After 18mths of symptoms and various medical tests for eg DaT Scan, MRI and SSEP
just started on clonazepam and see specialist neurologist again in Aug, can anyone advise whar questions to ask and has anyone with this condition tried clonazepam ? Was also supposed to start on propranolol but am worried because I have low blood pressure so will discuss this at next app.
thanks in advance
theresa
Hi Tezes,
I have Generalised Dystonia, Functional Episodes and Epilepsy. Myoclonus can be treated to an extent, but theres no known cure - which is the same in my case, it can be very frustrating. Clonazepam can help, that is one medication I take to control it. You mentioned the use of Propranolol, which version of Myoclonus do you suffer from?
Don't know type of myoclonus just that the dystonia affects my arms legs and lower jaw with a jerky tremor causing spilled drinks and unsteadiness going down stairs etc. also have jerky movements of my left upper arm when I'm in bed and right foot when I'm driving reaching for pedals. The neurologist that I see specialises in movement disorders and diagnosed dystonia. I presume it's called myoclonus dystonia ?
It seems in your case that the consultants are stating that you have a form of Dystonia (probably generalized) which is underlying nerve disorder and causing Myoclonus. Taking a medication like Clonazepam can reduce the effects, but not fully stop the jerking movements.
Trihexyphenidyl (aka Artane) can also benefit people that suffer from Dystonia symptoms (it is also given to people with Parkinson's disease, because it is used to treat muscle spasms, tremors, poor muscle control and stiffness in muscles. You could mention this to your Neurologist consultant and see if it would be beneficial in your case. Please note the side-effects from this medication can seem that it is causing jerking to become worse. I take this medication for dystonia (generalized) and have been for nearly 30 years, I have never been taken off them.
Thanks that's helpful, I see Neuro next Mon 4th the drug you mentioned sounds like it would deal with all my symptoms, not sure if I have muscle spasms. I do get aching in my hands and arms very easily with use, even holding my phone or mini iPad, like I have been gripping it for a while. Sometimes it's an ache sometimes pins and needles sensation also had to stop knitting coz hands ached, don't know if any of that is related to my condition. I will discuss/ clarify diagnosis & meds on mon at app don't think clonazepam is having any effect yet but I am tolerating it well so far. Just started 2 weeks ago though and on lowest dose 0.5 mg at night.
thanks again for advice will post again after app,
Theresa
You're welcome. I get aches and pains when trying to write, my writing starts off okay but becomes worse the more I do, until its totally unreadable even to me, yet alone to anyone else - the pain is like writers cramp and effects my hands, wrists and arms. Generalized Dystonia does effect most limbs, that is why I was re-diagnosed last year. Before it was classed as Focal Segmental Dystonia, but that was back in the 90's and it was rare back then - and less limbs were effected. There are numerous drugs that can help you with Dystonia, some tablets cause side-effects so doctors use other meds to conteract them.
Botox is another medication which can be administered, but this is only injected in to muscles that effect you badly, I have it in my neck muscles and left should every 3 months.
Madopar is another, but this is a drug that is normally tried when the above fails. However, both can be given together.
There is also a cure, but the chances of success are very low, and not even I would opt for this way. I am disabled in many ways, but I rather be living and enjoying life the best I can, and watching my children grow up.
Just a few more options you have available to you! Hope you get on well today! 
Hi again
app went well, neuro told me I have dystonia, dystonic tremor and myoclonus. This is the info she gave me:
. clonazepam is her first drug of choice with add on proponalol. 2nd choice topirimate, she made a list after that so will have to wait for her letter as I can't remember them.
. dystonia in most people only affect trunk upper limbs head neck areas. So although didn't say the word generalised said it's a rare form that I have as it affects my legs and feet.
. My body has a exaggerated response to sudden noise, being surprised etc and anxiety, stress is part of the condition and being anxious or stressed makes symptoms worse.
. A third get better on meds, a third symptoms stay the same, third deteriorate
. Didn't specify type of myoclonus just that some people with dystonia get it
.she wants to repeat the DaT Scan in a couple of years time but at this mo I do not have Parkinson's ( thank goodness )
.suggested I cut down working hours and driving if poss to reduce stress and getting good night sleep all help ( I work F/T and have very stressful busy job )
Well that's it in a nutshell so now have some decisions to make re work, I have mtgs with HR, Occ Health union rep and pensions agency.
will now wait for letter then back to GP to start increase of dosages of meds etc, .........
