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Timing of medication

When my son sleeps in on the weekends even just past an hour when he usually takes his meds during the week, he starts his morning with simple seizures. Anyone experiencing this? Does it mean more medication in the evening to tie him over? Will ask his neuro about this, but wondering if this is common?

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Re: Timing of medication

Morning Purlover

Well I read your post and have a couple of questions. When talking about medications you failed to mention the names of those and if they were regular medications or extended release.

I know about medication in several ways. When I take my medications I have them timed where I take them 12 hours apart. Basically I take them morning and night. Or 8am and 8pm.

If he is on er he needs to take them 24 hours apart. If he is on regular meds they need to be taken basically 12 hours apart.

Medication lose strength nearing the end if the time frame which is why he may be having simple seizures if he sleeps in and his meds are not taken at dertain time.

I had the same thing happening so I asked Doc if that could be the reason and at that time he thought it could be, After I started that I had fewer seizures. 

Hope this helps

Re: Timing of medication

Thanks, Joe. Your responses are helpful. My son's seizure cocktail is keppra, lyrica, clonapin and carbetrol; none of these are the extended release form. During the week he takes his evening meds at 6:00 and his morning meds at 8:00. Then if he sleeps in even a little past nine during the weekend, the trouble starts. What you said makes sense and I will review it with his neuro. From reading your posts you've been dealing with seizures a long time. Is there an age when I your seizures settled down? My son is in his late twenties, so growth spurts, etc. aren't a factor. Thanks again for responding.

Re: Timing of medication

Hi again Puglover

No problem answering your questions.

First thing I would suggest is changing the evening meds to 8. since medicationslose their strength over timeso the medications he takes at 8 in the morning he is on medications that he took 14 hours before. I take mine at 8 am and 8pm. That is a simple fix. But do check with his neuro.

As for the medications he is on I have taken several of them and they are better than the ones I was taking years ago. I am currently taking Keppra 750g 3-morning and night. Which is maximum dosage. A few months ago we added Vimpat which the dosage was increased at to 150mg morning and evening. Keppra has been the best medication I have been on in the last 15 years. It reduced the number of seizures I was having. It also reduced the length of time in th seizures as well as the time to focus (get back to normal). With the addition of vimpat the seizure count has gown down even farther. We are working with this combination thinking it might get me seizure free. Medications are being created to work on types of seizures and they work better than they did when I was young. I know because I have been in several drug studies because I want people today to get medications that don't drug them down like the medications did when I was a teen. 

As for the time I have been dealing with seizures. Wellllllllll I was diagnosed with epilepsy when I was 13 which was in 1963. I had seizures the year before. I have been dealing with epilepsy for a little over 50 years. Back in the 1960's people with epilepsy were still being put in homes away from the public. In the 1970's many states were still not letting people with epilepsy get marriage licenses. 

As for when I had seizures settle down. WHen I was a teen and in school I had more convulsive seizures. I also had others which most teachers didn't think were seizures butthey found out they could have been. I was constantly being written up in class for day dreaming of not answering the question asked promptly. Those could have been absence or partial seizures. Especially when my test an quize scores were amontg the highset in class. The convulsions werew different and I had themabout once a month or every other month. Those aren't pretty to look at and they are kinda wierd to be in. Most epileptic or people that think afo seizures know about grande mal seizures where the person goes into a convulsion and they black out, Wellll grand mal seizures do but then so do focal motor seizures in some ways. Focal motor seizures start in one part on the brain which effects a part of the body on the other side. My seizure activity is in my left lobe which controls the right side of my body. My confulsive seizures would start with my right hand feeling wierd and rising up once it got shoulder level I went down and was in a convulsion which looked like a grande mal but I was aware of everything going on around me. I could see,hear and I understood what was being said. Friends would say ewwwwwwww I don't want to be around him any more. I avoided that person for a few days and they came and asked questions. Once they knew what was happening and they got everything explained they were generally the best friends I had and they not only watched out for me but they helped anybody with any handicap. In 1969 I came out of the hospital and I went over 3 years without any seizures what so ever. Not even Deja Vu. Since then I have had seizures now and then and the medication needed to be changes either the dosage or the medication. After being on 1 for 30 years I got toxic on it. Now I have seizures about 1 a week or 10 days. 6 mnths ago those were 8-10 a month. But these seizures are short generally 2-10 seconds and I am back to normal in 1-2 minutes. So  the seizures last seconds when before they lasted 2-8 minutes. When I was in my 20 + 30's I had fewer seizures but then I was drugged down alot. Back then I was asked by my new neuro "How do you wake up in the morning". He also told me the amount of phenobarb I took in one day could put the average man to sleep for 24 hours. Durgging the brain down stopped seizures but it was not easy on the body. I was great at work and did what was needed but on the way to and from I was asleep goingto and from work. Age does do things but medications are what id helping now. As for growth spurts wellllllllllllll yes the year I had the first seizures I was the one that grew and it was wellllllllll new jeans in april which were tucked under 2 inches so I would still have new jeans for school late in august. Nope never happened those jeans were ankle high and that groth spurt was when the seizures started. During that year and about 3 more months I grew about 10-12 inches. Since then I have maybe grown a total of 2 morew inches. I went from 85 in 6th grade to 148 in 9th grade. When I was a senior I weighed 156 and I didn't gain any more until I was 35. Yup I was put on a medication that made me retain water which I was taken off of but mt weight went back down to 165. 10 years later I weighed 185. I was also put on another medication which made me retain water again but it went to 265. The medication didn't do what we had hoped it would so I dropped some weight. But then with age and not getting the exercise I used to  get I have droped some of that. Currently I weigh 215 at one doctors office and 217 at another doctors office. But age does do things too

