Hello! Just joined. A little about me...

Pianogal

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Hi there,

Hope this finds everyone well.

I am 33 yrs old and was diagnosed with Juvenile Myoclonic Ep when I was 16. I was put on Tegretol which was no use. I had a series of Tonic Clonic seizures over the next few years - mainly sleep-deprivation related. Several of them were in different jobs in public, which I was so humiliated by. Esp the reactions I got! (I didn't know YOU had Epiliepsy...etc.).
To be honest I was quite in denial and wasn't taking meds completely regularly. Having said that, my granny was prescribed the same Tegretol at the time, for a trapped nerve in her back!

Anyway, I changed to Epilim and never looked back. I celebrated 10 years' seizure-free this past February, having taken 600mg of Epilim daily since 2002.

I am extremely private about my epilepsy, as I'd imagine many are - simply because of the complications of people in work - and potential employers who I know would not employ me due to lack of knowledge about the condition - despite the fact that I have been controlling it well in recent times.

I have joined this forum to meet others in the same boat and to share our thoughts, feelings and experiences. I have been a long time feeling lonely with this condition - you know - not meeting others with it who I can chat to. I've managed well since 2002, but now this year has 'thrown up' the thoughts of pregnancy, since I got married last year. I have met with my consultant twice recently and he has told me of the risks involved with Epilim + pregnancy; citing Keppra as a good med to change to. I am, to be honest, highly uncomfortable at the thought of changing from Epilim - my 'FRIEND' for this past 10 years. So comes the overlapping of meds; the weaning off Epilim; the total dependence on Keppra (which may not suit me) and then the hoping to get pregnant when I'm solely on Keppra. Lots to think about. Job is a massive issue, tbh, for me. My mother has pointed out that I may have to totally give it up, so I can grab sleep whenever I need it - with the baby (presuming all goes okay there)

So much to contemplate!

If you've read all of this - thanks so much for your time!
It's been so hard to write as I keep the whole thing buried away. So used to that by now!
 

chop456

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Welcome to CWE. I hope all goes well with your meds change. From reading on the forum, Keppra has worked well for many, many people. It is comforting for me to read your story as my daughter (14) was diagnosed with JME 2 months ago. We are still figuring everything out, but I am hopeful. Best of luck to you!
 

Pianogal

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Hi there and thanks for your msg.

It is certainly overwhelming to learn you - or a loved one - has the condition when it's not something we hear about in day-to-day life especially in comparison to other illnesses! A major concern is that you can live your life in a similar fashion as before and, speaking from my own experience, family support was key for me - as was plenty of sleep! I wish you and your daughter the best of everything. Nearly 17 years on, I still value my mum's support hugely and it's a journey we shared. I mentioned that I felt lonely not being able to speak to others on this subject, but I am realising, as I write, that mum was of course there. Medical advances are constantly moving too.

The best of luck:)
 

Nakamova

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Hi Pianogal, welcome to CWE!

I hope all goes well with the transition to Keppra. It does work for many people, and has the advantage that the transition can be relatively fast (compare to some other meds). One thing to watch out for with Keppra is moodiness/anger. If you or friends/family notice a change in your personality, consider taking a B6 supplement to see if it will help with that particular side effect. Will you be on the extended release Keppra? That can help too.

If you can, plan to make things as easy on yourself as possible while swicthing meds. Minimize stress, get plenty of sleep, eat/drink well, surround yourself with positive reinforcement, etc.

Best,
Nakamova
 

Pianogal

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Hi Nakamova,

Thanks for your kind reply. I went down to the pharmacy with my new prescription today and got my Epilim and Keppra to take together. I haven't taken it yet this evening, but I didn't get prescribed XR - I asked about that, and my specialist said it's got the same effect, which to be honest, I was not sure about, though didn't really question him as he's the expert, not me! Now reading your response, I wonder would the extended releaase version be a more suitable one... Well the thing to do is try this out and see how it works for me.

I am scared! Things are settling in life - I have a lovely husband and a job I am happy in. I've had a tough few years with family and would love to keep things as they are right now!......
 

Nakamova

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For some folks, the extended release form of the medication reduces side effects, because there's a more stable amount in the body at all times. But it's fine to wait and see if the regular Keppra works out. You might want to keep a record of how you're feeling once you start taking it.
 

maureen

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Hi,

Welcome to the group! I take Keppra and Clobazam. I'm not terribly wild about it (the Keppra), but I am 2 & 1/2 years seizure free. Keep track of your moods etc. I was taking it twice daily. I found that it was too much for me and asked my doctor if I could take it three times daily. He started to say that I was far more likely to miss a dose if I did that. He doesn't really know me. I've been taking it that way and I don't seem to have quite the same peaks and vallies in energy that taking 1500mg twice daily did. Now it's 1000mg three times daily. I'm starting with a new neurologist in the Fall, maybe I'll look into the XR tablets...they are probably more convenient.

