[dabearzfan85]

Second posting here - looking for answers please!!!

Over the past month I have developed severe muscle jerks at the moment I fall asleep. They almost always originate from the neck/head area on my right side - Then I forcefully and involuntarily will shake my head no. Abominably, it is like I am doing a crunch, but again involuntarily, and at the moment that I am relaxed enough to sleep. The symptom that has made me most nervous is that I now have resting tremors, and when I rest my body I get small, involuntary spasms/twitches.

My doctor gave me ambien to get "past the hump0." it works as when I take them I do sleep through the night, but if I do not take them then these jerks will keep me awake all night. Additionally, my doctor and I have tried both Primamex and Requip with no positive results.

I know that these things can be seizure related, but would like more info - specifically on nocturnal myclonia.

Thanks!

Matt

[Porkette]

Hi Matt,

Believe it or not the brain is the most active when we are sleeping. I started having myoclonic sz. when I would go to bed and then early in the morning when I just woke up. I then had a sleep study done and this is what you may want to have done to see if you are having any sleep disorders.
The sleep study showed that I was having absence (petit mal) sz. 1-2 hrs. before I woke up in the morning. It was weird because I couldn't tell I had any sz. I just noticed that I would sometimes feel more sleepy in the morning than usual.
Start keeping track of how you feel when you wake up in the morning, do you feel more tired, confused, and during the day are you exhausted. If you have any of these symptoms you may be having sz. in your sleep or have a sleep disorder like sleep apnea. My advice to you is to start taking vitamin B12 once a day 1000 mcg. and get a sleep study done to see what's going on for sure. I wish you the best of luck and May God Bless You!

Sue

[dabearzfan85]

Originally Posted by Porkette

Hi Matt,

Believe it or not the brain is the most active when we are sleeping. I started having myoclonic sz. when I would go to bed and then early in the morning when I just woke up. I then had a sleep study done and this is what you may want to have done to see if you are having any sleep disorders.
The sleep study showed that I was having absence (petit mal) sz. 1-2 hrs. before I woke up in the morning. It was weird because I couldn't tell I had any sz. I just noticed that I would sometimes feel more sleepy in the morning than usual.
Start keeping track of how you feel when you wake up in the morning, do you feel more tired, confused, and during the day are you exhausted. If you have any of these symptoms you may be having sz. in your sleep or have a sleep disorder like sleep apnea. My advice to you is to start taking vitamin B12 once a day 1000 mcg. and get a sleep study done to see what's going on for sure. I wish you the best of luck and May God Bless You!

Sue

I appreciate your reply. I am kind of feeling stuck because I have had 2 sleep studies with little help, a thyroid test, and a vitamin blood test with no results. Also tried requip and mirapex to no avail. I have a video of my symptoms - http://www.youtube.com/watch?v=dQDsJkWR6pE.

[Porkette]

Hi Matt,

Do you drink anything with caffeine or eat any chocolates anytime past 7 pm if you do this may be causing more electrical activity in your brain. As I watched the video my husband has told me that I do this same thing during a myoclonic sz. meaning having the sz. when I go to sleep or when I first get up in the morning. Once I started taking vimpat this type of sz. stopped. Cut back on starch food and carbs and see if this will help you out. I wish you the best of luck and May God Bless You!

Sue

[Porkette]

HI Matt,
I also wanted to let you know an Epileptologist and a neurologist are a lot different. An Epileptologist specializes in epilepsy and the Dr. knows much more about epilepsy, and how to treat it compared to a neurologist. I saw many different neurologists over the yrs. and they just pushed drugs on me but when I went to an Epilepsy Center where there's a team of Drs. working together, an Epileptologist, neurosurgeon, and neuropsychologist they will do a lot more detailed testing on a person, find the cause of the epilepsy and the type of epilepsy a person has and if the person wants to look into surgery they can have surgery done to stop the epilepsy. I had surgery done twice to reduce my sz. but before that my Epileptologist did a SPECT and PET scan on me, I had a veeg (video e.e.g.) where I was in the hospital and had an e.e.g. around the clock and I was on camera so the Drs. saw the sz. and what was happening along with seeing what was going on with the e.e.g. when I had the sz. and if there was any spikes in the e.e.g. so they could pinpoint the area of my brain that was triggering sz. I also take a lot less sz. meds since seeing an Epileptologist and the Dr. did a DNA test on me to find what sz. med would help the most with the least side effects. Take my word if you can you will be better off seeing an Epileptologist than a neurologist. You can usually find these Drs. at a big hospital and often at a University hospital. I wish you the best of luck and May God Bless You!

Sue

[dabearzfan85]

Originally Posted by Porkette

Hi Matt,

Do you drink anything with caffeine or eat any chocolates anytime past 7 pm if you do this may be causing more electrical activity in your brain. As I watched the video my husband has told me that I do this same thing during a myoclonic sz. meaning having the sz. when I go to sleep or when I first get up in the morning. Once I started taking vimpat this type of sz. stopped. Cut back on starch food and carbs and see if this will help you out. I wish you the best of luck and May God Bless You!

Sue

I actually used to (before symptoms started) drank a ton of caffeine, however, I have had one caffeinated soda in the last month, and try to limit chocolate, teas, etc. because I was hopeful that the problem was just caffeine related. I also have been taking calcium citrate, magnesium citrate, DHA,omega 3, and L-thyine to try to curb the symptoms, but no luck. Also, have had blood work for vitamin deficiency and thyroid issues that both came back as normal.

So your husband does the same thing? This is interesting, how did he get diagnosed? Has he found anything that helps him? In my research I have found a weird thing called hygonic/hypnic jerks - everyone has it to some degree or another, it's that feeling of falling when you go to sleep but in some cases it can be severe. It happens when your brain misfires during that weird time between sleepiness and wakefulness, which I believe is known something like the hygognic state. I wonder if that is what your husband is experiencing.

In any case I am torn between finding a treatment for the symptoms/finding the underlying cause or simply working around the problem but I think I may give in and try to be refered to a neuro soon. I have already spent close to $3000 out of pocket between sleep studies and doctor's appointments and don't entirely want to spend more, but don't know the other options

Thank you SO SO SO much again, and if I find anything out that may help your husband I'll let you know

Matt

[Porkette]

Hi Matt,
My husband doesn't have the same problem as I do he has seen me do the same thing that you do in your video when I have a myoclonic sz. that's what I was trying to say. Sorry if you misunderstood me.

Cut out the omega 3 it's a waste of money and time I found that out when I was using it my pharmacist told me a person has to use it for 3 months if not longer and often it won't help a person at all. I trust my pharmacist since I've been dealing with him since the 1980's. I also found that when I took calcium it would trigger sz. for me so try and cut that out and see if it helps. Stay away from nutra sweet also and if I may ask do you use a cell phone or do you have others in your house that use a cell phone because some people are cell phone sensitive, meaning cell phone use or others using their cell phone can trigger sz. for some people. Cell phones fire up the neurons in the brain and it takes them awhile before they calm down this in turn can trigger sz. for some people. Even texting can trigger sz. for some people. It is hard for me to go to the stores without having a sz. if a lot of people are using their phones at the same time.
Try taking vitamin B12 and it's up to you but I would see an Epileptologist instead of a neuro but the choice is yours. I was luck and found an Epileptologist who also is a sleep specialist so I lucked out. I wish you the best of luck and May God Bless You!

Sue