When Doctors Don't Have the Answers: Posthypoxic Myoclonus

Hello.  Anyone out there with LAS who would like to chat?   My husband has LAS since sept. 2011. He had a huge grand mal seizure which led to cardiac arrest .  Suffered oxygen deprivation of 11 min. Before being resuscitated.  Long recovery with many side effects..action myoclonus being the worst..of course. Would like to connect with others in similar situations.    

I need information on hypoxic brain injury, but I don not know where to begin my research.

Hi John.  Sorry for the delay.  We found lots of info on the web under both lance Adams syndrome and action myoclonus.  There was a lot of material to search through, plenty of case reports, etc.  Some of it was more relevant than others.  Good luck with your research and we hope you or your loved one has as great a neurologist as we do.  Take care

Hello, my husband is suffering from action myoclonus, although it is comparatively quite mild.

He hasn't had a major hypoxic brain injury, rather, he suffers from mild hypoxic brain injury from intermittent chronic oxygen deprivation fro Obstructive Sleep Apnea and respitory complications of chronic paranasal sinusits, sinus cysts and enlarged turbinates which block his nasal passages.

His sinus issues have recently worsened, and thats when the myoclonus started. His MRI shows white matter hyperintensities characteristic of small vessel disease.(can be caused by hypoxemia from sleep apnea according to my research) My husband is only 26 years old. Our neuro totally blew it off and referred him to a psychiatrist for a "psychogenic movement disorder"

His jerks are somewhat responsive to benzos, but they totally disrupt his life.

Hi ambyellen,  sorry for the delay. My email address is [email protected] if you would like to chat.  Hope your hubby has been doing better since your last post.  Take care

About two years ago, I spent a night inhaling nitrous oxide from balloons.  I did not understand at the time that there was a risk of oxygen deprivation.  I inhaled until I would momentarily black out.  I thought this was merely part of the effect of the drug.  I later discovered that this was an effect of oxygen deprivation.  I was never out for that long, just a few seconds at a time, but I did it to myself repeatedly in one night.  The next morning I woke up with this stinging pain in my brain.  At first, I sucked it up thinking it would eventually go away.  A week later, I began to panic.  I woke up everyday with the exact same feeling of pain.  It lasted all day every day.  For those first few monthes, the pain was excrutiating.  I could barely concentrate, and I was busy trying to finish my last semester of college.  I was afraid to tell my parents because I had been using drugs, but I was in a lot of pain.  I was really scared.  I read a blog post where someone who had abused nitrous described neuropathic pain running throughout their entire body for years and never stopping.  I was convinced that it was happening to me, only localized inside my head.  I also noticed spasms.  My neck shakes.  My legs kick occassionally.  My eye lids twich uncontrollably.  These symptoms persist to this day.  I finally got the courage to tell my parents, and I went and got an MRI.  It came back normal.  My family thinks I am just depressed.  I am depressed, but I am also in pain.  Real pain.  I feel it right now.  I feel completely alone.  My family does not believe me.  They keep pushing me towards going to a psychiatrist.  I might need that, but I want to know if I can stop this pain.  I think the spasms are myclonus related but I don't know.  The Doctor's I've seen do not believe me either.  I know I posted before about wanting to do research but that was a lie.  I just did not want to spill my guts on the internet like this.  I feel so messed up.  My head jerks around.  I must look like I have tourettes.  I never did this before that night.  Please if there is anything you know that can help me please talk to me.        

My son is 7 1/2 months old and was diagnosed with hypoxia when he was born due to lack of oxygen during delivery...caused by doctors/nurses apparently not paying enough attention to their jobs. My boy was in the NICU for the first 2 weeks as he started having seizures at 12 hours of life that doctors struggled to get control of. After 2 weeks he was discharged with two meds however ended up only being on the one medicine of Keppra (Levitricatem). Other than developmental delays, my son was doing fine for the first 3-4 months then all the sudden he started getting this "jerking" in his right arm and face (keeping in mind he sustained injury to the left side of his brain therefore causing issues to the right side of his body). It started being only when he woke up and fell asleep however quickly progressed into an all day thing. As symptoms started worsening his neurologist suspected him of having myoclonus so he incrased the dose of the Keppra, however upon doing so it actuall ymade my son's symptoms worse which was a bit discouraging as all the research I do says this is the best medicine for treatment of myoclonus. Since symptoms began, my son has tried Keppra, Onfi and now Depakote however each new medicine and dose increase his symptoms seem to worsen or change however when I point it out to his docotrs they all say his body needs to adjust...well it's been 4 mnoths and it''s getting worse with every new medicine/dose. Does anyone have a situation similar to this that can offer suggestions? My heart is breaking for my poor boy and I feel so helpless...any suggestions are appreciated. Thank you.

I died and was resuscitated after having a heart attack after surgery in Denver, CO. I had suffered a hypoxic episode, was in a coma for 6 days, and eventually released from the hospital after 17 days of intensive care. However, nobody did anything for me even though I could barely walk or write my name. I received no followup treatment except what I sought out on my own. I was treated as if I was a malingerer even though I have never worked since. I was evaluated by a company that specilizes in assessing people's ability to work and they said, there's no way you can work at what you did before or even a basic, unsheltered job. That was about 7 years ago. I was approved for SSD and came back home to CA once I was recovered enough to make the trip about a year later. About two years after seeing a nuerologist here, I wasn't getting anywhere. Then, I started having 'drop attacks' where I was fully awake, didn't faint or blackout, I would just suddenly fall over and couldn't put out my arms or move to stop myself. I was recommended to the Director of Nuerology at Kaiser Sacramento by a friend from church whose wife has Parkinson's Disease. My dr. throughly reviewed all of my transcripts that I had sent from CO to CA and the ones since I had been here. He determined I have LAS with anoxic encephalapathy. I finally got the right medications prescribed to me and have tweaked the dosages to where I am almost normal comparatively speaking. I still have tremors and myoclonic seizures. It did give me some relief to know what it was I was dealing with. Anyone who would like to ask me any questions about my experiences can reach me at [email protected] Don't let the system ignore you or tell you that you are malingering if you've had a hypoxic episode as they did with me. Thanks!