Good luck with the medication change. If you have a question, ask. If someone here doesn't know the answer, they probably can connect you to someone that does!
 

alivenwell

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It's my understanding that medications with the obvious exception of Valproic Acid are safer than the seizures. Also, as a pregnancy progresses, more medication is needed to stabilize blood levels and maintain seizure control. If Keppra XR is chosen, it may be recommended because it may fill in the gaps when Epilim becomes too low.
One cannot fall from the floor. That was my philosophy during a pregnancy and after my kid's birth.
 

huskymom

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Hi Piano gal and welcome to the party!!

I did not have to worry about medications and babies as I was way past those years when this fun started! I do use Keppra, though, as part of my medication cocktail and have not had any problems.

I hope all goes well with the change over. Keep us posted on any baby news!!
 

Isabel23!

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I'm currently on 1000mg of epilim to be controlled. I fell pregnant (wasn't planned) in May 2010. Me and my fiancé (now husband) decided to keep the baby. It took 4 months to get an appointment with my neurologist by which point it wouldnt be safe to change. They advised me of all the problems that could go wrong, and I decided rather than risk further seizures,ci would continue on Epilim but have regular scans and checks and be put on a high risk list when I came to the labour, which just meant more staff on hand should the stress cause a seizure. My beautiful little girl was born in feb 11 and has no issues or effects from the epilim that we know of to date. She is a happy beautiful baby girl who is incredibly bright mentally. Has hit all her milestones on time (although not yet confident to leave the couch and take those first few steps, yet can climb stairs and swim with arm bands on at 15 months, including going underwater....lazy bones). she has however got over flexible wrists, ankles and hips, which health care advisors have said isn't a bad thing, just takes a little longer to learn balance, and proberbly why she isn't walking unaided, but is not connected to the epilim. My plan on hearing this, despite possibly needing a little physio, is to get her enrolled into ballet classes from an early age, and gymnastics class. Take advantage of it I say! The labour was pretty straight forward bar her being back to back and like I say, she is fantastic and so so clever. I have been warned should I want more children it is advisable to change meds (to what I'm not sure), and have atleast a years notice. Me and my husband plan to have another child and will start trying in his return from Afghanistan in Mar 13. Which now means I need to be re-assessed on my medication and may change it. As the last went so well and I know umm
Controlled, I'm tempted not to, but every pregnancy is different and it wouldn't be fair not to. I also don't think I could cope with the guilt of either having a child with difficulties or having to terminate due to difficulties for my own selfish ways. But if I have another seizure, I will loose my job in the army, which has been my life since being 16yrs old. But also my house (as its tied to the job). I have worked hard and got to Sergeant by 24yrs old, and don't want to loose it all, but a baby is a life time, not just the 22 year career I get out of the army. I'm too I'm that difficult position. I'll be going to my doctor tomorrow to get an appointment with my neurologist to discuss my best move when it come to planning the next baby.
 

MaryK

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Hi Pianogal. Hi and welcome to CWE. Always someone to answer your questions or just support you. Take care

Mary
 
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Welcome Pianogal!

You are in the right place.
This is a great site with many helpful and knowledgeable members.

As previously suggested, please be conscious of your moods. My daughter has been on generic Keppra and has been moody, immediately after the dosage. She his now switching to Keppra ER (brand) and I am hoping that it will help her be a little more consistent with her moods. B6 does help and is once again recommended.

Good luck in your transition and with the baby.

Tom
 
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Hello Pianogal, Welcome (I'm new too:))

I think I might have a little info that might come in handy to you or to anyone else on here. Sorry if I get too wordy.

I'm a labor and delivery RN (was until the seizures). I am also a lactation consultant. I have worked with hundreds of pregnant mommas. I want you to be warned that pregnancy itself is a very stressful situation for you physically, mentally, and emotionally. Your hormones will spike up and fall down quickly. You will be moody and sleep deprived just from the pregnancy alone. That being said, try to plan ahead a little. Work less if possible. Take care of yourself, naps, proper nutrition, time alone to process, don't plan too much big stuff during that time, prep the nursery ahead of time etc.

Pregnancy has three parts. First three months is usually the time when most moms throw up a lot, get dizzy spells, have blood sugar unsteadiness, excessive tiredness, ect. Its also the time when the brain and spinal cord are forming so the most critical time to be on safe pregnancy meds. Second three months usually pretty good. Not too uncomfortable yet and usually feel quite good. Last three months... soooo uncomfortable. Getting too big to sleep well. Wake up every two hours to pee (lol) and because you are so uncomfortable. Work is harder, you overdo it with baby showers, and trying to paint the nursery in time.... And this is all for a mom who does not have seizures. Or seizure meds with side effects. I have taken care of a lot of moms who overdo it and end up in the hospital with preterm labor brought on by too much stress. So this is all an attempt to sort of prep you a little for what to expect, and maybe you can take some of this into consideration and try and plan ahead a little to make it less stressful on you. :)

Next topic is the medications. You can do a little research yourself on medications using a book called "Medications and Mothers Milk" by Dr Hale. What you should know about medications and pregnancy is that not all Docs are that informed. You can look up each medication in this book (which is widely used by lactation specialists all over the country). Its important to know that you are actually looking for two things. One is the "pregnancy risk category" and two is the "lactation risk category". The same med may be safe in pregnancy, but then pass in breastmilk and harmful to baby. Or unsafe in pregnancy, but harmless in breastfeeding. So you may want to look this up ahead of time. If you need help, I can help you interpret the data. I only bring this up because if you change to Keppra and its safe now, what if its not safe later. It would be too late to change. More importantly, never assume its not safe to breastfeed just because you are on medication. There are many safe medications, and the benefits of breastfeeding far outweigh the risks in some instances.

