Feeling Helpless

[lbranch]

My name is Lori. My daughter (15) started having seizures three months ago. She has complex partial becoming generalized. She started Keppra after her second seizure. The Keppra has worked perfect, except for the emotional swings. She has just started her fourth medication for the auras. Tranxene, Trileptal (which she had a horrible reaction to), Topomax (which caused her to lose 6 pounds in two weeks and gave her the 'pins and needles' sensation, which is also her aura!) and now Vimpat. She's been on Vimpat for four days. My question is really about Vimpat. The pharmacist was reluctant to give it to me and had me call the neurologist to verify because it is really for persons 17 and older. Is anyone else out there under 17 on Vimpat? If so, do you mind sharing your dosage and any side effects you have. Also, I can't seem to find a support group for parents. Do you know have advice on how to find a group that physically meets to provide one another support? I've asked the local hospital and her neurologist. I live in fear of sending her school every day, afraid of what will happen. She would perfer to ignore it and be angry about it. She feels yucky from the medicine and is worried that anytime she feels dizzy, off balance, sick to her stomach, etc that she will have a seizure. She's already missed two days of school and they just started their third week. Last question: Any female experiencing more auras or seizures around your cycle and if so did any of you go on birth control and did it help? Thank you. I'm so glad I found this site.

 

[skeeter1271]

I can only say that around my cycle i have never noticed a difference. however my husband has. not sure if it is due to the epilepsy drugs or not.

with that said you asked many other questions that I cannot answer about specific meds as i have never taken any of the ones you spoke of.

However I can relate to being an angry, pissed at the world teenager who was tried on multiple combinations of medications because one never stopped all of the seizure activity I had.


Please allow your daughter to be angry. I was told to get over it, and move on, stop feeling sorry for myself. my parents had good intentions but no one ever addressed my anger and that in turn made me feel resentful and depressed. she will have to figure out how to deal with peole at school who are not going to be kind to her if she has a seizure there. which means a lot of support.

while you have done nothing, she will take things out on you because you are mom and won't stop loving her. make sure she stays involved in things she enjoys. I have three kids, a masters degree and work full time.

life does go on but when you are fifteen it is very hard to see past that day. good luck and show her this site so she can connect. i wish i had it when i was her age.

 

[survivor]

Sad to hear about ur little angel! Well, I have not had vimpat, but can tell u that i have more seizures around my cycle days.The Anti Epileptic Drugs are basically of two types- enzyme-inducing and non enzyme-inducing. The non-enzyme-inducing AEDs do not interact with Oral contraceptives. These include valproic acid [Depakote], gabapentin [Neurontin], levetiracetam [Keppra], tiagabine [Gabitril], vigabatrin [Sabril], zonisamide [Zonegran], and pregabalin [Lyrica]. Therefore there are no concerns regarding the treatment of seizures or increased pregnancy risk with these particular AEDs when used alone or in combination with each other.The enzyme inducing AEDs increase the ability of liver to break down the oral contraceptives which increases the risk of contraceptive failure, leading to unintended pregnancy. These AEDs are phenobarbital, carbamazepine [Tegretol, Carbatrol], phenytoin [Dilantin, Phenytek], felbamate [Felbatol], topiramate [Topamax], and oxcarbazepine [Trileptal].

 

[Nakamova]

Hi lbranch, welcome to CWE!

Seizures that are related to the cycle are called "catamenial epilepsy" so you might want to search using that term to get more info. Generally high or fluctuating estrogen levels and low progesterone levels can trigger seizures. So in some cases, progesterone supplementation can be used as a treatment. For birth control, an IUD with progesterone would be a good bet (though probably not for a 15yr old), since it is less likely to be affected by an anti-seizure meds. Unfortunately there is no single hormonal and/or birth control treatment that has enough data behind it to predict success.

With the Vimpat, is she up to the full dose yet? It's possible that the side effects (like the dizziness) will go away as her body adjusts. If you have any concerns about the size of the dose, the appropriateness of Vimpat for a teen <17, or any potential side effects, don't be shy about calling your daughter's neurologist to discuss it.

