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Old 03-28-2013, 04:04 AM #1
Lisa14 Lisa14 is offline
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Crazy seizures?

Hi Everyone! I'm new to this site. looking for answers. My husband had a vp shunt placed in oct 2012, since then has had severe headaches, tingling around top of head, increased agitation and anxiousness, and short term memory loss. he has periods of confusion and has moments where he will "zone in on things" which only lasts for a few seconds, or he has been seen staring off. feels like in a fog most of time. shunt is fine per neurosurgeon. Has had CT, MRI, SHUNTOGRAM done and has been adjusted x 2. Neurosurgeon thinks he is having seizures and has him on 750mg of keppra twice a day. Had EEG done and was normal. PCP today put him on klonopin and amitriptyline, and tapering him off the keppra. We don't see the seizure neurologist until april 9th. anyone else have these symptoms? does it sound like seizures?
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Old 03-28-2013, 06:51 PM #2
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Hi Lisa,

Welcome to the forum! I just saw my Epileptologist today and I've had sz. for 41 yrs. What you are describing sounds like your husband may be having absence (petit mal) sz. I have this type of sz. and I will get a daydream look on my face, but blank out not realizing what is happening when the sz. is going on. I will continue talking to people as well as cook or work I just don't remember anything then after the sz. is over I feel very confused for a few seconds and it's hard to remember what happened before I went into the sz. and I have a headache along with feeling tired and I want to sleep for about 2 hrs. I tried Keppra, clonopin, and many other seizure meds but I found the best things that helped me were taking vitamin B12 1000 mcg. once a day, Diamox, vimpat, and mysoline. Keppra increased my sz, like crazy.
You mentioned that your husband a shunt put in correct me if I'm wrong but was this for his heart or something else?
Tell your husband to start keeping track of all of his sz. and write the time and description of each sz. down on a calendar along if he has been sick or if there's been a low pressure in the weather also if your husband is under to much stress or is very tired this can trigger sz. for him.
My best advice to you is if you aren't happy with the neuro have your husband see an Epileptologist at an Epilepsy Center which are at University or large hospitals they can do a lot more for some people with epilepsy than any neuro I've ever seen. If your husband keeps track of his possible sz. his neuro may see a pattern in the sz. as to what time of day/night the sz. happens along with what days of the month.
Have your husband cut back on the caffeine, starch foods and carbs and also cut back on nutra sweet (aspartame) because it been proven that these foods especially nutra sweet can trigger sz. by causing more electrical activity in the brain. I wish you and your husband only the best of luck and May God Bless You Both!
Sue
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Old 03-28-2013, 07:43 PM #3
Lisa14 Lisa14 is offline
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Originally Posted by Porkette View Post
Hi Lisa,

Welcome to the forum! I just saw my Epileptologist today and I've had sz. for 41 yrs. What you are describing sounds like your husband may be having absence (petit mal) sz. I have this type of sz. and I will get a daydream look on my face, but blank out not realizing what is happening when the sz. is going on. I will continue talking to people as well as cook or work I just don't remember anything then after the sz. is over I feel very confused for a few seconds and it's hard to remember what happened before I went into the sz. and I have a headache along with feeling tired and I want to sleep for about 2 hrs. I tried Keppra, clonopin, and many other seizure meds but I found the best things that helped me were taking vitamin B12 1000 mcg. once a day, Diamox, vimpat, and mysoline. Keppra increased my sz, like crazy.
You mentioned that your husband a shunt put in correct me if I'm wrong but was this for his heart or something else?
Tell your husband to start keeping track of all of his sz. and write the time and description of each sz. down on a calendar along if he has been sick or if there's been a low pressure in the weather also if your husband is under to much stress or is very tired this can trigger sz. for him.
My best advice to you is if you aren't happy with the neuro have your husband see an Epileptologist at an Epilepsy Center which are at University or large hospitals they can do a lot more for some people with epilepsy than any neuro I've ever seen. If your husband keeps track of his possible sz. his neuro may see a pattern in the sz. as to what time of day/night the sz. happens along with what days of the month.
Have your husband cut back on the caffeine, starch foods and carbs and also cut back on nutra sweet (aspartame) because it been proven that these foods especially nutra sweet can trigger sz. by causing more electrical activity in the brain. I wish you and your husband only the best of luck and May God Bless You Both!
Sue
Hi Sue!
thanks for replying!! My husband does have a shunt it is for hydrocephalus, which may be a cause of his seizures? We are seeing a seizure neurologist in the epilepsy center at Barnes Jewish hospital in St. Louis, on April 9th. Is this the same as an epileptologist? Have been reading other posts and they too recommended the B12. He just started it today. I hope it helps. Thanks for the great advise and God Bless!
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Old 03-29-2013, 12:51 AM #4
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Lisa,

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.


Please keep us up to date on your Husband's situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.
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Old 03-29-2013, 06:13 AM #5
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Hi Lisa,

Thanks for filling me in regarding the shunt I'm not to smart in that area. There is a difference between a neurologist and Epileptologist. A neurologist deals with many different neurology disorders epilepsy, MS, ADD, ADHD etc. where an Epileptologist deals directly with epilepsy and knows how to treat it much better with fewer meds, and they are more updated on treating epilepsy and the causes. An Epileptologist can also treat a person with other neurology problems also like a neurologist but the Epileptologist is better educated and has much more experience with epilepsy.
I've seen many different neuros in the 41 yrs. I've had epilepsy but they were never able to help me out as well as my Epileptologist and I was able to have brain surgery to help reduce my sz.
An Epileptologist also works with a team of Drs. neurosurgeons, and neuropsychologists and the Drs. all make a decision together if a person wants to have brain surgery if it's going to be safe for that person and what the side effects could be. Here's wishing you and your husband only the best and May God Bless Both of You!

Sue
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Old 03-29-2013, 08:05 AM #6
Lisa14 Lisa14 is offline
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Sue,
Thanks for the info, have dean's apt moved up to April 9th now. If this neurologist can't help him, We will surly look into an Epileptologist. Take Care!
Lisa

Darlene, thanks for the welcome!
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Old 04-01-2013, 09:28 AM #7
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Hi Lisa .... my next appointment with a neuro at the CAM of Barnes Jewish is April 30. He sees only adults with epilepsy. Barnes is a remarkable place - a place to feel safe and cared for.
Best wishes.
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Old 04-01-2013, 07:37 PM #8
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wren, I agree Barnes Jewish Hospital has been the best! I can only hope his Neurologist is as good as his neurosurgeon. I wish you all the luck on your appt April 30
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Old 04-01-2013, 09:51 PM #9
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I think I have some of the same sumptoms as your husband. I have read klonopin and lamictal are a good combo of drugs. I'm on keppra and don't like it. I will see if I can change meds at my next appt. good luck at your appt.
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Old 04-02-2013, 01:59 AM #10
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Wren,

My thoughts and prayers are with you at a time like this. Hope everything goes great for you. Please keep us inform.

Darlene
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