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July 2, 2011 at 7:52 pm #1068Maggie B
None of those worked for me, nor did Depakote. The only seizure medication which ever worked (and gave me no side effects) was Frisium, which is not readily available in the United States. I originally got it through NYU, but the cost became prohibitive (my insurance company wouldn’t cover it) so I now get it through a Canadian pharmacy at a very reasonable price. It has literally changed my life! It is supposed to become readily available in the next year or so…
March 28, 2011 at 7:49 pm #1066Nancye M
I have been taking Lamictal 200mg. twice daily for 2 years. I have not had any issues with it. He might be changing my meds or upping dosage because I seem to be having alot more seizure activity.
I took Topimax and HATED it. My first and only side effect was hot flashes. At the time I just didn’t like them, but now since I have started to cross that fine line of being an old lady, my “personal summers” aka. hot flashes are natural, I would prefer not to have them drug induced. I was only taking 25 mg. at first then 75mg. when I stopped taking them . Good Luck
August 8, 2010 at 9:54 pm #1062Deb B
Thanks for your responses. I had been away for a couple of weeks and was not able to “catch up”. Anyway, I have not yet switched to Keppra because I threw out my back and got put on muscle relaxants and pain meds and it was decided that it would be difficult to determine which side effects came from which drug(s). Fine with me. Tomorrow I have my six month MRI, then see the Neurosurgeon for results. Perhaps once that is all taken care of, I will give the Keppra a try. A friend of mine says just take the Boniva (or whatever you take for osteoporosis) and stick with Depakote. At least I know it works for me and I know the side effects and I have a pleasant disposition while taking it. Maybe she has a point.
August 13, 2010 at 9:07 pm #1064Bonnie
I’m sorry to hear that. How are you feeling?
Are you still considering staying with depakote, or trying keppra?
IMO, preventing bone loss would be better rather than taking boniva. And, I would want to find out if boniva would help, as the way depakote affects bones may be different from the type of bone loss boniva is prescribed for.
Hoping your back is feeling better…..Bonnie 🙂
August 1, 2010 at 1:08 pm #1060Bonnie
I hope that you continue to be seizure and aura free – that’s great. Hopefully the off feelings, etc. are just due to the change in meds and will go away once you are fully on the Vimpat. Seems like med changes can cause temporary side effects – based on what others have said on the various forums.
I will not see my neuro until early October, and will wait until then to bring up the keppra dosage. I want to give the B vitamins some time to see how they affect me – plus I’ve been upping my exercise (I’m working to get back to my exercise levels pre craniotomy). So far, while it may be too soon to tell whether is due to the B vitamins, outdoor exercise or both – I am feeling better and have even begun to drop some weight as my clothes are getting looser.
I hope Beth changes the link to our seizures group back to “groups” (I wrote a note on the “wall”) – did you notice “groups” have become “social issues”?
Sending positive wishes for a smooth transition with your meds………Bonnie : )
PS – Hi Deb….the Garden of Life Vitamin Code Raw B Complex I take has some higher levels of several of the Bs, but the dosage is 2 capsules (I note your Q re how much & Jaime’s response). Currently I take one capsule daily which puts me close enough to the RDA for most of them.
July 25, 2010 at 7:55 am #1048Bonnie
Hi Jaime – yes, I agree my dosage is high! I am hopeful that I can go back to my previous dosage and hopefully alleviate some of the side effects.
As for the vimpat and sleeping, you probably need to let your body adjust to it. Could this also be due to the reduced dosage of keppra xr?
Perhaps you could also try some of the usual suggestions for falling asleep – don’t eat dinner too late, exercise earlier in the day, use your bedroom only for sleeping (i.e., no TV in the bedroom), have a cup of herbal tea (such as chamomile) or hot chocolate, keep your bedroom cooler, go to bed and get up at about the same time every day, read something calming.
Let us know how you are doing on the vimpat.
I think a lot of BT survivors do have seizures (based on reading other BT forums and epilepsy forums), but perhaps not necessarily those on IJB. Or, perhaps members do not find the seizures group as it is not apparent it (or any of the groups) exist. I’ve noticed that new members miss the forum and blogs because of unfamiliarity with the web site and will post their questions on their own wall.
