by a Professor in Neurology from the USA and his team, many tests were done. All over Dystonia is what I have, it started as Focal Segmental Dystonia (Torsion Dystonia) and re-diagnosed as Generalized & Cervical Dystonia last year, basically like you it affects me everywhere, cramps, pins & needles, very painful some muscles are, to even touch. I tried Baclofen, was on 8 a day, but it was pretty much useless.

BoTox is very good, I don't have it all over that would shut your body down. lol  With me, my head continously twitches to he left and pulls down by a neck muscle and shoulder, so large doses are injected 4 into the left neck muscle, 1 in the left should and another 1 in the right neck muscle. I asked on one ocassion do people have it injected elsewhere to my main Neurologist, he said yes they can do, but only if the pain is that bad they cannot live it.

Obviously, you cannot have it injected in to your legs, because you would not feel your legs, ankles or feet. My legs, ankles and feet are always swollen, and with any swollen area you get pain.

Basically, I got Dystonia first, but because its a nerve disorder it led to other problems, Epileptic Seizures, Functional Episodes and Nocturnal Sleep-related Eating Disorder, all related to the brain and nerves. I cannot go to parties because the LED laser lights cause an overload in the brain which then causes nose bleeds!  Great life this is!

I don't let it get me down, the whole property is adapted for my wife and family, I cannot drive but my wife can. And because we need large cars so I can take my wheelchair and other aids, it cost us £500 deposit, then I found I could have got a grant from Motability for the car we really wanted, only because it was larger and very cheap to run. So, next year I'm going to apply for the Mitsibushi Outlander 4x4, big car but we are also not far from a flood plane.

Regards,

Les.

BTW, That's a great YouTube video and I can see you have very similar disorders to me. The only good thing I find is Tramadol, at least it makes you sleep, but at the wrong time of day, but then again we can't win them all can we. Just had a thought while watching your main video, have you ever been on Madopar at all, I am on them at the moment but, only at half the dosage though, it is supposed to be good at full strength. I can see you have the Generalized Dystonia pretty bad, do you actually live in a house? I noticed the stairway. We were given a bungalow on medical grounds, I cannot do stairs at all.

Regards,

Les.

I'm glad you liked the Video, a lot of people have looked at it, almost an hundred Thousand.  Many of those have written to me.  I've tried Tramadol and like all the other drugs I've tried, it seemed to work for a while and then I was back to square one.  I'm now getting to the stage of being totally fed up trying to get something that will as least give me some respite from constant movement and sore muscles.

I now live in an apartment which I bought a few years ago.  The house in the video is and old Victorian place in which I used get up the stairs on my backside!  Right now, I don't believe I could do stairs unless there was a crock of gold at the top of them.

Have a nice day.

Paddy

Yes, I agree the Original Kindle was a good display, my wife had one. I bought the Kindle HD, and used it mostly to watch Amazon Prime on it. Back then there was no NetFlix App, so I ditched the Kindle HD for the iPad. With the iPad we dropped Amazon Prime it was not worth the money compared to NetFlix. We are on Virgin Media and have the TiVo package which I bought NetlFlix directly from their website. TiVo has the NetFlix App built-in, and we have 2 TiVo boxes, one in the Lounge and the other in the Main Bedroom. We have 2 children still living at home, my youngest daughter aged 14 and my middle son aged 20, they both have access to the TiVo boxes via the iPad App and also Netflix direct which is quicker due to it being on our home network.

The 'Darkweb', well you've heard of the web and go browsing shops, forums, banking, etc. The Darkweb is an area of the web that cannot be 'blocked' because it doesn't use normal browsers. Cameron tried blocking 93 websites so people could not access them, but the guy does not know how the internet works, if he did he would have known trying to block websites from an ISP will not work. To take down such websites much more power, which he does not have.

