Does anyone else have attacks of myoclonus, which are like epileptic seizures in some ways?

I have been suffering from these for almost a year now and they are getting worse.

They happen when I stand up and try to move, mainly. My left arm jerks, some times my whole body jerks, and sometimes I have episodes of 'greying out' not a black out exactly, but then I FALL, hard.

This is a description and I meet all the criteria. I've had two EEGs that are perfectly normal, and yet I have these 'episodes' that are so scary and dangerous.

Primary progressive myoclonus of aging. - PubMed - NCBI

If anyone knows what I"m talking about, I hope they reply to give me some comfort that I'm not alone with this.

Right now I am on a large dose of gabapentin, for nerve pain. And Myoclonus can be a side effect, so I am tapering off as quickly as possible.

My neurologist doubts that it is the gabapentin and is prepared to try a medication to stop or slow down the attacks I have. This medication is: Valproic Acid. Does anyone know anything about this treatment?

I am feeling very vulnerable right now.

Regards, ElaineD

Hi Elaine,

If I may ask do you see a pattern where this happens early in the morning or when you go to bed? If so you may be having myoclonic seizures. When I was taking Neurontin (gabapentin) it made my seizures much worse to the point where I would be out of it for 30 min. if not longer. I later found out the drug co. is being sued for millions because this drug can cause seizures for people who have never had seizures in their life. This may be the problem you are having. I found taking vimpat stopped the jerking around I was having like you mentioned. I took Depakene yrs. ago for my seizures also and it worked great for me but the drug can cause anorexia where a person will either gain or lose weight. I lost 70 lbs. in 4 months and I was eating normally. Also you have to watch your blood platlet level along with your liver while taking Depakene it can lower the platlet level causing enteral bleeding for a person and if it gets into the liver there will be serious problems.
You may want to try taking vimpat like I mentioned it stopped the myoclonic jerks I was having and all of that can come from a tumor, infection in the brain and much more. My advice is for you to see an Epileptologist these Drs. specialize in epilepsy and can find out for sure what's going on and put you on the least amount of med. I wish you the best of luck and May God Bless You!

Sue

Hi Porkette,

I'm sorry to be so long it getting back to you, but I had surgery on my back on October 11, and what with one thing and another I have been busy recovering strength.

I stopped the Gabapentin, tapering off and ending on November 10. I was on 3600 mg/DAY and the withdrawal was hell. I guess it's like the withdrawal from benzodiazepines.

My seizures are only orthostatic: they happen when I stand up and walk a few steps. They only happen during the day.

There are both positive myoclonic seizures (shaking of various parts of my body) and negative (complete relaxation of my muscles and I fall to the floor). The second type, negative, happen far less frequently, but 5 times since July, are completely unexpected (except they happen when I stand up) and I haven't gotten seriously hurt, thank goodness.

But they completely stopped me from driving or being alone. I got a wearable alert in case I fell when my husband was out of the house.

Even off the Gabapentin for over a month I still have myoclonic seizures (but milder, perhaps?). And the reason I was taking the Gabapentin was for the severe pain and discomfort of my Small Fiber Neuropathy (SFN).

I refused to start a new medication for the SFN until I was certain that the seizures weren't gone. I started a new mediation, Depakote, for my seizures and Depakote also reduces the pain of my neuropathy. Not completely, but I think I'll put up with a bit of discomfort, rather than increase the dosage, as I did with the Gabapentin.

Since starting Depakote two days ago, I still have had one tiny mild positive seizure in my left arm today...not scary like the negative seizures when I fall.

As I mentioned, I have had three EEGs and one overnight EEG sleep study. There is no detectable seizure activity in my brain. I have had MRI's of almost every part of my anatomy for one reason or another, and I have been tested for every genetic disease and other causes of seizures. When everything is ruled out I'm left with Myoclonus of Aging (I'm 74 and the seizures started seriously this year.

I also take other medications which require monitoring of my liver function (80 mg Atorvastatin for severe Coronary Artery Disease) and see many specialist.
THANK YOU SO MUCH for taking time to answer me.

I know almost no one with conditions like mine. I have a Primary Immune Deficiency Disorder and received IVIG every 4 weeks. In addition to being deficient, my Immune System actually attacks organs/system in my body (lungs, eyes, mouth, bladder, large nerves in my legs, small nerves, ears) so my immune system doesn't protect me, it attacks me.

Fortunately with IVIG every four weeks, I no longer get infections. Before I had those, I was sick all of the time. So I could that among my blessings.

I got braces last year, for my legs, and was delighted that they helped me walk with so much less effort, THEN the myoclonus started and I was afraid to walk without my walker. And even with the walker when I had a negative seizure, I let go of the walker and fell to the floor. I even BROKE a wheel on the walker.

Just as I was tapering the Gabapentin, the severe sciatica started in June, so I had to resume the Gabapentin for that pain, wait for the surgery in October. Thank goodness it worked perfectly.

So I may come out of this year in better shape than ever.

Hugs, ElaineD

It is weird. Yesterday I had the myoclonic seizures almost all day long (the positive ones where I jerk, mostly my arms, but also my trunk).

Today, almost no seizures at all. What's with this? I've been having these seizures since early summer, and they seem to be progressing. Except today, nada.

I know nothing about epilepsy, but my Neurologist and his PA keep calling this epileptic seizures. I guess I thought epileptic seizures were like totally consuming events.

When I have a negative seizure and collapse on the floor, that is pretty major, but not disorienting. I mean I don't lose consciousness.