Hi Deb – I missed responding to your question re how much water/liquids I drink. There are several factors as it is also dependent on your level of activity. Both liquids and water count. I probably average 11-12+ cups which include water, coffee, milk, yogurt/fruit smoothie using ice, juice, tea, sparkling water. I also eat a lot of fresh veggies & fruit which tend to have a higher water content. I drink extra water when I exercise outdoors compared to my air conditioned living room.
Take care…Bonnie : )
July 30, 2010 at 9:04 pm #1056Jaime
I just started lowering the Keppra two days ago, so far it has been OK (I think). I cant explain it, no auras or seizures but some “odd feelings.” Hoping I will just adjust to the change. I hate the constant change of medications. I feel a little more off balanced and dizzy with the increased Vimpat, but in the past that went away in a few weeks. Were you able to get your Keppra dose lowered?
July 25, 2010 at 7:56 pm #1054Deb B
What is a “normal” dosage of Keppra? I am also “sensitive” to meds and try to take as little as necessary. I haven’t had any seizures for years, so I’d prefer not having to take much of this stuff. Also, although I drink alcohol rarely, it would be nice to have the occasional glass of wine when out to dinner. Also, are you saying that the B vitamins found in a multi vitamin are not enough? How much B-complex is needed, and also how much B6?
July 30, 2010 at 9:10 pm #1058Jaime
The typical dose for Keppra is anywhere from 1000mg-4000mg. The highest I was on was 2500mg and I was miserable. On 1500mg I was much better with the side effects. I am super sensitive to all medication (even over the counter meds I take child doses). I started in 500mg of Keppra and went up as the seizures persisted. Now that I am on another medication as well, I was just lowered to 750mg of Keppra.
If you havent had seizures in years is there talk of eventually getting you off meds? My neuro said she would consider it after 2 years of being seizure free and a normal EEG. It doesnt count for me though because I have residual tumor.
I was told the vitamin B in the multi was not enough but it can be harmful to take too much. my doc said to find a vit B complex that is the closest to 100% needed, not much more. I have seen Vit B complexes that is like 5000% of daily needed, those are the ones I was told to stay away from. How is the Keppra working for you?
July 20, 2010 at 8:52 pm #1046Jaime
Wow you are on a high dose of Keppra! I take Sundown Naturals brand of Vitamin B. I just started this brand. Since my Vimpat was increased last week I am having trouble falling asleep, but then I am falling asleep ALL day. I feel like the Vimpat wakes me up and night, but puts me to sleep in the middle of the day. I do not know how that is possible. I have also had a crazy week, so I will wait a bit before I call my doctor about the side effects. I cannot believe that this forum is not too busy. Do most BT survivors not have seizures? I just assumed most of us would. Maybe it depends on the location on the tumor, I dont know.
July 20, 2010 at 8:21 pm #1044Bonnie
Hi Deb, Jaime!
To respond to some of the questions in this discussion….
I take the generic form of keppra. 1500 mg 2X/day. I’ve been taking it for 2 1/2 years.
I just purchased a raw B-complex made by Garden of Life, Vitamin Code. I had tried a B complex by Nature Made and am unsure if it helped or not. It seemed to at first, then not sure. Will let you know how it goes.
I had earlier stated that I could not find a link between weight gain and keppra. Well, I have found many who have stated weight gain as a side effect from keppra. I searched further on the epilepsy forums, and, a website new to me, for providing info about various meds:
I did a search for keppra – many report weight gain – and other effects I experience. Several state a reduced dosage of keppra helped reduce/eliminate their symptoms. I plan to discuss reducing my dosage with my neuro, especially as my symptoms became more noticeable since my dosage increase.
Hope you both are doing well!
Bonnie ….sending : ))
July 11, 2010 at 1:34 pm #1038Deb B
Exactly what does the B complex and/or B6 vitamins do? As I am just starting Keppra I was unaware of this recommendation. How much water do you drink per day and do any other liquids count? For instance, lemonade or juice? Also, what dosage do you both take?
July 11, 2010 at 1:44 pm #1040Jaime
There were a few studies that showed that vitamin B helps counteract some of Keppra’s side effects. Mainly the mood and emotional ones. This article sums it up nicely: http://www.ehow.com/way_5635996_homeopathic-alternative-remedies-ke…
I currently take 1000mg of Keppra XR. It is being lowered as my dose of Vimpat is increasing. The highest does I was on was 2500mg and I am currently on the lowest dose Ive been on. What dosage are you getting? Dont be too scared of Keppra I have been on it for over 1.5 years. It is the longest I have ever stayed on one medication (seizure or any other type). Good luck!
