Hi Zeynep,
I was just wondering, have you ever had an epidrual???
And if so did these episodes start afterwards. It can take a few months for side affects for epidurals to show themselves.
I have even heard of cases where side affects did not show until a year or two afterwards.
Did you ever experiences auras or a weirding out feeling for a period of time, before your first myoclonus seizure.
Just a thought, if you would like to respond, please feel free to email me at ***@****
Like I said, just a suggestion. I too have been plagued with seizures like the ones you describe, along with a lot of other neurological symptoms.
your welcome.
CCF Neuro MD
Thank you for your time. I will speak to my neurologist about what you have suggested. Might I say that I believe that this forum is remarkable in that given the constraints of time doctors have the doctors at your clinic still respond to such a vast number of queries.
Thanks again and cheers from Australia.
Zeynep
Dear Zeynep:
The good news is that the EEG is normal. The distressing news is your seizure-like activity. If you had a lesion in the subthalmic nucleus, I would understand the myoclonus but with a normal MRI that would be doubtful. Valproic acid and the benzodiazepines are very good medications for myoclonic epilepsy and if they did not have an effect then treatment becomes very problematic. You may want to talk to your epileptologist about something called non-epileptoform seizure-like events. These are seizure-like events that are not driven by an abnormal brain.
Sincerely,
CCF Neuro MD
Dear Doctor
I just wanted to respond to some of the questions you ask in your response to my posting.
Whilst being monitored in hospital I did have numerous episodes which were recorded on EEG and on video. I had been taking Tegretol (Carbamazepine) before going into hospital and I stopped taking those prior to going into hospital so that they could make a "true" recording. There was no recordable evidence on the EEG of cortical epileptic myoclonus however the neurologist said that based on his observation on the video of my episodes, he believed I had sub-cortical myoclonus or maybe it's as you say non-cortical myoclonus. Immediately after making the diagnosis he put me on Epilim (Sodium Valproate) and since then Prominal(Methylphenobarbitol? as I can't read the label anymore it's worn away) and now Rivotril (Clonazepam).
What happens during an episode is that if I get a warning (which is usually rapid flickering of my eyelids and/or trembling of my right hand) I immediately lie on the floor because I know if I don't I will fall. When on the floor my eyelids continue to flicker and my right hands shakes then every now and then i get a sudden jerking whereby my arms legs and head jerk up and back down. I have hurt my head in some instances. These sudden jerks continue for a few minutes until my eyes slowly get back to normal and I go into a "short deep sleep" type phase. My neuro has witnessed this on video and live in his rooms recently. The scary part is that's what happens when I get the warning signals, when I don't I just drop to the ground wherever I am and all the other symptoms are the same. This is when I have got many bumps and bruises.
Do you think I should seek another opinion? Have another MRI done? Any other ideas?
Thanks for responding.
Zeynep
Dear Zeynep Gerur:
I am not sure what to tell you. The normal EEGs are encouraging as one never wants to have abnormal brain activity. I am assuming that you didn't have an episode while being recorded by video and EEG in the hospital. Some of the medications I am not sure what they are as except for lamictal, I am not familiar with the names of Rivotril or Epilim. The term subcortical myoclonus is used for lesions in the subthalmus or the basal ganglia that cause myclonic movements. They are very difficult to control with medications. However, every patient with these have a correlation with MRI changes, usually ischemia (stroke) is the etiology. As you MRI is completely normal, I don't think that you have what I am used to seeing. So, I am not sure what your physician's are seeing to conclude that your myoclonic seizures are "sub-cortical". What I would recommend is to have the video EEG monitoring until they record an event and see if the event is correlated with EEG changes. Myoclonic epilepsy is usually generalized epilepsy and one usually looses consciousness. Since you don't, it is another reason to question what is actually happening. The medication we usually use for myoclonic epilepsy that is generalized is valproic acid or a benzodiazepine for myoclonic movements not associated with seizure activity.
Sorry, I am not sure what to tell you. I really think you need to try and correlate an event to the EEG and see if these events are cortical driven. If they are not, then other things should be investigated such as non-epileptic events, non-cortical myoclonus etc. What do people tell you that your doing in one of these events? Do you have limb movements? Do all you limbs move? Will one side of your body move differently than the other? Do you jerk your extremities? If someone has a video recorder that you may set up to try and capture one of these events, it would greatly help your neurologist to try and treat you.
Sincerely,
CCF Neuro MD