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Epilepsy For support and discussion about Epilepsy and Seizure Disorders. |
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01-19-2017, 11:47 AM | #1 | |||
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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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01-21-2017, 03:15 PM | #2 | ||
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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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01-27-2017, 07:38 PM | #3 | ||
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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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01-29-2017, 09:26 AM | #4 | |||
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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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01-30-2017, 06:29 AM | #5 | ||
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Senior Member
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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 |
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01-30-2017, 08:05 AM | #6 | |||
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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 |
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01-30-2017, 09:45 PM | #7 | |||
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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 |
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