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Take control of your epilepsy and seizures. Seizure management has never been easier.
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My name is Jamie and I am a 23 year old female with Epilepsy since I was 10 years old. I have been seizure free for almost 3 years now, the last two years I have been taking Keppra(1250 mg/day). Prior to Keppra I was taking Tegretol but decided to switch to give my liver a break, to maybe have more energy, and less birth defects.
When I started Keppra I felt depression and saddness, but this eventually went away (I was very encouraged) I found myself have a lot of energy. To make a long story short, the mood swings and depression came back in full force, coupled with frequent migraines and extreme tiredness. After 2 years of Keppra I am now here. My questions are this:
-Has anyone had migraines with Keppra? If so, did they decrease when the Keppra was stopped?
-Any suggestions for medications to switch to? (I would like something with low birth defects, no migraines, no anxeity, and metabolized through the kidneys) My Dr. is thinking of Lamictal. Any positive results as far as migraines and triedness goes?
Thanks so much for your time, this is my first time with a support group and I am finding it very very helpful and encouraging. I look forward to your suggestions and responses. :)
-Jamie
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Recent Comments on this Discussion
I've been on Keppra XR for 11 months and haven't experienced any headaches. Lamictal was my headache!!! Everyone is different...listen to your body.
My 15 yr old daughter had big problems with Keppra. Behaviors, mood swings to the point of being somewhat violent. Very scary. It was a very difficult time. Her doctor now has her on Lamictal with Depakote. She also was put on 100mg of Vitamin B6. What a difference. My daughter is doing fabulous. As far as I am concerned I never want to hear the word Keppra again after the nightmare we went through.
I had big problems also about the same as your daughter i felt like commiting suicide my mom had to call the neurologist and he told her get rid of it so i than got put on topamax and lamictal and never had any problems, i hear ya that was the worst time of my life, i'm glad to hear your daughter is doing well. Take care and i'm glad i wasn't the only person with very bad side effects of Keppra. i hope this was of help.
Not to be argumentative, but I'm really surprised with all the bad rap about Keppra. I've been on Keppra since 2001, just after it came out and haven't had any seizures or side effects. The dossage is 3500mg./day along with Tegretol Xr and Topomax. Topomax had nasty side effects and since the dossage of Tegretol has been reduced, I feel so much better with more energy. It could just be luck I guess but I have no plans to go off of Keppra any time soon. For migrains though, my previous doctor put me on Vitamin B2 and that did wonders. The migrains were long before I was ever on Keppra and never could pin point what caused them. Hope you find the right med and dossaage that works though. Good luck
I'm also surprised that Keppra reacts badly with others too. I've been on it for at least 6 years and it is fantastic. I've found the side effects eventually lessen as the years progress. Topomax sure had some nasty side effects for me as well. Vitamin B supplements and exercise work wonders. Clobazam also worked well for me but I gained a tolerance to it. Take care, T.
Have you tried adding vitamin B12 with the Keppra? My son has Epilepsy and is on Keppra and this does help. Not sure if you tried this or not, but it might be worth giving a shot before you switch meds....
Jamie,
I am 32 yr old mother of 3 healthy kids. I have been on Tegretol since I was 15. When I was 21 I gave birth to healthy twin boys, thank God. But the last few years, my seizures have increased, my Dr says because my body is use to the meds, so along with 1000mg of Tegretol I now take 1500mg of Keppra XR. I have never felt so bad in my life. I never had any side effects with Tegretol. I go back to Dr next week and I am going to tell him that I refuse to take Keppra anymore! I spend 4-5 hrs a day crying uncontrolably. I have no energy or motivation. I rarely get out of bed, and when I do its just to move to the couch so I can be around my kids. Since I started the Keppra I still have as many seizures as I did before Keppra. I would definitely consider switching back to the Tegretol if it was controlling your seizures. My Dr always told me that it has the fewest side effects. When I was pregnant with my twins, I was still taking 1000mg a day of Tegretol. I was just monitored closely throughout my pregnancy, because of twins and because of my meds. Good Luck Hon!