July 11, 2010 at 7:50 am #1033Bonnie
Hi Deb –
“My neuro today told me that those things you wish to say to certain people when they irritate you or say stupid things, but you are able to “bite your tongue”, often come out on Keppra. He says you have a harder time on Keppra to watch what you say.”
In my case it was just the opposite! I experienced some effects from my BT that I really didn’t attribute to my BT until after my BT was gone and those effects began to lessen/go away. Specifically I had less patience and would say the types of things that I would not have said previously. Doing this was not usual for me as I am normally a pretty laid back person and not argumentative. But for several years prior to my diagnosis that began changing.
Interestingly, prior to my diagnosis I used to state that I had no symptoms which could be attributed to my BT (headaches, balance issues, etc.) – but realize now that there were some other types of symptoms due to my BT – especially as they are lessened or gone now.
Also, I had a lot of cognitive effects from my surgery but as I stated above, have been able to “retrain” my brain for the most part. What remains is most likely related to my surgery. Which has been a blessing as I, too, have a mentally challenging job. 🙂
To sum up what I do to help with the keppra side effects:
- Drink a lot of water
- No alcohol (actually my doc forbids as could cause seizure activity; also keppra drug warning against drinking alcohol as can increase keppra drowsiness side effect)
- Exercise (including aerobic based) to help combat fatigue & lethargy, and stimulate brain
- B vitamins – go for a biological based B complex. Rather than one mega dose –go with something closer to a recommended daily allowance formula and start with one dosage per day – can increase to 2 dosages/day (spread out) if feel you need it. B vitamins are water soluble, so taking too much will just be wasted as it is excreted by the kidneys.
- I’ve read that many take extra B6 (I take the B complex at this point and will see how it goes)
- Allow for at least 8 hours sleep/night – maybe will not affect you with the sleepiness side effect, but it does me.
Also – some on the epilepsy forums will not take the generic version (same for some neuros – will prescribe only the original keppra). I discussed with my neuro as I am on generic since it became available (cheaper). I have had 3 generics and have not noticed any differences in effectiveness.
Hope this helps. Thinking/sending you best hopes and wishes that the keppra works out well for you……………Bonnie 🙂
July 11, 2010 at 9:27 am #1036Jaime
I completely agree with all of your recommendations. I have to admit I have had 1-2 drinks on Keppra without any major effects. But I rarely do this and I would not recommend it as 1 drink on Keppra feels like 3. I also take a Vitamin B complex. Which brand do you take? I had a little of the behavior effects from Keppra, but only when I was on a higher dose. I am super sensitive to medication and usually can only handle a small dose. I noticed I was more impatient and a little “snappy.” I felt cranky. Once the dose was lowered I felt back to normal (whatever that is). My neuro recommended that I take the name brand Keppra ONLY because that is what I started on. According to her your body processes generic and name brand differently. She has no problem with the generic in general, she felt my body was used to the name brand and did not want to switch me in fear of less seizure control. The way I get around the fight with my insurance company is that she prescribes me Keppra XR, which there is no generic for. I know in the future this will be a battle, but it works for now.
July 9, 2010 at 5:08 pm #1029Jaime
It is funny that I felt so much better (cognitively and fatigue level) on the Lamtical, but once I hit the proper dosage I had more seizures then ever. Even the dose increases were so easy for me. Then Vimpat which I had a horrible time getting up to dose, actually controls my seizures. I agree that sticking it out is really important. It took me over 2 weeks to adjust to Vimpat. My doctor was shocked that I stuck it out for that long, but I am so happy I did. Changing medicine does wreak havoc on your body. I wish doctors warned us about that part.
