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switching seizure medicines
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An_251845 posted:
My doctor has decided to switch my medicine from dilantin that I just started and gabapentin that I have been on for 14 years with a previous medicine that has been causing problems since I lost weight. Well this means for a 5 week period I am on 3 different seizure medicines. in the last 2 weeks I will start taking less of the dilantin and completely drop that after the 5 weeks is over. i will then be on keppra and gabapentin. depending on how this works I will also see about dropping the gabapentin as well. So my problem right now is the multiple side effects. I am having anxiety, shaking, and drowsiness. so basically my mind is racing, i feel at the same time I could sleep for days and I shake and have trouble gathering my thoughts. at night i have been taking melatonin which helps me get to sleep. when should i be concerned that the side effects are too bad? I am currently working with my job to get short term disability until some of the side effects at least calm down. any advice would be appreciated.
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dancer86442 responded:
Hello An_...,

Are you saying the Dilantin was causing problems or the Keppra?

So far, the side effects sound typical. As for how long they will last, well, that is hard to say. Why? Becuz, it will depend on Your system & how it tolerates the removal/addition of the meds. It is unfortunately an 'individual' experience. But, I will take a Guess & say the worst of the side effects Should diminish/cease w/in a week or 2 After you have taken your final Dilantin medication. It's really hard to say since you are adding another med, also. I will suggest that you call your Pharmacy & see what they have to say.

I would advise you to try a de-tox Juicy, but, I'm not sure if that will help, since you are going on another med.

Please, notify your DR if symptoms get Worse! Keep us updated. I will be worried about how you are doing. Hugs!

Love Candi
 
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jenbayly17 replied to dancer86442's response:
I really appreciate you responding. Each day seems that one thing remains steady which is that mornings are the worst time of day for me. my logic of this is because I take the dilantin, keppra, and gabapentin all together at night and in the morning. by the time I get to the afternoon I am feeling the best. I did check with the pharmacy about the shaking and anxiety because I was not sleeping well. they recommended melatonin for sleeping and said that sleeping more should help with the other side effects. I have slept more since I got the melatonin. I had to add a morning pill yesterday of the keppra which I think might be helping with the anxiety a little. I know it is different for each person and I luckily have great friends and family that listen to my anxious jabbering. It is very slight but seems to get a little better with each day. it is just frustrating to not be able to gather your thoughts quickly and to feel like you have to have other people around in order to function somewhat normal. I have great people in my life constantly checking on me so don't worry about me to much.
 
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saxofone1 replied to jenbayly17's response:
Hi jen,

Welcome to the group. What you have shared sounds so so familiar.

I have experienced much of what you're dealing with now. Most of us have. I was told by my doctors that such feelings are common. The body is adjusting to the absense/decrease of one med while reacting to the presence of a new one. Increase, decrease, new addition(s), eliminate, etc. A rough ride for sure.

I went through such feelings a few years ago when Vimpat was removed from my daily meds. I also went through it after my lobectomy in '02 when we started the decreasing/eliminating process. I was on four prior to the surgery.

It is very frustrating when the meds hold us down more so than the actual seizures. The 60s are gone. Going through life dopey is no fun.

Nice to know that you have people in your corner. Do keep us updated whenever you can. Simply drop in to rant your frustrattions.

Candi, again you're on top of things. The concern, passion, and knowledge you share is appreciated by all of us.

Hugs to everyone,
angie
 
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jenbayly17 replied to saxofone1's response:
I just happened to spot this community group when I was researching side effects, I have never been a part of any group for epilepsy but I honestly haven't had this many issues in my life health wise at least. I had been fairly stable with my seizures the longest periods between seizures being 5 years. all my problems started being more serious when I lost weight. I am 5' 3" and was 261 pounds. my weight loss was intentional of course. some people in my family and friends started having health issues and that and a friend wanted to start a weight loss program together so I said yes and over a 1 year and 9 month period i lost 120 pounds. i felt better than I ever had because I had been overweight since childhood. but this is when my sodium went way low from my previous medicine. My new neurologist assured me that losing the weight was the right thing and that we will get a new medicine started instead. i know it would be stupid but going through this makes you question whether you should just gain weight again and go back to the other medicine. I don't really want to gain it back but it sometimes crosses a person's mind. i was exercising about 4 or 5 times a week. I just want to get back to that. again I want to thank any of you that take the time to read my rambling discussions and especially to those of you that respond that remind me that there are others that have experienced similar things. have a great weekend and happy mother's day to all the mom's out there.
 
