Advice pls , just started on Clonazepam

Yes you are right it's not just overlooked but I haven't spoken to anyone in person whose even heard of it. I work in a community health team and my colleagues don't know !

I have a friend whose husband is a doctor, albeit now specialising in child psychiatry but when I told. him the diagnosis word for word from my neurologist (as in my first post above) he said I've just describe a list of symtoms what's the condition ? .? My GP avoided talking about the diagnosis bur was quite happy to talk about the drugs, no confidence that he knew about dystonia. 

from what I can tell the main side effect of clonazepam is drowsiness, (doesn't mention tremor) so neuro said she will increase the dosage until it affects me for driving work etc. 

can't find any support groups for dystonia and even the D society doesn't really help me to understand what might develop in my case or what exactly goes wrong with the basal ganglia to cause dystonia.

your'e the only one whose responded to my posts who has dystonia , where are all the people with this condition, is there any better websites ?

all the best

theresa

 

Hi,

You are correct, many doctors (as in normal G.P's) may or may not even know the basic condition of Dystonia, and there are numerous variations of the disease itself. When I was first diagnosed in the early 90's I was only the 7th known reported case, in the USA more people knew more about it and treatments. If I remember I recently read that there is around 30,000 known cases in the UK these days, which is a big jump, either mis-diagnosed cases or more people have been reported with it.

I was told it's not curable, this is not entirely true, but I think I would  rather suffer than have the brain surgery which does not have a ratio of success. The best way is only to try and cope with it and take medication to lower the effects.

My Consultant Neurologist and his team do know all about Dystonia and the variations, this is why I was re-diagnosed last year. The same team that injects me with Botox every 3 months, and also run Consultation Sessions on how well the various medications are doing. They also keep my own doctor up to date with any change in circumctances or medication. When one of them suggested injecting Botox in my legs, this had to be confirmed by the rest of the team - their are some serious consequences if Botox is injected wrong. More so, is where I have it in the neck, because it can paralyse the wrong muscles which would leave you unable to swallow, and you would need to be fed via a pipe (not a very nice thought I know, but it is a risk I prefer to take rather than doubling the amount of Madopar a day).

I used to be under an American Professor David Marsden in London, many years ago (however, he passed away at the age of 60 - he was the top guy in Neurology, and most Neurologists even now still remember him). I had to travel right across England to London to see him, but his consultations were always ways to improve upon my current pain.

As for other websites for specialized information the only one I use and they send me literature via snail mail is The Dystonia Foundation in the US.

https://www.dystonia-foundation.org/

This website deals with not just with the various Dystonia variations but also the medications being used or trialed at the present time.

Anyway, I hope that helps you - if not I do have other resource websites I use.

Regards,

Les.

That's great thanks I will check the Americsn site. I have a Specialist Neuro who works in many different hospitals Kings in London predominantly (I googled her and was impressed)  Dr Naheed Khan, she is really nice as well which helps. 

Just had a mtg today with HR, Union rep and Mng, they have agreed to me reducing my hours for 6 mths from F/T to 3 days a week which should help and are flexible with days, they are accommodating which is great. Will see how I get on, it will be reviewed after 5 mths TBH I can't see me going back F/T. I ache so much at the mo. I'm only on lowest dose of clonazepam but the fun starts now with dose increases !!

Will post occasionally with updates

All the best 

Hi Tezes,

That's great news, that US website deals with patients worldwide with Dystonia, the information they send out is also very informative on the latest ideas and many neurologists write many columns for it.

I no longer go to London these days, they diagnosed me after I spent many weeks staying in the Queens Hospital, having tests done. It was a great relief to be honest, not just cheaper to be seen closer but not having to travel so far in one day just to see a Consultant Neurologist for about 10-15 minutes!

