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UPDATED: Mon, 01/30/2006 - 6:14pm
mrtigre
Keppra 500mg
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Hello; I would like to know if there are any online users that have used or know the drug Keppra for epilepsy. If so, have you heard of or wittinessed the side effect of hair loss? I have seen it written up somewhere in the merck manual and on some web sites. I have been on keppra for 2 years and it was just when the neurologist raised the dosage from 1500mg/day to 3000mg/day that it started by me losing my left eyebrow then it went through the scalp and facial hair? if anyone has information about this , please let me know? thanks
By mrtigre at Mon, 01/30/2006 - 6:14pm | 5983 views | 50 comments
Topic: Medication Issues
Recent Comments on this Discussion
I have been on Keppra for two weeks 500 mg. I feel tired all the time. You r right erpilepsy stinks. I hope I don't lose my hair.
Hi,
My son is 13 and has been on Lamictal 500mg per day for the last 2 years. His seizures were better but not fully controlled. He started on 500mg Keppra x2 a day four weeks ago. Initially the side effects were horrible. He was tired all the time, very dizzy and generally had little balance. His mood was awful. He would shout and yell over silly things. When I talked to him he said he felt angry all the time but didnt know why. I felt like my happy son had been replaced with a different child. I asked for advice on the forum and was told that he should be given a complex b vitamin (his neuro said it couldnt hurt). I started the Vitamins during his second week on Keppra. This last few days I feel as though we have had a breakthrough. His mood is 100 times better and he is far less dizzy and tired. Im hoping that the side effects are finally passing. Although this all sounds terrible he has not had a seizure since 2 days after starting on the Keppra. It was for this reason I decided to give it more time. I believe that the vitamins have been a big help and strongly recommend them. At no time has he had any hair loss so this obviously does not happen to everyone. I have read stories of success and failure with this drug and was very concerned about it however, if my son continues to be seizure and side effect free I will be very happy with it. After many years of different drugs this is the first combination that is showing such results. Its early days but im hopeful. I advise you to give Keppra a chance. It will take a few weeks for the side effects to settle but when they do you may be surprised at the results. Good Luck
Can you update us here on this thread about your son? Did the Keppra and Lamictal continue to keep him under control? What types of seizures did/does he experience? My son will be 13 very soon, and we are dealing with simple partial seizures that occasional generalize. As of now, he is not under control. Would love to hear how this worked.
Hi, I am 27, female. 110 lbs.
I am on the EXACT same meds as you son including the same mgs.
The lamictal should balance out the moods swings from the Keppra. Also, it takes a while for the body to get used to Keppra and the mood swings will go away. I was on Dpeakote for many years, which worked. However, it has bad effects on the woman's body or anyone's for that matter so i switched to these ones. It was hard because Depakote worked very well for me and under small dosage.
I have had two breakthrough seizures since i switched due to changing meds. one was my fault because i tried to completely go off all my meds b/c i thought i didnt have epilepsy anymore since the depakote controlled it for 5 years. STUPID me! I have grand mals and i was living by myself. I had one int he shower. Right before it happened, I felt like it was my last moment on earth. i woke up outside of the shower, thank God. That was 5 months ago. I still have auras but use ativan to control them. Then 2 weeks ago I had a second surgery on my leg (broke my leg and ankle suring soccer) and after the surgery i was in my bed and the nurses were all around me trying to put in a catheter (TMI?) and all the commotion around me was too much stimulation on my brain and i had the worst seizure EVER! and I have had over 20 grand mals since i was 13. I went in tachycardia and couldnt come out of the seizure. They had to call two ICU teams to help. It was bad. But thankfully i was in the hospital, or i would have been a goner. So my seizures basically are messing up the normal life i once had (kinda controlled). I have only had two seizures in the last year but both life threatening. If your son has grand mals, be careful what other drugs your doctor prescribes because either the keppra or the lamictal have, when i have a seizure, been making the seizures themselves worse. They have been lifethreatening. Good luck! Mood swings are not a bad side effect if his seizures are controlled. and make sure he takes them on time!
I will be 70 years old next month and the day before Thanksgiving I set down and woke up the next day in the hospital. The doctor said I have epilepsy. I did not know a person could get epilepsy at this age. He put me on Keppra 500 mg twice a day. I have not had another spell. I still am in shock over getting this at my age. Does anyone else know about the age thing? Thanks so much.
