Seizures changing

[valeriedl]

My seizures are changing. They used to be mainly focal seizures where I'd just sit in one place and stare into no where. I might talk some, but it was usually just mumbling words that didn't make sense. I wouldn't know who people are or where I was. When I came out of it I had no idea that I'd had it.

Now during alot of my seuzres I'm doing crazy things. I'm still having ones like the one's that I described but I'm doing things like this too-

One recently I started swearing at my husband during it. His son (who is 25) had never seen me have a seizure before and this was his first one. I guess he sort of started yelling at me because of the things that were coming out of my mouth to his dad. When I was 100% again I looked at him and he had this evil look on his face just staring at me. My husband told him that I had a seizure and had no idea what I had just done, and I didn't.

I also had one where I kept my husband up all night having repeating crazy seizures that he had to call off work.

We sleep in seprate bedrooms because we have different schedules but mainly because he snores too bad. I went into his bedroom twice looking for my VNS magnet. On the third time I went in still looking for it he realized that I was having a seizure. He got out of bed and saw that my magnet was on the floor. I must have started to use it then dropped it. He showed it too me. I didn't care, I just started going all through the house opening drawers, cubbards and what ever else still looking for it. I must have been with it enough to see that he had my magnet because he got me calmed down and to sit on the couch about 15 minutes or so later.

He went into the bathroom to go and next thing he knows is here I come in pulling down my pants and starting to sit on his lap so that I could go. He hurried up and stopped me.

I guess I was doing crazy things like this all night. In and out of so many seizures that like I said he had to call off work because he got no sleep taking care of me all night.

At about 4am I 'woke up' and was back to normal (if you want to call it that). He was sitting on the chair and was watching tv. He leaves for work at 5am so I just figured that he had gotten up early but I couldn't figure out why I had been sleeping on the couch because that's where I was.

He told me some of the things that I'd done and I can't believe that I don't remember any of it. I had a killer headache all day the next day which is really the only way that I knew that I had any seizures.

My neuro increased my Keppra in the late spring. I was talking 1500mg twice a day, which I know is alot. Any time that I go to a dr they say "Is this right about how much Keppra you are taking?" My neuro increased it by 375mg in the evening and it seems that since then my seizures have started to get gradually different. My husband said that my whole attitude about things has changed too. I know that I had keprage before the dose was increased but I seem to have kep-super-rage now.

We mentioned this to my neuro and he told me that I need to see a psychologist/psychrist (can't remember which). I had the appt made but I got really sick and had to cancle it. I haven't rescheduled the appt yet and I'm not sure if I'm going to.

About 2 weeks ago I stopped taking the extra 350mg of keppra. My husband said that I seem to be starting to change. I haven't had any seizures yet so I don't know if that will cause any difference in them.

Anyone think that the extar keppra could have had to do with this?

 

[momof3boys]

well I can tell you my experience with Keppra. Ive been on it for over 12 years. I was taking the Keppra along with Carbatrol. I take 1500mgs twice a day, AM and PM. I was seeing a Neurologist a few years back, and was complaining of headaches all the time. He thought it was a sign of seizure activity wanting to come on, so he increased my Keppra from 3000mgs a day to 4000mgs a day. Lets just say I became a totally different person! And it wasnt for the good either! I was like a zombie! I felt tired all day long, sluggist, killer headaches, and then after two weeks, started having break through seizures. I had complex partial seizures. Couldnt drive at all. Being a stay at home mom, I was afraid of being at home with the kids by myself If I did have a seizure. After the break through seizures started, I contacted my drs office and kept leaving messages. I finally gave up and went back to 3000mgs myself. Once the drs office finally got back with me, they told me the dr I was seeing, got promoted to a different hospital, and I was put with his partner, Who Ive been seeing since November 2010. Once I saw him, He switched me from Keppra to Keppra XR. And also said to stick with only taking 3000mgs a day. Once he heard the symptoms I was experiencing, he said the increase in the Keppra was not a good switch for my body and by having too much, it can cause bad things to happen, rather than improve things. One good thing that did come with changing over to Keppra XR was the headaches I was experiencing before, had gone away. No more having to take excederin migraine medication! And it turned out to be cheaper than the Keppra. I was paying $150 for a six month supply of the Keppra, and when I went to the Keppra XR, it was $100 for the six month supply. Plus I got to use my Keppra savings card at the pharmacy, to save an additional $30. But now that our insurance changed things around, I can only get 1 month supplies through our local pharmacy and the 3 or 6 month supply through a mail in pharmacy, who doesnt accept saving cards. Anyways, It sounds like a talk with the dr is in order for you. After going through that month of increasing my Keppra to 4000mgs, I felt terriable! If you're experiencing what I had, I would for sure be contacting the dr to tell them about this.