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dancer86442 replied to jenbayly17's response:
Good Morning Jen,

I found this group when searching for drug Info, also. That was 20 yrs ago. I became 'addicted'. First it was all the different stories others' had to tell. It helped knowing I wasn't Alone! I saw the need for 'Learning More'. Not just for me, but, for others' who were newly diagnosed & confused by answered or unanswered questions. My experiences were not enough! 20 yrs later, I still find the Lack of Info from DRS appalling. The lack of Awareness, by the public, even Worse. So, I am glad you found us. Another Voice is Always Needed & Appreciated. Sharing your Story may Help others in the future.


Congrats on the weight loss! I do Hope your Medication doesn't add the weight back. If it does you can always Insist on another medication. BTW: You are starting Keppra. You should take B6 w/ this med if you want to avoid another Side effect. Keppra Rage. It can't hurt. I have mood swings on my med. They didn't appear till my son was 5/6 yrs old. But, I never related it to my med. New Research has proven it. To late for me. I lost my job 2 days B4 they announced the findings.


Rambling??? I'm a rambler, also. So, go ahead. I will be Listening.


Have a Great Weekend. Thank you for the Mothers Day Wish. Hope your Mothers Day is a Good one ,too! I got 2 Grown Kids. I'll see my Son today, hopefully. I'm sure my Daughter will call, eventually. No Grandkids, but, not wishing for any rite now, anyway.


HUGS! Love Candi

 
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saxofone1 replied to jenbayly17's response:
Hi Jen,

Congratulations on the weight loss.

Like you, Candi, and probably many others, I too stumbled on ths when I was researching. I love it!!

It is great to be able to share with others who have similiar problems. It relieves some of the pressures many might feel. Some of us are here for answers whereas others are here to lend support or share our personal opinion/experiences.

Check out some of the other stories and share your thoughts. Hope you hang around for awhile. A new voice offers fresh ideas.

Happy Mother's Day to all the ladies out there. I have no biological kids but after 20 years of working in the classroom, I think I qualify. We have all been someone's mother at one time or another.

You rant/ramble whenever you want.

angie
 
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jenbayly17 replied to saxofone1's response:
Angie and Candi
Both of you are amazing and so comforting for what I have been dealing with even with great friends and family I have felt a little bit crazy not having someone who has experienced so many similar things and knows more about epilepsy. I am really drowsy today and for the first time since I have started the switch of meds I got a solid hour and a half nap during the day. I have really struggled to take naps during the day. So I am not sure what each day will hold going forward but with this group, friends and family I think I will get through all of the crazy changes ahead.

Thank you both for the congratulations on the weight loss. Actually since I dropped the tegretol I have lost an additional 13 pounds, not intentionally of course. I currently still at a healthy weight I hope either way it levels out.

Angie you definitely qualify for mother taking on so many children in that classroom. I have been checking out other posts and see that you and Candi have been helping so many people. Bless you both for taking the time you do to comfort others and share your knowledge of the subject of epilepsy. I have told my mom and my husband about you both and told them to at least come to the site to read and participate if they feel that they want to or need to.

Candi I am sure you are a great mom as well and Don't worry i am sure that you will get to spoil some grandkids at some point. I am really curious about the vitamin b6 that I have been seeing you recommend to me and others as well. I feel like a little bit of a pharmacy already because I take meds also for meneiers and a multivitamin that has only 2 mg of b6in in it. But how effective is the vitamin for you at least and do you have any suggestion of what mg bis needed. Thank you both and I am sure I will be talking to you again soon.
Jen
 
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dancer86442 replied to jenbayly17's response:
Hi Jen,

Only 1 1/2 hr nap? HEHE Mine average about 4-5 hrs. But, I only sleep 3-4 hrs at nite, too. Thanks to My med. I am on 180mg of Phenobarbital.

I do hope your Mom & Hubby Do visit us! Caretakers need Support & Info, also. Plus, it may Help them understand what you go thru, yourself. Yes, Epilepsy is not so easily understood by those who don't live w/ it. Even if they Live w/ Us, they still tend to shrug it off. No Big Deal! Unless you are a Child. We learn who are True Friends are Real Quick! But, even family members can be sooo Clueless!