You may be able to find a support group be contacting an Epilepsy Foundation chapter in your area. http://epilepsyfoundation.ning.com/groups

 

[lbranch]

Thank you for the helpful information. Sometimes I'm feeling desperate and just want to grasp at everything! I am constantly asking "What if", "What about this or that"!

Skeeter1271, thank you for your post. I talked with my husband last night about our saying the wrong things to our daughter, thinking they are the right things! As an adult it is easy to see that things could be a whole lot worse, but a 15 yr old girl probably does feel like it is the end of the world. I'm sure she does feel like crap except when she's asleep! I want her to talk about it with someone who understands, but at this point she'd prefer to ignore. I am planning to show her this site and see if she'd be willing to take a look at it.

I'm a nervous wreck because she'll be going on a weekend retreat with her youth group this weekend. I'm thankful that two parents I know and who knows what is going on with her will be chaperoning and there will be a doctor attending as well. Just really nervous that she'll forgot to take her medicine and then she'll be embarrassed if she has a seizure in front of all of her friends. I've been the medicine police since this all started, giving her the medicine every 12 hrs like clockwork. This may be a tough lesson!

Nakamova, she is currently taking 50mg 2x day. Her neurologist said to start there and hold until she seems us again. My daughter is to have a video monitoring EEG where she will be observed for 72 hrs and then we'll discuss results with doctor. Anyone had one of those done? We had an MRI, CT, EKG and sleep deprived EEG that all came back normal. Worried about this 72 hr EEG because the paperwork says they may reduce medicine to entice a seizure. I'm not so sure I want that to happen. Things have been good so far.

 

[Nakamova]

The point of the video EEG (also called vEEG) is to try and pick up seizure activity that hasn't shown up on other tests. So as scary and unpleasant as it may seem, your daughter may need to reduce meds in order to produce one. She will be under observation, so she'll get medical attention right away as needed. Below are some threads from the CWE archives about vEEGs:

http://www.coping-with-epilepsy.com/forums/f23/veeg-12981/
http://www.coping-with-epilepsy.com/forums/f23/veeg-ambulatory-eeg-13175/
http://www.coping-with-epilepsy.com/forums/f23/video-eeg-12327/
http://www.coping-with-epilepsy.com/forums/f23/veeg-progress-12215/
http://www.coping-with-epilepsy.com/forums/f23/veeg-results-12248/

It must be tough to worry about your daughter so -- but it's your job It sounds like there will be plenty of supervision in case she does have a seizure. If she does have one, perhaps it can be a teachable moment for her and her friends. At some point she might want to have a good talk with them all explaining what a seizure disorder is, give them some facts (and debunk some myths) about epilepsy. Not easy for a 15-yr old, but kids can be surprisingly understanding and resilient especially when they understand things better.

 

[gowings83]

Hi Ibranch, I wanted to say this, while I may not know what it's like for you going through this, I do know what it's like on her end. I started having lots of seizures at 15, many in school as well. I don't know how your schools are, but the teachers ect. at mine were understanding of it and quite helpful. As for the students, most were also understanding and thought nothing of it. For all you and her know she's not the only one in school with epilepsy. Thankfully for me there was another student with it who obviously knew what to do about a seizure, to just let me have it and to help out AFTER the seizure, not try WHILE I'm having it. It's nothing to be embarrassed about. Just remember, it's not the 1700's any more, we are not "possessed by the devil" so there's nothing to be worried about.

 

[caraagrace]

Hi there - I am 23 and have only had two seizures, one in May and one this past Saturday (both in my sleep and while I was on my period). My neuro just prescriped me Vimpat, starting at 50mg twice a day for the first week and working my way up to 200mg twice a day in a month. I haven't taken it yet so I have no idea what the side effects are going to be like but I am very worried about it. I just got my results back from my second EEG and my first MRI and everything came back normal which is really disconcerting! Tell her to hang in there and stay positive

 

[momof3boys]

Hi! I saw your post and wanted to say hi! Im a 30 yr old female who has had epilepsy all my life. I take Keppra XR for my seizures, and I also take a Vitamin B6 complex to help with the Kepprage, or mood swings. You can try giving your daughter a B6 complex vitamin to see if it will help with the mood swings.

