Thanks for replying charr. im 48 & I'm sorry you have this and its really difficult to treat from all the research I've done. I came across many articles where they try different combinations of medicines, and even then, they don't work very well. I was offered botox but refused. I read one research paper where someone your age was cured after having their adenoids removed...go figure! My neurologist just suggested Keppra and said I should research it to see if I want to try it. What meds are you on for it?
But As I'm already on Lyrica 75 mg twice daily, 5mg Valium twice daily,Mitrazapine 30mg PM (this contains a superbenadryl anti-histamine which seems to help me). I also take Zantac 12 hr one a day.
I tend to be wary of changing what I'm on at the moment..since I react unpredicatably to changes in meds. Do you know what caused yours?
Originally I was on Clonazepam 0.5mg twice daily and I was really bad on this..it was the only medication I was on. MY body was histaminic and inflammed... I was toxic from this medication.and constantly in withdrawal from it without knowing it....I was told I also had trigeminal neuropathy,fibromyalgia, complex regional pain syndrome etc...But these conditions are part of the arachnoiditis (medically or dental treatment/therapy caused nerve injury) syndrome.
The myoclonus was in my palate and throat all the time. It was so bad on clonazepam that I was having choking fits. I have trouble swallowing on the right side, nerve/ muscle damage there. I suspect have supra- and sub-glottic stenosis on right side (becomes clearly evident when don't use partial denture and if on hardly any meds... ..the myoclonus then becomes a burning-cramp on right side face and a burning-cramp on right side neck/throat. Laryngo-pharyngeal reflux experienced on right side...very frightening). Do you notice the spasms increase in intensity(amplitude) and frequency(speed) when your adrenaline(epinephrine) levels go up, say, during exercise, walking?
For me,it happens while im just sitting still, just opening my mouth increases them or moving my neck...its always there but I do everything possible to minimize it. Like don't eat things that will make it worse eg. no coffee, I hardly eat any packaged foods and stick to anti-inflammatory foods as much as possible like salmon, tuna, lots of veges but no nightshades.Anything that increases spasm / even peristalsis in the body seems to affect it, in my case, so I try to keep as regular as possible, which isn't easy on the meds Im on...have yogurt/ greens every day etc. Also I pace myself, so I do something active and then rest etc.
Swallowing & talking can be affected...i'm trying to stay on top of this thing but its not easy...docs don't know what to do either. I've had it progressing for 14 years.
Its good to hear from someone else with this...mine originally started as some clicking in right ear but now has spread to become pharyngeal and laryngeal myoclonus. It is now travelling to the left side and there is nothing I can do to slow it down. I know what the end will be with this neurological problem... breathing/ choking/swallowing will become more difficult..not nice. Is your myoclonus bilateral or only on one side?
I wish you the very best and hope you can come to terms with this and live as best you can.
That is all I can do. I hope more people chime in on this.
Thnks for your support Cindy. Have you heard of anyone else on any boards with this?