I am still waiting to see if anyone knows a person getting Epilepsy at an older age.
It's actually one of the two most common ages to get it.... early childhood and over 60. I'm on keppra twice daily as well. Did you just have one seizure or have you had multiple?
Epilepsy is a mysterious condition. People of any age can develop it. You may have had it all your life and not known and your seizures have just progressed into something that affects you physically. It's hard for anyone to say. I'm 30 and I didn't know it, but I've have been having seizures since I was 6 or 7, maybe younger. My siezures just started to recently manifest themselves differently within the last few years to where they were actually disrupting my life. Doctors didn't understand the "episodes" I was having and I couldn't explain them well enough, I guess. The seizures progressed and changed until I had a full blown grand mal and ended up in the ER last May. I was finally diagnosed 24 years later! Now I understand what all those different "episodes" and "spells" I've been having all my life now that I know what I have. I look back and I can even see the pattern of them getting worse and progressing.
So, this very well could be something you have always had, just never knew, or it could be that you just all of the sudden developed it late in life. Either is very possible.
I wish you the best of luck. I know this is very tough to get used to.
Thank you so much, it has been hard getting use to , I had two other smaller spells and was told they were TIA's then when I had this big one, woke up in the ICU the day before Thanksgiving, and then was told I had epilepsy, I was stunned but as my doctor told me it is better than having the strokes because that can leave you paralized and you can control the epilepsy with medication. I am doing good, have not had another one and seem to be doing good on the medication. Thanks again for your good wishes, hope you the best.
My daughter started on Kepra on Friday, May 5. She doesn't have seizures but debilitating migraines. She is 17 and has not gone to school since the 17th of April.
The Kepra has left her dizzy, drugged feeling. Even though she is sleepy and tired and drugged feeling cannot seem to fall asleep at night. She explains it has seeing colored blotches in front of her eyes.
I am wondering if the side effects get better or if they will just stay the same. The neurologist is wanting her to increase every 7 days to a maximum of 2000 mg a day. She is also taking Topamax once again.
The Topamax has never really had a lot of side effects except for the fact that everything tastes really bad. She lost weight the last time she was on it, but it was manageable.
Today, she doesn't have a headache but can barely lift her head up.
As a mom, I want her to be without pain, but also, I want her to be able to function.
Any suggestions from anybody out there would be greatly appreciated.
stenogal2
Stenogal, if it's any comfort to you, I felt absolutely awful on Keppra (250mg 2x a day) for the first couple of weeks, then a little better the third week, then a little better again the fourth week, and suprisingly, when my doc upped my dosage to 500mg 2 x a day I didn't suffer any noticeable side effects at all. I did lose a couple hanks of hair the first 2 weeks on keppra, but that seems to be under control now. I actually think i needed the 1000mg a day to finish clearing the last cobwebs out of my noggin and I feel much better now than in months.
So take heart; it can be several weeks til the body adjust to Keppra, so it might get better and better. Also, somebody on another forum said to take Vitamin B6 (folic acid) supplements with Keppra to combat the side effects. I have always taken the B6 with my morning Keppra (figuring it wouldn't hurt, even if it was just a placebo effect), and frankly I'm unwilling to quit the B6 just to "see" if it was helping.
I should mention I'm only on Keppra; not combined with other drugs.
Good luck,
Jules
They say to take pyridoxine with Keppra to counteract the possible side effect of depression and rage. I believe its in the vitamin b family. justdewit38 yahoo messenger. 23 year old autistic son with seizure disorder.
I've just started Keppra and the first few days were AWFUL. I was tired which I could handle, the real problem was that I was having trouble speaking. I couldn't get out what I wanted to say and am still stuttering. My friends and family said that I sounded like I was drunk. I'm doing better now but am looking to find a different medication.
Just another person making a note to stick with the Keppra, everyone I know has experienced terrible side effects for roughly the first month; i.e. feeling "drunk", headaches, nasuea, dizziness. I had to walk with a cane for the first three weeks I was on Keppra because I completely lost my sense of balance. I have now been on Keppra for over a year and feel better today than I have in months. All of the side effects have cleared, it was just a really rough patch in the begining; especially if you are on a high dose. Give it some time, everyone I know who is on Keppra experienced these things in the begining, but they are all better now. Can't comment on hair loss I have Alopecia Universalis (my white blood cells killed all my hair folicles from head to toe) independent of the seizures or the Keppra. So, I wouldn't know if it has caused any hair loss for me. ;)
"If I can capture truth in it's simplest form; beauty will follow like a sledge hammer." -Thoreau
Im experiencing the same side effects with my son,he is very weak to walk or even move in and out of bed,his appetite is xcellent,but is very constipated,he is currently on 1000mg keppra twice a day combined with 500mg valpro,he weighs 60 kg,pls help..