When it effects you legs and feet, do you suffer many cramps - tightening of the muscles or spasms. My form of Dystonia deteriorated over the years, hence why it was re-diagnosed last year. There is another option but it does not suit everyone and not all Consulatant Nuerologists will even administrate Botox to leg muscles. My calf muscles are constantly tensed, and many times cramped, which is why I'm on Tramadol as well.
Many people think I have Parkinson's, similar in symptoms but entirely different. I was put off work due to insurance purposes, which caused me to be a danger to myself and others. Two of those medications I have never even heard of, I must be behind the times. lol
Yes I get jerking muscle spasms calf & feet and cramp in feet, usually at night when I go to bed and when I wake etc. so not constant at all, get jerky movements in right leg and foot when I'm driving, moving from brake to accelerated. She couldn't tell me whether my condition was still developing or deteriorating I only know I am still getting new symptoms. Neither could she tell me whether the drugs will work or condition will deteriorate despite the drugs, only time will tell. I agree symptoms are similar to Parkinson's so I understand why she referred me for a DaT Scan and why she wants me to have another one in a couple of years because people with dystonia can develop Parkinson's and visa versa. I am lucky because I don't have too much pain apart from aching and the cramps in legs feet.
Hope me that info is helpful
take care
Hi Tezes,
just thought I'd say hi as I also Dystonia and Myoclonus with an Athetoid tremor, all symptoms of having Cerebral Palsy.. I take clonazapa plus baclofen as well as pain meds to try and help with the movements and chronic pain, but I was put on Sinemet last February to try and reduce the Dystonia movements/jerking as it have gradually become worse over time.. Mine is generalised and more severe on my left side, but my head also twists suddenly to the right and I now get night spasms/cramps in my legs and feet that get quite painful..
This may sound crazy but try and think positively as I find stress and worry robb as of the other small plesiosaurs in life.. Take the good days and try to use them to accomplish something you may like, I paint as I find it's good hand therapy and I do enjoy painting in my own abstract way.. I also play Boccia, a game similar to bowls but more for people with a quite significant disability, and it's also good exercise for my arm and hand function and helps to teach coping skills with my brain and reduce the movements a little..
Sadly there is no cure for this kind of illness except the medications doctors prescribe for th systems, but there is a lot of life ahead of us that I want to enjoy - warts and all..
Over my lifetime living with quite significant disabilities - I've found one good piece of advice, 'a positive attitude is fantastic medicine'..
All the very best Tezes and please remember, we are all in this together.!
Take care and try to have a good laugh each day, (even on the not so good days), as this helps with the depression.. Mike
Hi Mike,
Tezes and myself assumed it was just us two that were on this website that suffered from a form of Dystonia. Mike, I appreciate you taking the time to write the details of how Dystonia affects you. I have found it rare to find anyone on the internet that has Dystonia and their head jerks to left, and mainly all my right-side limbs are all affected, my mobility is has become worse over the years. And like yourself I get very painful spasms and cramps in my legs, mainly at nights.
This may sound like a silly question but what is Boccia? - another problem I have is hand coordination, I cannot control my right hand properly, mainly from spasms, but also my brain sends the wrong signals at the wrong times which is a nusiance more than anything.
Taking up a hobby is a good idea, I used to draw to very standards before this problem poked it's head in the way, now I cannot even write my signature twice without it looking totally different. Even using a computer is a pain, having to try and control a mouse with 2 hands!!
I'm on antidepressents but thats for partial pain relief at nights when I'm trying to get to sleep. By the way, that is one good piece of advice. There was an actual cure years ago, well that's what they said it was - it was very expensive and involved deep brain stem surgery and the rate of success was very low.
Anyway, Mike may I wish you all the best in that game I have never even heard of....lol Probably speak to you again around these forums.
Regards.
Les.
Thanks for your reply and how Dystonia affects your life..
i also have poor mobility hand hand coordination Les, that's why I play Boccia - perhaps you might benefit from giving this game a go..
