Primary progressive myoclonus of aging.
 

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

Hi Elaine,

I got the user name because I collect pigs and I'm into ham radio. My husband gave me that nickname and it's been that way for the past 30 yrs. Also remember is someone calls you a pig to tell that person "Thanks" because pig stands for Pretty Intelligent Girl/Guy.
I'm wondering if the Neurontin isn't causing the problem for you. I know that the drug co. making Neurontin has been sued for millions because they have been doing off market labeling with the drug and they found that the drug was triggering seizures for people who never had epilepsy. I know when I was on it the drug caused me to have status seizures where I would be out of it for 30 min. to 2 hrs. and this in turn caused more brain damage. Ask your Dr. to do a DNA test on you all they have to do is draw some blood from you and then get some salvia from the inside of your mouth, all of that will be sent to the lab which in turn will show your body chemistry along with the amount of enzymes in your liver. When the Dr. sees this they will be able to find the correct med for you with the least side effects. I had this done a few yrs. ago and found out I was drug resistant to all seizure meds out on the market right now.
Try taking vitamin B12 1000 mcg. once a day and Folic Acid 1 mg. that often can help reduce the seizures for some people. You may also want to go to the store and get some coconut oil make sure it's organic and refined then put it on your skin once or twice a day the coconut oil builds up ketones in a persons body which in turn stops or reduces seizures. I have been doing it for close to a yr. now and it works great. This past yr. I had the least amount of seizures. I wish you the best of luck and May God Bless You!

Sue

Dear Porkette,

At last I've found you, and your knowledge and wisdom.

1. I will check out the DNA test for finding the right drugs for my seizures.

2. I actually withdrew from and completely stopped the Neurontin for precisely the reason that both Neurontin and Lyrica have a 4% chance of CAUSING Myoclonic seizures. I felt it was worth trying.

However I had had some myoclonic seizures, one negative where I collapsed, and one positive with arm jerking, long before I started the Neurontin. But I thought it was worth a try.

The seizures did not stop when I stopped the Neurontin. And I was in agony from the pain of my skin (it was like being in a cage of fire). Neurontin and Lyrica are the only treatments for my nerve pain and they are essentially alike.

I think two months was long enough to test whether or not Neurontin some how caused the seizures. That and of course the fact that I had had two episodes years before taking Neurontin.

Also, I am so disabled by my PN, and the skin burning is so awful, I would rather take the Neurontin to be free of that pain. I can't drive, and I can't go anywhere alone, I always wear one of those 'alerts' so if I fall (which only happens about once a month) when I'm alone in the house, I can get help.

I will surely try organic coconut oil. Nothing to lose as I'm sure it's good for my skin, too!

Off to look up DNA testing for body chemistry and finding the right medication.

Thanks SO MUCH, Porkette. Do you live in Iowa or North Carolina? Just thinking pigs.

Hugs, ElaineD

Hi Elaine,

I will tell you that your Dr. may say "We don't do DNA testing" but that's bull they just don't want people do know what meds to take because they are making money from the drug co. I live in central NY and it was my Epileptologist who did a DNA test on me without me even asking. Another thing you can try is taking vitamin B12 1000 mcg. once a day the B12 calms the nerves. I wish you the best of luck and May God Bless You!

Sue

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

Elaine, have you had multi day EEGs, either ambulatory or in hospital? Luckily our child's negative myoclonics* and atypical absences are controlled with lamotrigine. Nothing completely controlled partials but those have tapered off for the most part. Having the generalized seizures show up after partials had our epileptologist surmise it was probably genetic but generally only ~30% of those with epilepsy are given a cause. And seeing how a fair number of those are going to be genetic or from injury or known infections, don't have high expectations there.

if you ask for a dna test, your doc may be confused. Sue is referring to getting your enzymes checked (not epilepsy genetic testing) which affects only some AEDs but is not a factor for all possible epilepsy drugs.

* these were generalized, not all are generalized from what I've read

Hi Pogo,

No, I haven't had multiple day EEGs, only three one hour sleep deprived EEGs, and one over night sleep study which also involved EEG information collected. These tests were all in the past 3 years and all were completely negative.

However, my myoclonic seizures, both positive (the majority) and negative (the minority) which started last April are escalating rapidly. I am 74, and I'm pretty sure what I have is Primary Progressive Myoclonus of Aging.

I will be seeing a specialist in epilepsy on the 30th.

It is so wonderful to have people like you give me support, pogo. I have felt so weird and alone in this, to say the least. And not a little scared! Now I feel I have some measure of what is going on, and while it isn't all sorted out yet (if it ever will be), at least I am not afraid of what is coming next, at least with this condition.

Hugs, ElaineD

Elaine,

You are not alone! While everyone's journeys are somewhat different, there are a lot of common themes. It sounds like you are coping well - well it sounds like you are allowing yourself breathing room which is helpful; everyone deserves a break from fears and worries this diagnosis can bring. I hope your upcoming appt goes well! You sound like you've done a lot of homework so you are able to get more out of your appt.

Dear Pogo, I guess my negative myoclonic seizures are generalized..I always collapse to the floor.

Is that the case?

Hugs, ElaineD

thanks for your encouragement

hi Elaine,

myoclonics are not something I would be sure about, a new eeg might be helpful. I always thought drop/atonic, myoclonic atonic and other ways one can have falling is probably better with video eeg to differentiate.