As for cocktails I have had many. both medication and drinking. When I was your sons age welllll I did go out and had fun with the guys. a couple of them knew I limited my drinks but then others were amaized at the number of drinks I had. Shirley Temples can do that and you can have fun and stay withing doctors guidlines. ALl of my doctors have said a drink or beer now and then does not hurt but no more tha 2 and they needed to be 2-3 hours apart ,I have beer and wine here in the house which will be brought out if comapny comes over. But then I also use them for beer beans or beer bread. And the wine is drinkable none goes to waste since I also use drinking wine to cook with.

I hope I answered you questions but do change the time he takes his meds at night and that could stop those seizures he has been having. I say that because I was basically having the same issue many years ago and once the change was made I had fewer seizures in the morning. But then sleeping in for me was waking up between 6:30 and 7. I have rarely gotten 8 hours of sleep. Even when I was in my early teens. Consider I had a paper route and the papers were dropped off on my proch between 4-5 and they had to be delivered in time to change clothes eat and catch the bus which was about 7:30

I hope this helps

Joe

Re: Timing of medication

Thanks Joe. The neuro upped his carbetrol yesterday and did suggest my son taking his meds later, which he started last night. He started feeling shaky/weird just waiting an extra two hours to take them, but his neuro said there might be a couple of days like that. You are slightly older than myself and I do remember how people with epilepsy were treated. One kid at my school had a grandmal and an adult actually stuck a spoon in his mouth! I really felt bad for him as everyone was standing around, horrified. I'm sorry for what you went through, but happy that some aspects are now changing around this condition. My son's drinking limit is 2 beers. If the increased carbetrol doesn't work, it might be an increase in keppra, which at higher levels he's already tried and hated because it made him anxious. Really takes the patience of JOB to get through this epilepsy/medication maze, but it's really supportive when others like yourself share their experiences!

Re: Timing of medication

No problem.

I also know about spoons or tongue depresents that were used back then. They were afraid the person in the seizure would bite or swollow their tongue. It has taken time but most of tha has been changed. If a person falls and hits the wall floor or anything else the jaring makes their mouths slam shut which if the tonuge is in the way it gets cut in the jar not because of the mouth shuting but the slamming in the fallother ways people can keep someong from swollowing their tongue are sliding your finger along the teeth and hooking it around the bacl teeth which holds the tongue down.

As for an increase in the dosage in his keppra. I am on the maxium dosage oer day which is 4500 mg. 750 mg 3pabs morning and evening. We also added vimpat which was added becasue I was having several seizures about 2-3 times a week. Those seizures were partial seizures which lasted seconds but the time to get back to nomal was longer because they were in a cluster. (not a cluster seizure but a cluster of seizures). We added the vimpat 3 months ag the first month to get to the dosage doc wanted me on the next month the seizures went down and they were 1-2  seizures a week and no clusters of seizures. I had an appointment and we increased the dosage to 300 mg a day. Now I have 1 seizure every 8-14 days. Both keppra and vimpat are made by USB and they wanted to try them to see if they worked well together. Well Doc can tell them they are for me. I will be taking my diary to him in 4 months.

Keppra have been one of the best AED's I have been on. It not only cut the time in the seizures down but it also cut the time to focus (getting back to normal) down too.

Oh and as for the reason we needed to add another medication. I had been in several drug studies and my seizures were 1-2 seizures a week. I was in my last study last week of Jan. I had gotten a new generic keppra and I was having more seizures. Doc didn't think it was the generic and he excused himself and checked a fine. When he came back is when he said it wasn't the generic becasue in the last 8-9 moths of the drug study I was on the real medication and not the placebo.