I tried Vimpat for the first time in March of this year and was on it for about three weeks. The medication wasnt a good mix for me. It caused alot of depression and thoughts that were not good. Im a mom of three little boys, and when I could tell it was affecting the way I am with them, I reported the changes to my dr and they told me to cut my dose in half and see if that helped. I got up to 100mgs a day, they wanted me at 200mgs a day, but tried to cut it back to 50mgs a day to see if my mood got better, and it didnt. So, I got off that drug, tried another medication, and had an allergic reaction to that one, so Im back to just taking Keppra XR for my seizures.

 

[jyearta]

Hi I'm glad you found this site. I think you will find alot of inform. that help.

You asked if anyone went on birth control pills to help.

I did take birth control pills and I think these made my seizures worse, didn't put it together until not long ago.

Please know that I was 19 years old and I was on dilantin and phenob.

 

[deeds]

Hi, I am 52 and I have always had an increase in seizures around the time of ovulation as well as just prior to my period. This is called "catamenial epilepsy" and it is well documented. The mood swings or PMS dont help. I once took the pill, many years ago but it failed as a result of the Dilantin. I had read about that as a possibility and my dr at the time said I was being silly....... a miscarriage and a d&c later, I found a new doctor. One thing I have learned for sure is that we need to be the captains of our own ships!
Now I am trying to slowly wean myself off Dilantin....... any hints would be most welcomed! I went from 300mg to 250 for 2 weeks and everything was great. Then I dropped to 200mg and after 3 days, TONIC CLONIC WITHDRAWAL!!!! My seizures were only ever Simple or Complex Partial. Thanks to all of you.

 

[jyearta]

I am dropping the dose of my dilantin SLOWLY.

I was taking 500mg a day, trying to get down to 400mg a day.

I have 2 sm. seizures wednesday evening, get be because I was put on antib. that same day.
As I have gotten older I am SO sensitive to medic. any kind, can't take tylenol,

I am so on klonopin.

I hope to stay on these two medic. - my seiz. don't come as often, don't last as long, not as sever as before, and I don't have to take something for depression. Now having said all that--I am having problems with B-12 defic. due to dilantin. I am B-12 shots

I hope get go well for you. I would like to know what they change you to, if you don't mind sharing.

 

[deeds]

I am dropping the dose of my dilantin SLOWLY.

I was taking 500mg a day, trying to get down to 400mg a day.

I have 2 sm. seizures wednesday evening, get be because I was put on antib. that same day.
As I have gotten older I am SO sensitive to medic. any kind, can't take tylenol,

I am so on klonopin.

I hope to stay on these two medic. - my seiz. don't come as often, don't last as long, not as sever as before, and I don't have to take something for depression. Now having said all that--I am having problems with B-12 defic. due to dilantin. I am B-12 shots

I hope get go well for you. I would like to know what they change you to, if you don't mind sharing.

I am now taking Keppra 1,000, Clobazam 30mg, Lamictal, still in the titration phase and I am being weaned off Dilantin. Hopefully I can do this without any more Tonic Clonic Seizures! Even if it takes a very very long time......
The lamictal, in its infancy is very good for my moods, just praying that I don't get "the rash".

 

[jyearta]

Hope this is the ONE for you.

 

[deeds]

The Lamictal Rash

Well, after 3 weeks of Lamictal titration, one week into 50mg...... need I say more?
The dreaded rash and the immediate cessation of Lamictal. I am hoping that the dose was still too small, only 50mg to cause any kind of withdrawal.
Last weekend was a nightmare as I dropped my Dilantin from 300 to 200mg after 2 weeks at 250. Now, I am back at square 1. Dilantin dosage back up to 300mg, just praying that I wont have another seizure.
I am going back to NYC next Thursday for a 72 hour ambulatory eeg.
i am upset but i know it could have been worse.
Also, last night in all my reading I noticed that people allergic to SULFA were more likely to get the Lamictal Rash and yup......allergic to Sulfa, I am.
:bigmouth:

