When Doctors Don't Have the Answers: Posthypoxic Myoclonus

Hi guys, I'm the site author, Monica. I have not updated anything here in a long time. Why? Frankly, when I made the site I didn't expect so many people to be seeking this info out! I am humbled by the stories I have been able to read and by the fact that some of you guys reached out to me. If my site has helped any of you at all, then I am beyond thrilled.

Anyway, I would like to add some more information and things to the site and do some editing soon. In the meantime, I would love to hear any updates or stories from anyone (new people or old!). So if you'd like, please share! I'll read every post.

As for how Peter is doing? He has continued using Keppra at 3000 mg/day (since 2010, read About Us for our story), which he takes along with primidone (for help with myoclonic seizure control) and clonazepam (for the anxiety which aggravates certain types of myoclonus). Now, if you know of the obscene amounts of medications Peter has been put on in the past, you know that this isn't a lot of medication and it's a huge improvement. Peter is able to walk, run, stand, etc. with only very mild residual effects from LAS. As in, hardly noticeable. His action and startle myoclonus are all but resolved. And this is how it's been since he began the proper dosage of Keppra. It made ALL the difference in his case. Like a switch was flipped. In fact, I believe that Keppra is so important in the treatment of LAS that I really do urge you to get your doctor to try you on it if you have received a LAS diagnosis. All the doctors we have ever seen simply seem unaware of the studies involving Keppra and LAS, frankly. So don't be afraid to bring it up if appropriate to your situation!

Take care, guys! I'll be checking back and will try to answer questions as well, if you have any.

- Monica

My husband has gone to 4 Neurologists and they keep giving him meds for Parkinsons which he can not tolerate.  He has had LAS for 4 years.  He was first diagnosed with LAS by a Neurologist who has since retired.    I have asked about Keppra and they all say husband does not show any symptoms for using that..  Thanks JoAnne Davis.      

JoAnne Davis at April 1, 2015 at 11:37 PM

My husband has gone to 4 Neurologists and they keep giving him meds for Parkinsons which he can not tolerate.  He has had LAS for 4 years.  He was first diagnosed with LAS by a Neurologist who has since retired.    I have asked about Keppra and they all say husband does not show any symptoms for using that..  Thanks JoAnne Davis.      

Get your husband on Keppra immediately... I take the generic Levetiracetam one pill(1000mg) twice a day. I also take Primadone, and diazapam for tremors. It is very important that he gets on this medication. It helps control myclonic seizures. I've had LAS for almost 6 years now.

I want to correct my previous post. I don't take 1000mg of Keppra twice a day. I take 150mg twice a day. I also have reduced my Metaprolol intake from 50mg twice a day to 25mg twice a day after dr. discovered it was causing my heart to beat too slowly at night. When I woke up to relieve myself, I was like a staggering drunk for a minute or two  until my heart rate  caught up. Best wishes, Mike

I am now 68 years old and have reached, IMHO, the best point at which I can recover with medications. I still take Diazapam 5mg 4xday, Primadone 50mg 4xday, Keppra(Levetiracetam0 250mg 1.5x2 a day.My Metoprolol intake has been reduced to 25mg 2xday. I have had no drop attacks under this regimen since I started it and have refined it down over the last 10 years to where it is now. I did have one myoclonic seizure incident while driving in a manual transmission car and nearly rear ended a parked car before I could come to a complete stop. I no longer have that car. My companion, who is a CNA/RNA, has noticed that sometimes I still get shakey. But, that's going to be a part of my life from now on as I get older and the LAS continues. I hope this helps... God bless