I did end up seeing a psych dr after having a VEEG in march. All my years Ive had complex partial and grand mal seizures growing up. Now that I am 30 years old, my last grand mal being in 2000/2001, my dr had thought since I only had simple partial seizures that the seizures might not have been epileptic seizures I was having in the hospital. But after he referred me to a psych dr, and she evaluated things, she said Im most def having epileptic seizures. Seeing the epileptic activity on my EEG, and knowing the Keppra XR is controlling the seizures, and I havnt had any since then, has pointed out that if they were in fact not epileptic seizures, the Keppra wouldnt be controlling them. I would be having them alot. It had to be pointed out to my neurologist by a psych dr, but at least I got that part over with and Im now controlled with Keppra XR.

If you have any questions, feel free to message me.

 

[valeriedl]

Thanks alot.

I have a VNS implant and take a ton of meds in general:

Depakote 1000mg twice a day
Tegratol XR 800mg twice a day
Lamictal 325mg twice a day

The Keppra that I take isn't XR either

Since I got the VNS my seizures aren't as frequent and aren't as bad as they used to be. Before I got it I would usually end up in the ER after having a seizure. Really other than those things that's the only way that it's helped. I don't think that my meds have really been reduced since I got it, which was one of the reasons that I did get the VNS.

I might have one grand mal seizure a year, if that often, but all of the seizures that I have are all the other types. I'll have at least 3 seizures a month, but usually more -espically lately. It's been around the holidays though and it's normal for me to have more then.

Another thing that's been going on with some of my seizures is that I'm not 'blacking out' but I'm not with it and I don't know it. I'll be talking to someone during the seizure. I know what they are saying to me and when I talk back I know what I'm saying but it's not what's coming out of my mouth. I don't understand why the person might be asking me the 'seizure questions' - what's my name, where am I and things like that. My brain know's the answer but my mouth doesn't know how do say it. I don't know if that's the best way to describe it or not.

I've always loved my neuro - I've been with him from almost the start, around8 years now. He's also at a very good hospital - UPMC. But it seems like on my last two visits he doesn't seem to listen to what I have to say about what's going on. On my last visit espically. He just adjusted my VNS and typed what I was telling him into the computer and that was pretty much the extent of it.

If I do have a question that I call about it's usually my actual neuro that calls back to answer it and help me with it. However it might take 10 times of calling before he calls back 3 days later. One thing about the keppra and 'keprage' is that I'll get so frustrated that I'll call his office every hour (seirously, not joking) until I get someone to call me back.

I think that my neuro wanted me to see a psych because of my husband telling him about my change in attitude, not a question as to if I'm having seizures or not. I go see my neuro in Feb. I stopped taking that extra Keppra so I'm going to wait till that appointment and see what happens with my attitude then I'll decide if I'm going to see the psych or not.

My current nureo is about an hour away and my husband usually has to take the day off of work to take me to see him. I recently saw that there is a neuro about 15 minutes away from where I live and he deals with paitents with a VNS. The VNS is pretty much the only reason that I haven't tried to find a neuro closer.

I wonder if I could make an appointment with the closer doctor and 'interview' him to see if I might want to switch?

Do any type of pain meds work on you? I don't know if it's from all the other meds that I take or from the epilepsy in general but any sort of pain med I take does nothing for me. My neuro gives me headache meds and I also have some sort of shot to take, but the only thing that does anything is a bag of ice on my head and falling asleep.

I also have back problems. My dr gave me Vicodin for it which did absolutely nothing. Muscle relaxers helped, but only because they knocked me out. I started seeing a chiropractor and finally got some help! It was really weird though, after the seizure where I kept my husband up all night my back almost completly stopped hurting the next day. It was still hurting pretty bad before then. Don't know if the compo of the chiropractor and seizure helped.

 

[Endless]

Valerie,

I'm so sorry everything is going to hell in a handbag right now. Your doctor needs to get your seizures under control before they progress any further.

On the topic of headache pain: I have horrible headaches, pretty much on a daily basis. So I definitely sympathize. We're still working on trying to get them under control.

It's important to know what kind of headaches you are having to get the right drug to control them and to treat the pain. Different headaches = different drugs. Imitrex doesn't work for me much, either, partly because many of the headaches I have aren't migraines. Imitrex aborts migraines. Yours may be postictal headaches, or something else.