 

[momof3boys]

Well, after 3 weeks of Lamictal titration, one week into 50mg...... need I say more?
The dreaded rash and the immediate cessation of Lamictal. I am hoping that the dose was still too small, only 50mg to cause any kind of withdrawal.
Last weekend was a nightmare as I dropped my Dilantin from 300 to 200mg after 2 weeks at 250. Now, I am back at square 1. Dilantin dosage back up to 300mg, just praying that I wont have another seizure.
I am going back to NYC next Thursday for a 72 hour ambulatory eeg.
i am upset but i know it could have been worse.
Also, last night in all my reading I noticed that people allergic to SULFA were more likely to get the Lamictal Rash and yup......allergic to Sulfa, I am.
:bigmouth:

Yup, turned out the same way for me too. Im allergic to Sulfa medications, and when my neurologist had me try Lamictal in April of this year, I was on it for two weeks, and was having a reaction to it. I even brought up to him that I was allergic to sulfa, and was informed by his people at the office that the two had no connection and I would be fine! Within three days of trying it, I started to get what I thought looked like acne around my jaw line, but those turned into very scabby looking deep sores. They cracked open and bleed like crazy, they hurt so bad. Once I went up in dose, my glands in my neck area got so sore, and began to swell. My neurologist said it wasnt possible to get that from the Lamictal. He said I had a sinus infection, told me to see my primary care dr. I went in the next day, and she ran blood tests, did a test to see if I had a infection, but everything came back normal and clean. When she found out I had just started taking the Lamictal, she looked things up and said I was having an allergic reaction to the medication and to get off of it ASAP. I contacted my neurologist, and he was in disbelief. I just saw him August 31st, and he said I am a rare case that he's hardly seen. I should have reacted in a good way to the medication, but i did the opposite. I mentioned to him about being allergic to sulfa medications, and he said he never heard of that being an issue with people taking Lamictal. That is just one experience I will never forget.

 

[deeds]

My heart breaks for all of us. I am so thrilled that I found this community.
These "specialists" can watch hundreds of seizures but most of them don't know what it is like to live with them and all the unknown factors. My neurologist told me that my "seizures" were totally stress induced, she even put the "S" word in quotations and passed my telephone # along to a psychiatrist. My seizures are real and so is my anxiety, how could it not be real with all the safety issues we deal with daily. I have sought a second opinion in the U.S and it was there that I was given the Lamictal. I felt amazing for 2 weeks! Two whole weeks of feeling great. Yesterday when the rash started I spoke to the Dr. in the U.S. I sent him pictures that I took with my Blackberry and emailed them to him. He responded immediately, YES..... that is THE rash but not THE life threatening rash. I even asked him to check and make sure that Sulfa Allergy was in my file and it was. I am glad that I didn't get any further into the drug as I was petrified that I would go into withdrawal. My kids are both very upset by what has been happening, and I cant really console them when I am having multiple seizures. Luckily they are 21 & 24, but it is still difficult for them. I am divorced and both kids were away but they are now back at home living with me. Home is sadly not a very safe place to be with uncontrolled seizures and no warnings. It will be interesting to see what the neurologist says next. It sounds like every drug is a different kind of disaster and trying to wean off them, a whole other nightmare.
My last Lamictal was Friday am, and so far with 300mg Dilantin, 30mg Frisium and 1,000mg Keppra, I have no signs of withdrawal.... yet.
The rash is bright RED and very itchy and it is mostly along my thigh, bikini line and a few spots on my leg.
Do you know anything about the Modified Atkin's Diet? Maybe that is where I go next.....
Please keep in touch!