Hi Elaine,

Just like you I've had myoclonic seizures and I had to have a sleep study done along with a e.e.g. and e.k.g. to find out I was having seizures in my sleep. I didn't realize it was happening until I felt more tired in the morning when I woke up and I knew I had gotten plenty of sleep.
I started taking vimpat 300 mg. a day and since then the myoclonic seizures stopped but I'm still dealing with absence and complex partial seizures along with simple partial (aura) seizures which I've had for many yrs. My Dr. told me to stop drinking coffee and anything with caffeine in it and that was a big help stopping the myoclonic seizures.
Please take note when these seizures happen like if there's a low pressure in the weather, you're not feeling well, or if you have been on a cell phone for awhile during the day. All of these things can trigger seizures form some people. I found out being around a lot of people using cell phones triggered seizures for me and that was because my brain is sensitive to the frequency that cell phones use and in turn it causes seizures. I wish you only the best and May God Bless You!

Sue

Thanks so much, Sue, for sharing your history. My seizures just started last Spring (except for two isolated early seizures, one in 2012 and one in 2014).

I also had about 5 episodes of moving while dreaming and falling out of bed. This is highly unusual, and is what triggered the sleep study with EEG. But nothing showed up. I have a bed rail on my bed now, to prevent me from falling out.

I had all of the tests you mentioned in 2013 and 2014 and no seizures showed up.

I'm seeing an Epilepsy neurologist tomorrow morning. I came down with bronchitis on Thursday afternoon, but if I can possibly go to the appointment I will, because it will be ages before I can make another one.

This is the first time I've been sick in 3 years. I started IVIG three years ago, and was so pleased with not being sick that I'm rather devastated by this illness. My husband got sick the week before...so this is his first illness in many years, as well.

I'll let you know what the doctor decides I'm trying not to expect 'too much'.
I, of course, want some miracles.

Hugs, ElaineD

Hi Elaine,

I wish you the best of luck with your neuro appt. You may want to ask your neuro to do a DNA test on you to find the best seizure med for you all it takes is a few tubes of blood and some salvia from the inside of your mouth. Then the Dr. can find the correct seizure med for you with the least side effect.
Be careful if you have to go on med for your bronchitis I had that a few yrs. ago and my family Dr. put me on some med and it caused my seizure med to become toxic. I wish you only the best and May God Bless You!

Sue

Thanks for the 'heads up' about bronchitis, medications, seizure medications.

It does seem like it's always something.

I have a raging headache and slept really badly last night. I do want to see the doctor today, for sure.

But really, I'm just so miserable.

I'll let you know how the appointment goes.

Hugs, ElaineD

So Dearest Sue,

I saw the Epilepsy Specialist today. The diagnosis: my jerking and trembling, and my episodes of collapsing are related to worsening damage to my Autonomic Nervous System. I don't have Epilepsy

Autonomic nervous system - Wikipedia


The second 'bad news' is that there no medication for my problem. The shaking is just moderately unpleasant, but the collapsing to the ground is downright inconvenient.

So, I will just have this condition, as it stays the same or gets worse, with no treatment.

I am very sick with this bronchitis which is going around, and that is new for me, too. I haven't been sick for over 3.5 years, since I started IVIG. So I am just not a happy camper all around.

The collapsing is an orthostatic problem (when I stand up) and a failure of my autonomic system to make the adjustments necessary to stand up without falling down. I've been tested several times for orthostatic hypotension (falling blood pressure on standing) and it isn't that So it's some other part of the adjustment system.

In fact everything is way more complicated in our bodies than those cartoon diagrams that I saw growing up. The human body is amazingly complex, and every time I see a new specialist my mind boggles.

The shaking and jerking and trembling of my left side is less clear to the doctor, but he's very clear that I don't have any form of epilepsy and that there isn't any known treatment or medication. So I will always wonder when I will collapse again?

I feel very alone in this, but my husband is very supportive, which is a big help.

Hugs, ElaineD

Hi Elaine,

I would get a second opinion if it were me, if I may ask after you've had these possible seizures do you have a headache, feel confused after it's over, and feel tired? If you do these are seizures. Also from what I read about what the Dr. said you have it can cause heart problems and take my word I have that. Heart problems can lead to seizures sometimes do to lack of blood flow to the brain. It's up to you but I would get another Drs. opinion.
Wishing You only the Best and May God Bless You!

Sue

Those are all the questions the Epilepsy specialist asked:

I don't get confused.

I don't have a headache.

I don't wet myself.

I don't feel tired.

I don't black out.

I just go down, and get back up (with difficulty because I have mobility problems).

I've had two EEGs and a sleep study with EEG in the past 3 years...all perfectly normal.

So, I really think he's right.

So I'm slowly stopping the Depakote. The doctor said if the Depakote didn't help, nothing would.

And the condition developed while I was taking 3600 mg Neurontin (Gabapentin), another reason I wondered how it could be true seizures.

SO, I'm in bed today with the bronchitis from h..l. I guess it lasts up to 3 weeks. So I'm a bed potato for today.

Thanks for all your support and care over the past week, Sue.

Love, ElaineD

Hi Elaine,

I think I know what your problem may be and that's the Neurontin. I was on
it for a short time for a concussion and it caused me to have status epilepticus seizures, then I saw on NBC DATELINE where 2 employees reported the drug co. because they found out the drug can cause seizures for people who have never had a seizure in there life. If you find you aren't having anymore problems once you get off the Neurontin you may want to see a lawyer. There's millions in lawsuits against this drug co. for what it's done to people.
Wishing you only the best and May God Bless You!

Sue

Hi Sue, I was on Neurontin for two years before the problem showed up. I did my research, and withdrew from the Neurontin. The problem did NOT go away.

I don't think it was the Neurontin.

My doctor for Epilepsy works with my ordinary Neurologist....all connected to Duke Hospital. The sense is that since I have a host of neurological problems related to autonomic neuropathy that in all probably this is just another piece of that package.

Thanks for all your help.

Hugs, Elaine