My advice is to see a headache neurologist (a specialist specialist) if you can. Headaches are incredibly complex and hard to sort out.

Pain meds

some people have a resistance to opoids. They don't have enough of the enzyme that converts the drug (like morphine or hydrocondone) to the active form of the drug that the body uses. Some people are also resistant due to long term use.

Other types, like anti-inflammatories, help for other kinds.

Watch out on pain meds. Using them too often can cause rebound headaches which can happen daily instead of the frequency of the REAL headache, which is probably less. My neuro limits me to any kind of pain med (whether it is a tylanol or a narcotic) to 2 days a week, both to avoid rebound headaches and to avoid resistance or addiction.

Here are some lovely lists of pain meds. If one doesn't work, there are others.
http://painmedicationlist.com/
http://www.emedexpert.com/compare/pain-medications.shtml

Kepprage - oh, yeah. I had that when I was on Keppra, too. If it gets to the point where it is unacceptable to you consider switching drugs or go to the psychiatrist to get another drug added to control the raging. Personally, I switched. But I know that isn't an option for everybody, and the side effects do get better for some people after some time (like months). Sometimes the kepprage is actually useful. It got a call back from the neuro for you.

Ever noticed how we take maybe 1-4 meds for our real disorder, and then about 10 more to handle the side effects of the 1-4? That's nuts.

Seizures changing - seizures change over time, either because of
- changes in meds or dosages,
- changes in how your body responds to the meds,
- exposure to a trigger, external or internal (hormones, health, etc)
- or just a natural progression, especially in seizures that are currently not under control

I'm so sorry you are going through all this right now. But thank you SO MUCH for sharing the story about a swearing seizure and your son. If you don't mind I laughed out loud. The kids ears must have been burning. I can just imagine his face. Did you have a chance to sit down and discuss it with him and explain it all later?

Much love and many hugs. Keep calling and bugging that doctor, get your meds adjusted, and everything is going to be okay.

P.S. Why wasn't your VNS magnet on your person? Ideally it would be all the time. An option: Banshee Wrist Wallet.
You can fold it over so it's shorter on your wrist. I carry my cellphone in mine.

 

[Cint]

Valerie,

I, too take Keppra, 3000 mgs. a day along with 200 mgs. of Topamax and also have the VNS. My seizures have changed over the years, and now that I have the VNS, I mostly have a few mild CP a year, whereas before I was having CP's and TC's every month.

I also take an anti-depressant and see a psychiatrist because of the depression that sometimes accompanies the temporal lobe epilepsy. I see an epileptologist at the UCHSC and she takes care of my VNS and the medications.

On occasion I do get migraines, but not like they used to be when I was on three AED's at one time. IMO, it's the combo of meds that brought on the headaches for me. When I was taking lots of AED's, I suffered migraines every day.

P.S. Why wasn't your VNS magnet on your person? Ideally it would be all the time.

There are magnets with wrist bands from Cyberonics.
http://us.cyberonics.com/static/images/27.jpg

 

[momof3boys]

For me, when I talked it over with the neurologist Im seeing now, he explained to me that sometimes the Keppra level can affect a person, and cause things like headaches or seizures to come about. I was on Keppra, since the age of 18, and then after turning 29, I started seeing this doctor I am now seeing. He said the Keppra when taking it, once I take my morning dose, my level will rise, but then half way through the time, it starts to slowly drop, causing it go to lower til I take my next dose. During that time its falling, was when I was having the headaches. So he said if he were to put me on the Keppra XR, it would stay in my body longer, not having the affect of going up and down like the Keppra would with my level. At the time, I was on Carbatrol ER too. That was also helping me with controlling my seizures. So once he switched me, it changed things and the headaches stopped. He said for some people, the XR medications changes everything and makes it a whole lot better! It did for me, to say the least! I have PCOS (Polycystic ovarian syndrome) I was dx'd with that at around the age of 18. My dr who I am still seeing for it, tried me on the Metformin, the generic medication, and it gave me really bad side effects. She switched me over to the name brand, glucophage XR, and it worked great! So I think all in all, my body handles the XR medications alot better than just the regular or generics.

Have you tried taking a Vitamin B-6 to help with the Kepprage? My dr told me about this last year and since then Ive started taking one in the AM and ive seen a difference when it comes to my attitude and just feeling better overall. If you havnt tried that, I would recommend trying that to see if it helps with the kepprage.