I Also have difficulty using most computers and have no show using a conventional mouse, but with some special Assistiveware, a predictable large keys keyboard plus a large trackball mouse installed on my computer, anything is posable 
take care and keep laughing, you never know it might even cure this crazy illness... Mike from South New Zealand
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😄 Hi Mike (&Les)
Thanks for comments
Sorry couldn't reply sooner, just moved house and no internet as yet 😁
I have a saying, don't get bitter, get better!
My dystonia is primary prob inherited according to Neuro although don't know anyone else with it.
I have Clonazepam,for jerks Propranolol, tremor & Sertraline. I also have chronic migraine but Neuro says the Clon & Prop are also good to prevent migraines although I haven't had any improvement so far.
I often take painkillers just for the aches and pains, esp at night to help sleep. Mornings and nigh times are worst and tremor is more noticeable right sided.
On the bright side I can drive, walk shortish distances on the flat unaided so am doing ok, the meds help a lot and dosages are still being increased so hope will get even better ! Going to try for a blue badge (disabled car parking) not sure I'll get one but you never know 😉
Wishing you both all the best, positive experiences and reduction in pain
Take care
HI Tezes,
What a game, moving house that used to be a nightmare we used to dread - but we had to keep moving 17 years ago now, so I could fight for a place on medical grounds. Stairs and myself, don't really do well - they normally win and I end up out of breath. lol
Blue Badge, I just had my renewal form come in the post - the current one runs out on December 9th 2014. I think the last time I got one, it was about £2 or £3, that's gone up to a £10.
Don't you claim DLA Mobility Component Tezes? This automatically entitles you to a Blue Badge. DLA is a non-taxable allowance, which is what I gave up to get our car, but because I have to carry a wheelchair, quadpush and my quadstick I have to have quite a large car. I tried to get a Kia Sportage 2.0 TD.... one problem, the car was that wide it wouldn't fit through our driveway gates! LOL So, we got a smaller in width car called a Mitsubushi ASX3 1.6, which we can fit all into - I can't drive anyway, my license was revoked about a week before I was due to take my test. Back then you had your license revoked if you suffered from Seizures in the past 2 yrs, now its down to 1 year.
@Mike
I seen those trackball mice, not sure I could get on with one though. Over the years I have learn't many keyboard-shortcuts, most use the Tab key.
Well, Tezes I got an appointment at the Pain Clinic... but not until the 17th December 2014 at 9.00am, that's probably my worse time of day, everything locks up overnight..lol 2 months to get off this Tramadol.
Regards,
Les.
Hi
No I don't claim anything. I have reduced my working hours from full time to three days a week now which is more manageable and the stairs at this house are much easier for me.
Maybe when I finish work altogether I will try claiming for pip don't think I would get it yet. Seeing GP next week to increase meds so will ask if he will support a claim for blue badge.
Scandalous having to wait until Dec for pain clinic when you're in pain, no sense in it eh.
Poor you, hope you get some sense out of them when you do have your consultation.
All the best
I only mentioned DLA because it is not a "means-tested" allowance and can be claimed even if you work, but have mobility issues, thats why I mentioned it.
Doctors full details are always requested by the council authority that issues the Blue Badge.
Fun this week our new Tax Disc (well not anymore) will be arriving from Motability. It all changed over on the 31st August 2014 - you no longer have to display a Tax Disc. Even less paperwork.
Regards,
Les.
Oh I see well I will discuss with GP to see if he will support a claim. Every little helps as they say. The move was a nightmare some people never clean before they leave, makes it harder but we are in now and will sort everything out in time
All the best as always
Just managed to get back on the internet so thought I'd try to write you guys a post.. Not sleeping tonight, spasms and pain not good.. Feeling awful tired and fatigued.. We're having nice weather here, spring time with all our blossom trees in flower, I love the sunshine and warmer days, makes me feel more human and cheerful, but still have a lot of movements to deal with.. Going to art class later on today, I like painting and let the Dystoina movements kinda define what my piece will look like, real abstract.!
Any of you guys taking Sinemet for Dystonia, just started on this in February but still having lots of jurking and painful spasms. I still take Clonazepam and Boclofen plus pain meds to help me cope better. Also taking antidepressant, my happy pill to lift and stabilise my mood.. Don't believe anybody with a lifetime of disabilities would cope without depression creeping in at sometime, just a fact of life I guess....
Jerks are real bad tonight, haven trouble using my keyboard, thank god for auto correction
Well I will say cheers for now and read what others are up to..
