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Newly diagnosed complex partial seizures

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Unread 12-09-2012, 07:49 PM   #1
blondie90210
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Arrow Newly diagnosed complex partial seizures

Hi all I have been having what I was convinced for many years seizures which were not picked upon previous EEG's. On Thursday my EEG finally picked up abnormal brain activity and I've been diagnosed with Complex partial seizures. These mainly occur at night and have probably caused my chronic insomnia as I have more than one at night. I wake up with a body tremor then black out for a few seconds (I think) and on waking I can't move, my body is exploding in goosebumps and when I open my eyes there are faces/shapes/swirls of color jumping all around me. I was told this is an hallucination. After a minute or so I am able to wake up and move enough to walk but am disorientated, weak, shaking, my heart is racing and feel nauseous, my stomach and bladder go into over drive for a few hours after. I then experience extreme tiredness. During the day and most evenings I experience auras, I generally smell burning or really bad smells, have weird patches of goosebumps running up and down various parts of my body and I either get extremely agitated and or so tired I could fall asleep on the spot! I sometimes experience hearing and visual problems and have strange tastes in my mouth. The worst part is at times when I experience these auras my hands literally jerk what ever I am holding in them and in the past two weeks I have broken so much glass, I just drop things all the time. I have been under allot of stress over the past few weeks and wonder if this has contributed to the frequency of the seizures? I am seeing my neurologist tomorrow with my EEG results to see where to proceed from here. I have super ventricular tachicardia and am wondering if there's anyone out there who has this and how they tolerate anti epilepsy drugs? I take Vasomil for the tachycardia and did not tolerate Carbamizepine at all. I tolerated Topamax well a few years back for migraines but my heart problem was not as severe as it is now. I also have slightly low thyroid levels and my thyroid profile showed that it has been attacked by a virus? I have goiters and nodules on my thyroid. Can this been contributing to the increase in seizures? I am certain I will be sent for a CAT scan this week as I can't have an MRI because I have titanium in my spine from a disk surgery. Are the CAT scans as accurate in picking up leisions, tumors etc on the brain? I am tempted not to take medication because I am concerned about the side effects and at the same time my seizures are getting more frequent and I'd love to have a better quality of life. As it is I live in so much pain from my neck and back from bulging disks etc. Any advise would be greatly appreciated. Thanks so much
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Unread 12-10-2012, 03:26 AM   #2
Darlene
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blondie90210,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

You should see an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are usually at University or big hospitals. Your need to cut out the carbs and starch foods because they will trigger seizures. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.


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Unread 12-10-2012, 06:56 AM   #3
Porkette
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HI Blondie,
I have cp sz. also and I found that taking vitamin B12 once a day along with cutting back on starch foods and carbs helped a lot. Also a low thyroid can trigger sz. as well as stress and lack of sleep. I am wondering if you are having myoclonic sz. because this type of sz. happens when a person first goes to bed and when they wake up in the morning. Put a cold washcloth on your face when you start to have any aura sz. this will calm the neurons down in your brain and stop the sz. it's known as cold water therapy.
I found that taking vimpat greatly reduced my complex partial sz. I wish you the best of luck and May God Bless You!

Sue
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Unread 12-13-2012, 04:18 PM   #4
blondie90210
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Hi there Sue
Thanks so much for your advise. I will start taking vitamin B12 again, I stopped taking it a few weeks ago as I ran out and have noticed an increase in my seizures and stress and lack of sleep are definitly triggers for me too as is anything with Aspartame. Horrible stuff. I will stay off the carbs as much as possible. Am going to see a specialist physicion regarding my thyroid to see if we improve my levels the seizures will stop? Can seizures ever go away without medication are we always one step away from the next seizure I wonder? I really don't want to have them, they make me scared and feel disassociated from my body almost like I'm a zombie. I wonder about the seizures I am having at night as it seems I just fall alseep and bang I'm wide awake with a big jerk of my body, anxious and disoriented, shaking like a leaf, then I try get out of bed and I'm weak and feel like I'm about to faint. I also have problems as I'm falling alseep some nights, it feels suddenly like I'm losing conciousness and I battle to keep myself from giving in. My whole body can't move, does that sound like it's part of the seizures? Is it possible to have different seizures through out the day and night? Anyway I guess with time I will work through all this. Thanks again for advise. Take care and God bless you too. Linda
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Unread 12-13-2012, 07:25 PM   #5
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Hi Blondie,
It's great to hear from you again, if you start taking vitamin B12 take 1000 mcg. once a day for adult dosage and 500 mcg. for teen dosage.
I've gotten the most help seeing a Epileptologist (Dr. specializing in epilepsy) I have found that this kind of Dr. if further a head in understanding epilepsy and the Dr. has had me on the least amount of meds since I've had the sz. I even was able to have brain surgery to help reduce my sz. a few yrs. ago.
Complex partial sz. can lead into tonic clonic (grand mal) sz. if you have a lot of them. I haven't had this type of sz. expect when I was put on the drug "neurontin" which caused me to have status sz. where I was out of it for 40 min. to 3 hrs. the drug co. making the drug was sued by many people because they found that the drug can cause sz. The best thing for you to do is to have a DNA test done this will show what sz. med will work the best for you with the least side effects. I will tell you that there have been many cases when the sz. stop I have a cousin who had grand mal sz. for yrs. and when she went through her change her sz. stopped.
If you notice that you feel tired in the morning after sleeping at night you may have a sleep disorder like sleep apnea and this can trigger sz. and be causing the epilepsy for you. When you see your Dr. tell them everything that you told me about how you feel when you go to bed and they might want to do a sleep study on you. I had one done but there was no sleep apnea or sleep disorders.
It is possible to have different types of sz. I have absence, complex partial and simple partial (aura) sz. If you start to notice a sz. beginning make your hands into tight fists and tighten up the muscles in your body for a few seconds this can sometimes stop the sz. My Dr. told me to do this back in the 1970's and it has stopped a lot of my sz.
You can get the book titled "The Epilepsy Diet Treatment" by Dr. John Freeman this explains the ketogenic diet which works great stopping or reducing sz. I've been on the diet on and off for a few yrs. and it has really helped me a lot. You may have to see a dietician to get you started on the diet. I wish you the best of luck and May God Bless You!

Sue
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Unread 12-13-2012, 07:27 PM   #6
Porkette
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Hi Blondie,

I forgot to tell you stay away from foods with MSG in them this will also trigger sz. for many people. Here's wishing you well and May God Bless You!

Sue
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