B6. You will find dosage Info in Drug/supplement Info. Be sure to read the Info included. Also, confirm w/ your Pharmacist! ( I know Exactly what ya mean about feeling like a walking/talking Pharmacy. Now, that I don't have a job, I don't use it myself. I guess I should. Especially after reading the Info. But, as long as I get my Nap I don't seem to have any Rage Issues, anymore. I'm gonna chek my multi-vitamin & see how much I Am getting. BTW: When taking vitamins, try to take them at least 1/2 hr B4 your medication. Gives our systems time to absorb Supplements B4 meds. Not sure if you are aware of this. Our meds tend to 'eat' /deplete some of our Nutrients. Also, be sure to tell your Neuro you have added this to your vitamin regimen.

See you soon. Happy Mothers' Day! Hugs!

Love Candi
 
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saxofone1 replied to jenbayly17's response:
Hi Jen,

Thank you and a HAPPY MOTHER'S DAY to you. Do your best to get your family involved with us. Outside opinions are important too.

I started my career with kids as a volunteer while I was taking a break from college in the mid '80s. I fell in love with them. They offered me so much support and love. More than I received from former classmates and family friends. I later got hired by the Mpls Public Schools. After my surgery, I was invited to do volunteer work at a school I had once worked at. I was there for 5 yrs until I moved to Vegas in "07. Unfortunately Vegas isn't ready for volunteers. I would love to do more work with the kids. They have no quivers about my epilepsy.

Candi, thanks for info about taking the vitamins seperately from our meds. I've always taken them with my early meds.

One more thing about vitamins. After I broke my ankle on some black ice, my eps started me on a Vit A &D schedule. They said that many of our meds can weaken our bones and possibly cause osteoporosis. I don't remember if you ever mentioned to us, Candi. Just want to pass that along.

Have you read my story, Jen? If ever you do, I hope you understand what I wrote. Ask any questions if you don't.

Good day to all. Love to your families.

angie
 
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dancer86442 replied to saxofone1's response:
Good Morning Angie,

I just learned about taking vitamins separately, myself. I always took mine at same time, too. No wonder I have Low bone density scans. Not osteoporosis Yet. But, Getting Closer. According to last scan. So, now, I am Trying to change my pill regimen Habits. It does make Sense to take Vitamins B4 meds.


Latest research from UK showed Ladies w/ Epilepsy had insufficient Vitamin D. So, w/ or w/out Anti-seizure meds our bones are at risk. Sure wish they had discovered that Much Sooner! I didn't start taking D vitamin till a few yrs ago, when my Sis was prescribed Vitamin D3 for Depression. I needed to be taking it 30 yrs ago. So, our bone health ain't the only thing at risk due to lack of D. So is our mental health.


Jen, to read our stories just clik on our user ID or Profile pic. Angie & I both Shared our History w/ EP @ WebMD Profile for All members to read.


Angie, is there a Boy/Girl Club in Vegas/Hendersonville??? where you could possibly Volunteer?


Love Candi


BTW: I Had a Great Mothers' Day.
 
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jenbayly17 replied to dancer86442's response:
Hey ladies,
Both of you should have had itchy noses yesterday, I have been talking about you to now my immediate family and friends and my in-laws. I have read over both of your profiles and you both have had quite the journeys with epilepsy. Angie I have noticed nose well kids especially kids under about 10 years old are so great to be around. They are so innocent and they don't know how much you go through but are still goofy and just know that hugs are what make them feel better so they give lots of hugs.
Candi I had also heard about the bone density problems because I was on tegretol xr for 14 years. My previous doctor had me do a scan about two years ago and at that time they said there was no decrease in density that was showing then. I was on phenobarbital when I had what they thought were convulsions when I was a baby. They took me off of it at age 5 and seizures didn't reappear until age 12 I was on depakote until age 18 when I had my 1st grand mal seizure. I was put on tegretol xr and nuerontin then and now the switch to the current meds at age 32. It's been a heck of a ride but now I am trying to figure out short term disability with my work which is a first for me. My doctor is being great about it. It's the deadlines and craziness through my job that is making me nervous. But my hr person and a coworker of mine are trying to make sure that I am hiting all the deadlines. A plus yesterday was that it was the first day for a while now that I didn't cry. I am a worrier as it is so medical bills, paperwork, a car repair to take care of has all been quite overwhelming. But I am learning to take deep breaths. Thank you again. Jen
 
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saxofone1 replied to jenbayly17's response:
Hi Jen,


Alright, a day w/o tears!!! Hope that continues.

What does your family think about us? We would love to meet them. Get them in front of the keyboard so they can introduce themselves to us. They must have questions too.

I asked a girlfriend to get join us in this conversation, Jen. Her name is Dana(screen name clarinet). She had brain surgery shortly before me. Our doctors hooked us up. We're basically sisters now. That's her in the picture with me.