July 9, 2010 at 9:36 pm #1031Deb B
Well it seems like I’ll be switching to Keppra partly because there is a potential serious rash issue between Depakote and Lamictal (when they are used together, which is necessary to wean off one and onto the other). The Topamax just didn’t sound like what I wanted to deal with because of the mental issues. I need to be able to function at work, which is a very mentally challenging job. So, it’s Keppra. My neuro today told me that those things you wish to say to certain people when they irritate you or say stupid things, but you are able to “bite your tongue”, often come out on Keppra. He says you have a harder time on Keppra to watch what you say. He had one person he had to take off Keppra because they were getting into trouble at work. It always seems to be something. These AED’s are all nightmares. I will appreciate any helpful hints anyone can give me about handling Keppra side effects.
July 5, 2010 at 8:20 am #1027Bonnie
Hi Deb, Jaime –
You both mentioned you aren’t sure whether it is the surgery or the meds which makes your brain feel “dumb” – I am guessing it is likely a combination as the side effects of the various meds are varied for different people, and the surgery does leaving lasting side effects. I’ve spent my 2-1/2 years since surgery trying to address the “dumb” effects – working on memory and cognition – reading, studying, research, learning new things, memory exercises, games – using the internet for much of this.
While I am still forgetful at times – esp. getting the wrong word or can’t think of a word (and my neuro has attributed this to my surgery and resulting scar) – my more significant on-going effects are the neuro-physical. I know my surgery/remaining brain scar are the cause. I’m just not sure how much the keppra contributes to this. If I was given a choice of meds, I think I would stick with the keppra. I’ve compared side effects and am dealing with kepppra’s. And, I respect my neuro who prescribed the keppra.
BTW – you can google keppra versus lamictal and find lots of discussion about these 2 meds.
Deb – you wondered whether your bone loss might be tied to a thyroid issue. Have you had your thyroid levels checked recently – have they been checked regularly so the current evels can be compared?
With my weight gain, I asked for another thyroid check (altho I do get them yearly anyway) – and they’re fine.
And you also mentioned you have new or additional BTs. What’s going on there – could they be contributing to your seizures, etc.?
Jaime – you mentioned dosage making a big difference re side effects. I agree. My dosage was increased due to small hand seizures & some other effects (auras). I plan to ask my neuro about reducing my dosage at my next appt (in a few months) in hopes that some of this fatigue can be reduced.
Hope you both are doing OK!
June 7, 2010 at 9:58 pm #1025Jaime
Honestly I have heard the most/worst side effects from Dilantin, so I would think that any other meds will seem better. But I have no experience with Dilantin. It is sad, but it is truly trial and error. I have been on seizure meds since a few days before my surgery, so I often wonder if it is the surgery or meds that are making me “dumb.” Good luck with new meds. I have been on the trial and error method for almost a year, but Keppra has been the only one I have stayed on this long. I am very sensitive to meds, so I usually can only handle the smallest dose possible. Dosage makes a big difference in regards to side effects.
June 6, 2010 at 7:08 pm #1021Bonnie
Hi Deb, Jaime!
Deb – Dilantin causes bone loss. When I told my dentist & gyne, they were both concerned about bone loss (used it for ~2 months). Since you were on Dilantin for a year and lost a lot of weight (and are you perimenopausal?) – that (or these) could also account for the bone loss. But in any event, if your neuro recommends something dfferent, I think that it is good your neuro is being conservative on this.
My side effects re keppra include occasional muscle pain, stiffness, fatigue/sleepiness mid afternoon in particular, heavy sleeper needing a solid 8 – 9 hours, much harder to wake up in AM, increased emotions & anxiety. But any of these could also be due to my (ex)mengioma and craniotomy, too.
I did take B vitamins and am not sure if they helped (yes and no) – but have read on the epilepsy forums of many for whom the Bs (especially B6) help. I am planning to purchase a whole food based form of B complex as the “chemical” form is missing the additional “nutrients” that are found in whole foods high in the B vitamins. I think the Bs help more than not for me.
Also, I drink a lot of water – to help metabolize the keppra.
I also have major weight gain following an initial loss following surgery 2+ years ago – and am an still trying to address it. Unable to link to keppra. I think that I lost a lot of muscle mass and therefore my metabolism slowed down (not to mention the menopause thing!). I am trying to find the right caloric intake/exercise mix. I used to be very active – bicycling several 1000 miles/year, running/walking, free weights, step/floor aerobics. Now I am walking, floor aerobics, lighter weights and bands (as unable to ride, run nor lift the weights I used to). But I am working on it! 🙂
Jaime – I like the crazy meds site – it cracks me up. But has a lot of good info on it (altho have to search some for it). And, it also has a discussion forum on it so can research other peoples questions re the various meds. 🙂
Also – I recall a published study (in a med journal) that exercise while carrying weights (walking with a weighted vest was used) actually reversed bone loss in post menopausal women.
