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?

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

Thanks!
 

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!:)

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

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!

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.

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:)

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.

Well my husband is having those staring episodes again, witnessed by others this time. Just stopped talking and stared then said what were we talking about? And some people at work saw him just fixated on things. Lasts only a few seconds. He is completely exhausted. sleeping most of time when off. I wonder if he is having more of these per day and just don't know it? I'm really worried about him. He also has a vp shunt and I wonder if symptoms are due to that, even though neurosurgeon says shunt is fine.

Take care!
 

Hi Lisa,

I'm sorry to hear that your husband may have had a sz. from what you described it sounds like it may have been an absence sz. also known as petit mal sz. I've had this type of sz. for 41 yrs. now and I will get a daydream look on my face, continue talking to others or working then when the sz. is over I'm confused for a few seconds trying to remember what happened before the sz. and then I used to get headaches that lasted for about 2 hrs. and I was exhausted also and I wanted to sleep. The headaches and sleepiness stopped after the surgery.
If I may ask does your husband have any sleep disorder, or snore? The reason why I'm asking this is because sleep disorders can lead to sz. and also heart problems. I'm going in for a sleep study in a couple of days I'm just waiting to hear from the sleep lab. Also my Epileptologist has asked me if I had any heart problems because often heart problems can trigger sz. if there's not enough blood flow to the brain. My prayers are with you and your husband that everything goes well. I wish the both of you only the best and May God Bless You!

Sue

Wow sue he does snore at nite and has high blood pressure and hyperlipidemia. maybe he needs to do a sleep study. never even crossed my mind about that. i guess we will find out more on tuesday at neuro appt. hopefully cause he is just miserable. He gets severe headaches too. extreme fatigue.

Hi Lisa,
I'm sorry your husband isn't feeling that good, take my word I will have days when I'm exhausted even though I go to bed early, I feel tired and my husband has told me I snore very loud. When I saw my Epileptologist last Thursday both my husband and I told her what was going on and this is why she ordered a sleep study to be done. If I have sleep apnea this can effect my heart which in turn will cause me to have more sz. do to blood flow and feeling tired.
You might want to write down any questions that you want to ask the Dr. so you don't forget. I make it a point to do this as well as renew my perscriptions. I hope and pray that all goes well for your husband and You and May God Bless You Both!

Sue

Sue~thanks for listening to me:) I'm so concerned with Dean, He has been in bed for 3 days now, only up for 20 min at a time. Had another seizure to day when I got home from work. Luckily he was off for 2 days, but called in tonight. He just can't go on feeling like this. His shunt seems a little swollen this eve. I wonder if it is the cause of some of this. I just don't know. He had confusion real bad after the seizure for a while. This is a man who usually never complains and is not one to miss work, but since his shunt our lives have been turned upside down. so many unanswered questions. hopefully Tuesday we will get some answers and maybe further testing to see what's going on. Have you ever had a video EEG? do you have to stay in the hospital? I just wonder if you can wear an at home monitor like a cardiac monitor?

Hi again Lisa .... I've had a video EEG twice at Barnes - October, '05, before my first surgery and May 07 before my second.
I think most e centers do their video EEGs differently. At Barnes I was wired into a bed and watched by a TV .... watched every second. Meds are radically reduced. lol lol -- when I needed to go to the bathroom I spoke into the air - I knew I was being watched and listened to - and someone came into my room to "help" me out of the bed and to walk to the bathroom. I was left alone while using the toilet but that's it. I was watched while I brushed my teeth !
I was really in bed .... not even allowed to drop a leg over the edge.
When the docs decided I needed something other than the bed I was loaded onto another bed with wheels and rolled into another room where they could make me exercise long and hard while wired. Yup -- that made me seize! lol.
The rooms at Barnes weren't nice or pretty but they did each contain TWO beds....... one patient per room but Barnes thought everyone dealing with such extreme testing would need a relative or such. And they knew a relative would demand to be with someone having such extreme testing.
I hope I didn't talk too much .... I just wanted to tell you that a video EEG has to be held in the hospital.
Again -- best wishes

Hi Lisa,
Just like Wren I have had video e.e.g.'s done 3 times and my Dr. cut me back on my sz. med before I went into the hospital for the test so I would have a sz. They put the electrodes all over my head, and had me on camera around the clock except when I used the restroom. They also had a 25 ft. cable hooked up to me so I didn't have to stay in bed all the time I could get up and move around, watch tv, etc. by doing the test they could see any time I had a sz. and what was weird is there were a couple of times they told me I had a sz. but I didn't feel it at all.
If your husband hasn't had a blood test done recently make sure he gets one. I'm wondering if he's really tired because he may be anemic meaning his red blood count is a little low and that can cause a person to want to sleep all the time. This has happened to me a couple of times do to my sz. meds but now I take Folic Acid 1 mg. once a day and that has stopped the anemia plus it helps control my sz. a little also and it's good for the heart.
I wish you and your husband only the best of luck and May God Bless You Both!
Sue