Just wanted to correct myself: Vitamin B6 is NOT folic acid. I still take the B6, and I still don't have noticeable side effects from Keppra. Don't know if the B6 has anything to do with that, but don't want to risk finding out! :)
My son is 7 years old and takes 500 mg of Keppra daily. I was wondering if he needs to take any supplements with this, does anyone know?
HI Jules,
Please let me know how your progress goes. My son is only on keppra too.500mg. 2x's per day. the doc wants to increase it to 1500 mgs per day in the next two weeks. He is only 14 yrs. old. He hasn't had a seisure yet.
thanks.
Hi,
I just wanted to know how the keppra was going. My daughter was put on a low dose of 250 mg twice a day. She has been very tired. They do not want to increase it as of yet. Is your son experiencing side effects? Is he still on the keppra.
Hi there, RKM!
Just noticed that you'd asked about my progress. I have now been taking 500mg twice a day since May 3rd, and I've gotten better, not worse. The only noticeable side effect from the doubling of Keppra was the return of vivid dreams, which then went away again after about 2 weeks. Feel better than I have in years. Take care.
Hello Jules (or is it Juperee?)
My name is Kim. I am 42 years old, and have just switched to Keppra 500mg twica a day from Depakote 1500mg a day. I had been taking Depakote for 20 years! The problem wasn't seizures (I am blessed to have gone 11 years seizure free now) but that I became mysteriously toxic over the years intensifying so bad in the last year that 3 weeks ago, I could not function. I couldn't remember my clients, I began to feel like I was in slow motion and the rest of the world was in "fast mode". I have not driven since. So far so good with the transition. No breakthrough seizures, I have felt very doped up while on both drugs. As of Sunday, I will be only on Keppra. I am keeping my fingers and toes crossed. Last year, I tried to switch to Lamictal, but it was a failure due to wierd Pancreatic pains, and blood in my stool.(whatever!) Let me know how you are doing, and if there are any other hidden side effects out there lurking! Kim
Hi Kim
can I ask if your neurologist said it was the Lamictal that has made your memory deteriorate? I have been on it for years (I am 25) and have also been on Keppra (1000mg morning and 1500mg night) for the last 6 months and thought it was the Keppra doing this to me. I am forgetting appointments, names - everything. It's really embarrassing. I am also on other meds but am not sure which one is causing it.
Thanks
Sam
aussiesam
i went from depakote after taking it for 14 years, to keppra and lamictal together.
the problem is that our brains get used to the depakote since it is also used for bipolar. my neuro told me that when you go off of it, you brain cells, which have been formed differently from the dep. and used to the drug. so when you come off your brain is confused. my experience is that i was finally feeling emotions for once, where everyone thought my personality changed but i guess that is really me. it sounds like your brain is just getting used to being non-emotional for 20 years and is kinda acting bi polar. "fast mode" is the high. if you get depressed, thats the low. luckily no breakthrough seizures...i did have them...its weird because i survived on 725mg of Depakote and now i have to keep increasing this one. :(
i am on keppra 500 mg and i have the craziest dreams where i wake up and believe it was real.depakote gave me weird dreams as well but this is different.
i thought it was only me!!!
Hi
I used to take 3000 mgs a day of keppra. At present I take 1000 mg a day of keppra until I withdraw off this AED completely. Taken keppra for 3 years now and never suffered with any hair loss during that time. The only AED which is giving me hair loss now is my new AED and that is Topamax.
Take Care
Teri
My son, 15, is on Keppra, when he started taking it, it was like he was in a bubble all the time, wouldn't talk, etc. We backed off the dosage that he was taking and added pheonbarbital he now talks more than he has in 2 year.
My son was a normal 9 year old boy who started seizuring with no reason. He since has been on multiple medications and in a coma once, and now functions on about the age of a 5 year old.