Stacy
My daughter Jamie has been on lamictal since she was diagnosed about 6 yrs ago. She takes 600 mg twice a day and did not have any problems but she started having break thrus and the doctor added Keppr XR (2000 mg once a day). She also feels tired and has headaches, but all these medications have side effects. She just keeps going.
hi,
if the tegratol was working then you may want to look at going back on it. if not there are other medications that work on the principle of the sodium transfere tube to stabilize the cell electrial discharge. Vimpat. I think the name is. has just be approved for use here in the u.s. To answer the question about headache and keppra. i am just one person and all are different. I have had keppra headaches,twice a day that last for about an hour, since i started 9 years ago. the changing of medication is a difficult one. the biggest issues, are control and side effects. For me the benefits of keppra were more than the bad side effects. hope it helps. rikk
Thanks for the replies! It helps to know that headaches come along with the Keppra, so it's not just me. :) Changing meds is always difficult and scary, but these migraines may be worth the process. Thanks.
I was diagnosed with Epilepsy 11 years ago and was prescribed dilantin which worked well until 6 years ago. I caught pneumonia and was given Levoquin which should never be taken if your proned to seizures. After feeling better I was prescribed 1000mg. of Keppra (as a cushion ) I did experience headaches, but I took 500mg in the and the other 500mg. before bedtime. I take vitamins (B and a general) and have been practicing YOGA. I can feel the difference in my "mood" if I skip a day of practice and exercise. I've been seizure free since. I realize Epilepsy isn't a "one size fits all" disorder, but I've found being informed as much as possible helps..
Just as an FYI: In Jan. my insurance co. would only cover me for the generic form of Keppra (not dilantin.) They told me it was an "expensive drug." After much research and the support from my Neurologist I'm covered for brand.
I've been on Keppra for 3 years now together with Lamotrigine. I also experienced initial side effects that dissipated and then came back in full force. I started taking vitamin B supplements in addition to my regular multi-vitamin and I have to say that it made a massive difference! I didn't even start taking vit B for that reason, but realised a week later that I felt much much better. Maybe reduce your Keppra dosage and get an addon treatment and take lots of vitamin B. The migraines could be auras that don't develop into actual seizures since they are physiologically identical as far I understand. Hope you find a solution!
I started on Trileptal and it made me dizzy, then I went to Lamotrigin/Lactimil and I haven't had any problems. The doctors always bring up Keppra first thing, but I've read more bad things on discussion boards about Keppra than about any other AED that I just flat out say "No Thanks." Some people have the rash problem with Lamotrigine, but I haven't heard of many other problems. I also take Zonegran as an add on. I love, love, love Zonegran. It's not for everyone, expecially if you can't afford to lose any weight, but it's doing me wonders.
I still have some problems, but life is a lot better.
I have been on Keppra a lil over two yrs now, at first it was KeppraXR, 1000mg/day. now I was on Dilantin 500mg/day and felt great, but was having too many breakthrus(4-5 a month) so my doc put me on the KeppraXR, bad, bad, BAD "Keppra migraines" everyday for nearly a yr! would start with-in an hour od taking my dose, and last several hrs. then they slowly started to disapate, but my worst nightmare was the weigthgain! I was (b4 Keppra) hypothyroid, skinny, never excersised, ate what I wanted.. with -in months of being on Keppra I'd gained nearly 30 pounds, and even though I excersize DAILY now, and heck, a Toddler eats more than I do now. I could/can not lose any of it.
My ins. would not pay for the Keppra XR and so my Doc put me on the generic form, of regular Keppra, no headaches with it, been on it for 8 months, but still cannot lose the extra poundage! it's depressing the hel out of me..
NOTE: I myself notice something, something the docs have not said anything about. being on Keppra made my hair and nails STOP I mean STOP growing! I have always had to trim my bangs 2x/week b/c my hair grows so fast and did right up till they put me on Keppra! in the past 6 months I have reduced(slowly) my dosage from the 500mg 2x/day to only once a day(before bed) and my hair has started to grow again! not as fast as normal but it is growing.. still no seizure too, not even an aura!