HI Sue~Thanks for the info. I took him to family md today cause I was so concerned with him and she is doing a CBC, CMP,B12 and Folic Acid levels along with a TSH. Today he has started to see spots and circles in his vision at times? Bad headaches. She said he may be having complex migraines. Anyway hopefully We get some answers Tuesday:)

Hi Lisa,

I wish you and your husband the best of luck. Often before I have a complex partial sz. I will see colors in my eyes in a zig zag form that go from one eye to the other this could be an aura (simple partial) sz. and maybe it's leading into a absence or complex partial sz. and that's why your husband is having headaches and feels really tired. I found over the yrs. that after I had a sz. I felt better if I got up and continued on even when I had the headache and sleepy feeling because it made those feeling go away faster if I was active but when I would lay down I felt more tired and miserable.

Maybe some of the meds. your husband is taking is lower in white or red blood count and this in turn could be causing a lot of the problem. I'm glad he had a CBC done because this will show everything going on.

Before I started to have sz. I started having migraine headaches that would last for hrs. if not days. this in turn lead to my sz. there is a connection between the both of them according to my Epileptologist.
I wish you and your husband only the best of luck and May God Bless You Both!

Sue

Well his blood work all came back great! So no infection, no anemia! :D I'm so glad. now just waiting to see neuro, he seems to be feeling a bit better today. Thanks for the support :hug:

Hi Lisa,

I'm glad to hear the good news that your husbands blood work came back fine. It's up to the both of you but when you and your husband see the neuro you might want to ask for a DNA test to be done to find the correct sz. med and be sure to let the neuro know of any other meds your husband is taking. I've found that over the yrs. the neuro doesn't know as much about meds as a pharmacist so often I will check with my pharmacist and he can really give me details on the sz. meds will interact with anything else I take.
I wish you and your husband only the best and May God Bless You Both!

Sue

Thanks Sue, I have the DNA test on my question list for neurologist. Since its our first visit I'm thinkin he will answer most of my questions, but is there any thing else I should ask?

Hi Lisa,

You might want to ask if there's any connection to your husbands heart problems triggering the sz. I would also ask the neuro to do a e.e.g. and MRI if these tests haven't been done yet. Ask the Dr. to do a special e.e.g. if your think that certain sounds or colors could be triggering your husbands sz.
Be sure to describe what the sz. are like, find out what area of your husbands brain is triggering the sz. and if needed ask the neuro to do a veeg
(video e.e.g.) so they can watch your husband on camera to see what his sz. are like and whatever you do don't let the neuro push a lot of sz. meds on your husband because often they will do this to make money for themselves. I wish you and your husband the best of luck and May God Bless You Both!

Sue

Neuro Appt
 

So we went to the Nuerologist today for the first time. I don't know I guess it went ok. They are going to schedule a sleep study with EEG, and started him on Lamictal as they wean him off the keppra. He was unable to walk foot in front of one another almost fell, and then was also unable to stand feet close together hands up and eyes closed. Also nerves in legs not responding as they should so also scheduling a nerve conduction test:eek: That's new:confused: So I guess we're still confused on if he is having the seizures or not. Still feels terrible, but I guess we have to start somewhere:(

Hi Lisa,

Take my word my balance has always been bad since I got epilepsy. My neuro would try to get me to try and walk a straight line but I never could and this shows what area of the brain may be triggering sz. It's the cerebellum in a persons brain that helps them keep there balance.
Just like your husband I'm going in for a sleep study in a couple of weeks. This will show if he's having any sz. while sleeping as well as what area of his brain is the most active.
I tried Lamictal a few yrs. ago but I was allergic to the drug and I had to go off of it. Take my word the e.e.g . will be a big help to find out what's going on. I wish you and your husband only the best of luck and May God Bless You Both!

Sue

Thanks sue and Darlene!! I am soooo glad I found this website and friends I can talk to. I feel like I'm at wits end. Dean is so depressed and aggravated and I can understand why, I just don't know what to do. I hope the Lamictal helps. I know the dr. went over the side effects and hope he doesn't get any, can also make his headaches worse although I don't think they can get much worse. Thnaks again for all the help and for listening to me!!
Lisa

Hi Lisa,

I'm glad to hear that things went well for you and Dean. I'm sorry he is feeling depressed but take my word that comes with the epilepsy and the sz. med a person takes. Also if Dean has had any type of open heart surgery that can also cause depression. I know this because my dad had a triple by pass done a few yrs. ago and he was very depressed after the surgery and he was like this for about 1 yr. if not longer.
Wishing the both of you only the best and May God Bless You!

Sue