I even have these seizures in my Eustachian tube. The muscles in the Eustachian tube (yep, there are muscles there) contract and cause a series of 'clicks' in my ear.

So far the Depakote I'm taking (1250 mg/day) isn't stopping the seizures, which is why I'm taking the Depakote.

I also take Gabapentin (1600 mg/day) for relief from the pain, stinging, itching, burning, etc. of damaged nerves in my skin. It works really well.

The damaged nerves condition is called small fiber neuropathy.

Hugs, ElaineD

Hi Elaine,

I'm sorry to hear that you are still having problems. I hurt my back and my husband has had 3 back surgeries so I can relate to the pain you have been having. You may want to ask your Dr. if you can start pool therapy and get off the Neurontin all together. When you do pool therapy you have to do certain exercises in a 80 degrees pool and just by walking in the pool it made a huge difference for both my husband and me when it came to back pain.
Years ago I took Depakene which the same a Depakote what you need to maybe try is vimpat when I went on that the myoclonic seizures stopped completely Also my Dr. told me to use medical marijuana and I am amazed at how that has helped me. I buy it on line in a mouth spray and squirt it in my mouth 1-2 times a day and my seizures have been the lowest since I started keeping track back in 1989. The medical marijuana is also used for pain, and to help seizures along with stopping cancer. If you are interested check out
healthy hemp oil and you can buy it on line and if you don't like it they will send you back your money within 90 days.
Tell your neuro to do a PET and Spect scan on you often when they can't find what's triggering the seizures they will do this test. For yrs. they thought it was just scar tissue on my brain that was triggering seizures but when they did brain surgery on me they found damage that was way to deep in my brain for any tests to show and this could be the problem you are having. Check out the page Coping with Epilepsy if you want to get more help from others.
Here's wishing you well and May God Bless You!

Sue

Hi Porkette,

I wonder how you chose this user name? Interesting.

I take the Neurotin for the nerve pain of Small Fiber Neuropathy. These are nerves in my skin that are damaged by my Immune Disorder. The damage causes sensations of pain, burning, stinging, itching in my scalp, face,lips tongue mouth, throat and chest, ears, neck, arms, hands, fingers and palms.

The sensations are always there, cannot be fixed, and only Neurontin or Lyrica will stop them.

I do exercise in warm water a couple of times a week. Surgery fixed my back pain, so I do the exercise for flexibility and cardiovascular health. I have profound Peripheral Neuropathy in my legs (the main nerves are 'dead' from attacks by my Immune Disorder). I wear braces, which helps me to walk a bit.

We live in North Carolina where there is no medical marijuana allowed. Alas.

I will suggest Vimpat to my Neurologist after he thinks we have given the Depakote an adequate trial.

I have had two EEGS in the past three years as well as many MRIs and CT scans. I think my Myoclonus is what is called Primary Progressive Myoclonus of Aging (I am 74). I don't think there is any cure. But I would like the seizures to stop. Especially the Negative Myoclonic seizures where I collapse to the floor.

I'll keep you posted, and thanks for caring enough to send your ideas to me.

Hugs, ElaineD

Porkette, I have a referral to an Epileptologist, so I am optimistic that help is on the way. First I will have a blood test to see what my levels of Depakote are.

I am convinced that Depakote is not the right medication. But who knows?

An expert, I hope!

Hugs, Elaine

Hi Elaine,

For yrs. I saw many different neuros but then when I looked into having surgery done to stop the seizures I started seeing an Epileptologist and I was amazed at all the work that they can do and how they understand Epilepsy and can control it on the least amount of med. It was my Epileptologist did found out I was drug resistant by doing a DNA test on me, and also fought my health insurance co. who was refusing to cover me on the ketogenic diet. You will hopefully find an Epileptologist will be able to find out what's triggering your seizures. My Epileptologist found damage deep in my brain that no e.e.g. or MRI would show. I wish you the best of luck and May God Bless You!

Sue

I'm curious, Sue. I'm seeing an epileptologist on the 30th. I am hopeful he can at least find the right combinations of medication that will control or eliminate my seizures.

I hadn't thought of finding the cause. When your epileptologist found the cause did that help him with treatment?

Many of the nerves in my body have been damaged, sometimes to the point of no longer functioning at all, in other cases damaged so that pain, burning and itching results. No reason for this damage has been found (and I've been tested beyond belief for this). My Immunologist postulates that my damaged immune system is actually carrying out attacks on my organs/systems in my body, including the nerves.

So often with the kind of conditions I have, no cause can be found, and few treatments exist. I do have IVIG every four weeks which defends me from infections, and for that I am eternally grateful.

I'll keep you posted on what I find out. I have positive myoclonic seizures, often several times a day, where my left arm and the left side of my body jerk and shake. The negative seizures where I collapse to the floor only happen once a month or so. I don't lose consciousness, I feel no pain or stress, the event happens and then it's done.

I hope this doctor can help to some extent.

Hugs, ElaineD

Hi Elaine,

After you see the Epileptologist ask if a DNA test can be done. Take my word it's the easiest way to find the right seizure med with the least side
effects. I tried over 10 different seizure meds and not a single one stopped my seizures, in some cases the drug increased the seizures depending on what it was.
If I may ask are you taking anything besides the Depakote. I know when I was on it my Dr. at the time had me taking mysoline (primidone) which is a very old seizure med. I have found that the older seizure meds work better for me than the newer ones other than vimpat.

I wish you the best of luck and May God Bless You!

Sue