Something else that happened, a few mnonths ago, I ran out of my meds, was out for 2 days, on the second day of this 2 day period, I happened to have to have a thyroid test, and although my last test came back hypER(they've reduced my synthroid 3x's since being on Keppra) THIS test after not taking the Keppra for 2days came back extremely hyPO thyroid,told my endo doc about not having my Keppra for 2 days(I picked up my keppra on the way home) , he retested in 2 weeks, and, on the lowered dose of Keppra, my test results came back with-in normal range..
NOW, tell me again how Keppra doesn't cause these significant changes??? hmm.. the proof is here, If Keppra is on your plate, then nothing else CAN be, your hair will stop growing, and how ever it works to prevent seizures it also prevents your metabolism from working, and if you're taking Synthroid it will mess with your test results!
This summer I have to go back to my doc, in July, I'm going to lay this info on him..
please tell me , how are your seizures on Zongram?
..I haven't lost my mind, it's backed up somewhere...
My 9 yo daughter has been on Keppra, 500mg twice a day, and has been seizure free for the past year. I have noticed some odd behavior sometimes, like getting really upset with her brother over something minor. However, I usually chalk it up to her being late taking her pill or missing a evening's pill recently. But I just try to talk her down and we move on. The most important thing is that she is seizure free. The doctor originally wanted to give her Topamax and made no other suggestions when we declined. However, when we did go back, Keppra was suggested. My daughter's EEG testing shows generalized epilepsy in the area that is linked to migraines. My daughter has never complained of headaches, expect after a seizure.
Maybe this is something you should talk to your doctor about. See if you can get an EEG and have him look at activity in that area of your brain. Also, you may want to consider that the extended release pill is not the best. Did you have these problems on the regular pills? I hope you get better and find a medicine that will work for you without the side effects and the potential birth defects. I know how scary that must feel because I feel it for my daughter who is still in grade school.
ChiTownMom - Just A Mom Doing Her Best For Her Child
Hello!
I have traveled long and far looking for answers to the problems I now face. Many interesting people and stories have been shared.
Unfortunately, nothing really seems to be of what troubles me.
Drugs:
Kep 1000 mg twice/day + Depakote er 500day / 1000nite + ( day 5) lamictal 25 mg day
Have never shown any signs of scaring on any test, did an amblatory eeg (24 hours) with no signs of note.
The Problem:
I get these (90% of the time within 30 mins of waking up from sleep) 'spells', for lack of anyhting else to call them, where I get what I can only describe as an anxiety rush / attack followed most always directly by stoppage of breathing. the entire 'spell' lasts a few seconds up to a min or maybe two. Yes, I have actually, ( by recall later, as I do not notice at the time)found myself on the floor between the bed and bathroom either from a mid- nightor AM trek to the rest room.
No recall. I have woke up in the morning, on occasion, not knowing who, where even WHAT I am.... talk about freaky! Strangely, these times I do not panic, I try to recover and sort things out.
As recent as last sunday I tried to figure out when I was working and what time I had to leave to get to work on time and was very very concerned! This was sunday, I realized I work Mon - Fri. and had a little more relife at that point. These memory black outs are brief, but seem an eternity!
Usually people say the meds make them tired. Well, good for them, I am restless and find it very difficult to sleep after aboout 3-5 hours. This sleep then awake see saw for the next 3-5 hours ( relative to the first time frame) makes me very run down - yet not tired!
Conclusion:
I believe these to be side effect induced ( likely enhanced with the disorder) from the meds. I have yet to get any solid advice from anyone, professional or not. The B vitimin agenda is something I have seen recently: this I will start on soon.
I get no headaches. This may be from the Depakote. It is said to be a marvelous migrain med.
I do drink, I have noticed NO difference when I drink a little or a lot or none at all over any period of time.
These times are not easy as I search for a solution, or at least some way to lesson the chance of these 'spells'.
Thx for your participation,
-MikeD