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Primary progressive myoclonus of aging.

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Old 01-12-2017, 04:27 PM   #11
Porkette
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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
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Old 01-13-2017, 09:40 PM   #12
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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
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Old 01-14-2017, 06:17 AM   #13
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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
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Old 01-14-2017, 12:04 PM   #14
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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

Last edited by pogo; 01-14-2017 at 12:19 PM. Reason: Added * note
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Old 01-16-2017, 09:09 AM   #15
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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
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Old 01-18-2017, 02:35 AM   #16
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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.
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Old 01-19-2017, 11:47 AM   #17
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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
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Old 01-21-2017, 03:15 PM   #18
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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.
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Old 01-27-2017, 07:38 PM   #19
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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
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Old 01-29-2017, 09:26 AM   #20
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Quote:
Originally Posted by Porkette View Post
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
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