Well, I wish you well on the Clonazepam - I have been on them years, but other tablets I take have much worse side-effects, so I take additional tablets to counteract them. Way over 130 tablets a week, I have been close to overdosing on a few occassions, but it's because of side-effects from other tablets makes me think I have either taken certain tablets at a certain time, or on some occassions I have forgotten to even taken any of them. I have to rely on my wife so I take my tablets at the right times. I have one of those units that you fill to take a weeks tablets 4 times a day - even that didn't work for me, so my wife started putting my tablets in small plastic cups, that failed as well - so now its a case where I have to be told when to eat food and take to medication. Tramadol and other meds really mess with my mind, then again its better than having to put up with pain 24/7, but it is not full pain relief - but I cannot handle more Tramadol a day - and virtually through them at you once you are beyond any other painkiller.

I'll look forward to your updates.

Regards,

Les.

Hi Les Thanks again,

Just a thought you can get the pharmacist to dispense all your meds in weekly dosset boxes as you describe but they have ones with timers and alarms to remind you to take the tablets as prescribed. They also rotate to reveal only the tablets for each particular time of the day. Don't know if you can get them on NHS but would be worth buying one if not. They are shaped a bit like a UFO !! COOL 😉

Hi Tezes,

Yeah, I need to buy a new replacement box, the 28 compartment one I have is now too small to hold all the tablets for one day, and after about 6 months use they take a bashing from me trying to get the plastic slides out. The times I've lost tablets or slipped and opened another compartment by mistake is unreal. I have seen the ones you mention, they are kinda like some of the cat and dog food dishes you can buy, that's without the alarms! lol  If I remember rightly they sell for around £40-£50 each, I'll check next time I'm in the pharmacy. Good thinking, see I didn't even think of those even though I have seen them, my memory is terrible lately - combination of tablets and broken sleep!

Am not surprised you must be exhausted you're on massive amounts of meds, can't they rationalise them ? I'd be lost in all that and wouldn't be able to tell which drugs any side effects are coming from. Pharmacist are the most knowledgable when it comes to drug interactions and polypharmacy treatments. Might be worthwhile getting an app to discuss your treatments with your regular pharmacist. 

BTW I found one of the regular dystonia conferences arranged by the D Society is about an hour from me in sept so will attend for more info and post back

Wishing you all the best

Theresa

Hi Tezes,

The amount of medication is currently under review, and I have an appointment booked in late September at the Neurology Clinic.

Here's a quick run down on what I have to take per day...

Cancer:

Oncologist (once a year now) - so just more blood tests. 2015 should be the last year in remission.

Dystonia (Generalized):

Botox - Injected every 3 months

Madopar - 125mg

Clonazepam -

Artane -

Epilepsy & Functional Episodes (currently under review):

Epilim - 1,900mg (2,000mg is the max they will allow)

Painkillers and to aid sleep:

Tramadol - 150mg a day

Amitriptyline - 20mg a day

Other tablets vary for hayfever and they always recommend that I have the injection for flu during the winter period. Now, there is a few more tablets I have to take for side-effects for the aforementioned.

Some of the medications I'm on also interact with one another, especially the painkillers which can cause Epilepsy, yet I am on a high dosage of Epilim, if that makes sense. Initially, I was only on Epilim, but as the seizures became worse then dosage was increased. The Dystonic pains became unbearable, but I cannot take any drug with codeine in, which made it awkward. At one point Baclofen was introduced but that had no effect whatsoever.

Now, you can see just some of the medications I take - and my main Consultant Neurologist calls me an 'complex case' and laughs, it's a joke thats been going on for years with every Neurologist I have seen, I don't mind because I wish I did only have one issue. It's the main reason why I have to see my own doctor and not a stand-in, because they have to go back through so many letters and scans, etc.

It is not as bad as it used to be where I would fall asleep even when I was eating a meal (my wife had to keep waking me up!). I used to fall asleep and not even know anything about it, but it is classed has a form of seizure.

The Dystonia Society, I don't think they come close to me, probably more like Bristol or Birmingham are the main cities to me.

Regards,

Les.

Hi Les

Phew you have a lot to contend with... Whilst I'm not an expert I do know that Amitriptyline is an old drug which can have nasty side effects, most doctors don't like prescribing this now as there are many newer effective drugs with less side effects.