 

[momof3boys]

My heart breaks for all of us. I am so thrilled that I found this community.
These "specialists" can watch hundreds of seizures but most of them don't know what it is like to live with them and all the unknown factors. My neurologist told me that my "seizures" were totally stress induced, she even put the "S" word in quotations and passed my telephone # along to a psychiatrist. My seizures are real and so is my anxiety, how could it not be real with all the safety issues we deal with daily. I have sought a second opinion in the U.S and it was there that I was given the Lamictal. I felt amazing for 2 weeks! Two whole weeks of feeling great. Yesterday when the rash started I spoke to the Dr. in the U.S. I sent him pictures that I took with my Blackberry and emailed them to him. He responded immediately, YES..... that is THE rash but not THE life threatening rash. I even asked him to check and make sure that Sulfa Allergy was in my file and it was. I am glad that I didn't get any further into the drug as I was petrified that I would go into withdrawal. My kids are both very upset by what has been happening, and I cant really console them when I am having multiple seizures. Luckily they are 21 & 24, but it is still difficult for them. I am divorced and both kids were away but they are now back at home living with me. Home is sadly not a very safe place to be with uncontrolled seizures and no warnings. It will be interesting to see what the neurologist says next. It sounds like every drug is a different kind of disaster and trying to wean off them, a whole other nightmare.
My last Lamictal was Friday am, and so far with 300mg Dilantin, 30mg Frisium and 1,000mg Keppra, I have no signs of withdrawal.... yet.
The rash is bright RED and very itchy and it is mostly along my thigh, bikini line and a few spots on my leg.
Do you know anything about the Modified Atkin's Diet? Maybe that is where I go next.....
Please keep in touch!

I was on Lamictal from around April 20th Through May 6. So about the same time period as you, (2 weeks). Ive heard of the Atkins Diet. I was dx'd with Epilepsy at 18 months old, and got to have the best Pediatric Neurologist ever growing up. He was in Omaha, Ne when we first met him, when we lived in western Nebraska. We traveled all the way to see him due to him being the best dr we ever had. We moved across the state, thinking we were getting closer to him, then he moves to Kansas City, MI. So the closer we got, the further he went! LOL But he was a great dr. i saw him til I was 19, he commented I could stay as long I needed. But he then retired after many years of helping children with epilepsy. It was him, that brought up the Atkins diet to my parents. He said its a VERY strict diet. You cant even have toothpaste! He explained if my parents did try it on me, i would have to follow it for at least 2 years. My parents thought it would be too stressful on me, so they chose not to do it. But as the years went on, I was on different medications, switched to others due to bigger seizures coming about, or not wanting to stay on one too long due to the side effects that can come about after being on the medications a long period of time. I recall trying alot of different medications in my youth days. For the past 12 years, I was on Keppra and Carbatrol. Until this year, I stayed on those two medications. Im just hoping and praying that the Keppra XR holds my seizures over and next time I see my dr, which is in August of 2012.

 

[deeds]

I hope you have continued success with Keppra.
Apparently I am not on a very large dose.
The diet doesn't sound fun, at all.
It will be interesting to see what lies ahead.
Being single, it would be so nice to get on with my life, and not be a PATIENT for life.
We are brave souls, indeed.....

 

[momof3boys]

I hope you have continued success with Keppra.
Apparently I am not on a very large dose.
The diet doesn't sound fun, at all.
It will be interesting to see what lies ahead.
Being single, it would be so nice to get on with my life, and not be a PATIENT for life.
We are brave souls, indeed.....

Yes, there are alot of us out there with Epilepsy. The posts Ive read from others who have difficulty with medications, and alot worse seizures than what I have, I feel blessed that I dont have larger seizures like I use to have. I hope the Keppra holds me over too. Being on it for over 12 years now, Ive seen a great outcome with it so far. The headaches was by far the worst symptom Ive had from it. If I would have known about the Keppra XR and the difference it had, I wish I would have been on that sooner, rather than suffer all those years with the terriable headaches. Apart of me is eager to see what my dr will say next year. He seems to think that I can possibly get off the Keppra XR and be seizure free. But from what the PA said, in the same office, she see's it differently. The VEEG clearly states I have seizure activity going on in my left temporal lobe. She is glad I am off of the Carbatrol, and so am I. I feel like Im a different person now. I feel more alive and I have more energy. Im just worried of feeling that "seizure feeling" again, when the time comes that my dr tries to take me off Keppra XR. But for now, Im going day by day, and praying each night that the next day I remain seizure free.