Take care - Mike
My daughter has focal Dystonia. It's in her foot which now turns in at a right angle. She is in pain everyday and the meds are not much help with the Dystonia but they temporarily lessen her pain but never take it away. Her Dr is quite helpful but her neurologist hasn't seen her for a year till we went last month. she had a seizure while we were in with the neurologist so he finally saw the amount of pain she is in. Her leg spasms uncontrollably he said these are non epileptic seizures so he is getting her into hospital this month for more tests.
The foot is in a solid plastic splint which keeps her foot straight but she has to get her husband to change to her night splint in the evening and she is in such pain during this its awful to see her like this and I don't know how she copes. This splint causes infections in her leg so I'm wondering if this is the cause of the spasms and I'm hoping the neuro will help her get a better one I also hope he prescribes botox.
she was fit and healthy 18 months ago this came on with pins and needles in her leg after a family holiday I wish I could help her.
She was in hospital a few ago and was scared to sleep in case she had a spasm in her sleep and so she was worn out, she is going into Walton this time and the bed monitors any spasms so hopefully she will be able to get some sleep.
Hi Mandy,
Sorry to hear about your daughter, and Focal Dystonia. I assuming by Focal Dystonia, she has problems with involuntary muscular contractions and abnormal postures, with her foot.
Normally, Focal means a muscle or a group of particular muscles in the body, but I am surprised the Doctor has stated for her to wear a 'splint'. I had Focal Dystonia but this progressed to Focal Segmental Dystonia, with Torsion Dystonia and last year, I was classed with 'Generalized Dystonia', which basically means it effects all limbs.
I also have Focal Dystonia - which causes me to walk with a severe 'gait' (foot twisted inwards), however I have never had to wear a 'splint' (this would cause unwanted pressure on the leg and foot). Is your daughter within the UK?
Dystonia is one of those illnesses that currently has no cure, well I say that but I was offered a cure with a brain operation wayback in the late 80's, but the actual success rate out-weighed the cure, it was something like only a 5%-10% chance of success, so I opted out - and obviously lived with it ever since.
It can be controlled by medication, however what you normally find is what works with one person, does not work with another. I've been through many over the years, it is at a stage now where I would not wish upon anyone.
Initially, I was taking Artane, Clonazepam, Madopar (this can be taken in high levels, but you need to be weaned on to them) and every 12 weeks a visit to the hospital for Botox injections (believe me these hurt, for about 30 seconds, but does depend on the muscle spasm at the time). With Botox they can increase doses and the period between adminstering, at the moment I'm on a 12 week period and low dosage. However, that failed so now I am having them on a 10 week gap and larger dosage. Basically, the pain in my muscles became that painful that they put me on Tramadol!! This maybe a good pain relief, but not in the long term, it is addictive and can cause side-effects, and worse of all it can cause seizures.
I noticed you mentioned 'non Eplieptic seizures', I am assuming your daughters Consultant Neurologist is suspecting 'Functional Seizures' - I can give you more details on a UK Consultant Neurologist if you PM your email address, he actually specializes in this field of Neurology, and is known by many top Neurologists - he has his own website detailing symptoms and ways of controlling them. It certainly is packed with information if you need it, not all Neurologists know of the types, Dr Jon Stone lists around 28 known types - I actually gave his website address to my own Consultant. I would give you the website address on here, but that sends this post into moderation.
It is normal for a person with Dystonia to also suffer from Epileptic or Functional Seizures, because both are related by the nervous system. That's why I never had a seizure until I got Dystonia.
A word about Botox, this injection causes the muscle to lower spasms or even stop, but Neurologists are a bit skeptic regarding lower limbs, due to the fact you would have a strange feeling. My Botox is injected in to both sides of the neck and shoulder, it feels like bee stings if the muscle is very tense at the time. The alternative route is Madopar, this takes a few weeks to wean you on to the system, the same applies to Botox. There is also a cooling off period with Botox where you can feel spasms coming back, usually 2 weeks before the next lot is due.
It may sound stupid having a cooling off period on Botox, but Madopar has the same effect - so once you are on the correct doses they work together. The Tramadol - well, let's just say that's basically poison, it maybe instant pain relief within a few days, and I stuck on 150mg a day - if I drop it at all, then I get side-effects from other medication.
Hope this information helps you and your daughter.
Regards,
Les.