Aspects are changing and if things keep going they way they are now I might have the combination needed to get seizure free. I would love that but I also know I might not be seizure free. I was once before but that was when I was 20-24 a little over 3 years. Back then I drank but  Ialso watch the amount and most people never knew I was drinking Shirley Temples but then we all acted kinda crazy. What else do young kids do when they are drinking age???

I hope he gets things going in the right direction and he does get seizure free

Joe

Re: Timing of medication

Hi Pug,

Quick Question for you - does your son change up the time that he goes to bed on the weekends too?  Reason I ask is it might not be the medication, it could be "routines"...to explain.  I grew up dealing with seizures - diagnosed at 5, outgrew when I was 13, had a wicked virus and ended up back on meds when I was 17.  One thing that was consistently a trigger for me was if my day to day routine changed much.  Luckily I've been seizure free since July 2011 when I had right temporal surgery - got tired of trying med after med after med - am now 39.  Downside is I've kinda traded seizures for migranes, and well, managing them is kinda the same.  As long as my day to day routine stays close to the same, it helps lots.  To explain - during my work week I get up at 8am, get ready, go for a long walk, work 11am-8pm, go to bed by 11:00pm.  Well, on my days off I make sure I get up at 8am, go for a long walk in the morning, and go to bed by 11:00pm.  For some reason if I break that routine too much it catches up with me quick & a migrane kicks in.
Long story short, maybe it's something in the "week day" routine -vs- the "weekend" routine that is causing the minor seizures.
Just a thought. Hope this makes sense

GG

Re: Timing of medication

Hi GG,

You know, I thought about it being something in the "week day" vs "weekend" routine that might also be a factor. How wonderful that your TL surgery has kept you seizure free since 2011! His routine does change on the weekend. I suffer from migraines myself and changing the routine (especially sleeping and eating) is a definite trigger. A previous neuro told me that migraines and epilepsy have many factors in common, so what you've said makes complete sense. Thanks so much for your response :)

Pug

Re: Timing of medication

Joe was right about moving the evening meds to 8.  In most cases, it's best to equally divide the doses.  On weekends when we all like to sleep in, I still get up at 7am to give my daughter her morning meds.  Any deviation from our medication schedule always brings about seizure breakthrough.

Karen

Re: Timing of medication

Karen,

I agree with you, Joe, and GG. We tried the 8 pm and 8 am dosing this weekend, and all was okay. My son woke up on Saturday at 8 am, took his meds, and went back to sleep until 9:30 am, and then went about his usual routine, which I think is also helpful (GG's) suggestion. He will continue in this way because it seems to work; I didn't say that though because I don't want to jinx things. (This disorder is making me superstitious!). I'm happy I found this site and appreciate all this advice.

Re: Timing of medication

morning again PugLove

I am glad the routine worked and I know it can be a hassle but I also know it helped me once I was on it and was diligent in following it. If he ever gets on ER meds once a day keep taking them at the same time of day while on them.

I forgot to tell you I had a routine which started back in 1962 before I was diagnosed with epilepsy. I was taking my neds before leaving for the bus stop which was 7 amd back then give or take 10 minutes. Having a paper route makes things a little rougher when you have to get another paper because you threw one on someones roof or a dog picked it up and ran off with it. Dinner was generally over with between 6:30 and 7:00 so after dinner was when I took them.

One morning I was trying to find my meds because they weren't on the shelf in the kitchen. Well I turned and saw my dtep father with them spreadout on the kitchen table. A concerned step father is all I had considering he was countaining them to make sure I had not missed a dose. HE was a decorated Marine so I got them and hit the road. If I ever missed the bus I had a long walk to school

I had to change it during the last 14 years at the position I was in considering I was on a bus at 7 because I had to be at work by 8 so  I changed the time to 8 took them when I got to my desk and 8 at night.

Hope this helps

Joe

Sorry but there are times I get long winded.

Re: Timing of medication

Hi Pug,

Glad to help out.  Thought I'd let you know doctors have told my family there is a connection between seizures and migranes.  My mom and aunts had migraines, I'm the one that ended up with seizures first and migraines later in life.  I find there's a lot of similarities in the triggers - weather changes, various foods, routines and stress level are my top triggers.  Growing up my neurologists always had me keep track of what was different in life on days that I had seizures.  Now, I'm doing kinda the same thing for headaches.  I'm always told it's the drastic changes that can make a difference and well, if I take notes of them, based on my notes doctors put in place the right things to deal with it & battle through life. Also, lot easier to just write down differences once in awhile, than do a daily log.

Good Luck to you & your son.

GG / Erin