Candi, I will check on the Boy/Girl club. I don't think there is one in the Henderson area. I'm thinking about calling the local libraries and asking them about their summer programs. I'm trying to stay in my area because buses are so spread out that it could be a 2 hr ride each way. Maybe something I could walk to and have paratransit bring me home.

I certainly miss the bus system in Mpls right now. I could get any where. An unlimited monthly pass was $16 when I left. Vegas wants 200. Ridiculous!!!

Jen, think about taking walks to ease your stress. Early in the orning, the city is yours.

Give my hello to your family, Jen. Chat with you soon.

angie
 
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dancer86442 replied to jenbayly17's response:
My nose wasn't itching, but, my ears were ringing. How are you today Jen? Your reply to Angie: I have noted the Same! Kids have been my 'friends' when Adults turn away/walk away. I have done my share of babysitting. Since Epilepsy, babysitting has been my source of Income, when no one else would hire me.

Remind your DR that you are Due for Another Bone Density Scan. I didn't have any problems till DRs prescribed Advair. It is a Calcium 'eater' also. I quit taking it & my scan improved. But, I wasn't taking my vitamins properly & the last test showed I was moving closer to osteo. Now, that I Am taking them Proper, I Hope the next test will show an improvement, again.

Guess what? We have both been on the Same meds. a few extra for me. Pheno's were the Last Try for me. They work & I am stuck on the fence as to whether to wean off them & try something else. Sooo many Newer meds w/ less side effects, supposedly. Why am I on the fence? Cuz, it has taken over 100 yrs of Research to find New side effects for Pheno's. What will these New Drugs show in 100 yrs? No one can tell us.

So what Do you do for a living that causes sooo much stress that it causes you to Cry? Or is it your medication that is affecting you? That is A Big Possibility! I can understand your Financial/work Issues affecting you Some, but, even if you are a Worrier, it shouldn't bring you to tears. Not on a Daily Basis. Mood Swings are the Pitts!

Taking Deep Breaths is good. In fact breathing exercises can actually help you Control seizure activity, also. A Technique called 'Pursed Lip' Breathing Exercise is the Best. Try Yahoo Search for more details. Let me know if you need me to post a Link.

Good Luck w/ disability. I Know Long Term is a real 'hurry up & wait' game, that often requires a Lawyer. You are fortunate that your HR & co-workers are being so helpful. I have never held a Job long enough to Qualify for SSDI. Being Married w/ too many assets in Hubby's name negated the chance to get even Disability, by itself. But, My 'ignorance' when I was your age, stopped me from filing, back when I would have been able to qualify. My GF & Family convinced me that others' needed that Income worse than me.

I like the fact you are telling others' about Epland & me & Angie. It is a Shame that we don't have as many members as we used to. I think Face Book is responsible. Which is alright. Face Book is a much more Social place & there are a Lot of Epilepsy Groups. 'The More the Merrier!' At least people, w/ & w/out Ep, are becoming More educated.

Have a Good day. I've rambled enough. Hugs!

Love Candi
 
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jenbayly17 replied to dancer86442's response:
Good morning,
I hope that your week is going well. I am getting a few more things settled with my job, which has put my mind at ease a little more. I am coming up on 7 years at my job. The first two years I did more of a data entry job but they started downsizing that department and I wanted to be sure that I had a job to go to and volunteered to move to customer service over the phone taking questions about people's loans. The job has it's days. I love my co-workers and there are some very interesting people that call in. You get every extreme and everything in between with phone calls. Some are very demanding but the other parts that make it hard is all the privacy laws, company processes that change quite a bit, and the fact that people listen to your calls and grade them. So it is a little stressful on a normal day but with all the side effects I tried unit didn't succeed. But I have a few little guardian angels that work with me that helped me the day I decided to go home and wait until until my body starts to adjust better.

all my family and friends have been happy I found this site. I have a feeling it is more likely that they would come and read things but not ask anything, or even a few might come to see what I am asking or saying.

Candi how long have you found that you generally go between bone density scans?

2 days in a row now with no crying and yesterday I got myself motivated to do a little housework and cook a meal for supper:) I know it sounds ridiculous but I have had a hard time getting motivated to do normal daily activities until the last two days really. My poor husband. But I feel like this week is a little of a turning point.
I also hope you have a little more traffic on this site. I told a college friend of mine that has had his seizures for epilepsy controlled well for many years that he should join us now and be educated so he can continue not having troubles or see if there are any things he has not been addressing.
I hope that you both have a good day.

Jen


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