Also there are more modern drugs than Epilim although neuro are reluctant to change anti epileptics if they are controlling your seizures although in your case they might since you are having to take massive amounts. My brother just been taken off Epilim.

i wish you all the best with your upcoming app's I hope things improve for you generally

kind regards

Hi Tezes,

Thought I would let you know how the clinic went today, after arriving late because we could not even find a car space close enough.

The Epilepsy Specialist seen me and could not understand why I was on Amitriptyline and Tramadol, both of which can cause seizures. She said she could see the point of view for pain relief, but would not recommend them over long periods of time or either of them to be increased.

She is referring me via my own Doctor to The Pain Clinic, which is on floor above the Epileptic Clinic. I know that sounds odd, but that's England for you. Surely, a more sensible idea would be to make an appointment in the clinic above.

Oh, well another appointment on top of Neurology at the end of this month.

Regards,

Les.

Hi Les Sounds like a good result !

Definitely meds all need reviewing, it's is frustrating when the pain clinic is upstairs but I guess the referral needs to come from a doctor,  means more waiting tho

What's happening re your EP drugs? is the EP specialist happy with epilim and dosage ? or are they waiting to see whether your pain relief meds are changed. 

More app's but at least they are being proactive which is positive .

Thanks for letting me know and hope you get a positive response from a Neuro too

All the best keep us updated, you have such complex conditions !

Hi Tezes,

The Epilim dosage is staying at 1,900mg a day at the moment, the Epilepsy Specialist said I do not want to change anything at the moment as long as it stays stable enough for you to attend The Pain Clinic. Once that it is sorted, and it is okay with me then we will look at the reducing or changing the Epilim, either way the dosage will need to be stepped down slowly, because of the length of time you have been on them.

Funny you mention my complex conditions - the Epilepsy Specialist said I will note down on your next visit to this clinic I will require Volume 1 of your records, because that would have the details of when the Epilim was first prescribed, this volume does not go far enough back! lol 

I thought it was strange when I was changed over from Incapacity Benefit to Contribution-based Employment and Support Allowance, and placed in the Support Group, meaning no meeting required with individual. I did not know how far my records went back until today, they said a few more visits and you will be on Volume 3... I said to the Specialist today Vol 2, she just said well you see numerous doctors and consultants a year, plus paramedic reports, etc it all mounts up!

Regards,

Les.

Wow nearly time for Vol 3 !

Well I would hope medical knowledge has advanced since you first started to attend hospital clinics !!

All sounds positive to me and hopefully you will get sorted out for the better in time. 

At least there is a plan but bound to take awhile - you are unique

😄

Hi Tezes,

I thought I would update you on my progress, so far.

I seen my Consulatant Neurologist today, he does not like me being on Tramadol, and would rather me on high doses of Botox. He gave me double what I normally have in Botox today, he said do not stop the Amitriptyline at all, it is only a small dosage compared to all other medications you are already on.

So, the Botox was increased today and that brought tears to my eyes (I did not ask how much he injected, but it was 3 large doses.

The Botox at the dosage he gave me will take about 1 week to take effect. That is when I have to drop the Tramadol by 50mg at midday, and the following week drop another 50mg in the morning. Then he said if there is any sign of pain at this time just add the 50mg Tramadol in the morning and leave it at this level.

He said what we will try to do is cancel out the Tramadol completely, but to do this we have to increase the Botox period and the dose given. So, basically over time use Botox only and not Tramadol. He said the Tramadol makes life too easy to kill pain, but it is also highly addictive and as your body becomes used to it, the more you will want - then the side effects will increase further. At the moment even taking 150mg is enough to multiply all current side effects by ten times.

I am still waiting on the Pain Clinic, so thats next! Is there really a light to all this! LOL

Regards,

Les,

Well it's another step forward I'd say, hope it's as positive at the pain clinic, the less meds the better I think,

good luck ! 😉