Hi
ive been taking clonazepam for almost two years it was prescribed by a consultant neurologist who specialises in movement disorders to manage my cervical dystonia and dystonic tremor. I will have to take it for life.
it works to reduce my symptoms in combination with propranolol.
However Quite randomly my GP tested my memory and I failed part of it so she referred me to a memory clinic. I went yesterday and again failed to recall certain information I had been given such as a name and address.
i have noticed certain changes such as:
i do sometimes become overwhelmed and disorientated if put under pressure
i do have memory and concentration lapses
i can't multi-think
i can't manage stressful situations
i am sometimes unsteady on my feet
i am intolerant of noise
i often feel that I just want to be left alone or just sit quietly in a corner in a cafe etc
i am wondering if these changes are caused by clonazepam or dystonia
is there anyone out there with similar problems ??
Thank you for listening
Hi Tezes
I have those symptoms too. I was recently diagnosed with spasmodic torticollis or cervical dystonia. It's been 2 months since it started.
I don't know which med causes it but my depression and anxiety probably is a big factor for me along with perimenopause.
How old are you and are you female?
Hi
yes female post meopausal
i take propranolol and clonazepam for the CD and Dystonic tremor
i also have, depression and anxiety but my neuro explained that those are symptoms of dystonia.
I have migraine too - so much for that going after the menopause !!!
The neuro gave me Artsne for CD. I'm having such a horrible time last 11 months with a long list of symptoms. Just want to crawl in a hole. Because I went into deep dep tried all sorts of AD's and they think maybe abilify is cause of CD.
How long have you had CD? Do u do any exercises for it?
My symptoms started before getting cd.
I was diagnosed about two years ago by a neuro who specialises in movement disorders. I do have a lot of symptoms and pain/discomfort in my neck and left shoulder.
it took about 18 months of tests before I got a diagnosis (bloods, brain scans, nerve conduction tests etc). The first drug I was prescribed was sertraline for the anxiety/depression that was about a year before I was diagnosed with Dystonia. I have just weaned myself off the sertraline only because I didn't want to be taking so many drugs. I still have low moods and anxiety but I can cope with it better. BTW my Neuro did say my prolonged periods of stress may have triggered the onset of my dystonia.
What was it that you thought caused your dystonia ?
18months is a very long time to go without a diagnosis. I would have been do worried and anxious.
Well I tried Abilify for 3 months so that's one possibility or cause. But they really don't know. I had a brain MRI which was fine. Had a neck MRI last week. I'll know on Friday the results. Also getting EMG test then.
Is CD for life?
Yes I'm afraid there's no cure for CD but there are treatments my neuro told me the combo of propranolol and clonazepam is her first treatment of choice. A lot of people take the same drugs, others have Botox injections in their neck but I'm sure you'll get the right treatment for you. Hang in there, if your on Facebook there is a group for people with cervical dystonia, worth having a look, lots of good advice from people who have had it for years.
Good Luck
ps I've never heard of a drug causing CD, I'll look it up
I'm getting EMG test this week. Have u had that done?
It's hard to eat, read, write etc in this condition.
Do your drugs stop the movement?
I'm taking Artane now. Was taking Cogentin. But got side effects.
Whereabouts are you from?
I'm in Caligornia
Hi yes I had the nerve conduction tests
The drugs I take are to reduce the tremor and jerky movements and they do work it's very manageable now. I still spill drinks and can be unsteady but the drugs also help me sleep well. I have had to adjust for eg reduce my days at work, limit driving etc and I can no longer knit, jog or ride my bike but I found I can play the piano so I've gone back to that (I took lessons as a child). I wouldn't be able to play an instrument that I had to hold or grip or maintain a position with so I'm grateful to be able to play piano.
i hope you get on ok with the tests, I also had a DaT scan to rule out parkinsons and brain scans to rule out tumours, ms etc.
I live in Kent Sout East England x
That's great you can play the piano still.
I need to find some creative outlet, otherwise I'll be consumed by this.
I searched on YouTube about dystonia the other day and was shocked and scared at some of the videos I saw.
I'm still trying to come to terms with this. It's such a rare condition I keep reading. And I have it. Accepting it is so hard.
Try not to worry this is the worst time while you are still having tests. Once you are more stable on treatment you will begin to get to grips with it.
The problem with you tube etc is you will prob see all the worse cases. Dystonia affects every individual differently and to varying degrees. Also stress and anxiety exacerbates the symptoms of dystonia so once you have finished with the tests etc things will settle down. I hope all goes well for you, there are many support groups around and you will see many different types of dystonia, they vary dramatically. The Dystonia society website is very good to clarify things, all the best
Thanks for your reassuring words. I'm just in a state of disbelief, denial, self pity etc.
The last 11 months have been such hell. On top of depression anxiety, severe perimenopausal symptoms and now dystonia. The only places I've been to during this time is Drs offices, testing places and grocery store and checking in on my mom.
Really debilitated by all of this. But your words are uplifting for me. With my anxiety I tend to catastrophize things.
Big hug to you.
CC