I know that feeling Paddy, it's fustrating not being able to do things, that at one time you could. My Occupational Therapist got me a hospital bed, which was delivered on last Wednesday. There's me struggling to get from a wheelchair to the bed and into a comfortable position, my wife said "You have to use the bed remote to get yourself in to it!" - after a few failed attempts I managed it this morning. I think I will contact my OT Officer to see if I can have a half rail fitted both sides. I was used to the double bed with my wife, and having a white metal bar to aid me getting out of bed, of course this bed doesn't have that but it looks like you can having one fitted. Like you in your video, I struggle to get easy things done, and one is lying on my back in bed, and trying to turn over on my side. The times I have tried is unreal and yes, it's painful to do, let alone to accomplish such an easy task. the other day my wife found me asleep and somehow I had got myself lodged halfway up the wall!! Gawd knows how I did that. At least now I can push a button to get me in to the sitting position - the week before I was in that much pain it took 1.5 to 2.0 hours just to sit up, the pain in my spine is just so darn painful.

Getting dressed, sometimes I can do it to a fashion - but most of the time my wife helps me, I cannot even reach my feet to put socks on, mainly because my legs, ankles and feet are all swollen and painful to touch or even bend. I was amazed how you got around, mainly on your bum - but at least you get around like that. I know somedays I think to myself I hate Dystonia, but I cannot stop it - it takes over your life in such a way that you have to adapt yourself to new ways of doing things, but there are many things I cannot do at all regardless of what I attempt, I get either fed up, frustrated or give up. However, other times I sit back (so to speak!) and think there must be a way I can do it, if you think logically, which I do many times sometimes I over come barriers, but as you know yourself it's not easy.

Sore muscles, cramp and twitching is a 24/7 thing, basically unless I get a good nights sleep! Now that is very difficult - considering I have my wife awake 5-6 times at night, I find myself being a burden on her - and she has always been there. Well, I have got a new Review coming up with my OT Officer, so hopefully she can come up with some better ideas. I am going to see if we can get a single bed for the main bedroom, we have a double-bed - then out of the blue we had a phone call saying a bed was being delivered!! And, like someone pointed out to me, what happens when Paramedics get to you because of the space. The trouble is you don't think of these things, so my wife needs to give up her bed, and we need to save money for a new one! I tried getting grants or loans, the same answer was we cannot do that for a carer, even though she looks after me 24/7!!! It's made on how this gov't is treating us, for things that we could never have prognosticate the future.

I watched that you made and thought one thing, how many people look at it and realize how much pain and energy every move it takes for you to get around? Some people probably, do not realize just how painful Dystonia really is, unless they have it themselves. You done a real good job there, and I guess you are like me and unable to even stand up, if you fall down from one position.

Regards,

Les.

P.S. - I'm now going to look at your website, you intriged me last night on  YouTube, I played the video twice because I wanted to show my wife.

Yes, I noticed - I was read quite a bit anyway. It's a standard Wordpress blog site.

I'm not your average guy that knows very little about the web, I know a lot more than most, right to servers and set ups. I can install and setup servers, etc. The way I viewed your website was by taking it back in time, so I actually viewed it what you had on it in August 7th 2013.

So, it's a 'cached' copy of your site, it does go back to 6th Feb 2002 and has been cached 160 versions over the years! Quite popular from what I seen.

Click on the Thumbnail thats what I was looking at...

I used to code and design websites, nowadays it's case of using two hands just to get the mouse in the right place. If you wanted to know how I did that, I would have to Private Message you the address where you enter your website.

Regards,

Les.

All I put was I viewed your website by going back in time.

Regards,

Les.

I'll give you a word of warning, Wordpress is the most lax on security scripts around. I used to use it, in the end I gave up and designed my own.

I used to fix websites/blogs/forums that had been hacked, well basically kids using "scripts" they aren't real hackers - they just like to think they are.

There are ways of securing wordpress down better, by moving and renaming the admin panel.

Regards,

Les.