My Myoclonic Seizures

Myoclonic seizures involve brief one to two second jerks of the extremities (i.e., "lightning" or "shock-like" jerks), usually on both sides of the body. The movements created during the event can look awkward and sometimes be mistaken for clumsiness. Several epilepsy syndromes exhibit myoclonus, including juvenile myoclonic epilepsy (JME) and Unverricht-Lundborg disease. People with JME experience these seizures upon awakening or in response to flickering light. Irrespective of condition, the anticonvulsant valproic acid (Depakote) manages myoclonus well.

Tonic-Clonic and Clonic-Tonic-Clonic Seizures

As its name indicates, tonic-clonic seizure designates an episode with both tonic (i.e., muscle locking) and clonic (i.e., involuntary convulsion) phases. Early in the tonic phase, the airways constrict forcing out breath and producing audible gasps. The individuals will then collapse and experience clonus, during which time they might bite their tongues or lose bladder control. Emerging from a tonic-clonic seizure, people will often feel confused and exhausted. It might take hours to recover. The Epilepsy Foundation states that tonic-clonic seizures represent the most common type of generalized seizure, although seizures following a clonic-tonic-clonic pattern can also occur.

 My notes:  I was tired in the video, yes, and sometimes when I'm tired I have the worst jerks.  It is just as it looks like..uncontrollable jerky movements, sometimes my hand jerks and I drop what's in it, sometimes my torso jerks (it does a little in the video as well) and sometimes my entire leg jerks itself like a kick to an invisible dance!  Occasionally after a set of small seizures or after a big one I get tired, very tired and feel a bit confused and just de-energized.  Most of the time it's just like having an annoying habit.  A step farther than the twitch under my eyes during nerve attacks.

I have learned that epilepsy can be many things.  I denied I was having seizures for a very long time.  My rheumatologist and pain management doctor waved it off as well.  Possibly because of the conviction set forth by my denials, lol!  But I knew the jerky movements were getting worse, and I started having them while fully aware and awake..so there's no brushing them off.  My EEG found slowing in the left side of my brain- and my neurologist pinned it as seizures.  Over a year ago my GP, a smart brilliant ole guy nailed it as well.  I am having seizures!  I never thought I'd be saying this..what a shocker.

Is it from my lupus?  Of course it is.  I believe it has more to do with lupus damaging my nerves and the inflammation of those nerves then it does with any brain damage.  It has the same result I suppose, but I'm convinced it would be wrong to label it as CNS lupus!  Yes I have peripheral nerve issues (bodywide nerve entrapment syndrome-bilateral carpal and tarpal tunnel, ulnar, trigeminal neuralgia and occipital neuralgia but no brain lesions found in my MRI.  That clears me of true CNS lupus.

Now I do have the slowing and I have some short term memory issues without a doubt!  I write things down, everything down, I play memory games and problem solving games at lumosity.  I play word games as well.  I do what I can.

The most important thing is I am still ME.  Losing control of nerves and muscles IS scary, yes, but its not the end of the world.  Some people can't walk.  Some people are dying of cancer.  I'm not.  I'm a lucky woman with a wonderful family and many friends I adore that I have met online with lupus like me.  They are all blessings!  

I am happy and feel fulfilled.  

Surgery in FOUR days now!  Had my presurgery appt today and all went well!  I'll update after the surgery!  If your reading this, then thank you!!!!  HUGS and may you have more good days then bad!  Love Julie