June 7, 2010 at 9:42 pm #1023Deb B
Yes I have read the Crazy Meds site and it makes it seem like ALL the seizure meds have nasty, nasty side effects. I actually was at a point about 4 years ago where I was tapering off meds in hopes that I could quit using them altogether. Then, surprise!! New tumors. So, that’s no longer an option and my neuro just laughs when I ask why I have to take them. Scar tissue, tumors, you name it. I actually think that the seizure meds and their side effects are worse than the surgery itself was. It took me 6 months to recover from my crainiotomy, but I was bound and determined to get “back to normal”. And I am constantly mentally challenging myself at work to make the old brain work. But these meds make me really feel stupid sometimes — but then I think, hey, I have a very large “hole” where part of my brain used to be . . . I function just as well as other people with whole brains do. Haha.
June 6, 2010 at 6:26 pm #1018Jaime
Seizure meds effect everyone differently. I have had the best experiences with Keppra, yet I know a ton of people that have not. It has worked great for seizure control. It main side effects I have heard of are Keppra-rage. It can make you more aggressive, less patient, but vitamin B works great to counteract this side effects. I had a bad reaction to Lamictal and it increased my seizures greatly. According to my neuro, this is not a common side effect but can happen with any seizure med.
http://www.crazymeds.us/ Is a great web site that uses one man’s first hand experiences to explain medications. He has a great sense of humor about them.
June 5, 2010 at 9:28 am #1010Deb B
I am currently taking Depakote and have done so for almost 15 years with success. Now however I find I have osteoporosis due to the bone loss Depakote causes. My neurologist (he is new within the past 6 months) wants to switch me to something else because of the bone loss and weight gain issues. My previous neurologist never told me about the bone loss, so I am not happy about that needless to say. But what to switch to? New neuro says Keppra, Topamax or Lamictal. Anyone have experience with these and what are the pros and cons of each? What would you take if you had a choice?
June 5, 2010 at 4:18 pm #1011Bonnie
Hi Deb – I did a google search and found this:
Two other “drug” info sites I looked at did not list bone loss as a potential side effect. But this one does. Perhaps bone loss has been only recently linked with depakote.
The epilepsy.com web site does mention weight gain, and bone loss toward the bottom. It also recommends taking calcium and vitamin D and getting a bone scan.
Why does your new neuro think weight gain and bone loss are due to the depakote (as opposed to something else)? Have you been given any recommendations re increasing bone mass (or, will you see your gynecologist or regular doc about this)?
I take keppra (generic) for simple partial seizures. It works well for me. I do have some of the more common side effects but do my best to deal with them via lifestyle. One plus is that keppra is metabolized via your kidneys rather than liver, so there are few if any drug interaction issues. It is recommended that plenty of water be drunk to aid in the metabolism of the keppra.
I know others on Its Just Benign use the other meds you mention – hopefully they will respond.
June 6, 2010 at 12:41 pm #1016Deb B
My neuro is someone I have only been seeing since the end of 2009. He specializes in epilepsy treatment and one of the first things he said to me was he wanted me off Depakote because it causes bone loss and weight gain. Well for a year after my crainiotomy I took Dilantin and never felt like eating and had gotten very thin. I was switched to Depakote after developing an allergic rash and one of the first things I noticed was an increase in appetite and being constantly hungry. I did put on weight and spoke with my then neuro about the weight gain and she said basically “deal with it”, so long as it controls my seizures it would be the downside side effect. So, I have had to learn to eat very little and exercise to keep my weight in check, however it is always an uphill battle as I age. When my new neuro mentioned it I asked for a bone scan first as a baseline. It came back showing bone loss and that despite taking calcium, drinking milk, yogurt, eating mostly organic, healthy foods, etc. Clearly (to me at least) it’s the drug. If I switch and things don’t improve then I would suspect something else, like thyroid issues??
What are your side effects from the Keppra?
January 1, 2009 at 12:00 pm #1009Beth Rosenthal
Please come talk about your personal experience with seizure medications or ask questions.
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