OMG... can you tell I love this topic. If you have any specific questions please feel free to contact me. I've delivered babies to moms who were epileptic many times. None had a seizure during delivery. Or should I say, the stress of delivery did not bring on their seizures. I haven't been a lactation nurse very long, so I don't know off the top of my head if there are safe seizure meds. Sorry for that. But I have many friends who could get me the info quickly if needed.

One more thing I will mention ...as a mom myself. Post delivery is even more stressful due to lack of sleep. After reading many posts here, it seems lack of sleep is a trigger for some people. So maybe devise a plan for alternating feedings with dad at night so you can get enough sleep. It takes about a month to heal from a vaginal birth and 6 weeks from a cesarean section. Keep in mind those weeks are taxing on the body because of all the healing taking place and hormones returning to normal levels. Its a bit of a roller coaster ride those first few weeks at home. So prep as much as possible. I really think that would help the most on top of the right meds.

I wish you the best. This is an exciting time in your life. I was lucky to witness miracles on a daily basis everyday at work for the past 15 years. Its just amazing.

I just started Keppra 1000 mg about two weeks ago. I'm having pretty good luck so far??? But I do feel the side effects. Just not as severe as some people. And like others, I understand your hesitation with telling people. I told a good friend of mine recently and she literally took a huge step back from me and finished the conversation like that. I couldn't believe it. I've been leary to tell anyone outside of my immediate circle since then.
 

Helzbelz

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Pianogal- how have you got on with your med change? I just read your initial post and is exactly the same situation I'm in- went for a second appt with consultant today who suggested Keppra but I'm over 10yrs seizure free using 600mg epilim daily and terrified something will happen if I come off it. Fed up of reading all the horror stories based on statistics and would really appreciate some first hand experience from someone in the same position as me. Hope all went well for you. My advice is much appreciated. Thank you x
 
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Hello pianogal - my story is almost identical to yours only my JME started at 17, but I am on epilim enteric and nervously in the process of changing to keppra at the moment. I am also on 600mg epilim enteric really well controlled so I hope keppra will do as well. I really want to get off epilim if I can for pregnancy. Hope I survive the kepprage for the first few weeks haha. How are you getting on? Would be great to get an update.
 

Paelyn

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Hi Pianogal...I have just joined the group too. also was just recently diagnosed with myoclonus epilepsy I'm 49 having been diagnosed with Petite Mal epilepsy at age 9 ...it's difficult to think of changing your meds. Your Comment of epilim as being your "Friend" for years...made me smile...I've also called My Epilepsy "My Friend" its the true meaning of Respecting this condition as a part of who I am. The loyalty of your "Friend" (meds) that's been with you all the way ~through frustration and vulnerabilities ~ doing ist best to Care for you ~ Best of luck to you and the changes you may be facing...you'll be in my thoughts.
 
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Just an update on my meds changeover for anyone in a similar boat. I am on full dose of keppra 500mg x 2 and down to 100mg x 2 epilim,I will be off epilim completely in 2 weeks and solely on keppra yikes. So far so good. I am tolerating keppra well. I have suffered from extreme insomnia everytime I increased the keppra dose for a week, cried a lot and showed a lack of tolerance of lots of normal things. But these side effects are easing with time and a vitamins supplement that includes b6 and magnesium. Since I reduced my epilim again I have got the insomnia back which is scary as JME is triggered by lack of sleep. I am very paranoid this week as I am pre-menstrual and again I was always more prone to seizures at that time of month (catamenial element I suppose) I have magnesium oil and I am tempted to start using it this week to ward off any lurking seizures but I am scared in case it triggers a seizure if minerals are displaced from cells to blood.
Could someone moderator amend the title of this thread to include JME/epilim/keppra so more people could read the thread as it would be more relevant? Hope so. Would love to hear other stories.
 
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Any chance of the thread title being edited to attract more relevant posters?

Thanks,
8):clap:
 
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UPDATE: I have been off epilim for 5 days now and on 500mg x 2 keppra. I have been advised this is a low dose of keppra so if i have any jerks that i can increase 250 - 500mg. So far so good and the "kepprage" has calmed down. I hope things stay good. I do have what i would describe as a "sore brain" not a headache,but i am hoping that is just withdrawal from epilim and will pass in a few days.
Hoping the title of this thread can be edited to include keppra/JME/Epilim.........?
 
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