Any help would be appreciated.....currently we are looking at medicinal marijuana....any thoughts?
I Have a 16 yr old son and sounds like they have gone through something very similar,how much keppra are you currently on and are you happy with it???My son has become very weak,Im considering Topamax cause there is nothing else,it is very scary when you read comments on Topamax as well..Can anyone suggest anythingelse???
you are on alot of keppra! do you have grand mals?
i didnt like topamax, i would rather want to eat than not like food, and i couldnt learn or focus or concentrate. not my fave.
if the keppra can work on its own, do it. but if she can spare the topamax, get rid of it. because she will not be able to concentrate or focus on ANYTHING! those migraines sound AWFUL!!! I feel so bad for her. Seizures suck but they come and go. I dont know which is worse!
I have been on Keppra for several years 2000 mg am and pm. I take this
with Lamictal (100 mg am and pm). The combination has worked great for me.
I tire more easily than I did prior to the seizures and medication (it could
also be age - I am 49 years old)and much better than any other medications
that I have tried over the years. Prior to this combination I had trouble with breakthrough seizures, memory problems, and being extremely tired. I feel
lucky to have found a combination that works so well for me. Unfortunately
medications react to everyone differently. I hope things work out for you
as well as it has for me.
George - NYC -- I know that must sound like corny advice, but a large percentage of folks on Keppra (like myself) do notice that it is a possible cause thinning of hair. I've always had that problem over the 30 years I've been taking anti-seizure medications, but it's been a bit more on Keppra. However, Keppra's my best-working anti-seizure pill ever. I began on 3000mg per day, but am down to 2250mg per day. What used to be really rough tonic-clonic seizures are now usually quite mild, short, and in the form of auras. What's more important, the nice blonde hair or a pretty realistic lifestyle once again? I chose the latter!
Greg
When I was on Keppra, I was also on dilantin at the same time. While on the Keppra, I too was losing my eyebrows slightly, and it really gave me dandruff on the scar from my first surgery back in 1989.
Since Nov 2007 I have taken 500mg Lamictal/ day. My seizures are stressed induced. In December 2007, I began having them again. My legs and arms would shake and was tired. Eventually they went away after stress from school ended. In March 2008, they returned and became worse. I started having auras, blurriness of vision, shaking of legs and hands, loss of balance, and jumbled speech. I have been incredibly tired in the mornings and start to feel better by the afternoon. After starting 500mg Keppra per day, I'm still experiencing vision blurriness, being tired and shaking, but I feel significantly better. Thank gosh I have friends to take care of me.
I've been on Keppra for about a year now. I have seen no real side effects.
Only thing that I have noticed, is my weigth loss. I was on Depakote before this and that made me retain weight, so I think Keppra is the reason for my weight loss.
I've been on Keppra for about a year now. I have seen no real side effects.
Only thing that I have noticed, is my weigth loss. I was on Depakote before this and that made me retain weight, so I think Keppra is the reason for my weight loss.
I have a 19 year old daughter with Autism & epilepsy who has not been on any seizure meds since 1998. Previous to that she was on phenobarbitol which caused her to have more seizures & depakene (depakote) which slowed down her development & she still had 2 major seizures a year. She is now living in a group home & comes home on weekends. She still has simple partial & complex partial, but has not gone into status. I took her to see a neurologist in feb 2008 but was hesitant to start her on the keppra (dose was 500mg bid) because she is not normal & may not be able to communicate any side effects to me. I am feeling pressured by the people at the group home to get her started on the medication. I'm not sure what to do, although I have asked the doctor to start her off very slowly i.e. 250mg daily for 1 week then 250mg twice daily, then 500mg at bedtime & 250 mg in am & then 500mg twice daily. Still I am afraid she will lose cognitive skills & am worried about migraines or hostile behaviour. What should I do? I am thinking to try her on biofeeback therapy
I've been taking 375mg of Keppra for the last 2 days and can barely keep my eyes open! Hopefully the side effects will ease off by the time I reach the full dose of 1500mg per day.
I was taking 1500 a day and had to ask Dr to decrease it due to my hosility. I was a raging manic and my family finally told me that they all agreed. He put me down to 1000mg 2/500mg 2x's per day. I still have a little edge, but I am much better. I like the way it controls my seizures, and I like having that little edge too!!
We might have Epilepsy, but it doesn't have us